The Bubbly One is a musical boy. By that I don't mean that he's a savant, but music is his thing. Most of his vocabulary is in song form. I can give him a verbal instruction half a dozen times, and he might respond to part of it. Sing an instruction? He just seems to get it, and he acts on it, whether it's an old instruction, or a new one. Music calms him, excites him, and provides him with a link to the world. Throw his name into a song and he thinks it's hilarious and will want you to do it again, and again, and again! Sing anything from Shrek, The Wiggles or Sesame Street and he'll do his best to join in. What he lacks in words, he more than makes up for with enthusiasm!
Music has a similar effect on me, though I cannot sing to save myself. I associate songs with times, places and people. A passing phrase will remind me of a song I know, and some songs make me very emotional. I know that there are many other people like this, but tonight I saw it in my son with a song that has always "got me", and it blew me away.
Bubbly found iTunes radio on my phone, which had a Muppets station. It turned out The Muppets were the radio DJ's, which was very cool. But then Kermit singing Rainbow Connection came on. This song is one that I've always loved, and which I have a really emotional response to. I have no idea why. I saw The Muppets movie that it was in when I was really little, so maybe it's something from then, but I digress. I paused in the kitchen when I heard it start, and then I heard it. My boy singing along, in the sweetest, most innocent tone he possesses. There were no words coming out, but the sound was beautiful and it came from his heart. After a week filled with him yelling, and occasionally screaming, all I could do was stand there in awe, and just listen.
Of course, I downloaded it straight away. And he played it over, and over, and over again. I can listen to it over and over again, so that was fine, and I sang along with him as he began to dance around the room.
"You like this song Bubbly?"
He stopped twirling and listened.
"It sah!"
"It's sad?"
"Sad"
And he began to twirl again.
And he played it again, and again he stopped twirling here:
Have you been half asleep
And have you heard voices
I've heard them calling my name
Are these the sweet sounds that called
The young sailors
I think they're one and the same
I've heard it too many times to ignore it
There's something that I'm supposed to be;
He'd stopped in front of me and looked into my eyes.
"It's sah, it sad"
I didn't know what to say. Bubbly has never identified an emotion before. He was relaxed, more so than he's been in a couple of weeks. He was smiling, and I really don't think he felt sad, but I think he was identifying that something in the song had touched him, and I said the first thing that came to mind.
"It is kind of sad, but happy sad."
The swaying and twirling recommenced as he sang along, again with no words, but beautiful pitch.
Someday we'll find it
The Rainbow Connection
The lovers, the dreamers and me.
I don't know whether it was the right thing to say, in fact saying "happy sad" was probably a pretty foolish thing to say to my autistic son, who struggles to convey his emotions. But it seemed to make sense to him, because he didn't stop at that point any more.
He just continued to twirl, and sing. It was beautiful, and I could have watched him feel that music all night.
Sunday, 6 April 2014
Saturday, 5 April 2014
Champions
Autism Awareness Day has been and gone, and I have to say that this year, I actually got into it a little. I didn't light it up Blue, though Bubbly went to school dressed in blue (not his uniform), with a gold coin donation for an autism charity. I didn't wear blue, and my puzzle piece necklace didn't look right with my outfit, so I went without. But the day stood out for me, and I actually had a good feeling about it. I shared some stuff on my personal Facebook page, and on my Autism Bubble page, and I avoided all talk of awareness, acceptance, toning it down, lighting it up, etc. What I did, was celebrate my son, and everyone around us celebrated him with me.
I'm certain that there were people who went through April 2nd without a thought given to autism. But in our autism bubble it seemed like everyone at least acknowledged that there was something special about the day, and more importantly, they acknowledged that my son is someone special. It doesn't come from a place of pity, they are genuinely happy for him when he achieves something new. When I bump into people I connect with on Facebook, they ask about him, and they've remembered things that I have shared. Things which I wouldn't have thought others would see as anything significant are mentioned with huge smiles and encouragement.
My boy has champions everywhere, and yesterday, on April 3rd, after all of the fuss had settled down, I reflected on those who've invested so much of themselves in him, and who have championed him over the last three years. The people who are paid to do a job, but for whom their work is so much more than that. We're often so quick to complain, to tell our horror stories. I've done it myself, and I still feel the need to tell others about "The Inclusive Preschool" where Bubbly was treated so poorly. But I really think that we need to celebrate the people who don't just work with our kids, but who give so much of themselves in what they do, and who treat our kids like they were their own. I've written about Bubbly's amazing school, but yesterday, as I watched his OT manage a truly "impressive" meltdown with compassion and understanding, it occurred to me just how blessed Bubbly is to have had so many incredible people in his short life, so I thought I'd write about some of them too.
To backtrack, the meltdown was similar to what we've been dealing with on a daily basis for about a week now. There's been a lot happening for Bubbly. He's into week three of a new medication, which is looking promising but which is having some effect on his moods, eating, sleep and bathroom habits. Not massive effects in themselves, but together, enough to upset his balance. He's also had some changes to the days where he sees his dad, and his teacher's been away. I've also had a lot on my plate, and I don't doubt that he's picking up on some of my anxiety as he's always been very tuned into me. So, the meltdowns have been understandable.
On this day Bubbly had been awake since 3am. He'd held it together all day at school and he was keen to go to OT- but we were early. It's easier to wait in the car with the two boys, and he was happy with the ice at the bottom of a drink I'd given him- until he tipped the ice onto the seat, which was covered in sand, and I threw it out. I couldn't let him eat it, but he wanted to, and that was it- a tantrum started.
His OT arrived then and helped me get him inside, and when we got up there I gave her some money for something she'd picked up for The Little One for me. Clearly I wasn't thinking, because Bubbly rips paper to calm himself down these days. Of course, he wanted to rip and bite pieces off the money, and when he couldn't do that he lost it, and the tantrum became a meltdown. He screamed, he hit himself, he crashed into his OT, he hit out at her and he cried. It was heartbreaking, and I felt hideous for setting him off after he'd done so well at school and for ruining his OT session, which is one of the highlights of his week.
Bubbly's OT is amazing though. I have her to thank for so much of Bubbly's progress, because she understands the sensory world that he lives in, and she's shown me and others how to meet him there. She didn't see a spoiled kid having a tantrum over something small, she saw a little boy who'd just been overwhelmed by his day and his surroundings to the point where he just had to shut down. She reassured him and made sure he was safe until he'd managed to calm himself down (which he did!), and when he was able to respond she offered him the option of staying to play, or going. He plopped himself down on a big inflatable ramp and patted it to indicate he wanted to stay, and she followed where he led. There'd been a point where we'd thought the session was a write-off and we'd have to quit, yet he went on to have a great session. Instead of leaving upset and with the memory of a bad experience, Bubbly walked out of there relaxed, happy, and even talking a little. At home he was chilled and had fun playing with his brother, with the item the OT had picked up for me (saving me a long trip somewhere also- she's awesome!).
This wasn't a one off. Bubbly's OT has brought him to that happy and connected place many a time after a hard day. She is someone we are so fortunate to have found, and who has become a friend as well- and there are others.
I could go on. We've only been on this journey for three years now, yet so many have given of themselves to help my Bubbly Boy make his way in this world, and they not only champion my son, but they also support me. These amazing women aren't just professionals who work with my son and accept a fee, or a wage for their time, they are also a part of our lives now, though many don't work with him anymore. They commiserate when Bubbly is having a hard time, and they cheer with us when he learns something new. They value his beautiful spirit, and they admire how hard he works every single day to be present in our world, which is often so overwhelming to him. They have become trusted friends, who've seen me worried, tired and at my wits end, and who encourage me that he'll get through whatever it is. And when he's done just that, and I say how amazing he is, they just smile, because they know that already.
I'm certain that there were people who went through April 2nd without a thought given to autism. But in our autism bubble it seemed like everyone at least acknowledged that there was something special about the day, and more importantly, they acknowledged that my son is someone special. It doesn't come from a place of pity, they are genuinely happy for him when he achieves something new. When I bump into people I connect with on Facebook, they ask about him, and they've remembered things that I have shared. Things which I wouldn't have thought others would see as anything significant are mentioned with huge smiles and encouragement.
My boy has champions everywhere, and yesterday, on April 3rd, after all of the fuss had settled down, I reflected on those who've invested so much of themselves in him, and who have championed him over the last three years. The people who are paid to do a job, but for whom their work is so much more than that. We're often so quick to complain, to tell our horror stories. I've done it myself, and I still feel the need to tell others about "The Inclusive Preschool" where Bubbly was treated so poorly. But I really think that we need to celebrate the people who don't just work with our kids, but who give so much of themselves in what they do, and who treat our kids like they were their own. I've written about Bubbly's amazing school, but yesterday, as I watched his OT manage a truly "impressive" meltdown with compassion and understanding, it occurred to me just how blessed Bubbly is to have had so many incredible people in his short life, so I thought I'd write about some of them too.
To backtrack, the meltdown was similar to what we've been dealing with on a daily basis for about a week now. There's been a lot happening for Bubbly. He's into week three of a new medication, which is looking promising but which is having some effect on his moods, eating, sleep and bathroom habits. Not massive effects in themselves, but together, enough to upset his balance. He's also had some changes to the days where he sees his dad, and his teacher's been away. I've also had a lot on my plate, and I don't doubt that he's picking up on some of my anxiety as he's always been very tuned into me. So, the meltdowns have been understandable.
On this day Bubbly had been awake since 3am. He'd held it together all day at school and he was keen to go to OT- but we were early. It's easier to wait in the car with the two boys, and he was happy with the ice at the bottom of a drink I'd given him- until he tipped the ice onto the seat, which was covered in sand, and I threw it out. I couldn't let him eat it, but he wanted to, and that was it- a tantrum started.
His OT arrived then and helped me get him inside, and when we got up there I gave her some money for something she'd picked up for The Little One for me. Clearly I wasn't thinking, because Bubbly rips paper to calm himself down these days. Of course, he wanted to rip and bite pieces off the money, and when he couldn't do that he lost it, and the tantrum became a meltdown. He screamed, he hit himself, he crashed into his OT, he hit out at her and he cried. It was heartbreaking, and I felt hideous for setting him off after he'd done so well at school and for ruining his OT session, which is one of the highlights of his week.
Bubbly's OT is amazing though. I have her to thank for so much of Bubbly's progress, because she understands the sensory world that he lives in, and she's shown me and others how to meet him there. She didn't see a spoiled kid having a tantrum over something small, she saw a little boy who'd just been overwhelmed by his day and his surroundings to the point where he just had to shut down. She reassured him and made sure he was safe until he'd managed to calm himself down (which he did!), and when he was able to respond she offered him the option of staying to play, or going. He plopped himself down on a big inflatable ramp and patted it to indicate he wanted to stay, and she followed where he led. There'd been a point where we'd thought the session was a write-off and we'd have to quit, yet he went on to have a great session. Instead of leaving upset and with the memory of a bad experience, Bubbly walked out of there relaxed, happy, and even talking a little. At home he was chilled and had fun playing with his brother, with the item the OT had picked up for me (saving me a long trip somewhere also- she's awesome!).
This wasn't a one off. Bubbly's OT has brought him to that happy and connected place many a time after a hard day. She is someone we are so fortunate to have found, and who has become a friend as well- and there are others.
Like the speech therapist who spun him on her chair and bounced and danced with him when he couldn't sit still, who met him where he was at, and found him ready and willing to learn in that place of movement and fun. Who took as much joy from those hard-won first words and followed instructions as we did.
Then there was the team at my four year old Bubbly's second preschool. After such a horrible experience at his first placement, he found a second home, with staff who were patient, understanding. They took the time to get to know the little boy beneath the anxiety, sensory seeking and hyperactivity, and I felt like I was leaving him with family each day. There were tears when he finished to start school, but it was his early intervention coordinator who had me blinking back tears the day I watched her dance with my son and sing to him "I can be, anything I want to be"(1), because she really meant it for him, and every day she taught him with that mindset. We're still in contact with this amazing lady, and the director of that special preschool, and I can't wait for the day when I place my Little One in their care too.
Finally, there is Bubbly's favourite respite worker, who goes above and beyond every time she works with him, who gives he and his brother a gift each Christmas and birthday (despite me telling her not to!), who follows my page and checks up on us after a rough day, and who has presented me with many a coffee when I've dropped Bubbly off after seeing a very early morning post on my facebook. This amazing young woman, who I am also blessed to call my friend, has a knack for making every moment with my son a teachable moment, and she does it in such a way that he thinks he's just playing with one of his favourite people on this earth! And the most amazing thing about her- she has no clue how rare her ability to get in the moment with her charges, and help them to the place they want to be is. Incidentally, she is also bright blue from head to toe this month, in a show of support and solidarity to the many autistic people she cares so deeply about- and I'm so thankful that my son is one of them.
Then there was the team at my four year old Bubbly's second preschool. After such a horrible experience at his first placement, he found a second home, with staff who were patient, understanding. They took the time to get to know the little boy beneath the anxiety, sensory seeking and hyperactivity, and I felt like I was leaving him with family each day. There were tears when he finished to start school, but it was his early intervention coordinator who had me blinking back tears the day I watched her dance with my son and sing to him "I can be, anything I want to be"(1), because she really meant it for him, and every day she taught him with that mindset. We're still in contact with this amazing lady, and the director of that special preschool, and I can't wait for the day when I place my Little One in their care too.
Finally, there is Bubbly's favourite respite worker, who goes above and beyond every time she works with him, who gives he and his brother a gift each Christmas and birthday (despite me telling her not to!), who follows my page and checks up on us after a rough day, and who has presented me with many a coffee when I've dropped Bubbly off after seeing a very early morning post on my facebook. This amazing young woman, who I am also blessed to call my friend, has a knack for making every moment with my son a teachable moment, and she does it in such a way that he thinks he's just playing with one of his favourite people on this earth! And the most amazing thing about her- she has no clue how rare her ability to get in the moment with her charges, and help them to the place they want to be is. Incidentally, she is also bright blue from head to toe this month, in a show of support and solidarity to the many autistic people she cares so deeply about- and I'm so thankful that my son is one of them.
I could go on. We've only been on this journey for three years now, yet so many have given of themselves to help my Bubbly Boy make his way in this world, and they not only champion my son, but they also support me. These amazing women aren't just professionals who work with my son and accept a fee, or a wage for their time, they are also a part of our lives now, though many don't work with him anymore. They commiserate when Bubbly is having a hard time, and they cheer with us when he learns something new. They value his beautiful spirit, and they admire how hard he works every single day to be present in our world, which is often so overwhelming to him. They have become trusted friends, who've seen me worried, tired and at my wits end, and who encourage me that he'll get through whatever it is. And when he's done just that, and I say how amazing he is, they just smile, because they know that already.
(1) "Starfish", Genevieve Jerub, 2008
Monday, 10 March 2014
When You Don't Feel Like It
It may surprise some people to learn that there are times when I just don't want to talk about autism. I've had people warn me not to let it take over my life; say that I'm "obsessed" (I prefer "passionate"); and several remind me that "all kids do that sometimes you know".
Like it or not, autism is a big part of our world. There's a reason that this blog is called "The Autism Bubble", because that's what we live in a lot of the time. But truthfully, there are times when, for my own sanity I need to burst from the bubble and not talk/read/think or breathe autism. So there have been plenty of times when I have avoided bringing autism into a conversation about my kids with someone, because:
1. I didn't think they'd have the first clue what I'm talking about
2. Bubbly wasn't there, I had things to do and I just wanted to forget about autism for five minutes
3. I really just couldn't be bothered.
It's okay to feel like this, and sometimes we need to switch off. But today I learned a bit of a lesson, and it made me think.
I was tired. I'd just been to counselling where The Little One hadn't slept in the pram as planned, so I'd had to concentrate even harder than normal while ensuring my happy, but very active and curious toddler didn't destroy anything. We both needed food and a rest, but I really had to buy nappies, so we'd stopped at the shops on the way home.
I was wearily getting the heavy pram out of the boot (again) when I saw her. An old neighbour of my parents' who I hadn't spoken to in years, but always waved to as I drove past. I didn't remember hers' being a happy home. Her former husband wasn't a nice man, her kids played with me sometimes when we were younger, but they all went off the rails at some point. She was always out in the garden, or walking the dog. She was friendly enough though and clearly lonely, and I knew she'd probably want to chat. Eye contact was made and we both smiled and said hello politely, but I confess that I was hoping she would keep walking to work (she was in uniform).
She slowed and walked over..
"You've had another one?" She said, obviously not in a hurry.
"Yep, number two. Another little boy". I lifted The Little One out and she stayed as I strapped him into the pram.
"He's a big boy. Your other son would be at school now wouldn't he?"
"Yeah, he's in year one this year. Growing up too fast."
I waited, resigned. The next question is always "What school does he go to?" and the conversation turns to autism as most people know it is a special school and not in our suburb. Usually I don't mind this so much, and I tell people how awesome Bubbly's school is, what a happy boy he is and how well he's going. I'm normally happy to do a bit of awareness raising. But today I was tired, and "talked out". I really wanted to skip it, but she surprised me.
"This one must have some fun with him. Do they play well together?"
I paused for half a second as I thought how to answer. Do I or don't I go there?
Then I smiled, because my boys drive each other crazy, and I love it. The little boy who used to be on the floor screaming in sensory overload with every little peep from his baby brother now adores him and doesn't leave him alone. That easygoing little baby is now a strong willed toddler who is starting to make it very clear to his brother what he does and does not like (and he LOVES anything that is Bubbly's!). I couldn't be prouder of their relationship and how it has developed.
I relaxed, and because I can't help myself:
"They do, and they drive each other crazy too. It's really beautiful to see them play together because Bubbly has autism, and it was a lot for him to adjust to when The Little One was born. They have a really special relationship now."
Just like that, autism was in the conversation.
She smiled as that sunk in. "Does Bubbly talk?"
"Not really, though he's starting to pick up a few words and use them a little". I locked the car and we walked together.
"I have a grandson- well, Michael* actually has three boys, and his first has autism too. He doesn't talk either, and he doesn't really eat."
"Ahh, Bubbly's like that too"
"Does Bubbly go to (name of school)?"
My smile got bigger. "Yes! He does! They're so great with him."
"My grandson goes there too. It's a beautiful place."
It turns out that I knew him, though I'd had no idea who his parents were as I'd only met his other grandmother. He is a gorgeous almost-teenager who Bubbly did feeding group with last year. We had a great chat about how wonderful the school is, and she talked about her grandson, just like my mum talks about Bubbly, not dwelling on the behaviours, but speaking with love and pride of the happy boy with the wicked smile and laugh that she knows. She shared a funny story where he'd used behaviour to make it clear to everyone that he wasn't impressed with what was happening, and I laughed at the visual I had in my head as I'd seen him do the same thing at school.
In more than twenty years I'd never really had a conversation with this lady, and I'd really assumed that she wouldn't have the first clue about autism. But she surprised me, and we had some serious common ground there. She mentioned a couple of other children at the school whose grandparents she knows from other places and she talked about how nice it is when she sees them, and they can talk about their special grandkids together. When we parted I had the biggest smile on my face, and to be honest I was pretty spun out.
It was a brief encounter, one that I didn't want, but which taught me a bit of a lesson. It's not always about raising awareness. Sometimes it's just about connecting and reaching out to someone you never thought you'd have anything in common with. Sharing a story, a laugh, and a "same here". Sometimes it might be talking to that person who is just plain hard work, or potentially wasting your breath on someone who just won't get it. But you just never know how the conversation might progress, or what you might learn about them- or yourself.
Even when you don't feel like it.
*name has been changed
Tuesday, 18 February 2014
Time Will Tell
It's been months since I've published a blog post, not because I haven't had anything to write about, but because there's been too much, and most of it I just couldn't share with the world, as much as there were times when I wanted to. Autism, always such a prominent part of our lives, has taken something of a backseat, as I grappled with things I never imagined I would have to face.
We've all heard the statistics about marital breakdown in families raising children with disabilities. I guess we're one of them now, though I can honestly say that the failure of my marriage had, and has nothing to do with autism or the demands of raising our children. Other, far more painful things had done their damage long before autism became a part of our lives, and left unhealed, those hurts slowly consumed everything and everyone in their path. I won't be writing about it as it wouldn't be right, and much of it is not my story to tell. I am finding my feet as a single mother, and my boys have two parents who love them, and who are doing their best to work together for them, and to be friends. Starting a new life is overwhelming. It's exciting. It's heartbreaking, and it's liberating. Where will we be in a year's time? Time will tell.
So, back to The Bubbly One, and autism and ADHD, which even in the background still leave their mark on everything! I realised today that I've really missed blogging, but my brain is also pretty full of other things, so I thought I'd ease my way back into the blogging waters by giving a bit of an update on where things are at. I'm also going to throw in a few shameless links to other posts since it's been a while since I've written.
The Bubbly One has started his second year of school after a pretty sedate school holidays. I have to say that Daddy and I were really expecting a huge regression over his summer holidays. Six weeks without his amazing school and without his therapies is brutal for Bubbly, and throw in all of the upheaval with our home life, and no one was expecting it to be pretty. But Bubbly handled it like a champ, with very little of the destructive sensory seeking I wrote about here, nor the utter chaos we saw on this day (seriously, I still can't believe that one!). We had maybe one really bad day each week, but when it was over he'd be busy and hyper, but happy for the most part. He improved with his toileting, even starting to indicate that he needed to go, or that he already had, and his receptive language really picked up instead of declining as it usually does without his usual routines in place. We more than survived, with a lot of time outside playing with the sprinkler, and some play dates with like-minded families!
But his eating became a big concern. Bubbly became even more selective about what he would eat, and gradually phased out the things that we'd depended on him eating, like fruit, toast and sustagen (a dietary supplement milk drink). The quantities of what he was eating were still fairly okay though, and where we could, we gave him time off his Ritalin to try to make up some calories. This seemed to be working. He was hyper as all hell on those days, but he ate heaps and his weight was stable. But over the last few weeks the quantities that he was eating had diminished. He was full of energy and happy, but he seemed to be surviving on not much more than the supplements I was getting into him, cookies, banana bread and hot chips. He was visibly losing weight and we were terrified, so back to the paediatrician we went last week.
I wrote a blog post about Bubbly's first two weeks on Ritalin back in November, and where I left off we still weren't sure that it was the right medication for him, but things were looking up. At three weeks though, he stopped eating and his anxiety had soared on the full dose. The paediatrician took him off it, and then started him again on the tiniest dose (5mg in the morning), and that seemed to do the trick. He was calmer, concentrating beautifully and was eating and sleeping okay because it had worn off by the afternoon, when he would be hyper, but not as much as when he'd been building up all day. But the paediatrician warned us that the tiny dose wouldn't stay effective for long, and he was right. The problem then was that Bubbly wouldn't eat after a lunch time dose, his sleep was disrupted, even with clonidine, and his anxiety returned.
So between that and his scary weight loss we all knew that it wasn't the right med for our boy, and our next option was a new ADHD med called Vyvanse, which is a slow release stimulant that everyone is hoping will have the right effect on his hyperactivity and impulsiveness, but without the sudden kick of Ritalin which has affected his appetite so badly. Time will tell, and as it is only available through one interstate pharmacy on a monitoring program we had to enrol in we're still waiting after a week for it to arrive- and Bubbly is his au natural hyper, happy and very LOUD self until then!
So that's Bubbly. Now for The Little One. I've started many a post about how closely I watch my Little One, and never finished them, because I didn't want anything to seem like a foregone conclusion. There was a reason for the five year age gap between our boys, and it was because we weren't ready to have another child while we were getting our heads around The Bubbly One's considerably high needs. I'm not going to lie, we were also aware of the increased odds of another child being on the spectrum also. So when we did decide to have another baby, it wasn't until we were prepared to be okay with possibly having another autistic child in our family.
From day one, The Little One has been totally different from his brother. Calm, easy-going, sociable and settled, we called him "The Angel Baby" from the early days because he was such an easy baby. We had none of the feeding or settling issues we'd battled first time around, he'd go to anyone, and he seemed thoroughly amused by the chaos of our home. It was as though he was born knowing that more would be expected of him than of other babies, and we thought we were home free. The Little One is still most of these things. He still delights everyone who meets him with his easy-going ways and his cheeky giggle.
But I have concerns.
He has been in physiotherapy since nine months for low muscle tone, poor core strength and gross motor delays. He didn't sit independently until 13 months, and at fifteen months, he is just starting to take tentative steps while holding on to something. He is ridiculously oral defensive. He still doesn't feed himself, melts down when I brush his teeth, and he doesn't mouth things to explore like other babies. He loves fans, and wheels and buttons. He is social, he seeks out other kids, but his eye contact is very inconsistent. He babbles, and he responds to some basic instructions, but there are clearly language delays. He doesn't point. He has a large head circumference.
Small things perhaps, but lots of them all together. A paranoid mother? Or one who has walked this road before and knows the cracks in the pavement all too well? His paediatrician thinks the latter. We will start screening at eighteen months with my Little One, and from there, time will tell.
We've all heard the statistics about marital breakdown in families raising children with disabilities. I guess we're one of them now, though I can honestly say that the failure of my marriage had, and has nothing to do with autism or the demands of raising our children. Other, far more painful things had done their damage long before autism became a part of our lives, and left unhealed, those hurts slowly consumed everything and everyone in their path. I won't be writing about it as it wouldn't be right, and much of it is not my story to tell. I am finding my feet as a single mother, and my boys have two parents who love them, and who are doing their best to work together for them, and to be friends. Starting a new life is overwhelming. It's exciting. It's heartbreaking, and it's liberating. Where will we be in a year's time? Time will tell.
So, back to The Bubbly One, and autism and ADHD, which even in the background still leave their mark on everything! I realised today that I've really missed blogging, but my brain is also pretty full of other things, so I thought I'd ease my way back into the blogging waters by giving a bit of an update on where things are at. I'm also going to throw in a few shameless links to other posts since it's been a while since I've written.
The Bubbly One has started his second year of school after a pretty sedate school holidays. I have to say that Daddy and I were really expecting a huge regression over his summer holidays. Six weeks without his amazing school and without his therapies is brutal for Bubbly, and throw in all of the upheaval with our home life, and no one was expecting it to be pretty. But Bubbly handled it like a champ, with very little of the destructive sensory seeking I wrote about here, nor the utter chaos we saw on this day (seriously, I still can't believe that one!). We had maybe one really bad day each week, but when it was over he'd be busy and hyper, but happy for the most part. He improved with his toileting, even starting to indicate that he needed to go, or that he already had, and his receptive language really picked up instead of declining as it usually does without his usual routines in place. We more than survived, with a lot of time outside playing with the sprinkler, and some play dates with like-minded families!
But his eating became a big concern. Bubbly became even more selective about what he would eat, and gradually phased out the things that we'd depended on him eating, like fruit, toast and sustagen (a dietary supplement milk drink). The quantities of what he was eating were still fairly okay though, and where we could, we gave him time off his Ritalin to try to make up some calories. This seemed to be working. He was hyper as all hell on those days, but he ate heaps and his weight was stable. But over the last few weeks the quantities that he was eating had diminished. He was full of energy and happy, but he seemed to be surviving on not much more than the supplements I was getting into him, cookies, banana bread and hot chips. He was visibly losing weight and we were terrified, so back to the paediatrician we went last week.
I wrote a blog post about Bubbly's first two weeks on Ritalin back in November, and where I left off we still weren't sure that it was the right medication for him, but things were looking up. At three weeks though, he stopped eating and his anxiety had soared on the full dose. The paediatrician took him off it, and then started him again on the tiniest dose (5mg in the morning), and that seemed to do the trick. He was calmer, concentrating beautifully and was eating and sleeping okay because it had worn off by the afternoon, when he would be hyper, but not as much as when he'd been building up all day. But the paediatrician warned us that the tiny dose wouldn't stay effective for long, and he was right. The problem then was that Bubbly wouldn't eat after a lunch time dose, his sleep was disrupted, even with clonidine, and his anxiety returned.
So between that and his scary weight loss we all knew that it wasn't the right med for our boy, and our next option was a new ADHD med called Vyvanse, which is a slow release stimulant that everyone is hoping will have the right effect on his hyperactivity and impulsiveness, but without the sudden kick of Ritalin which has affected his appetite so badly. Time will tell, and as it is only available through one interstate pharmacy on a monitoring program we had to enrol in we're still waiting after a week for it to arrive- and Bubbly is his au natural hyper, happy and very LOUD self until then!
So that's Bubbly. Now for The Little One. I've started many a post about how closely I watch my Little One, and never finished them, because I didn't want anything to seem like a foregone conclusion. There was a reason for the five year age gap between our boys, and it was because we weren't ready to have another child while we were getting our heads around The Bubbly One's considerably high needs. I'm not going to lie, we were also aware of the increased odds of another child being on the spectrum also. So when we did decide to have another baby, it wasn't until we were prepared to be okay with possibly having another autistic child in our family.
From day one, The Little One has been totally different from his brother. Calm, easy-going, sociable and settled, we called him "The Angel Baby" from the early days because he was such an easy baby. We had none of the feeding or settling issues we'd battled first time around, he'd go to anyone, and he seemed thoroughly amused by the chaos of our home. It was as though he was born knowing that more would be expected of him than of other babies, and we thought we were home free. The Little One is still most of these things. He still delights everyone who meets him with his easy-going ways and his cheeky giggle.
But I have concerns.
He has been in physiotherapy since nine months for low muscle tone, poor core strength and gross motor delays. He didn't sit independently until 13 months, and at fifteen months, he is just starting to take tentative steps while holding on to something. He is ridiculously oral defensive. He still doesn't feed himself, melts down when I brush his teeth, and he doesn't mouth things to explore like other babies. He loves fans, and wheels and buttons. He is social, he seeks out other kids, but his eye contact is very inconsistent. He babbles, and he responds to some basic instructions, but there are clearly language delays. He doesn't point. He has a large head circumference.
Small things perhaps, but lots of them all together. A paranoid mother? Or one who has walked this road before and knows the cracks in the pavement all too well? His paediatrician thinks the latter. We will start screening at eighteen months with my Little One, and from there, time will tell.
Thursday, 7 November 2013
Watching, Waiting, Hoping.
Note: Before I start, I'd like to give a "heads up". This post is about supporting our son with the help of a medication (Ritalin). There is a lot of very scary information about Ritalin (in fact, any medication) out there. There are also a lot of people who are passionately against the use of medication, and Ritalin seems to be on tabloid style current affairs programs and talkback radio every week, and always in a negative light. If you are someone who is absolutely against medication, especially Ritalin, then can I respectfully ask you to please just skip this post. I'm not out to change anyone's opinions, nor am I looking for other people's opinions (to be quite blunt), I'm just here to share our story. Thank you.
The Bubbly One collected an additional diagnosis today. ADHD. Surprising? Not at all. How do I feel about that? I have no idea. It just is, as it has always been, we just have it on paper now.
I wrote this two weeks ago after a visit to Bubbly's developmental paediatrician, and I was just going to delete what I'd started and just not bother. Bubbly's ADHD diagnosis wasn't a shock. Like his autism diagnosis, his paediatrician gently began to broach the subject after I spoke about his hyperactivity, his impulsiveness, the danger he's putting himself in on a regular basis, his running off and his frustration with himself when he cannot attend to anything he wants to. He danced around saying the words, and like his first diagnosis, I confirmed it. "He ticks all the boxes" was how I phrased it this time. There was no grand announcement, just an explanation to the school as to why he will be taking Ritalin.
... fulfils the diagnostic criteria for Attention Deficit Hyperactivity Disorder under the DSM V...
It's true. It just is, as it has always been. We've recognised when he is sensory seeking and why. We swear by sensory integration OT, we use a sensory diet, and continue to do so. We've already started Catapres (Clonidine) in a bid to help our boy to get the sleep his mind and body so desperately need and to help him to concentrate at school, and it has helped. He has positive behaviour plans in place everywhere he goes. He has been in speech therapy since he turned two and we implement everything at home and school. Everything has helped. But we had finally reached a point where we had to acknowledge that none of it was enough. If we could live between home and school for the rest of our days then perhaps we could have avoided this. If we were content have our child struggle to learn, to concentrate, to blame society and a lack of acceptance for his low self esteem, then perhaps we could have left things as they were.
But the reality is that there is a world out there that my son needs, and wants to be a part of. My son has a love of learning, but he also knows his limitations. He always has, and if he thinks that he isn't able to do something then he will not try. He couldn't concentrate. He couldn't sit still. He couldn't relax and do the things that he likes without bouncing and moving and fidgeting and getting up to do things, and then getting distracted by other things, and then being thoroughly confused because he had no idea what he wanted to do or how to go about doing it anymore.
I'm confused just reading that, and if you are too then that's just a little insight into how he was feeling!
He was also at risk constantly, no matter how much I was glued to his side, and sometimes this also put his little brother at risk also. "Helicopter mother" is a mild term for the level of supervision needed to keep The Bubbly One in one piece. He ran onto the road, over and over again. He would have done so many more times had he not been wearing a harness or had me holding him in a death grip. He ran at stairs with no awareness that he would fall with his low muscle tone and poor coordination, he grabbed at hot things, he'd run into water over his head, be pulled out and do it again, and again. I returned from a minute toilet run and found him with a carving fork from the dishwasher in his hand the other day waving it perilously close to his brother's eyes and his own. Earlier that morning he'd pulled the (locked) utensil drawer so hard that it broke and flew out of the bench top, scattering all manner of sharp items onto the floor at his feet. Then once I'd repaired it he did it again, and again, and again (yes I'd removed the sharp items). These are just a few examples of what we see nearly every day and every near-miss terrified me.
So I had "the" conversation with Bubbly's paediatrician, and he told me that the most successful and safest drug for treating ADHD is Ritalin. I'd done my research and it terrified me. There are so many horror stories out there about Ritalin and it's sister drugs, and there is so much hate out there for parents who give it to their children. I expressed all of this to The Bubbly One's paediatrician, and he gave it to me straight. He talked through the side effects, how it should and should not work, and how we ease him onto the dosage so as to make the transition easier for him, and hopefully lessen the side effects. He gave me a plan to ease him onto it so as to minimise the side effects as his body adjusted to it, monitoring forms for us and the school to complete to track side effects and performance measures, and some reading material on what we could possibly expect during the transition period. He also talked about what he has witnessed in his decades of experience in treating children like my Bubbly One, and he told me the statistics that you don't hear about, where it has been a wonder drug, and indeed, when I later posted on my Autism Bubble Facebook Page the response that I got was overwhelmingly positive.
I have to admit, this surprised me. I expected to be flamed for even considering giving Ritalin to my child, but I had comments and private messages saying that the first week or so was tough, but that they hadn't looked back, that their children had made huge progress once they could concentrate, and the added benefits to their relationships and self esteem. There were also others, like us, who had contemplated walking down that road but hadn't yet, because they were afraid, because they'd heard the horror stories, because they'd spoken with doctors who had accused them of seeking a "quick fix" and who'd heaped judgement on their heads for even thinking of medicating their child. So many of these families begged me to keep them posted on how The Bubbly One went, and I suppose this post is for them.
I wish I could offer more to those families. I wish that I could say that Ritalin has solved every struggle we've had. But I don't have a clear conclusion as to how we feel about it yet. I can see some great things happening for my Bubbly One, and I can see some other things that have us concerned that perhaps this isn't the right dose for him, or the right drug. He has been on his full dosage for five days, and after nearly two weeks we are still waiting and watching. Like anything in this blog, I can only describe our experiences, and I can only interpret how I think my son was and is feeling. I like to think that I'm very tuned in to him, and truly, I do know him better than anyone, but I don't always know what's going on in his mind, and I am the first to admit that sometimes I have no clue and I get it wrong. So here is the last two weeks, as I saw things.
Days One to Three
The first three days were terrible, and it really put Bubbly and our family through the wringer. Bubbly got the common side effects of Ritalin which were headaches and appetite loss, and stemming from that, nausea and possibly abdominal pain. He was irritable and so noise sensitive that he couldn't stand any sounds that his brother made, something we hadn't experienced since the first couple of months after The Little One was first born. My heart broke all over again at this and I nearly stopped it then. He was also eerily quiet (once the paracetamol had kicked in and his head wasn't aching). He had meltdowns after school, from the moment he got into the car and continuing for an hour or so after we got home, until such time as I was able to get some food into him because he'd be white as a ghost and shaking by that stage. School reported that he was very quiet and still, and that he'd needed the pain relief I'd supplied. He had concentrated well on his work, but he hadn't been his Bubbly self. He also struggled to sleep and was waking at 2-3am again, despite having his bedtime clonidine, and the "rebound" hyperactivity once the lunchtime dose wore off was as full-on as before taking the medication.
Days Four to Six
On day four the headaches seemed to subside, though his appetite diminished even further, so getting calories into him became a big part of our morning and afternoon/evening routines. I tried meeting him after school with a dietary supplement drink they use in hospitals here for patients with poor appetite and that seemed to help. Once he drank that he began to slowly eat and was beautifully settled and happy. For the first time in a long time I heard giggles and singing from the backseat instead of screaming and thumping, and the good mood continued at home though he grew more hyper as the afternoon progressed and woke at 3:20 the next morning. Despite that though, he was focused and interactive at feeding therapy- totally different from any other time when I've been involved in an activity at school. I saw him follow a six step visual schedule without issue, which he'd never done without huge effort by his support person (and huge resistance from him). Day six was uneventful.
Day Seven
We tried the afternoon dose on day seven, which we have the option of using or not using, and even though it was only a half dose it's not something we'll be continuing. It totally killed what little appetite he had, he couldn't sleep and he woke up wired at 2am the next morning and then was asleep again at 7, which then confused his day entirely, and also brought on the headache we thought he was rid of.
Week Two
From there though his behaviour at home has steadily improved. His eating is still a concern, and he is more difficult to settle for the night, though he is still out by 8:30 so we really can't complain about that, and the early mornings are down to once or twice per week. The Little One has been very unsettled and miserable due to teething and separation anxiety (the joys!) this week, and my Bubbly Boy has managed to stay calm through some very trying mornings. He's also interacting with his little brother again, something that had started to dissipate pre-meds and something that I was also very worried about. Now instead of ignoring him, or getting annoyed with him, he is smiling back and taking notice of the little brother who adores him, and who follows his every move. He's also clearly taking in a lot more and responding appropriately. We've seen an increase in his conversational language (it's still not much but enough that we've noticed). I've noticed more echolalia and scripting emerging, and he is copying the movements and following the instructions given on some of his DVD's that he watches at home.
I've also been able to take him out without major difficulty, and he's enjoyed himself and interacted with people when they've spoken to him, whereas before he was always too hyper and fixated on things to notice. His behaviour plans are working a lot better and he's understanding why things might not be the way that he wants them to be. For example, I took him shopping early one evening (during his "witching hour" actually, that's how good he's been) and the bakery where he always buys a donut before going into the supermarket was closed. Normally this would've resulted in a screaming, door-banging meltdown, but this time he actually listened when I explained that the bakery was closed and that the people had all gone home for the day, and he was easily redirected to the car. So with us, it's been mostly positive- not perfect, we've still had some good tantrums and plenty of hyperactivity of an evening, but the meltdowns have decreased because he is coping better with the demands being made of him, and he seems to be understanding what's happening better because he's slowed down enough to process things.
When he's not with us is mostly when we're seeing the things that concern us, particularly at school. The Bubbly One's school has been nothing but supportive and have worked with us every step of the way, but Bubbly hasn't seemed to be as happy in his school environment, whereas it used to be the place that brought out the best in him. Where we struggled at home, school managed easily and they'd seen very little of the behaviour that was the norm at home. The Bubbly One is one of those kids that turns up ready to work. He keeps it together all day long, then when he is home and feels safe the stress comes out. On Ritalin he is certainly focused and concentrating well on his work, but he is anxious. He is seeking reassurance and cuddles often, his hands are over his ears constantly and he is just not quite his usual bouncy, bubbly self. He's also not eating much at all and they are struggling even to get the supplement drink I'm sending in into him. He's also choosing "sad" a couple of times a week in his "feelings" part of his visuals that he brings home to talk about his day with us, but when he gets in the car he is happy and laughs at me when I ask him about it, so I'm really not sure what's going on there.
I can tell that his teacher is trying to be positive but that they don't think it's right for him at school, and I respect their opinion. They've done things with my boy that I've never been able to get him to do. But I also have to wonder whether the environment at school is contributing to his anxiety and noise sensitivity. His school has a lot of construction work going on and this means that the second we pull up in the mornings he jumps and covers his ears because he can hear power tools. Today (Day Thirteen), there was less mechanical noise at school and he had a great day with much less clinginess, and was much more "himself". Has his improved concentration been making those already feared sounds more prominent to him? His OT is inclined to think so. Perhaps it simply is an increase in anxiety, caused by the meds. It can be another side effect of Ritalin. I'm not sure, and it's what we're currently trying to work out. So for another week or so we will continue to watch, and wait.
So that's where we're at. Waiting, watching. I feel guilty for even writing this, given that it's not my body having to adjust to the medication, but I have to say that it's also been really difficult for Daddy and I. Neither of us slept much for the first five days, though we were exhausted. We were distracted as we went about our everyday work- for the first time ever I totally messed up our finances, paid the wrong bills and had to borrow money from my parents to cover our mortgage (thank God they can and did help), and Daddy, ever the perfectionist with painful attention to detail, was making mistakes at work. But more than those things that can be fixed, we were so desperately worried for our little boy. We love our kids more than anything on this earth, and we felt every cry, every scream of frustration and every babbled attempt to tell us what he was feeling in those first few days like a stab to the heart. Though I'm not sorry that we're trying this medication, I truly wish that there had been another way. I hate the "trial and error" of this process with a child who can't tell us much about how it is affecting him. I wrote back in June:
My son's life, his emotions, his experience of the world, is for the most part interpreted for others by me, and it has been gut wrenching to see him so unhappy and not know what was turning his world upside down, nor what I could do to make things easier for him. It was terrifying to give him a medication, even when his paediatrician (whom I trust) said that it was safe, to wait and watch for possible side effects and to feel like I was pinning my hopes for my son on something that might make things worse for him.
Different medication, same emotions, only tenfold. But nearly two weeks later, I think, and so desperately hope, that we have seen the worst of this process. We see the paediatrician in a month for review, and if need be I can call him before then. We may need to reduce the dosage or try another medication if the side effects are too great. But for now, we watch, and we wait, and we hope.
The Bubbly One collected an additional diagnosis today. ADHD. Surprising? Not at all. How do I feel about that? I have no idea. It just is, as it has always been, we just have it on paper now.
I wrote this two weeks ago after a visit to Bubbly's developmental paediatrician, and I was just going to delete what I'd started and just not bother. Bubbly's ADHD diagnosis wasn't a shock. Like his autism diagnosis, his paediatrician gently began to broach the subject after I spoke about his hyperactivity, his impulsiveness, the danger he's putting himself in on a regular basis, his running off and his frustration with himself when he cannot attend to anything he wants to. He danced around saying the words, and like his first diagnosis, I confirmed it. "He ticks all the boxes" was how I phrased it this time. There was no grand announcement, just an explanation to the school as to why he will be taking Ritalin.
... fulfils the diagnostic criteria for Attention Deficit Hyperactivity Disorder under the DSM V...
It's true. It just is, as it has always been. We've recognised when he is sensory seeking and why. We swear by sensory integration OT, we use a sensory diet, and continue to do so. We've already started Catapres (Clonidine) in a bid to help our boy to get the sleep his mind and body so desperately need and to help him to concentrate at school, and it has helped. He has positive behaviour plans in place everywhere he goes. He has been in speech therapy since he turned two and we implement everything at home and school. Everything has helped. But we had finally reached a point where we had to acknowledge that none of it was enough. If we could live between home and school for the rest of our days then perhaps we could have avoided this. If we were content have our child struggle to learn, to concentrate, to blame society and a lack of acceptance for his low self esteem, then perhaps we could have left things as they were.
But the reality is that there is a world out there that my son needs, and wants to be a part of. My son has a love of learning, but he also knows his limitations. He always has, and if he thinks that he isn't able to do something then he will not try. He couldn't concentrate. He couldn't sit still. He couldn't relax and do the things that he likes without bouncing and moving and fidgeting and getting up to do things, and then getting distracted by other things, and then being thoroughly confused because he had no idea what he wanted to do or how to go about doing it anymore.
I'm confused just reading that, and if you are too then that's just a little insight into how he was feeling!
He was also at risk constantly, no matter how much I was glued to his side, and sometimes this also put his little brother at risk also. "Helicopter mother" is a mild term for the level of supervision needed to keep The Bubbly One in one piece. He ran onto the road, over and over again. He would have done so many more times had he not been wearing a harness or had me holding him in a death grip. He ran at stairs with no awareness that he would fall with his low muscle tone and poor coordination, he grabbed at hot things, he'd run into water over his head, be pulled out and do it again, and again. I returned from a minute toilet run and found him with a carving fork from the dishwasher in his hand the other day waving it perilously close to his brother's eyes and his own. Earlier that morning he'd pulled the (locked) utensil drawer so hard that it broke and flew out of the bench top, scattering all manner of sharp items onto the floor at his feet. Then once I'd repaired it he did it again, and again, and again (yes I'd removed the sharp items). These are just a few examples of what we see nearly every day and every near-miss terrified me.
So I had "the" conversation with Bubbly's paediatrician, and he told me that the most successful and safest drug for treating ADHD is Ritalin. I'd done my research and it terrified me. There are so many horror stories out there about Ritalin and it's sister drugs, and there is so much hate out there for parents who give it to their children. I expressed all of this to The Bubbly One's paediatrician, and he gave it to me straight. He talked through the side effects, how it should and should not work, and how we ease him onto the dosage so as to make the transition easier for him, and hopefully lessen the side effects. He gave me a plan to ease him onto it so as to minimise the side effects as his body adjusted to it, monitoring forms for us and the school to complete to track side effects and performance measures, and some reading material on what we could possibly expect during the transition period. He also talked about what he has witnessed in his decades of experience in treating children like my Bubbly One, and he told me the statistics that you don't hear about, where it has been a wonder drug, and indeed, when I later posted on my Autism Bubble Facebook Page the response that I got was overwhelmingly positive.
I have to admit, this surprised me. I expected to be flamed for even considering giving Ritalin to my child, but I had comments and private messages saying that the first week or so was tough, but that they hadn't looked back, that their children had made huge progress once they could concentrate, and the added benefits to their relationships and self esteem. There were also others, like us, who had contemplated walking down that road but hadn't yet, because they were afraid, because they'd heard the horror stories, because they'd spoken with doctors who had accused them of seeking a "quick fix" and who'd heaped judgement on their heads for even thinking of medicating their child. So many of these families begged me to keep them posted on how The Bubbly One went, and I suppose this post is for them.
I wish I could offer more to those families. I wish that I could say that Ritalin has solved every struggle we've had. But I don't have a clear conclusion as to how we feel about it yet. I can see some great things happening for my Bubbly One, and I can see some other things that have us concerned that perhaps this isn't the right dose for him, or the right drug. He has been on his full dosage for five days, and after nearly two weeks we are still waiting and watching. Like anything in this blog, I can only describe our experiences, and I can only interpret how I think my son was and is feeling. I like to think that I'm very tuned in to him, and truly, I do know him better than anyone, but I don't always know what's going on in his mind, and I am the first to admit that sometimes I have no clue and I get it wrong. So here is the last two weeks, as I saw things.
Days One to Three
The first three days were terrible, and it really put Bubbly and our family through the wringer. Bubbly got the common side effects of Ritalin which were headaches and appetite loss, and stemming from that, nausea and possibly abdominal pain. He was irritable and so noise sensitive that he couldn't stand any sounds that his brother made, something we hadn't experienced since the first couple of months after The Little One was first born. My heart broke all over again at this and I nearly stopped it then. He was also eerily quiet (once the paracetamol had kicked in and his head wasn't aching). He had meltdowns after school, from the moment he got into the car and continuing for an hour or so after we got home, until such time as I was able to get some food into him because he'd be white as a ghost and shaking by that stage. School reported that he was very quiet and still, and that he'd needed the pain relief I'd supplied. He had concentrated well on his work, but he hadn't been his Bubbly self. He also struggled to sleep and was waking at 2-3am again, despite having his bedtime clonidine, and the "rebound" hyperactivity once the lunchtime dose wore off was as full-on as before taking the medication.
Days Four to Six
On day four the headaches seemed to subside, though his appetite diminished even further, so getting calories into him became a big part of our morning and afternoon/evening routines. I tried meeting him after school with a dietary supplement drink they use in hospitals here for patients with poor appetite and that seemed to help. Once he drank that he began to slowly eat and was beautifully settled and happy. For the first time in a long time I heard giggles and singing from the backseat instead of screaming and thumping, and the good mood continued at home though he grew more hyper as the afternoon progressed and woke at 3:20 the next morning. Despite that though, he was focused and interactive at feeding therapy- totally different from any other time when I've been involved in an activity at school. I saw him follow a six step visual schedule without issue, which he'd never done without huge effort by his support person (and huge resistance from him). Day six was uneventful.
Day Seven
We tried the afternoon dose on day seven, which we have the option of using or not using, and even though it was only a half dose it's not something we'll be continuing. It totally killed what little appetite he had, he couldn't sleep and he woke up wired at 2am the next morning and then was asleep again at 7, which then confused his day entirely, and also brought on the headache we thought he was rid of.
Week Two
From there though his behaviour at home has steadily improved. His eating is still a concern, and he is more difficult to settle for the night, though he is still out by 8:30 so we really can't complain about that, and the early mornings are down to once or twice per week. The Little One has been very unsettled and miserable due to teething and separation anxiety (the joys!) this week, and my Bubbly Boy has managed to stay calm through some very trying mornings. He's also interacting with his little brother again, something that had started to dissipate pre-meds and something that I was also very worried about. Now instead of ignoring him, or getting annoyed with him, he is smiling back and taking notice of the little brother who adores him, and who follows his every move. He's also clearly taking in a lot more and responding appropriately. We've seen an increase in his conversational language (it's still not much but enough that we've noticed). I've noticed more echolalia and scripting emerging, and he is copying the movements and following the instructions given on some of his DVD's that he watches at home.
I've also been able to take him out without major difficulty, and he's enjoyed himself and interacted with people when they've spoken to him, whereas before he was always too hyper and fixated on things to notice. His behaviour plans are working a lot better and he's understanding why things might not be the way that he wants them to be. For example, I took him shopping early one evening (during his "witching hour" actually, that's how good he's been) and the bakery where he always buys a donut before going into the supermarket was closed. Normally this would've resulted in a screaming, door-banging meltdown, but this time he actually listened when I explained that the bakery was closed and that the people had all gone home for the day, and he was easily redirected to the car. So with us, it's been mostly positive- not perfect, we've still had some good tantrums and plenty of hyperactivity of an evening, but the meltdowns have decreased because he is coping better with the demands being made of him, and he seems to be understanding what's happening better because he's slowed down enough to process things.
When he's not with us is mostly when we're seeing the things that concern us, particularly at school. The Bubbly One's school has been nothing but supportive and have worked with us every step of the way, but Bubbly hasn't seemed to be as happy in his school environment, whereas it used to be the place that brought out the best in him. Where we struggled at home, school managed easily and they'd seen very little of the behaviour that was the norm at home. The Bubbly One is one of those kids that turns up ready to work. He keeps it together all day long, then when he is home and feels safe the stress comes out. On Ritalin he is certainly focused and concentrating well on his work, but he is anxious. He is seeking reassurance and cuddles often, his hands are over his ears constantly and he is just not quite his usual bouncy, bubbly self. He's also not eating much at all and they are struggling even to get the supplement drink I'm sending in into him. He's also choosing "sad" a couple of times a week in his "feelings" part of his visuals that he brings home to talk about his day with us, but when he gets in the car he is happy and laughs at me when I ask him about it, so I'm really not sure what's going on there.
I can tell that his teacher is trying to be positive but that they don't think it's right for him at school, and I respect their opinion. They've done things with my boy that I've never been able to get him to do. But I also have to wonder whether the environment at school is contributing to his anxiety and noise sensitivity. His school has a lot of construction work going on and this means that the second we pull up in the mornings he jumps and covers his ears because he can hear power tools. Today (Day Thirteen), there was less mechanical noise at school and he had a great day with much less clinginess, and was much more "himself". Has his improved concentration been making those already feared sounds more prominent to him? His OT is inclined to think so. Perhaps it simply is an increase in anxiety, caused by the meds. It can be another side effect of Ritalin. I'm not sure, and it's what we're currently trying to work out. So for another week or so we will continue to watch, and wait.
So that's where we're at. Waiting, watching. I feel guilty for even writing this, given that it's not my body having to adjust to the medication, but I have to say that it's also been really difficult for Daddy and I. Neither of us slept much for the first five days, though we were exhausted. We were distracted as we went about our everyday work- for the first time ever I totally messed up our finances, paid the wrong bills and had to borrow money from my parents to cover our mortgage (thank God they can and did help), and Daddy, ever the perfectionist with painful attention to detail, was making mistakes at work. But more than those things that can be fixed, we were so desperately worried for our little boy. We love our kids more than anything on this earth, and we felt every cry, every scream of frustration and every babbled attempt to tell us what he was feeling in those first few days like a stab to the heart. Though I'm not sorry that we're trying this medication, I truly wish that there had been another way. I hate the "trial and error" of this process with a child who can't tell us much about how it is affecting him. I wrote back in June:
My son's life, his emotions, his experience of the world, is for the most part interpreted for others by me, and it has been gut wrenching to see him so unhappy and not know what was turning his world upside down, nor what I could do to make things easier for him. It was terrifying to give him a medication, even when his paediatrician (whom I trust) said that it was safe, to wait and watch for possible side effects and to feel like I was pinning my hopes for my son on something that might make things worse for him.
Different medication, same emotions, only tenfold. But nearly two weeks later, I think, and so desperately hope, that we have seen the worst of this process. We see the paediatrician in a month for review, and if need be I can call him before then. We may need to reduce the dosage or try another medication if the side effects are too great. But for now, we watch, and we wait, and we hope.
Saturday, 5 October 2013
Our Time Will Come
I love my life and I'm thankful for all that we have, but that doesn't mean that I don't feel a little cheated watching all of the happy families on their holidays on my newsfeed today. I know that things will get easier and our time will come, but today it just hurts.
I posted this on my Autism Bubble Facebook Page today in the middle of what amounted to a pretty impressive pity party. I'd already started writing this post though it's taking a bit of a different angle now, and I meant it. I do love my life and I am grateful for all that we have.
I swore at the start of the holidays that I wouldn't compare our lot to that of my friends' because our world is beautiful, just in different ways. I promised myself that I wouldn't let myself be dragged down by my newsfeed full of smiling families at the front of theme parks, of the updates saying how much fun they were having, nor of the "I'm so exhausted, what a huge day" posts and pictures of their dinners out each night. And I wasn't. I was actually enjoying the posts and interacting with my friends who also work hard and deserve a great holiday.
But today it all got under my skin. I wanted all of that so badly for my family, and I really wanted it for me. And it hurt. A lot.
It's been on my mind a lot lately that we live in a very different world than our friends and family, and it's something that Daddy and I were discussing just a week ago after a rare night out. My wonderful parents had The Bubbly One for a sleepover so that we could go out for dinner, catch up with some family who were visiting from interstate, and have a bit of a sleep-in to recharge for the week ahead. The night out was fun. The Little One slept peacefully in his pram for most of it and we got to talk, laugh, eat our meals slowly and actually be "present" for a full night's conversations. It's the little things that we have come to appreciate in this life of ours, and those conversations really opened our eyes to that. My husband commented afterwards that he feels like we live on another planet to other parents. His cousins talked of cruising holidays, of new cars, of expensive shoes and clothes, of boats, motorbikes and motorhomes- what my husband refers to as "toys", and what he also gets to hear about constantly in an office full of men without the responsibilities we know.
We have a beautiful home, we live comfortably, though with a decent amount of debt, and we're very fortunate to live in a country with very generous provisions for our son compared to what so many others I know receive. But we've made the choice to have me stay at home with the kids, and on a single income we can't afford "toys'- nor do we have the time to use them. After talk about our new (used) car we were asked about the next holiday we were planning and asked had we considered a cruise, and we changed the subject. Our last holiday was a near disastrous weekend away for Mothers Day, and since then we just haven't had the money (or the energy) to try again. We resisted the urge to school them in how different the autism family's life is. We just listened, smiled and nodded a lot, and afterwards in the car we reflected on our life.
Perhaps it was my resolve to see our blessings, but as I said to my husband that night, and as I posted on my Autism Bubble page, I wouldn't swap. I like my life, even with it's struggles. We gain more satisfaction from a followed instruction, or a new word than I would ever gain from having my nails done regularly. A milestone met after years of therapy will trump drinking on a ship somewhere any day, and seeing our son happy, thriving and learning at his amazing school brings us more joy than any of those "toys" ever could. We will have our time one day. We will have opportunities to travel, with or without The Bubbly One. One day we will be able to afford some of those things. But for now, our family is where our happiness lies, and I wouldn't have it any other way.
Which brings me back to today. I didn't realise what it was that hurt so much, but my husband did. I ranted and raved about how our family deserves a fun holiday too, and he gently pointed out the one that I wasn't referring to. One of the holidays in my newsfeed was some old work colleagues, and their trip was different to the others: No family, no kids, no responsibilities for a few days. A chance to escape our world and just be me. It wasn't the holiday itself that I was bummed about, it was the loss of a part of me. A younger me, and a more carefree me.
I'm okay with not working and having a career (and that was a big ego boost for me once because I was good at what I did). I'm okay with missing out on holidays and material things. But I'm different now and sometimes I miss the old me. I miss being able to hold a conversation without autism buzzing in my head and whispering in my ear. I miss being able to go somewhere and not see every little thing that would aggravate a sensory issue, or automatically seeking the easiest exit should things go badly. I miss the chance to laugh until I cry with my girlfriends and not have to be the responsible one all the time. I miss just being, not doing and not thinking.
Tonight I am better. I sit in the quiet, with my best friend and soul mate snoring softly on the couch nearby as I write, just to be near me. My boys are sleeping peacefully. I checked them a moment ago, and watched them as they slept, amazed that I have been entrusted with not one, but two boys so precious. Our world is different, changed by the little boys we have been blessed with, and that world has it's triumphs and it has it's sacrifices. But we will travel that world with thanksgiving, and one day, our time will come.
Friday, 4 October 2013
"Come At Me"
A couple of weeks ago I wrote a post where I talked about some of the feelings and issues that school holidays raises for me, having a child with autism, severe developmental delays and major sensory issues, and I basically promised myself that I would do better this time round. Instead of getting into a funk around school holidays and being jealous of the world while my boy tries to get his head around the massive change that is no school I would look to God and try to be thankful for the many blessings in my family. I also resolved throughout these holidays that I would write about some of the bigger things that happened, or that were on my mind throughout the holidays, both for myself, but also so that those who follow our story can get a better balance of our world, not just what inspires me to write every now and then.
So, I started these holidays with good intentions, and I wrote about them, which is just asking for trouble. I pretty much waved a red flag at life, and at every sensory issue and behaviour that The Bubbly One has and yelled "COME AT ME!!"; and the next day all hell broke loose. With all of my great intentions I somehow forgot about the obligatory sensory madness my boy immerses himself in on the first Monday of every holidays. I actually jotted down some notes about that day because it was so full-on that even I was a little shell shocked. Other than that one day, our experiences this school holidays have (so far) been overwhelmingly positive, but every holidays we have this day, where The Bubbly One has to come to grips with the idea of no school and to cope with that he unleashes his sensory arsenal. It's pure chaos for the entire day, and by the time we've recovered something great's happened and I'm writing about that instead.
So before I move onto the rainbows, here is the storm that was the first Monday of these holidays:
2:30am: The Bubbly One wakes up. I'm woken by the sound of him banging on the wall. Sometimes he will go back to sleep once he has one of us beside him so I hop into bed with him. He thrashes around, babbling and agitated. He bangs the wall, then he begins to hit his forehead with his fist while not quite screaming, but close to it and still loud. I stop his hands and ask him what's wrong. He screams and hits at me. I take his hands again and ask him to lay down and he does and starts to fall asleep as I sing to him and hug him. Then he bolts awake and the hitting and banging begins again. This repeats a few more times and after 20 minutes he's not settling and is getting more worked up, so I give him another dose of his Catapres like his paediatrician said we could, and some paracetamol in case he's in pain because he often can't tell me when he's that agitated. The screaming turns to whining and the hitting turns to bear hugs and kisses with an occasional hit until it's like a switch is flicked, and he crashes. I get back into my own bed at 4am and The Little One wakes up. I'm semi awake still so I figure this is good and we'll get a sleep in tomorrow. I feed him and he goes straight back to sleep. Such an easy baby this one!
6:30am: Daddy kisses me goodbye and tells me that The Bubbly One has been awake since before 6. I go the lounge room to find him watching "Shrek" with a mountain of shredded paper around him. The Bubbly One used to be a smearer (I say "used to" with SO much hope that it doesn't come back), so ripping every piece of paper, cardboard or plastic he can find is annoying but tolerable compared to this. I make coffee while he shreds more. The movie is five minutes in and then he's dragging me to change it. We were excited about him changing DVD's for a day or so because he'd watch the same thing over and over for weeks on end sometimes. Then we discovered that the rapid changing of DVD's was so that he had access to the colourful covers and inserts. It seems that the newspaper he was allowed to shred wasn't good enough. It HAD to have The Wiggles, Sesame Street or one of his other favourites on there. So I redirect him from the DVD player, and it starts:
Slamming doors, banging the walls, yanking out the cutlery drawer so that the contents crash to the floor, banging the dining chairs against the table and tiles. Upending the baby swing (it's empty- he doesn't hurt his brother, thank God) and slamming the frame into the wall repeatedly, pushing the TV back into the wall. All while crying and screaming loudly and hitting his forehead with his fist or iPad in between. Then he finds a scrap of paper and he retreats to the lounge to shred it.
I make his breakfast thinking that perhaps with some food in him he'll feel better, or at least be distracted. I hear him jumping on the couch as I do it, and pulling the vertical blinds from their fittings one at a time. Before he is allowed to eat his breakfast we put them back up. I feed The Little One breakfast and gulp down my cold coffee.
7am: He doesn't want the toast he chose. He's in the fridge, slamming the door back against the wall, opening and closing the door, each time looking for something that clearly isn't there. I ask him to show me what he wants and we also check the fridge in the garage. Again, whatever he's thinking of isn't there. He goes to the toy cupboard and points to his magnetic numbers. I get them down and he dumps them out on the floor and begins chewing on them. Redirection to put them on the whiteboard earns me a few thumps and slaps to my back when it is turned. It doesn't hurt particularly, but I worry for the man he will become, and for us if he is still prone to lashing out. He stops hitting me when I tell him "gentle hands" and again hits his forehead which is growing red. I have a flashback of seeing his friend at school doing the same things. Learned behaviours are one of the pitfalls of his otherwise amazing school.
It's about holidays, I know it is. He misses school and he doesn't understand why he's not getting ready. I go through the social story with him again. He takes it off me and throws it in the bathroom, slamming the door (he used to throw them in the toilet so this is progress). He begins to spit, and it calms him a little. The spitting started after he had his tonsils out and he had a bad taste in his mouth. Then he lost a tooth and spitting through it was fun. So he spits over and over again, wiping it on his sleeve until his chin and cheeks are raw. I try to redirect him to spitting in the sink, to spitting water in the bathroom, but it's not the same. He rediscovers his breakfast, gives me a new DVD (I hide the cover), retreats to the lounge and eats with his iPad.
9:15: The Little One goes down for a nap. I call my mum hoping she can babysit him so I can take The Bubbly One for a swim and hopefully calm him down. I also want to take him for a drive past school so that he can see that no one is there as that normally helps, but I need petrol in the car and I can't do that safely with him in this mood. Before I can ask she tells me of her plans for the day so I forget about that idea. I shower quickly and can hear The Bubbly One banging something over the water.
I throw on my robe and run a bath for him in the hopes that some splashing and playing with shaving cream will help. He takes off his clothes without a drama, but baulks at getting in the bath. He'll only stand in the water and screams and hits when I try to wash him. I prompt him to get out and he sits, so I go to get a towel. He's out again when I return so I dry him and let him run while I get clothes. As I put on his pants I realise that his leg is wet again, and I look down to see the puddle on the tiles and his foot stomps in it over and over. "Wee" he says, and he begins to spit and wipe it down his clean arm. I clean up the floor and go to get his toothbrush. I feel something between my toes in the bathroom, and yep, there's a small nugget there which he obviously threw from the bath while I got his towel. As I finish dressing him I hear The Little One wake up again and I feel guilty because all I've done with him is feed and change him in between dealing with his brother.
10am: I give The Little One his bottle in his room where I cuddle him and talk to him, and all I can hear is bang, rip, rip, riiiiiiip, spit, bang, bang, riiiiip. I realise that the bang is the sound of the DVD cupboard which he's learned to open and the ripping is the rest of the DVD cover inserts that I'd saved. I resolve to buy a folder for the DVD's and just get rid of the covers the next day and to take the boys outside as soon as The Little One is finished.
10:20: I realise after about ten minutes that it's quiet and I exhale, not realising that I've been holding my breath (I do that a lot and clench my jaw when I'm stressed and holding it in). I change the Little One and come out to find The Bubbly One sitting angelically on the floor, not up to anything apparently. I put his brother on the floor and go in search of advil and breakfast for me. I can't be bothered making toast even by this stage so I make a meal replacement shake so I don't eat crap all day when I'm finally hungry. I tell The Bubbly One that after I make my milkshake we'll go outside (he has to be supervised or he throws things over the fence and has a tendency to fall off things and hurt himself due to low muscle tone).
The Bubbly One then comes in and starts pulling on my arm to go outside NOW and I see that he's chewing something florescent green and shimmery blue. He won't show me what it is and runs away laughing and chewing madly, so I give chase, catch him and pry open his mouth. It looks like a fish, but it's squishy. Actually it's a squidgee- a fishing lure, or part of one. I find the three prong hook about a metre from The Little One on the floor (and grow a few more grey hairs) and the rest of the "fish", and I find the rest of the pack of them attached to a fishing DVD in the DVD cupboard I'd heard open earlier. By this stage The Bubbly One is throwing yet another banging, hitting, screaming tantrum over the fish I won't let him choke on. So I grab my shaker and open the door to go outside so he can blow off some steam.
Then my neighbour starts their chainsaw.
I stopped taking notes after this, and two weeks later I can't quite remember the details of the rest of the day, though I do know that the chainsaw continued through most of the day and that I ended up putting the boys in the car and taking a very short drive just to get out, while watching the petrol gauge get lower and lower. I chased my tail a lot and I chased The Bubbly One a lot, but because he was afraid of the chainsaw his behaviour did slow down and he got clingy and whingy instead, which was easier to manage. Daddy came home a little early, which was the best surprise, and he let me vent so I could move on. The Bubbly One fell asleep easily that night, and only woke briefly through the night, and the next day, though still a bit challenging, was a lot better.
It was a full-on day, but I'm pleased to say that I didn't indulge in the massive pity party that I normally would have. I did a lot of huffing and puffing in disbelief that so much could go on in such a short time, I raised my voice more than a few times, I had a cry in the shower, and I posted that it wasn't a good day on my facebook page, but I think I managed to keep it in perspective, because it could have been worse, and as much as it drove me crazy, there wasn't anything catastrophic about anything that happened that day. I think had he not had a day of vacation care on the horizon later in the week I might have been more negative, and tired before it even began.
It was the low point of what has been a great holidays for us and at bedtime I got a hug and lots of kisses from a little boy who was even more exhausted than I was. It was hard on both of us and had I not kept notes the day would just be a tired, stressful blur. But I wanted to write about it, so that the next time I can try to keep things in perspective, so that the next time I can better prepare myself and make plans- to have fuel in the car and maybe to have a sitter booked for The Little One so that I don't feel like I am letting him down by not having the time for him that I have when his brother is calm and settled. But most of all, I wanted to remind myself that it passed, and that while the world may spin out of alignment for me for one day, it is just a small taste of what my son experiences all the time. Six months ago we had two weeks of days like this over Easter, and six weeks over Christmas before that. That he managed to overcome all of this in one day this time around, and have a pretty awesome holidays just shows how far he's come, and I couldn't be more proud of him.
So, I started these holidays with good intentions, and I wrote about them, which is just asking for trouble. I pretty much waved a red flag at life, and at every sensory issue and behaviour that The Bubbly One has and yelled "COME AT ME!!"; and the next day all hell broke loose. With all of my great intentions I somehow forgot about the obligatory sensory madness my boy immerses himself in on the first Monday of every holidays. I actually jotted down some notes about that day because it was so full-on that even I was a little shell shocked. Other than that one day, our experiences this school holidays have (so far) been overwhelmingly positive, but every holidays we have this day, where The Bubbly One has to come to grips with the idea of no school and to cope with that he unleashes his sensory arsenal. It's pure chaos for the entire day, and by the time we've recovered something great's happened and I'm writing about that instead.
So before I move onto the rainbows, here is the storm that was the first Monday of these holidays:
2:30am: The Bubbly One wakes up. I'm woken by the sound of him banging on the wall. Sometimes he will go back to sleep once he has one of us beside him so I hop into bed with him. He thrashes around, babbling and agitated. He bangs the wall, then he begins to hit his forehead with his fist while not quite screaming, but close to it and still loud. I stop his hands and ask him what's wrong. He screams and hits at me. I take his hands again and ask him to lay down and he does and starts to fall asleep as I sing to him and hug him. Then he bolts awake and the hitting and banging begins again. This repeats a few more times and after 20 minutes he's not settling and is getting more worked up, so I give him another dose of his Catapres like his paediatrician said we could, and some paracetamol in case he's in pain because he often can't tell me when he's that agitated. The screaming turns to whining and the hitting turns to bear hugs and kisses with an occasional hit until it's like a switch is flicked, and he crashes. I get back into my own bed at 4am and The Little One wakes up. I'm semi awake still so I figure this is good and we'll get a sleep in tomorrow. I feed him and he goes straight back to sleep. Such an easy baby this one!
6:30am: Daddy kisses me goodbye and tells me that The Bubbly One has been awake since before 6. I go the lounge room to find him watching "Shrek" with a mountain of shredded paper around him. The Bubbly One used to be a smearer (I say "used to" with SO much hope that it doesn't come back), so ripping every piece of paper, cardboard or plastic he can find is annoying but tolerable compared to this. I make coffee while he shreds more. The movie is five minutes in and then he's dragging me to change it. We were excited about him changing DVD's for a day or so because he'd watch the same thing over and over for weeks on end sometimes. Then we discovered that the rapid changing of DVD's was so that he had access to the colourful covers and inserts. It seems that the newspaper he was allowed to shred wasn't good enough. It HAD to have The Wiggles, Sesame Street or one of his other favourites on there. So I redirect him from the DVD player, and it starts:
Slamming doors, banging the walls, yanking out the cutlery drawer so that the contents crash to the floor, banging the dining chairs against the table and tiles. Upending the baby swing (it's empty- he doesn't hurt his brother, thank God) and slamming the frame into the wall repeatedly, pushing the TV back into the wall. All while crying and screaming loudly and hitting his forehead with his fist or iPad in between. Then he finds a scrap of paper and he retreats to the lounge to shred it.
I make his breakfast thinking that perhaps with some food in him he'll feel better, or at least be distracted. I hear him jumping on the couch as I do it, and pulling the vertical blinds from their fittings one at a time. Before he is allowed to eat his breakfast we put them back up. I feed The Little One breakfast and gulp down my cold coffee.
7am: He doesn't want the toast he chose. He's in the fridge, slamming the door back against the wall, opening and closing the door, each time looking for something that clearly isn't there. I ask him to show me what he wants and we also check the fridge in the garage. Again, whatever he's thinking of isn't there. He goes to the toy cupboard and points to his magnetic numbers. I get them down and he dumps them out on the floor and begins chewing on them. Redirection to put them on the whiteboard earns me a few thumps and slaps to my back when it is turned. It doesn't hurt particularly, but I worry for the man he will become, and for us if he is still prone to lashing out. He stops hitting me when I tell him "gentle hands" and again hits his forehead which is growing red. I have a flashback of seeing his friend at school doing the same things. Learned behaviours are one of the pitfalls of his otherwise amazing school.
It's about holidays, I know it is. He misses school and he doesn't understand why he's not getting ready. I go through the social story with him again. He takes it off me and throws it in the bathroom, slamming the door (he used to throw them in the toilet so this is progress). He begins to spit, and it calms him a little. The spitting started after he had his tonsils out and he had a bad taste in his mouth. Then he lost a tooth and spitting through it was fun. So he spits over and over again, wiping it on his sleeve until his chin and cheeks are raw. I try to redirect him to spitting in the sink, to spitting water in the bathroom, but it's not the same. He rediscovers his breakfast, gives me a new DVD (I hide the cover), retreats to the lounge and eats with his iPad.
9:15: The Little One goes down for a nap. I call my mum hoping she can babysit him so I can take The Bubbly One for a swim and hopefully calm him down. I also want to take him for a drive past school so that he can see that no one is there as that normally helps, but I need petrol in the car and I can't do that safely with him in this mood. Before I can ask she tells me of her plans for the day so I forget about that idea. I shower quickly and can hear The Bubbly One banging something over the water.
I throw on my robe and run a bath for him in the hopes that some splashing and playing with shaving cream will help. He takes off his clothes without a drama, but baulks at getting in the bath. He'll only stand in the water and screams and hits when I try to wash him. I prompt him to get out and he sits, so I go to get a towel. He's out again when I return so I dry him and let him run while I get clothes. As I put on his pants I realise that his leg is wet again, and I look down to see the puddle on the tiles and his foot stomps in it over and over. "Wee" he says, and he begins to spit and wipe it down his clean arm. I clean up the floor and go to get his toothbrush. I feel something between my toes in the bathroom, and yep, there's a small nugget there which he obviously threw from the bath while I got his towel. As I finish dressing him I hear The Little One wake up again and I feel guilty because all I've done with him is feed and change him in between dealing with his brother.
10am: I give The Little One his bottle in his room where I cuddle him and talk to him, and all I can hear is bang, rip, rip, riiiiiiip, spit, bang, bang, riiiiip. I realise that the bang is the sound of the DVD cupboard which he's learned to open and the ripping is the rest of the DVD cover inserts that I'd saved. I resolve to buy a folder for the DVD's and just get rid of the covers the next day and to take the boys outside as soon as The Little One is finished.
10:20: I realise after about ten minutes that it's quiet and I exhale, not realising that I've been holding my breath (I do that a lot and clench my jaw when I'm stressed and holding it in). I change the Little One and come out to find The Bubbly One sitting angelically on the floor, not up to anything apparently. I put his brother on the floor and go in search of advil and breakfast for me. I can't be bothered making toast even by this stage so I make a meal replacement shake so I don't eat crap all day when I'm finally hungry. I tell The Bubbly One that after I make my milkshake we'll go outside (he has to be supervised or he throws things over the fence and has a tendency to fall off things and hurt himself due to low muscle tone).
The Bubbly One then comes in and starts pulling on my arm to go outside NOW and I see that he's chewing something florescent green and shimmery blue. He won't show me what it is and runs away laughing and chewing madly, so I give chase, catch him and pry open his mouth. It looks like a fish, but it's squishy. Actually it's a squidgee- a fishing lure, or part of one. I find the three prong hook about a metre from The Little One on the floor (and grow a few more grey hairs) and the rest of the "fish", and I find the rest of the pack of them attached to a fishing DVD in the DVD cupboard I'd heard open earlier. By this stage The Bubbly One is throwing yet another banging, hitting, screaming tantrum over the fish I won't let him choke on. So I grab my shaker and open the door to go outside so he can blow off some steam.
Then my neighbour starts their chainsaw.
I stopped taking notes after this, and two weeks later I can't quite remember the details of the rest of the day, though I do know that the chainsaw continued through most of the day and that I ended up putting the boys in the car and taking a very short drive just to get out, while watching the petrol gauge get lower and lower. I chased my tail a lot and I chased The Bubbly One a lot, but because he was afraid of the chainsaw his behaviour did slow down and he got clingy and whingy instead, which was easier to manage. Daddy came home a little early, which was the best surprise, and he let me vent so I could move on. The Bubbly One fell asleep easily that night, and only woke briefly through the night, and the next day, though still a bit challenging, was a lot better.
It was a full-on day, but I'm pleased to say that I didn't indulge in the massive pity party that I normally would have. I did a lot of huffing and puffing in disbelief that so much could go on in such a short time, I raised my voice more than a few times, I had a cry in the shower, and I posted that it wasn't a good day on my facebook page, but I think I managed to keep it in perspective, because it could have been worse, and as much as it drove me crazy, there wasn't anything catastrophic about anything that happened that day. I think had he not had a day of vacation care on the horizon later in the week I might have been more negative, and tired before it even began.
It was the low point of what has been a great holidays for us and at bedtime I got a hug and lots of kisses from a little boy who was even more exhausted than I was. It was hard on both of us and had I not kept notes the day would just be a tired, stressful blur. But I wanted to write about it, so that the next time I can try to keep things in perspective, so that the next time I can better prepare myself and make plans- to have fuel in the car and maybe to have a sitter booked for The Little One so that I don't feel like I am letting him down by not having the time for him that I have when his brother is calm and settled. But most of all, I wanted to remind myself that it passed, and that while the world may spin out of alignment for me for one day, it is just a small taste of what my son experiences all the time. Six months ago we had two weeks of days like this over Easter, and six weeks over Christmas before that. That he managed to overcome all of this in one day this time around, and have a pretty awesome holidays just shows how far he's come, and I couldn't be more proud of him.
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