What happened to my son?

by Michelle

I had never heard of SPD until this evening when I was searching online for the 1,000th time trying to find something which might give me some answers.

My son is 10 years old. Everything was fine for the first 5 years. He was happy, confident and loving. Then we moved to another and he changed overnight. I soon recognized that he HATED change - of any kind. He developed an aversion to any loud noises - planes overhead, loud music, loud voices, car engines, crying and saying the noise hurt his ears. I took him to get his hearing checked - several times, only to be told that it was fine.

Over the last 5 years he has become an incredibly fussy eater. He will not try anything new. He eats fruit, chips (only oven ones), Weetabix, chicken nuggets (only from McDonalds), baked beans, waffles (only frozen) crisps (has to be one particular brand), and chocolate (but has to be Cadbury). If i try to get him to eat a new food - even chocolate or a dessert- he will cry and throw a tantrum. He puts the food on the end of his tongue and gags and is sick.

Every day is a battle to get him into clothes - everything is itchy and uncomfortable and there are only a few things he will wear without a huge stressful argument - they have to be soft (e.g. jogging bottoms). He will not wear a jumper, ever, and spends the winter in t-shirts.

He has no problem academically, if anything, he surpasses his peers in most subjects, especially math where he is in an ability class two years above his age group. He is very active but refuses point blank to join any clubs whatsoever like swimming, football or Judo which are all things he likes. He prefers it if it is just us hanging around the house. Everytime I say we are going out, no matter if it's to go shopping or go to the park he doesn't want to do it.

He detests brushing his teeth and having his hair cut, although he really enjoys it when I give him a back massage. Howeve,r he hates anyone kissing him and generally touching him and will only hug for a brief second, occasionally. He is aggressive verbally and sometimes physically, especially toward his older sister who I have absolutely no problems with. He is angry, rude, and disrespectful and I think very unhappy for a 10 year old, and I cannot seem to do anything to change it.

He is constantly saying he is bored and wanders around the house aimlessly a lot of the time. He often wakes at night screaming and crying saying he can hear loud noises in his ears which terrifies him. He doesn't like it if anyone comes over for the evening/day like my friends, our family, or his sister's friends (but ok with his own friends of which he has quite a few). Any change to the daily routine sees him start being naughty, making stupid noises, running around the house shouting.

I have absolutely no idea where to start or what to do, and being in the UK I don't know what, if any, help is available. Your first instinct is to blame yourself and you look at what you may have done or said to get to this point with your own child. I just feel like such a failure as a mother. The children's father and I separated 4 years ago and I know it affected him deeply. However, there were problems evident before the separation. It was an amicable separation and we are still on friendly terms. The kids have never been witness to any mud slinging between us, but I know how hard it was for him at the time and he wouldn't talk about i, and is still reluctant to do so, though he has a good relationship with his father. I am at my wits end as I know he so unhappy.

The SPD Help Line Answers...

Hi Michelle!

Surely sounds to me like you may have an SPD kiddo. I think your 1,000th visit to the internet may just pay off for getting him the help he needs. Thank goodness you kept pursuing an answer. I am sorry it was so difficult to find one! Specifically, it appears to me that he may be dealing with sensory modulation issues- over responsivity to sensory stimulit, or what is also called sensory defensiveness. I would definitely advise you get him an evaluation for SPD to be sure. So... what I suggest you do is follow my Step By Step Guide to find the help you need, for him AND for you.

That said, know that the move and separation definitely could have been the "trigger" that sent his system out of control and into overload. But, know that eventually there probably would have been some kind of trigger that may have brought this out, so don't blame yourself... PLEASE! Starting or changing schools at age 5 (which is the age you said things changed for him) could have also set off his nervous system, since he may have already had underlying sensory issues- as you seemed to indicate). Any physical, maturational, environmental, or emotional stressors can defintely make SPD "come out" or become worse; to the point, as in your son's case, where every day life becomes a battle just to get through!

Some of the reasons this move (and school?) may have affected him so severely is because of the changes not only in routine, but in predictability as well. You see, our SPD kids NEED structured and routine in which they can predict and not have to consantly be on alert and hyperarousal for any differences in sensory stimuli. They get used to things... sights, smells, sounds, various sensations, etc. and become adjusted and quite comfortable. ANYTHING that changes from that predictability can set them off, big time! Over time, and with a good, intense therapy program to address his SPD, things will indeed get better! He needs a predictable sensory environment again and he needs a nervous system that can better adjust and handle all types of sensory stimuli. Sensory integrative Occupational Therapy will be the key!

A few books I HIGHLY recommend you get your hands on that will help you better understand what may be going on with him (while you wait for the evaluation) are...

The Out Of Sync Child, revised edition

The Mislabeled Child

Raising A Sensory Smart Child

Too Loud, Too Bright, Too Fast, Too Tight

Just Take A Bite

Now, unfortunately, the usual database I use to find SIPT certified OT's, only lists 2 (yikes!) SIPT certified OT's in England. Oh my! That doesn't mean there aren't more, it is just that I don't have the resources for your country. Therefore, I would contact those two if either are near you (you can find them by clicking here, or contact Kathryn Smith at The Sensory Project (www.sensoryproject.com) (she is our SPD Parent SHARE representative for the UK). Hopefully she may know someone, or be better able to direct you. Another idea is to contact any of your local children's hospitals, therapy clinics, or the special education department to find out if they can direct you to someone.

Or, you may find someone if you contact any Occupational Therapy colleges in your area. Here is a list of Occupational Therapy Schools (and direct contacts) in the UK. I don't know if this will help; if any of them are near you...


Lastly, you can try...

British Association of Occupational Therapists,
106-114 Borough High Street,
London SE1 1LB.

Correspondence to:
Beryl Steeden... Phone: + 44 207 450 2353
Fax: + 44 207 450 2350
E-Mail: cotec@cot.co.uk
Web Site: www.baot.co.uk or www.cot.org.uk

I do hope this information is helpful. Wish I could help more. Let us know if you have success and/or if you need further help.

Anyone in England? Does anyone reading this have any OT contacts there?? Please let this mom know if you do! Thanks in advance.

Take good care.
Michele Mitchell

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