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.