Thursday, October 13, 2011

Anxiety...or Aspergers?

I have always felt incredibly over-protective towards Captain Underpants. 

But never more so than now.

My son is hurting.  His courage is failing him.  His ability to deal with life with ease and confidence is deserting him.  He is distraught and lost and struggling with everyday situations.  He over-reacts impulsively and without warning.  His tummy hurts.  His enthusiasm is waning.  He is trying so hard to cope and to keep up with the ever-changing situation around him.  It is all proving to be too much.

I feel utterly, utterly helpless.

At this moment in time, if I could wrap this boy in cotton wool, pull him into my lap, lock the door and never let him go...I would.

I just want to stop him hurting and it kills me that my efforts, right now, are verging on ineffectual.  I am floundering almost as much as he is.  

He loves the fact his dad is now living close by.  He loves his father unconditionally and misses him enormously when he is not around.  But he doesn't want to go and stay at his dad's temporary home.  He is not sure he wants to go and stay at the new house, once they move in November.  He wants one home, absolute routine, no to-ing and fro-ing.  He is desperately trying to put on a brave face; he has always tried to conceal his deep un-ease with the situation.  I can tell he doesn't want to upset me or his father, by saying the wrong thing.  He loves us both and is highly attuned - even at 8 years old - to other people's feelings.  

Not only that, but he is also struggling at school.  Academically he is ahead of his years.  Socially, he can find it hard to fit in.  He is struggling to deal with a larger class size, of 30 children.  There is more noise and it is generally less orderly.  He seems to be finding the environment more stressful than his previous school.  Not only that, but this year he has a mish-mosh of teachers.  His main teacher is there from Monday to Wednesday lunchtime.  Then he has another teacher for one day on a Thursday - and yet another for one day on a Friday.  He likes them all but is finding it hard to develop a sense of confidence and trust with so many adults to get to know.  He is getting less individual attention than at his private Chicago school, which appears to be making him feel lost and inconsequential.

A lack of stability at home.  In conjuction with a lack of stability at school.

This child, who thrives on absolute structure and routine and adult interaction, is floundering in a sea of change and uncertainty.    Will he adapt, as everyone says he will?  Or will things go from bad to worse?

I just can't take the risk of waiting to find out, can I?

But it is also more than that.

There are aspects of his behaviour - the depth of his sensitivity - which lead me to believe it could be something more.

You know.  The sort of something where people start to bring the word 'spectrum' into the mix.

The sort of diagnosis that both his father and I are terrified to consider - and have possibly been in complete denial about for many years.

I think his father is still in absolute denial.  After a meeting with the school on Tuesday - where they expressed their concerns and we dismissed them with countless logical reasons - Ex turned to me outside and suggested that Captain Underpants is demonstrating this type of behaviour due to a lack of consistent disciplining on my part.

He cited the birthday weekends as an example - where I ignored mayhem and let Ex deal with the admonishing.

I was too busy attempting to stem a flood of tears to either defend myself or slap him.  I have NEVER proclaimed myself to be the perfect mother.  How convenient that these troubles with our adored son could potentially be attributed to the gaps in my parenting technique.

Anyway, that's immaterial.  Nothing else matters except opening our eyes to the fact that we need to get some help - some professional help - before our diminutive son crumbles even further before our very eyes.

I spent the day talking to friends and colleagues who have experience with sensitive / anxious / autistic children.  There are several indicators, that he has had since infancy but which have definitely become more pronounced in recent years, that fit within an autistic / Asperger's diagnosis.  Maybe I am jumping several guns here.  I can have a tendency to think 'worse case scenario' but I have reached a point where I want to leave no stone unturned.  

I made an appointment next week with the school specialist, as one of my first ports of call.  I have ordered book upon book from Amazon.  I felt a bit calmer, once I began to consider the possibilities and take action in getting some outside help.

I was on my way home tonight, internally mocking myself a little for being such a neurotic mother, when I received a phone call from Captain Underpants.

He was in tears.

Not sobbing, angry or stub-your-toe tears.  These were the saddest tears I have ever heard.  Quiet and heartfelt.  I sank onto a step outside my office and my own heart plummeted.  I fought to stop myself crying in sympathy alongside him.  He softly cried and cried, while saying that he didn't know why he was upset, why he was feeling the way that he did - he couldn't even articulate what it felt like - but he didn't want to feel this way any more.  He wanted to stop this feeling and he wanted to come home to my house.  He was crying out for help - and I had no idea what to say or do.  I listened to him and talked to him gently and reassuringly for nearly half an hour.  He calmed but didn't seem significantly happier.  I talked to his dad, hearing the concern and emotion in his voice mirroring my own.

I am so terrified of failing him.  I love him immeasurably and wish I could magic all his cares away.  But I think we need to rely on a little more than just love at this stage.  

My special, special, special boy.  

21 comments:

  1. He is a very special boy, always has been and always will be.
    (I am crying as I write this comment, as I know how difficult and painful this is for you at the moment).
    Remember that sometimes, it takes a village. I am here and will do all that I can to help find a way to support and ease him through this process.
    We love him too. xx

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  2. You and your boys have been through some huge changes recently. Separation, AG, moving to a different country, new school, new friends, etc.... Even for someone who isn't on the spectrum that a whole lot of changes.

    I work in a school with children of differing educational needs, and yes, autistic children don't like changes to routine but most children don't cope well with a change to their established routine.

    He seems very sensitive to changes, and btw I think having 3 teachers a week is bonkers, but he's still trying to make sense of his new life.

    Bless, he sounds like a lovely little boy, and YOU are a wonderful Mum and don't let your ex tell you otherwise. I've got a good mind to come down there and punch his lights out, how dare he blame you.

    If you are still concerned, ask for some professional opinions, but even then he is still the same gorgeous little boy. Nothing changes there.

    Take care xx

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  3. Knowing him over the past few years, I would never have said he was Aspergers, but he is very sensitive. (Believe me, I've been there with the Man-Child and the Queenager for different reasons.)
    My understanding was, with divorced parents, that splitting the "housing" is not a good idea. They need a stable situation and while that's tough for one parent, it's a lot easier on the child. As you know, I'm not an expert in this myself, but most of my friend here are, and that's what they have found in the long run That the kids eventually became exhausted and stressed with having two homes.
    Obviously, you need to consider every option, but he has had a lot of changes recently, and they are still going on. That's definitely something to consider.

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  4. PS. WIth regard to the "ignoring mayhem" - people who don't spend a lot of time around young kids can't ignore mayhem the way we can. You're very good at it, because you're a good mum. If you admonished the kids every time they made a loud noise you'd be exhausted, they'd be even more stressed, and it would be pointless anyway. Part of parenting is learning to tune things out. Boy does he have some learning to do! xx
    PPS. The Man-Child, now spending more time with the Little Guy, is rapidly learning the fine art of "tuning out"!!

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  5. My son is eleven and has JUST been diagnosed with Asperger's syndrome after one professional after another saying, since he was six, 'oh no, he isn't on the autistic spectrum, he's just himself, he's just an individual'. An individual who was bloody miserable at times, and struggling dreadfully with life, just as we struggled to parent him sometimes.

    It has taken ages but we are so relieved that someone who knows has finally seen what we had suspected for such a long time. I think he's relieved too.

    Good luck with your journey, wherever it takes you all. I know what it's like to attempt to guide a special and sensitive boy through a divorce; it has been a total nightmare at times but he is so fabulous as well. I have a blog post brewing about him at the moment, watch this space. :-)

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  6. Nicola - firstly, huge apologies for not returning your call. When you called I was doing school run etc and yesterday I was at a meeting and preparing for said meeting. I am around today to chat if you want to.

    I don't know your son - and I don't know enough about aspergers to comment, but I do know that even a non-sensitive child would find all the change that you guys have gone through recently pretty hard to come to terms with. As a child of divorced parents, I know how it feels to be forced into the role of diplomat when you really don't know how to be. So if he is more sensitive, he's probably just not capable of dealing with all the change. I know exactly how you feel though about just wanting to help but aren't sure how

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  7. Lulu - you are my rock right now. thank you. it means more than I can ever say xxx

    Notsupermum - You're right, there are a ton of changes and we have always used that as a 'reason' for why he is like he is. He is super sensitive and incredibly bright - but there are other characteristics which concern me . And you're right -it wouldn't change anything, irrespective. I will always love this boy to pieces - and I'm SO lucky to have him in my life. He is such an old soul and I do believe on a spiritual level that he is here to teach me more about life and myself.

    Expat Mum - I know, I wouldn't either. But having spoken to several 'experts' it is sounding plausible. I guess it doesn't help that I went to see a Q&A with Paddy Considine (actor and director of Tyrannosaur), who has Aspergers. He is a highly functioning person - with a family and emotionally attuned - you would never make that assumption by meeting him. Mind you, I am mainly hoping to rule it out rather than get a diagnosis, I have to be honest.

    As for Ex - yes, he can be a right plum. I think the guilt he feels forces him to push issues onto me because heaven help that he step up and take any responsibility for his contribution to this sorry state of affairs.

    Helen - how interesting. I am beginning to think that CU has traits that he is not going to grow out of - and that we just need to be much more adept at helping him. I am so twisted inside with worry and love and desperation - and of course the fact that he is with his dad and I am not there to be his soft place to fall, makes it all much harder.

    HOM - I have just bought the book you mentioned, along with many others (including some highly regarded workbooks to do with CU, that have rave reviews from parents). I know my own tension and sadness doesn't help matters - but that kind of feedback (thanks mum) doesn't help!!

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  8. Hi Nicola, have just caught up with all your news. I'd say follow your gut instinct. You know your son best and if you think there is something wrong, then you need to pursue that, even if it's just to put your mind at ease. And what a mixed up life he is having at the moment with school and ex moving back and everything else that goes on in life. I'm hsving similar issues with my son and my question always is - how seriously do you take their sadness? Is it just a phase or something i need to pursue? Just follow your instinct. Thinking of you, hugs Jo.

    PS. Have returned home from Malaysia. Now living with two kids at my parents house. Finally. Got. Home. :)

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  9. Hi,
    Reading your post nearly made me cry, it is so hard to admit that your child may have a syndrome but I believe the same about my son too. Everyone will tell me no but I truly believe there is something and I am trying to work out what it is, my son also is such a sensitive loving child but to survive in life I believe i have to really work out how his mind works. I wish you all the best, it is so hard being a Mum but you are doing a wonderful job!

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  10. I think as you say, it's worth investigating all possibilities if only to rule something out. And - don't blame yourself. From the way you write I can tell you are a wonderful mum, even if life has had its bumps in the road recently. I hope you get to shed some light on this soon.

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  11. It is unfortunate that it can take just a moment to break a child's confidence but a lifetime to fix it.

    I remember myself being furious with my daughters teacher. I asked her if she thought that my split from her mum had dented her confidence. The teacher replied,

    "Not at all, in fact I've had to tell her not to put her hand up in class as no-one can understand a word she says!"

    My daugters suffered with a speech impediment - it was most frustrating.

    I also know how awful it is to watch the confidence ebb away - my daughter also grappled with dyslexia and found things very tough.

    It seems to me that, at this stage, you are doing all you:

    A) lots of unconditional love and
    B) Trying to identify if there is an underlying issue.

    A great job by someone who is, clearly, a great mother!

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  12. Just read this post and was moved by it, so many similarities to my life and youngest son.

    I hate labels but have to admit once youngest son was "diagnosed" as aspergers, albeit mild but on that spectrum, so many things fell into place.

    He is almost 18 and was 12 when the penny dropped and we were told and then we understood him so much more. He is now confident, (loud), outgoing and totally at ease with who he is, describing himself as black and white with no grey and very literal. He finds it easier to explain this to people than we do!

    My son went from being a withdrawn, moody, self harmer to a loveable and loving boy almost overnight because they way we loved him changed to meet his needs.

    Good luck with your son, I hope you find the answers, never ever doubt your instincts, those of a mother can never be bettered.

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  13. My daughter used to spend much more time at her fathers after we split and the disruption did affect her. a heath visitor put it very succinctly "how would you like to live out of a suitcase". I put my foot down and moved to a Friday one week, Friday Saturday the next. She could see as much of her father as they both liked but she came 'home' to sleep. The tears started to subside, she became more confident. Children need to be pinned down but on elastic. They need to know that their roots are solid, reliable and understandable. The rest of the world they are learning is a messy scarey place they are trying to make sense of. They need clarity in their safe place so they can stretch out into the world they are trying to learn with confidence that they have their fall back place. Dad's is one of those new scarey places to make sense of (for a while) and can't be a 'home' immediately and for some 'ever'. Changes at home affect children massively even when they are used to change and have dealt with plenty of it, don't underestimate it. After 11 years we still have difficulties with mood swings and bad behaviour as she goes between houses, stomach aches of stress and migraines of worry and she loves her dad deeply and dearly.

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  14. Thank you everyone for these wonderful and supportive comments.

    I can't thank you enough.

    Lots of things are falling into place - I have been so lucky to have met some fantastic people over the past few days who have knowledge/experience in these areas and I feel a bit more confident moving forward.

    And your advice and the sharing of your stories is providing more help than you can possibly ever realise.

    Thank you

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  15. Oh hon. By all means have him tested, because the earlier such diagnoses are caught, the better the prognosis with treatment. Trust me on that.

    As for the rest...Divorce is HARD. Even when the parents cooperate and are amicable and don't tear each other apart or use the children against each other, it's hard. And the children do struggle with the new reality, sometimes for a while. My ex and I have had to adjust our custody arrangement to create fewer transitions and more stability for our children, particularly because during the school year switching houses mid-week was disastrous. It takes time for EVERYONE to figure out how things will work and feel increasingly comfortable. And for particularly sensitive children, as well as those on the spectrum, it's even harder. We see that with The Widget, and while we don't think he's autistic (and we've had professional opinions on that), we're keeping a close eye on him for warning signs of other issues. He's very sensitive and routine-oriented as well, though perhaps not to the extent of your son.

    Follow your gut on this, but also give yourself a break. And if The Ex tries to blame it on you, just raise an eyebrow at him (learn how if you don't already know), and perhaps chuckle a little. He cannot have any more power over you than you permit him to have.

    Trust me. I've been there. He'll have no choice but to back off once you've established that you have a backbone and he doesn't have a grip on it.

    Hugs, from across the waves.

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  16. It seems you have a lot of support in the comments here and that is great. I just wanted to sya you touched me and I'm thinkingof you right now.

    My 8 year old is going through the full communications disorder assessment right now.

    Mich x

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  17. hi Nicola, I just came across your blog when googling aspergers or anxiety as we are currently going through some diagnostic assessments for my four year old son. He sounds so similar to your son, even down to hating having his hair and nails cut. I was wondering if you ever went through the diagnostic process with him and if you'd mind sharing the outcome. Thanks so much for sharing your experience. So beautifully written too.

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  18. Hi Yolanda

    We ultimately went through the special educational needs coordinating officer at the school (SENCO) who spent several months observing and testing my son. In the end they reached a prognosis that he probably did have a form of sensory processing disorder / aspergers but he was so highly functioning that it might not benefit getting him statemented.

    We agreed - with the full cooperation of the teachers - to maintain a close observation on him for a further 3 months and for the school to provide an outlet for some of the more emotional based behaviour - simple physical acts that would help him to 'regulate' his body physically, which would then help to regulate him emotionally. For example, squeezing a foam ball quickly / doing wall push ups / chewing gum. Any repetitive physical activity which would calm the agitation and bring his emotions into check.

    As that went well and my son subsequently got calmer (and also through the process began to understand more about his own quirks and methods of dealing with stressful situations) he began to stabilize. Nowadays he does not receive any physical/educational support and is doing well - tho we are still considering Occupational Therapy for him, to help reduce the stress he experiences in certain physical situations.

    Good luck with your journey. I hope you get the help you and your son needs. I feel so much better equipped now to understand my son and put preventative measures in place to help him cope with situations that many other children his age (and his younger brother) seem to sail through.

    I wish you all the best.

    Nicola

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  19. Thanks so much for your reply. I think my son leans more towards sensory sensitivity and anxiety rather than aspergers but it is a very fine line indeed! He starts school next year so it's a bit nerve racking for him and me! It's been a tough decision this year whether to hold him back for another year of kinder or send him to school. He's academically gifted but has taken so long to open up and come out of his shell at kinder this year. He's making progress though so that's promising! Thanks again :)

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