Things can only get better. Is that right? Is that how it works for families with kids with FASD?
Well no. Of course not. Things are quite often decidedly mixed. But they can change for the better. Nothing is static in life, and with appropriate supports and better understanding of the child, the condition and how to help, things can improve.
Take our son. He’s thirteen now. A year ago at this time, he was in crisis. Life was too much for him. He was refusing school a lot of the time, desperately upset when he did go. He was having daily, twice daily, meltdowns. The stresses on him were intolerable.
So, a year on, how is he managing life? How are we managing? Things are a lot better. We couldn’t change him, so we changed his environment. Also, he’s changing. While he’s socially delayed, he is growing up as all kids do. And that makes a difference. Here’s some examples from this week.
One of the simplest signs both of a growing maturity and of a calmer environment is in our mornings. Previously, we had to be with our son all the time. We had to help him occupy himself almost every minute of the day. Leaving him alone would lead to problems. He couldn’t self-regulate and he couldn’t keep his mind calm enough to do activities on his own. Now it’s much, much easier. Albeit with the help of games on the phone, but also with creative film-making and vlogging, our son keeps himself busy, often for hours on end. Since we both work from home much of the time, this is a positive benefit, and it’s a good sign of how his world is changing for the better.
Another positive development has come through school. We’ve discussed before what a huge change the move to special school was. How it relieved the pressure on our son, and how they let him thrive through the most wonderful theatre and music programmes. That’s all true, and he goes out to his taxi without protest every morning, a far cry from the terrible days of a year ago, even if he wishes for the small netbook his mainstream school let him use in lessons, and moans about “too much writing”. He is still happy enough to go, and is clearly thriving under the care of a fantastic, dedicated and talented staff.
Our little man and his Mum were in a shop this week looking for a drink and some sweets. His mum let him go in alone with £5.00 while she waited outside with the dog. He looked at the price of the slushy he wanted, and the bag of sweets and worked out that they cost. He then worked out how much change he would have, and before he purchased them he asked Mum if this was ok. To our knowledge, he hasn’t put all this together in this way before. He understands that you have to pay for things in shops, and has sometimes been able to work out if he has enough money, but has never proactively done the maths himself, weighed his options so calmly and asked before spending. That is real progress.
He is learning and applying his lessons to life. It’s tied to school. They have a tuck shop in morning break where the kids are encouraged to bring change and make small purchases. Apparently, it’s succeeding. It feeds in to success in his life skills homework book. He was able to tick off that task as successfully done. Homework that makes him feel better about himself, rather than driving him to tears and despair. That is a novelty. And while its harder than the canteen at his old school (there he paid electronically by fingerprint with no concept of the cost of items), it’s better for him in the long run, as it’s teaching him to cope in real life.
Another example. This evening, he was partly dysregulated. That’s a word he knows and he sometimes understands that he needs to start using calming strategies or go to a safe space before he has a meltdown. I was offering swimming, but he didn’t want to go. He stated that quite forcefully. Then he started building a marble run. All the while muttering repeated phrases under his breath, most of them bad language. Over and over again. Often a sign a meltdown is coming. And often the plastic marble run pieces will fly as his frustration boils over. I was really worried, but I didn’t want to push him out the door. This usually ends badly. But not tonight. He focused in, and he built two big marble runs. He used a favourite toy to calm himself, instead of letting his feelings overwhelm him. Then he proudly demonstrated his efforts to his Mum and me. That’s real progress. In the past either I would have dragged him swimming to re-regulate through physical activity (still an important option), or he would have had a full meltdown. Now, he’s starting to understand himself. And we let him make the choice. We are learning too.
Two days ago we had to go to Great Ormond Street for a gruelling round of three pre-op appointments for an upcoming hand surgery. A nasty rainstorm had every anxiety ramped up in the drive to the train station. Before getting on the train we purchased some “lava putty” at a toy shop, and during the whole trip he used this very consciously as a calming mechanism. “I am good with sensory toys,” he said. And he was. A few years ago there is no way we would have made it through that day.
None of this means life is perfect. Meltdowns happen. Earlier in this day there were indeed parts of a marble run broken, but we minimised the scene and quickly moved on – to the point that a short time later he was helping to tidy up the mess. The challenges are all very real. We can’t relax our guard too much or things do fly. We have to work to involve him in family activities, and part of the success in less stress lies in the things we don’t even try to do anymore. We had to let go of expectations. FASD is very real and it affects him all of every day. It affects us too.
But, things are getting better. His world is slowly, slowly changing. We can perhaps start to think about a transition to adulthood that can be managed without devastating trauma. We’ll see. There’s a long, long way to go. He’s growing up, and his world is a little brighter for it – and for the changes we have made in our world to help him, and us, get through the day.