World Teachers Day

Facebook tells me today was World Teachers Day. Ours' are so great they got 2 weeks off to celebrate! 😜

In all seriousness though, I've watched my boy grow and thrive under the teaching of some of the most skilled, compassionate and creative people I've ever met. 

I'm no teacher, and I'm always fascinated at the methods used, to help him towards what they know he's capable of. The amount of thought, knowledge and planning that goes into a single lesson is mind boggling, and I know they never switch off- they're always thinking of their students, they genuinely care about our families, and they're always striving to learn and develop themselves too.

I've seen my Bubbly One go from an anxious little boy who was so very aware of his limitations that he'd run and hide when something new was presented, to a boy who loves to learn, has real friends, and who is comfortable in his own skin. A boy who is reading, and typing- and who argues with me on his device like the 8 year old he is!

A few years back all I wanted was my boy to be happy and safe, but these amazing people knew he was capable of so much more, and they've taught me that too, along with a host of other things no parent training course possibly could. They are like family and we owe them so very much. 

Quite a few follow this page too, so if you are reading this, take a well earned bow, a high five, a big Bubbly cuddle, or raise a glass. We love you guys and we're so very thankful for each one of you! 💙💙

Ready

Bubbly's trying to smooth out my frown lines again. He's not silly, he knows when I'm stressing, even when I do my best to hide it.

The panel in our area sits tomorrow to determine school spots for next year, and I just got Little One's preschool offer for next year today. Our Plan B is much the same as this year- two 6 hour days again and if he gets EI there an extra three hour program once a week (still unconfirmed but he should get in). 

I'm trying to be grateful. Our preschool are amazing. They provide 1:1 where no one else will. He loves them, and they love him. The third day that was a tiny possibility would've opened my options up as well as his though.

I'm trying to be gracious. There are other kids out there, older kids, who need spots as much as Little One does, who've probably patiently waited that extra year.

I'm trying to be patient. What's one more year? My career and my sanity have waited this long, and they're only little once. He'll keep learning and progressing.

But I also know what my Little One stands to gain from an early start where we've seen Bubbly thrive. Call me selfish, but every mother wants what's best for their child and their family. 

It sucks to have no real say over where my child will be educated. It sucks to prepare yourself for disappointment. It sucks to have his future in the hands of a group of strangers who will never even lay eyes on him, who've never seen him walking through the school singing a rare word: "READY!!". He's right, he is SO ready. 

I'm ready too. It's not just Little One who needs to stretch their wings and step out into the world. It's hard to have opportunities laid out before you- to really help others, to do what you're good at- but to have to shelve any real thoughts and plans until you know for sure it's safe to get excited.

It will work out. It always does, even if it's not in the way I hope or expect. So I'll try to leave this here, to breathe and enjoy the cool little fingers smoothing out my forehead; and to watch the dancing, giggling little boy who really couldn't care less which plan comes to fruition next year.

How To Get Your Mother Out Of Bed- by The Little One

First give your mother ample opportunities to get up, and stay up. That bed is like a magnet that keeps drawing her back. Enlist the help of your musical friends. They may be thrown into hard to reach places, but these casualties will return in due time (besides, there's plenty more in Bubbly's room). 

Be kind and accept the food she makes you graciously. If it's not to your liking then release it to some poor soul who likes to eat off the floor. The food's always gone soon enough so they must be well-nourished.

Attempt independence. After all, she spends hours of her week on just that with you. Slowly drag a chair towards that high up food or musical item. Climb onto the bench. Safety first so alert her to the fact that you're stretching your horizons and knock something over, preferably the sugar. We haven't had ants for a while. 

If all else fails and she still returns to bed, appear angelically by her bedside. Stroke her cheek and unleash your most devastatingly cute smile (you'll need full eye contact for this one. I know, it's hard, but it's important). Then if she still rolls over and hides under the blankets gently place the full water bottle (sans lid that you broke last week) on the bed beside her. The gentle flow of icy water seeping into her clothing, pillows and mattress protector will ensure she is yours for the rest of the morning. 

Living

Have you ever sat and watched several hundred photos transfer from your phone to your computer? I did that for 685 for them yesterday, and it was like watching the last 6 months or so come to life in front of me- the good and the bad. I don't just use my phone camera to capture the special moments that pop up with my boys, or even the every day. My camera roll is like my diary, my to-do list, and my "important stuff I need to remember" list. So not only were there two little boys growing before my eyes, there was also all of the hard stuff I've had to keep records of this year. Records of property settlement, photos of the stuff that was already broken when we moved in here, NDIS legislation, obnoxious emails from NDIS planners, text messages from friends dealing with obnoxious planners. 

I saw my boys grow before my eyes. I saw joy on their faces everywhere they were- at school, playgroup, with their therapists, with me and with each other. I saw them awake and asleep- because everyone knows that a sleeping child in our world is a "kodak moment"!

But it wasn't just their story this year that I saw, as has so often been the case in my camera roll. I saw me too. For the first time I sucked up my hatred of being photographed and I saw myself and the joy that my boys and I feel together. I saw our journey and our growth together.

I saw the Support group that I've been leading this year. The happiness on the faces of women who have come to be dear friends as they enjoyed each others company and the time they could spend together, just as they were.

I saw the special needs swimming club that I am so stinking proud of, but which I was also kind of pleased to be handing over to others with more time to love it. I saw my Little One clinging to his instructor, and I saw him gain confidence and skill in the water, and I saw Bubbly having the BEST time despite his annoyance with actually having to follow a lesson plan!

I saw the hard stuff. My battles with the NDIA to get my children the supports that they deserve, and the fights for others' children as they reached out for support against a system that promises much but doesn't deliver without a fight. I saw an advocate emerging in those photos, something I never thought I would call myself.

My overwhelming sense as I looked at those photos though, is that we've really LIVED this year. We didn't just survive. We didn't just cope. We stepped out of our comfort zone again and again, and we lived to tell the tale, even if that tale didn't always have the ending we envisaged.

Why I Don't Worry About My Son's Future

There's a common thread in many posts about having a child with a disability, and the thing that comes up most often is the worry about "what happens when I'm not here anymore".

This post isn't about that.

I don't think about it too much, because there are more than enough things to think about in our present. Should the unthinkable happen to me I know that my boys have a great dad and grandparents that love them and who will do their best to give them everything they need. Old age though? I just can't think about it. I know that practically, they will have somewhere to go. I hope that they can be together, and that they live in a  time when they will have some choice in where and how they live. I can't imagine not being there for my boys, but I choose to trust in God to provide what and who my boys need when I'm not here any more. That's all I can do. He's never let me down before when they needed something and I have some peace for their future in knowing that.

But as I said, this post isn't about that. It's not about the "what's" of adulthood for my boys, it's about the "who's".

Who will they spend their days with? Whose lives will they impact? Who will they become?

There's a common pattern in many discussions online. It doesn't matter what the discussion is, but it tends to be those controversial topics like desiring a cure for autism, ABA, whether autism is a disability; we all know the topics that get people hot under the collar, and here's a sample of the comments that fire me up every single time:

"If your child was severe you wouldn't feel that way."

"Do you really want people to have to change your adult child's nappies/diapers?"

"They'll never get a job if you don't..."

"They'll be a burden to the taxpayer."

There are more, but I'm well aware that the above are incredibly triggering for many people, as they are for me. The thing is though, that they're not triggering to me because I am worried about those things. They are triggering because of the underlying attitude that feeds them. The attitude that says that a severely disabled person is worth less in our society, and that should your child grow to be a severely disabled adult it's because of some failure on your part.

At least one of my children has been assessed as severely disabled, or having "high support needs". Bubbly has a severe global developmental delay which includes a severe intellectual disability as part of his autism "package". He requires high levels of support and supervision for everything he does. The Little One is too young for us to make that call yet, but if he too were to fall further and further behind his normally developing peers then you can include him in this too. So to those who would assume my position because of where my child falls on the spectrum:

My child is severe, and you don't speak for me.

I have at least one child who will need some level of care for the rest of his life. He is not likely to live independently. If he works it will be with substantial support, and if he is capable of that, and is happy, I will burst with pride. But if he doesn't? If the best he can hope for is a day program, and possibly needing support for things like personal care, why should that mean he is any less valuable to our society?

The overriding problem with all of these considerations is not the supports my son may need one day or what they might cost. The overriding problem is the lack of respect and value for people with severe disabilities these attitudes reveal in our community. Our community doesn't know what a severely disabled adult contributes to this world because for most, they live in a world where they're not lucky enough get to know any.

As a very green 19 year old Social Work student I fell into a practicum placement in a post school program for young adults with disabilities. My first day shell shocked me. I met people like I'd never met before. Adults my age and much older who needed full support with everything they did. Many requiring meal assistance, support to move around and yes, personal care assistance- including changing incontinence pads. Most were non-verbal, and many had behaviours our society would be uncomfortable with from an adult. Some posed a risk to others due to aggression.

I fell in love.

I stayed, for over a decade until my own family joined the disabled community. I spent twelve years of my life with people who changed me forever, and who prepared me for the most important job I'd ever have. I worked with people who 16 years later still make me light up, and who taught me more than my university education ever did.

They didn't work. They didn't live independently. They relied on others for feeding and personal care. They had to trust others to know them and to understand them. They relied on others to understand their limited communication skills and to advocate for them. Around half lived in supported accommodation, and I supported some of them through that transition. I supported some when their parents divorced, and others when their parents or siblings fell ill and passed away. I went to the funerals of those whose lives were cut short after caring for them in the days prior. They made me laugh. They made me grit my teeth in frustration. They made me cry- with every emotion you can think of, from deep sadness and worry, to overwhelming joy.

They stole my heart, and they helped to shape who I am today, and in doing that they've helped shape my family and the mother my children have received. They gave me more than I ever gave them, and they gave my family a gift they will never fully understand- peace about our future.

Those who remain severely disabled throughout their entire life don't feature in the inspirational stories that you read on the Internet. For many each day is the same. Progress is slow, and regression happens. Their families struggle- you do hear about that. Their care costs money- you also hear about that. But when do you hear about the contribution that the severely disabled make to our community? You don't, but it is there. Each individual, just by being who they are makes an impact on those who they spend their days with. In that community, one which is largely unconsidered, and undervalued by our society there is happiness. There are the threads that make up the tapestries of many lives, and they shine bright and strong amidst the many cares and concerns of this life.

There is love. There is life. There is happiness, and there is hope. The future will bring it's challenges, many of which I already feel inadequate to meet, but what's ahead is less important than who is ahead. I can tie myself up with worry for my sons, and a future I have little control over right now, or I can think of those who've walked before them, and look forward to meeting the men they will become.

Baking With Bubbly

How to bake a cake with The Bubbly One:

Step 1: Bubbly enters kitchen, grabs cake mix box and demands cake.

Step 2: Explain patiently to Bubbly that we need to cook the cake and it takes a little while (insert approximate Bubbly time e.g. One Sesame Street, 15 songs on YouTube, whatever).

Step 3: Open box. Console Bubbly because the contents do not look like the picture on the box (visual fail, thanks White Wings)

Step 4: Use the pictures on the box to gather and add ingredients. Tell yourself it's a sensory activity as he sifts cake mix from bowl all over bench. Protect remaining eggs from destruction.

Step 5: Pre-warn Bubbly that the beaters will make a loud noise.

Step 6: Warn him again as you put beaters together. All good, he's already hiding.

Step 7: Ease cake into oven without third degree burns as Bubbly tries to get his hands in that battery goodness.

Step 8: Grudgingly let him lick the bowl (if letting him have the bowl isn't true love I don't know what is!)

Step 9: Try to distract him from cake that takes an eternity to cook.

Steps 10-553: Show Bubbly the timer counting down a few dozen times and try to distract with something more appealing than cake. Look longingly at wine bottle as you put the eggs away.

Step 554: Remove cake from oven without burning yourself or Bubbly, or dropping the cake. Degree of difficulty added if Little One decides to join the fun.

Steps 555-632: Repeatedly talk about being safe and not touching the hot cake. Administer first aid when he sticks a finger into piping hot cake.

Step 633: Try to ignore meltdown for withholding cake that looks perfectly ready to him.

Step 634: Finally give cake that's cool enough not to burn his fingers or oesophagus

Step 635: Hide cake before he eats the whole thing, or possibly sigh and put cake away when he doesn't like it. Same cake, different day, so who knows if he'll eat it!

When One Door Closes

When you're going through a tough time it seems like everyone tells you to "Just take it one day at a time". It's good advice. I've said it myself many a time. So for a long time now we've been trying to do just that. One day at a time, sometimes even just one moment at a time.

I feel like a lot has been put on hold while we dealt with the major upheaval that is moving house with two autistic children, and sorting out the last of those ties that my ex-husband and I have financially. We're almost there. I think we have this co-parenting thing down as well as, if not better than most too, and I'm pretty proud of that. For so long though everything has been a matter of "After we sell the house...", "After we move...", that I seem to have forgotten what exactly I was going to do once those things were settled. When I was so busy it was also easy to not focus on how I was feeling, or to look too far into the future and worry. Logistically we're settled now. The worst is over as far as supporting the boys to transition to the new place. It feels like home. But those things I was going to do? I can't quite remember. I know I have a plan somewhere for the Little One with what I needed to do next with him, but more pressing is the need to stop and to breathe for a moment.

I tried really hard to ignore that feeling- it's just not possible right now. The kids need me. The Little One has a list of things he needs, and Bubbly especially is having a hard time of it at the moment. We've had to change his meds again, and we just don't seem to be able to get the right mix for him. The last couple of days have been like having the preschool aged Bubbly back again, except that at 3-4 years old I didn't have what he was capable of last year in my head. He's regressing and it scares me. I try to tell myself that he's just preparing for a big leap forward as he usually does, but it feels different this time. The thing is, he's not unhappy, far from it- but it's in my face over and over again just how severe he truly is, and today was a frustrating and potentially dangerous example.

It was already a rough day. With the addition of another medication Bubbly's ADHD meds seem to have been rendered useless, and his sensory seeking is giving me flashbacks of harder days. He needed to stay inside as he hurt his foot yesterday and had a nasty cut that he wouldn't keep covered. We did go for a drive to get out for a while, and I tried to keep both boys entertained (and failed miserably). When the Little One went for his nap I resisted the urge to collapse on the lounge, and tried to engage Bubbly in some activities he likes in the sunroom, which is his favourite spot in the new house. Evidently he wasn't keen though because he got up and started to shut the glass sliding door. This door is a bit tricky and has a habit of deadlocking itself (it's the pre-extension back door). I normally have my keys in my pocket for that reason- but for the first time today they were hanging up near the front door- and though I raced to stop him, he got that door shut, and it locked itself. Bubbly realised right away that he couldn't open it again. He tried a few times, and I jiggled and tugged at it to no avail.

Bubbly looked at the door, at me, and back at the door. He didn't lose it. He doubled over with laughter, waved, and yelled "BYE!!!" before bounding away to the lounge room.

I stayed calm. I knew The Little One's window was accessible from this room and not totally closed because there's a phone cord running through there to to the sunroom. When I got my contents insurance they told me that the style of windows we have (roller handles make them open outwards) are more easy to break in through, so I assumed I could easily break in. Do you think I could pry it open though? It may as well have been reinforced steel.  I'm really questioning the extra on my premium now for these "less secure" windows!

So I knocked on the back door. I could see Bubbly happily sifting what I thought was ash from the (cold) fireplace. After a bit of knocking and calling him he looked up.
"Buddy, I need your help" and I signed "help".
He bounced to the door, signed back and said "hep". Then he tried the door again, and after much coaxing I got him to try to flick the lock, praying it wasn't really deadlocked. It was. He waved again, and said "Bye", like it was no big deal, smiled, and ran off again.

After trying again to pry the window open, I went back and knocked again. "Bubbly, help Mum?" 
"Hep" and he giggled.
"Go to Little One's room. Find Mum."
He pointed. "Mum"
I tried again. One step this time.
"Go into Little One's room"
He looked at me funny and ran away again to resume his sifting.
He knows he's not allowed in his brother's room. 

We repeated this routine a few more times. I stayed calm. It didn't seem quite real and The Little One was still asleep. I did have my phone in my pocket though (thank GOD!) so I called Daddy thinking he might be able to break in. He came straight over and we talked tactics through the gate, which of course I had padlocked to prevent the boys or dog escaping.

There's a small hole in the screen door. If Bubbly could get the keys (which he'd done this morning to tell me he wanted to go in the car) he could poke them through the hole in the screen to Daddy and all would be fine. So I listened to Daddy knocking on the window behind Bubbly- who giggled at silly Daddy and continued ripping apart my fake potted palm (the polystyrene under the fake soil was the white stuff I'd thought was ash).

I knocked on the rear door again.
"Bubbly, open the door for Daddy."
I got excited when he went and opened the wooden door.
"Dad!!!" He giggled again and ran back to the lounge and the polystyrene he was making snow around the room (he even turned the fan on so it swirled around like in "Frozen").
"Bubbly, get the keys for Daddy"
He got up, went to the door, and I heard him say "Key!". Daddy said he was pointing at them, but he just didn't seem to get that we needed him to get them down. We tried every way of asking him to get the keys down but it just didn't gel. So Daddy climbed over the 8ft gate and tried to help me break into Little One's window again. Again we were unsuccessful.

I tried again to get Bubbly to go to his brother's room to see Daddy in the window. He finally went to the room and peered around the door frame. He saw us. He giggled. He reached in and touched his brother's foot, and he bolted out of the room he knows he's not meant to go into!

While all this was happening I tried calling six "24 hour local locksmiths" (it was 2:30pm Sunday by now). Only one answered, and he was an hour away. I was starting to sound a little frantic by now and explained that my disabled child and toddler were inside alone, and he said to call him back if we could't get anyone. I called an insurance company who were happy to sign me up for a fee but would then be an hour or so. We didn't have that long so they suggested the fire department to break a window.

"We can do that ourselves." said Daddy.

So we chose the least dangerous window- over the kitchen sink with the fly screen on the inside to stop the glass, and of course then Bubbly came to watch us through it and to dunk the tomatoes I had ripening on the window sill into the abandoned washing up water in the sink. The window was the same as the others in the house.
"Bubbly, the handle. Turn handle for Mum?"
"Han"
He waved and gestured around it several times, pleased to identify it for me.
I gestured "Turn handle. Round and round."
After a few repetitions he managed to crack it a few millimetres, and took off again.
Then he returned with the tv remote because it'd gone onto standby mode.
"Buddy, first open the window please? Round and round" It cracked open the tiniest fraction, and he returned to the window with a honey jar. "Hun?"
"Yeah buddy, open window then Mum can get honey."
He went to the drawer and got a spoon, and took off with the honey. So independent when he wants to be!

By this stage Daddy had a brick. He tried gently to break the glass, then had me check Bubbly was in the other room, aimed and threw it. The breaking sound gave me flashbacks of Bubbly running head first through a window last May, but I sucked it up and talked to Bubbly through the door when he came to investigate the smashing noises. That was the first time he began to look upset. Until then he'd thought the entire situation was highly amusing.

Daddy climbed in (I'd have had no chance!) and opened up. We cleaned up the glass, we cardboarded the window, and we cleaned up the polystyrene "snow" that was EVERYWHERE inside. The Little One slept through the entire ordeal.

So we survived unscathed other than the cost of a new window pane. I'm not a wreck because no one got hurt, but it's made me think, not only about the spare keys that I will be having cut tomorrow, but about how to proceed from here with Bubbly. He locked that door twice more this evening so he clearly didn't link up what had happened. At seven years old he struggled to follow very simple one step instructions. His communication stopped at identifying objects or people most of the time- and this was in a happy, baseline state. If he'd been distressed things could have been so much worse. I'm also conscious that at the end of last year he probably could have followed a couple of those instructions with enough repetition. There's a clear regression there, and it's not just with the move and the med change- it's been building for months now. I don't know where to go from here, but in the days ahead I'll be talking to people who I hope will have some ideas for us.