The stepping stones to independence

As my child takes another huge step in his life’s journey I feel my heart burst with pride.

Little man has come so far in such little time. If you asked me 2 years ago if I thought he would be at the place he is now, my answer would have been, “probably not” considering how bad things were once upon a time, this fact alone should be a comfort for any parent who are now stood in the shoes I once stood in.

We have some incredibly tiresome days, ones filled with rage and anger, others filled with anxiety and disappear.

Yet, one needs to understand that like anything in life, we take the rough with the smooth. Ok, at 4am when his well past that tired stage when his running around pretending to be a wrestler, crashing and banging as he repeatedly throws himself off the backs of the sofas, before gathering up speed and darting from one wall to another, roaring and shouting as he mimics those overgrown kids that consider themselves men on WWE, I do feel a rather sorry for myself, the siblings and even our poor neighbours.

Evenly the smooth part does come through, and although it normally last far shorter than that of the rough… It’s a delightful place to find yourself in.

Despite the issue we’ve been experiencing with Little mans reluctance to eat a packed lunch as opposed to something he can heat in the school microwave (this is no longer allowed) His still coping outstandingly well with all these major changes that have taken place.

I can slowly see the pieces coming together. His growing up and with it his learning the skills of independence needed to go with it. Yes, I worry he will have difficulties in adult life, but then again what mother doesn’t? Finally… I feel progress is being made and It’s this progress that fills me with hope for my little man’s future.

Here’s to another great week, next week…. I’m told positiveness is the key and I hope that this key opens many doors for little man.

When Special Interest become obsessive in children with Aspergers Syndrome

Special interests are great but sometimes pose a problem!

Its fantastic when your child diagnosed with Asperger’s syndrome has a special interest, one he/she can focus positive attention, gain enjoyment from and importantly, learn from. 

Little man, has always had a special interest in transport and although this often skips between trains, buses and the London underground, it always remains within this area. 

Little man also enjoys Lego since discovering how much fun it can be, this has become an additional interest of his. Though it should be noted that he does incorporate his special interest of the above, within his Lego play. He spends lots of time creating new models of transport, whether it’s a bus or a train, he could be there for hours. 

This however isn’t a problem, though his special interest in transport did reach the point of extremely excessive a year or so ago when he was back in mainstream school.

 I found Little man was constantly mimicking the transport announcements that he had studied and memorised to a perfection! He was also intensely interested in the mechanisms of transport, especially that of the bus doors. He would use his hands to act out the opening and closing motion and spent hours beeping, so much so that I could hear it in my sleep! No matter where we were, if little man saw sliding windows or doors, he would head straight for them, sliding them open and closed as to recreate the same motion of the doors on the bus. I remember visiting his doctor at CAMHS for an emergency appointment which had been organised because of the trouble he was having in school, his low self-esteem, the anger it was creating, along with a whole host of other issues which resulted from such difficulties. He spent the whole appointment sliding the windows of her office open, before bashing them back together in a loud distracting manner. His doctor could hear the beeping sounds he was making as-well as the monotone voice he put on as he mimicked the announcements normally heard when on a bus! Right there and then she drew the conclusion that his special interest had become somewhat extreme, and if such behaviour was getting in the way of life, it was time to limit it. 

This may seem, to some, an extreme thing to do! Why stop him from doing something that clearly makes him happy (after all, he was having the most horrid time in school). The thing with Aspergers Syndrome and special interest, is that these interest can actually restrict interest and focus in all other areas in life. Basically, his interest in transport had reached a point where he could no longer focus his attention on anything else! It was clear to see that this had become much worse since things had could hugely down hill at school, that lead his doctor to believe that as-well as engaging in his obsessions because he enjoyed them, he had also started using them as a coping mechanism. Not only this, we also established that the opening and closing of doors and windows, or just the hand mimicking actions he was displaying literally all of the time was also providing him with some degree of sensory stimulation, he was sensory seeking! 

 I found that during the course of that year, we spent more time riding on buses than I likely had in my 20 odd years off living! To some degree this had its  advantages, not only did the bus drivers know us by name, often allowing us to indulge his love for free (I’m guessing they guessed this activity was costing me a small fortune, plus it wasn’t hard to work out, that Little man, wasn’t your “Typical child”) but I also found this to be a good reward system, no good behaviour, no riding the buses! Of course when this happened, a meltdown on a huge scale would follow,and although I admittedly caved on a few occasions, I largely remained consistent, which is obviously that best way to be

 Little man did some amazing talented things during the course of that year, he could basically tell you where any bus was heading in London, doing so with such acuity. Although he had always been pretty good at this, it was now on a whole new level! My son was able to tell us what bus was destining for where, despite never having been on some of these bus before!

 It was incredibly hard to take the doctor’s advice and over time, limit the time he spent on this interest. This itself took strength a whole bucket load of the stuff. I used to find him wandering around the house at 4 am beeping away, worse he would be unravelling the toilet tissue around the house as to create a route for his imaginary buses to follow. I could lead him back to bed, but I couldn’t always keep him there, I couldn’t switch his mind off his interest, he’ll just lay there in the dead of night, recalling hundreds of buses and destinations from memory.

 It was only after he started his new special school for children with autism and aspergers and his discovery of the Lego brick, that I finally saw a dramatic decrease in these behaviours! OK, despite Melatonin of a night, his still up till the early hours, and of course he still beeps and has a run through of bus numbers, but it’s nowhere near on the same level it once was.

 The Lego gave him a distraction and another form of sensory play, while his growing confidence in himself as a result of his new-found happiness at school, are the reasons behind this reduction. 

 Little man’s interest in transport will likely always be his special interest, and probably that bit more obsessive than most people’s interest. However, now it is manageable and I couldn’t be happier with this!

  I even got asked by the bus driver last week, if all was OK because he hadn’t seen us for a while… Result!