Tag Archives: aspergers

A Flight or Fight Kind of Day

16 Nov

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DS1 (darling son no 1) has had a challenging week, and therefore so have I as I seem to measure my emotional temperature by those of my offspring.

If you met R on a good day you would probably be amazed at his diagnosis of Aspergers -“but he’s so friendly” “what a lovely young man” “you must be so proud” are phrases I hear quite often, and yes, these are all true. He is friendly and polite, and kind, and intelligent and thoughtful and a wonderful sibling to his brother and sisters.

However, he is and always will be autistic. And that is something that can sneak up and overwhelm him in a flash, with no warning, or with so little as to make no difference. What people who meet him (even those that think they know him well) don’t realise is that the reason he is so able to cope most of the time is the hard work that has gone on behind the scenes.

R goes to a very small private school 150 miles away from the family home. He leaves every Sunday afternoon at 4 pm and doesn’t return until Hubby picks him up from the central railway station at 5 pm the following Friday. I resent every second he is away, his siblings miss him, and he misses us. And yet it is the best and frankly only option for his education, as there is nothing suitable in the area. Not one school that has the right sensory environment for his often debilitating sensory issues. It isn’t a perfect fit but then what school is? His other great love and what R himself calls his “saving” is his love for all things Scouting. His Scout leaders are two of the most wonderful people I know, with a proven track record of working with, not against additional needs and a “can do” attitude that puts most SENCOs to shame. Their encouragement and support, along with ours, has enabled R to be chosen to represent his country at the next International World Scout Jamboree in Japan of all places – a challenge for most western youngsters, let alone one who struggles with everything from food to weather. And I have no doubt that R will cope, succeed and enjoy.

So, he’s doing all this and his life is going pretty well for a teenager with autism – he has a social life (of sorts) and he is doing well at school. So what does the council do when they are presented with such a glowing example of their spending? Yup, you guessed it, they try to stop him just as he is reaching his true academic and social potential, that’s what!

Our lovely social worker informed me that there was a massive cut in council spending coming and that even with no new schooling provision having been built or identified, we were being put in the unenviable position of having to justify R’s continued placement at his out of area school. Even though there is nowhere else we still have to do this. What a criminal waste of time and resources in a council already stretched to capacity and beyond.

So, social work and I have found time in our busy schedules to visit all the main secondary schools in the area and meet the staff, talk to them about their additional needs provision and tour the schools. There are five of them, and the nearest had already been excluded as that is where R lasted 4 days before having a breakdown back in 2009 in the first year. We skipped that one!

One was so unsuitable that we didn’t even bother with much of a tour – as soon as the deputy head informed us that they didn’t even have any space for a dedicated support base, let alone any small rooms where a pupil could have some quiet down time, we both agreed to strike it off the list. Two more were discounted for lack of resources or lack of ability to tailor the small classes that R would require for learning without succumbing to overwhelming sensory distress.

Which left one school, about twenty miles away. An OK commute if necessary. The deputy head teacher was welcoming and cheerful, and very positive. She also listened intently as we described the kind of set up that R would require. Unlike all the other schools, her attitude was one of “how can we achieve this for your son?” and I got the feeling that she would fight for the resources to enable his education. A tour of the school was punctuated with her pointing out possible pitfalls that could be an issue, for instance the patterning of the flooring in one area, the stairs being an open design (seriously is there anyone who thinks open stairs are cool?) and the incessant loud electrical humming from the server room.

I liked this woman, she knew her stuff. The social worker and I both agreed that it was still very unlikely R would cope here, both from the sensory and the social points of view, but nevertheless we both felt that he needed to see it if possible, just on the off chance that it might be a good fit, or at least do-able with support and maybe day release to college.

By good luck R’s school had an in-service day that Highland schools didn’t and so this Friday I took him to see the school. He looked absolutely awful; no sleep since the precious Sunday due to extreme anxiety will render even the most handsome sixteen year old to a zombie state, and he sat in the car park telling him that he hated both me and the social worker for arranging this. He was tense, and snappy and seriously uptight, and I felt like the worst parent ever.

Once inside and reeling from the double bell to signify the end of the lunch period we hastened to the deputy head’s room where she was again kind and welcoming, and didn’t take one iota of offence at the fact R had been struck dumb and didn’t rely or even look at her. We took the same tour of the school she had done previously, and R tagged behind, his entire 6’3″ frame poised in fight or flight mode. He wouldn’t go into any of the classrooms but peeked from the door, and he still didn’t speak. We managed about half the tour when he said in strangled tones ‘I’m done.’ He was on the balls of his feet and staring at the door. I handed him the car keys and he fled at top speed. Luckily I knew I could trust him to go straight to the car and wait for me.

I wrapped things up very quickly and the head said she was very impressed at how well R had coped – she could see how desperately unhappy he was from the second they met. I thanked her again for her time, and we left. R managed to spit out the following words and since then will not be drawn on the subject:
‘the lights, the crowds, too many people, low ceilings, claustrophobic, the heat, noises, kill myself’

I think that speaks for itself as to just how bad that was for him.

I have spoken to the social worker and she has had a meeting with the education psychologist. Thankfully, everyone is of the same opinion, namely that R should remain at his current school as a) it suits him so well and b) there is no viable alternative. A formal report recommending this will go to management. If anyone is foolish enough to throw out the recommendation they will speedily find a summons to a tribunal on their desk, but let us hope that common sense prevails.

But it still begs the question as to how the system can be so flawed that the only way to beat it is to place our most vulnerable in the firing line and watch them fall apart in order to prove the services they access are not only preferable but essential? How sick is that? It would be like taking a wheelchair away from someone with no control over their legs and asking them to climb a flight of stairs in order to prove they needed the chair.

My son doesn’t want to be different – he just is. And he needs that support to allow him to accept and embrace his difference, and to rock the world on his terms. And I will be there, helping him to help himself. For as long as it takes.

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Silent Sunday

6 Oct

Silent Sunday

A Sensory Blip

11 Apr

It started on Monday. M woke up after what appeared to have been a normal night’s sleep for her.

Then it started. She had a problem sitting down for breakfast as “the chair is wrong”. Her pyjamas were “itchy”. The bowl “looks wrong, why have you killed my Weetabix?” And on we went. I finally got her dressed in something that passed the softness test, although she refused to wear a skirt over her tights – what the heck we weren’t going anywhere and the tights were thick so they looked like leggings.

She would not/could not settle to anything. I had banned the TV as B (ds2) had been so badly behaved I decided to get all tough, so M couldn’t chill out with a dvd but honestly I don’t think she would even have settled to that. The things I suggested:-

trampoline, Sylvanian Families, play doh, plasticine, drawing, Happy Land toys, teddies, Barbie-type dolls, Lego, the garden, reading. And more. Every suggestion was either met with a shrug or screaming. She kept crying and wanting a cuddle but the moment she was in my arms she’d be squirming and running off. She fell over and into things so many times I lost count. Then of course it would be someone else’s fault. The rest of the children spent the day trying to keep out of her way, understandably, but then we had more tantrums over no-one wanting to play with her. And so it went on.

On Tuesday we went into the city. I had promised the twins I would take them to the cinema.  I said I would give the little ones a McDonald’s for lunch then we had tentative plans to meet up with a mum and her son that we know from the drama group. Of course it was extremely busy in McDonald’s but M coped with sitting at a table with strangers (by not making any eye contact or talking) and I was very proud of her. I had hoped to be able to pop into Primark on the way back to the car but I could see she was at her limit so we walked back through town to the car park. Yes we walked. I had persuaded her to leave her SN buggy in the car as I knew we would struggle to find seating downstairs and frankly there is no way I could carry it up the stairs. She held very tightly to my hand and just about managed not to freak out.

The meet up went well, the 3 children spent almost an hour in a big play park (we did take the buggy on the walk there as M took one look at the narrow path by the river and voted with her feet), and the happy discovery of 2 small trampolines embedded in the playground’s surface kept her calm. 

We said our goodbyes and collected the twins from the cinema. On the way home M started up again, repeatedly smashing her head against the back of the car seat for no apparent reason. Luckily there wasn’t too much screaming. I wondered if she had had too much to cope with during the day but it didn’t explain Monday. Unfortunately, the Bach Rescue drops we had been using to help her get to sleep decided not to work and it was 11.20 pm before she finally fell asleep.

Yesterday the heightened sensory problems continued. After such an appalling night it wasn’t much of a surprise. We now have a new trick though – toe walking. R, my ds1 and aspie boy, was a toe walker, and even now aged 15 I sometimes still catch him doing it, but M has never really done this after a short spell as a baby. I decided not to say anything and hope it would pass. She spent about 80% of the day on her toes. I hope this doesn’t become a habit.

Today, even after another very late night I appear to have my princess back. All her systems seem to have been “re-set” to whatever normal might be for M, and although she is tired she has been mostly playing nicely. You can almost hear the collective sighs of relief from her siblings. And me. I feel so powerless when this happens as although M is highly verbal (never shuts up!) she can never seem to tell me what is bothering her. I hope in time this will change.

Let’s hope it’s a long time till the next “blip”

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Silent Sunday

31 Mar

Silent (Easter) Sunday

Don’t judge by NT standards

29 Mar

A blog to myself really.

On Wednesday I collected R, my ds1 from his boarding school for the Easter holidays. I travelled with my eldest dd, and the 2 youngest. After a lovely Easter service at the school we then headed down the road to Strathclyde University for dd1 to attend an open day. R was extremely uptight about this as I could not seem to find anyone at the university who was able to tell me of somewhere quiet that R would be able to wait while we schlepped about in dd1’s wake. We do live “in the sticks” so to him, Glasgow is the epitome of the big bad city, with all it’s attendant noise and smells, to say nothing of the sheer numbers of people.

I had noticed a car park next to the hall we were starting at, and luckily we were able to park there. Little M went straight into her special needs buggy as a) she was highly anxious and b) I couldn’t risk her bolting. Poor R, aged 15, has no such safe place. He did accompany us into the hall, which luckily again wasn’t too crowded, but after 2 minutes he was starting to really twitch and I knew I had to do something. In desperation I asked him if he’d like to sit in the car. He jumped at the chance, and after making him promise he would lock himself in, I handed him the keys and he ran out the door.

I kept texting him to make sure he was happy every time we moved somewhere else, and he assured me he was perfectly fine. He had snacks, a drink, and he was plenty warm enough.

In the end we got back to the car 1 hour and 45 minutes after initially parking. R was totally immersed in a game on his Nintendo DS and was astounded we had been gone so long. He was safe, warm, quiet, in familiar surroundings and completely relaxed. But all I had felt was guilt I had “abandoned” him.

We chatted a bit on the way back up the road and he was truly surprised that I had been feeling like that. His view was that if I had dragged him round with the rest of us then I should have a right to feel guilty as he would have been subject to numerous sensory problems and high anxiety. I had been “the best mum” for leaving him in the peace of the car. I was projecting my 15 year old self onto the situation, where I would have been extremely upset to have been left behind, thereby missing out on all the new and exciting discoveries. Of course, all the “new and exciting” to R is a form of torture, too many changes and would, without massive amounts of preparation, have been his worst nightmare.

So although I consider myself quite the expert on my children, and no novice at the parenting of ASD children, I learned a valuable lesson. One I won’t forget in a hurry.

It’s the little things

4 Mar

I have had such a good weekend.

Firstly M had no anxieties about her dancing class, although unfortunately she didn’t actually participate in all of it. But still, no anxieties. Then after a pleasant afternoon I had an evening out with friends at a murder mystery party. Nothing too wild, and I stayed sober due to my pitiful tolerance for alcohol.

On Sunday I had the luxury of a very lazy start due to hubby getting the breakfast for the wee ones, and the novelty of no Sunday School for them. I had a fleeting thought that I fancied a swim, so I quickly checked the leisure centre website, asked hubby if he minded and then asked son no 1 (R) if he would like to go too. As he has missed the last 2 weeks swimming session at his school he was keen. We drove to the pool 17 miles away as he really can’t cope with the nearer one (too many bad memories as the local pool is part of the same complex as his secondary school where it all went horribly wrong for him) and proceeded to have the pool almost to ourselves for an hour.

R is lucky that even with all his sensory issues swimming pools have never bothered him, and we had such a relaxing and fun time. We popped into a supermarket on the way home to grab a drink and a bun (seriously why does swimming more than any other exercise make one so hungry?) and then headed home for a stupendous roast dinner.

R then had to quickly pack his bag for the return to school; he is picked up by taxi at 4 pm. It wasn’t exactly rushed but he didn’t have a lot of spare time.

So, I expect you’re wondering what “little things” I alluded to in the title of this post. Two things in fact; the first was that R came to find me after lunch and thanked me for taking him swimming. And the second? Infinitely more precious. He allowed me to give him a hug. And he hugged me back. A full body squeeze.

R has autism. His diagnosis back in 2009 was Aspergers. He is also 15 years old and lots of teenagers aren’t much into hugs, so this was such a wonderful moment for me. I might not get another hug like that for 5 years, I just don’t know, but the memory of this one will last me for a long time. As I said, it’s the little things that get me.

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