As 2009 draws to a close, I wanted to reflect a bit on the ups and downs of being a parent to a child on the autistic spectrum. I haven't really used this blog before to share stuff but feel inclined to right now. 2009 has been one of the hardest years I/we can remember.
Milo was diagnosed with Autism this June. It didn't come as a surprise as we had known for a few months before this. We started a developmental intervention for him called DIR/Floortime a couple weeks before his diagnosis. We as parents can do this at home by joining his interest, in the hopes of gaining shared attention, engagement, back and forth communication, problem solving and later, pretend play and logical thinking. He has been doing pretty well in the 6 months of using this approach. He has more engagement, and much more emotional connection, especially with me and James. We have a Floortime coach and a Floortime Occupational Therapist, and since he has been seeing his OT, he has been able to get on and enjoy using a swing (which helps him with regulation) as well as learning to ride a bike. She has been great with helping him get more regulated in general.
His speech is coming along, but at a slower rate. His receptive and expressive speech are much better and the summer was a real time of progress thanks to the zeal of a student speech therapist. She and Milo had a great rapport, but unfortunately she took off to New Zealand. His current speech therapist has worked on a few things that have really helped him with some basic sentences that he does use alot now. In February he could only saw a few two word sentences, now I think his longest sentence has been a 7 worder. He is even asking "What?" "Where?" and "Who?" questions too.
His play skills are still fairly slow to progress too but he has been doing some basic symbolic play with his bears which I think is largely if not all due to the DIR approach. He is showing abstract thinking skills too.
Last year and into this year Milo's obsession's were eggs and buckets and spades.. for the past few months, numbers have taken over with a vengeance. He sees them everywhere, talks about them, draws them, counts to past 300, loves to look at the tape measure, basically loves anything number related. This intense fixation can be quite hard to deal with day in and day out (to say the least) but it is a tool to join him in his play as he so loves them. He is also learning to read and write!
His emotional understanding is also coming along too and we talk about them and make faces all the time, however it is still hard for him to talk about what he is feeling during an emotional outburst or meltdown, but afterwards he more often than not can tell us "why" he got upset in a word or two, so this is good progress. He also notices children crying all the time which is another great thing. Oh and he also started developmental preschool this November and is settling down there but struggles to interact around his peers, and is still in general fearful of children his own age.
So that is a brief over view of how Milo is doing. The real struggle comes for us as his parents having to put in the Floortime play with him on a day in and day out basis. As James is at work so much, it is largely left to me to put in the 6-8 20 minute sessions a day. Right now I am pretty burnt out with it. I don't get too many breaks from life apart from Milo so have been feeling the brunt of this recently. It does take a concerted effort to constantly be joining him in his play, and make it fun with lots of affect. It is actually very exhausting. Getting into the repetitious world of an autistic child on a daily basis can really take it out of you. Of course there can be some very encouraging things that happen during these play times, but also it can be fairly unrewarding too when he gets very self absorbed and unengaged as well.
James and I also don't get much time together, which doesn't really help, and even doing enjoyable things as a family is not easy due to how unpredictable Milo can be in public at times. So the stresses and strains of looking after Milo take their toll on us both individually and as a couple. Life seems to be full of driving to his appointments, running errands and putting in the play time with Milo, so not a whole lot of variety. Even seeing typical children interact or spending time with typical children can be fairly painful as it brings it home even more. Also due to Milo having Medicaid where we get all his medical treatment and therapies for free, James has had to basically put his career in 3D on the back burner due to the instability of work in this industry which is hard on him. That being said, it is an opportunity to strengthen our faith more and trust that God has all this in His hands. He has certainly put us in the right area for professional support and we are very thankful for that.
I hope to renew my motivation as the new year comes round to put more effort into Milo's intervention. The 3-5 year window is a crucial time for a child with autism as their brain is still very young and easier to rewire. I am sure 2010 will have its ups and downs, but we have to press on to whatever God has in store.
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4 comments:
Reading your story Sarah makes me realise just how hard it can be bringing up an autistic child. I am sure the rewards are tremendous but getting there hard and pinful.
You sound like you are doing a wonderful job and I don't sense 'poor me' at all.
I will be thinking of you more in my prayer time. May you recieve the wisdom and strength that you need on a daily basis. Blessings. Barbara
Thanks so much Barbara. Prayer is what we need. Milo has been doing so much better the last week and a half actually.. such a jump from how he was over Christmas. He is back to his normal routine of school and therapies so this is helping. I am really able to see the incredible progress he has made from 6 months ago. It is a reminder to focus on all the positives. He is very interactive now among lots of other progressions!
It seems such a long time ago you first told me about Milo and I told you about Ben. I always felt that they had many of the same traits, more than other kids and the way you describe him could have been written by me about Ben. Ben isn't one of these pattern thinkers, or verbal thinkers, Ben thinks in pictures, that is fairly apparent. Does Milo? Ben has a whole library of pictures in his head, he stuns me with how clearly he remembers things, but then you would if you weren't remembering words you stored up in your head but staring at a filed image. He's never wrong either, even when I think he is.
This thing about numbers is not an obsession though, Sarah. It's different. Ben is obsessed with, let me think, Thomas the Tank Engine. Much less than he was or he could be, because I am trying hard to normalise his relationship. I'm not about to shatter his trust by removing it, but I will control access. But numbers is way more than a fixation, an obsession. It is his security. This is why he counts under pressure. Way before I knew Ben was autistic, I used to come to nursery, he saw me and started to count immediately. It is his safe place where he can regulate himself. 60 always comes after 59. He lacks an ability to self-regulate, like Milo, hence the swing, so numbers give him that support. Ben never went to Thomas or another obsession at that time, it was always numbers. So although it looks like an obsession, it is way different. It goes to the very core of autism, the need for calm, the lack of emotional maturity and the lack of ability to handle the various emotions that flood you. Numbers, unlike people and situations, or emotions, make sense, they can be handled.
That does not mean that there is not any obsessing about numbers, but it is so deep-seated that you can't shake it like you can shake Thomas, in Ben's case, or Elmo, in Austin's case. Those two I have shaken, with only minimum effort. Numbers is Ben, as much as supporting Liverpool is me. Way more. The only way to shake numbers is to bring more calmgive him more control of what he feels and more ability to self-regulate.
You know Ben can count to a thousand, he can read and write and I've never taught him to do any of it. He wrote a story the other day...sfafh onion ffhfd zoo afhfh Chloe Ben fjggh Austin fhg yoyo fghsgh...something like that, he was telling me a story and writing it up for Chloe, Jaime's daughter, about them eating and going to the zoo and coming back and playing. Pure magic. I've kept it. But, the thing is, these numbers, it gets better. Ben is still counting sometimes, but it doesn't seem to be in control, it's like he lapses. We still see door numbers as we walk through the street. He checks them off. I thought he was doing the pattern thing, 1 3 5...he isn't, he's memorised the whole bloody street. He knows which ones have blue and white numbers, which are green and white. Never wrong. But it does get better if you bring calm. If Milo can handle his emotions better and better, then he will need less and less numbers. He will always see them. He'll always know your number plate, your age, whatever. But when he finds more tools to regulate himself, he'll rely less on 5 following 4.
Lots of love
Lee
From a long time ago....
http://www.facebook.com/board.php?uid=2207942310&f=524290&start=60&hash=8d446c410f1ffec0a8905673d2122f7c#!/topic.php?uid=2207942310&topic=10709&start=0&hash=cf7780f26431613389f62a7b2ca5b2ce
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