Answers? Not here!

TerryJ2

Well-Known Member
Good grief, what a waste of hot air.
So sorry.
I suspect, at the rate you're going, you may very well have to wait until puberty when things really change. I hope you get a much better dr before then. All you can do is keep trying. How very frustrating.
 

BusynMember

Well-Known Member
Malika, I don't know what to say. There is no help for children who have trouble functioning at home and in the community? I am sorry. J. seems like a lovely boy with a lot of potential and you are such a dedicated mother. I wish somebody would give YOU a break and stop blaming you...this is not your fault at all.
 

lovelyboy

Member
Malika.....my little one, aged 4 and a half.....is VERY busy.......his class teacher gave me one and a halve pages of things he CAN'T do in school....He can't engage in an activity, doesnt participate, cant listen, pulls his shirt over his head and arms and sits in a bundle during group time exct!!!!!
If you look at him superficialy you would say he is definately ADHD...he touches EVERYTHING....jumps into and onto everything......doesnt listen....exct.....BUT if you look very closely......he is a sensory seeking and avoiding child with auditory processing problems......
What we did so far: We took him to an Occupational Therapist (OT) who specializes in sensory integration dysfunction.....My son has huge sensory integration problems.....he also fluctuates between sensory seeking and avoiding......leading to all sorts of behaviour and modulation problems.....We also had him tested by a ST who picked up he has HUGE auditory processing problems.....
So.....we have no diagnosis....I think he is a bit young.......BUT we have 2 definite disfunctions that has been identified.....Thus we could start with propper intervention, because these would have been the interventions most propably with any diagnosis.......We also started brushing him 3 times a day as part of Occupational Therapist (OT) sensory diet....this already decreased his sensory seeking behaviour, causing less disruptive behaviour.....Working hard on improving his speech.....so his frustration tolerance is improving.......
I am an Occupational Therapist (OT) myself and for me there is a very fine line between ADHD, hyperactivity and SI problems.....
If you havent read up on sensory processing or integration dysfunction, sensory diet, sensory modulation exct.....I would strongly recommend this....Also reading the Out of Sync book and getting propper Occupational Therapist (OT) assessment.......
 

Malika

Well-Known Member
Yes, that all makes a lot of sense. I am sure J has sensory things going on. However, the ONLY Occupational Therapist (OT) in the local town had never heard of sensory integration disorder when I spoke to her and seemed baffled that I would think things like his hyper-fussiness with food could be relevant to anything. I did have an appointment with her but cancelled it, just too disheartened with all the avenues that seem to go nowhere much. If we were in a big city it would all be better... HOWEVER, in late May I have an apppointment in the said big city (hour and a half away) with a woman who is highly recommended and has a great reputation - had to wait about 9 months to see her - who works with some kind of bodily rearrangement based on a person's earliest history. I accompanied the elderly mother of a friend there once and she said that back ache that had been troubling her for years had disappeared. So let's see what comes out of this...
Thanks for the encouraging words, MWM! I don't think I am more dedicated than average but just trying to do what I can to get help. It's all a learning experience - even seeing the doctor who just gave me a dusty answer was clarifying, in a sense.
 

Ktllc

New Member
Malika, if you explore (or have already) sensory issues and sensory diet, it might seem a bit too much at first. As I was reading some books, taking V to Occupational Therapist (OT) at first, I was thinking to myself: how in the world am I suppose to integrate a sensory diet in our life?? It seems like a LOT of work and also kind of fake (ie: V walk like a crab to get your clothes, yeah right...).
And slowly I digested all the information I read, took people's adivice on this board (basically telling me not to give up and "believe") and I am now able to know where V comes from in his supposedly "bad" behavior. Little example: V would repeatedly step on my father's toes. And it was no accident. My father would get annoyed and was real close to yell at him to now stop it. I explained that it was indeed intentional but not malicious in any way. V is sensory seeking (most of the time, but not always), he loves my father and wants to feel him. A simple touch is not enough for him, he needs lots of pressure to feel his body and what's around him (ie: weighted blankets, bear hugs, lots of crashing, breaks toys, etc...). We explained to V that stepping on toes was painful to other people and my dad would squeeze V in his arms instead. Problem solved.
I've also learned that V does the sensory seeking on his own, he does not need me to help him on that much. But he needs me to help him calm down. He just cannot do it on his own. So at home, we have a lot of soothing techniques and gears available to him for this purpose.
Without my help to calm down, V can look like a hyper child. If not stop in his track, he will eventually become dangerous to himself and others.
His Auditory Processing Disorders (APD) can also make him look like ADHD: he fidgets, looks around, an't sit still, can't answer questions... But the root of the problem: his brain can't make sense of the words and questions, he becomes bored and therefor distracted. His Speech Language Pathologist (SLP), makes him work on an activity 5 minutes and then relax 2 minutes. Is it an attention problem or hyper activity problem? No. It is just so much work and concentration to make sense of what is being said that V becomes tired.
I could not direct you to the right place, but after searching some French websites on Autism Spectrum Disorders (ASD), I know that sensory issues are known in France. Maybe mostly in Autism Spectrum Disorders (ASD) circles? I don't know. But you might want to check Autism Spectrum Disorders (ASD) and sensory processing disorder (SPD) together first. You might then find some info on sensory processing disorder (SPD) knowledgeable professional.
Good luck!
 

lovelyboy

Member
I honestly cant tell you what to do....But I was horribly shocked to read that an Occupational Therapist (OT) doesnt know about sensory integration.....!!!!!!
Please try and get as many info as possible on it....the one book called The out of sync child....explains it all and the other book called The out of sync child can have fun is really great!
Please try and find help regarding sensory processing disorder (SPD) and also for auditory processing! This will make a huge difference in your life!
They also teach your child ways to cope with stress......and all that. We have for example a kind of hammock that is made from spandex and is a 3 layer...its suspended from the roof in our playroom.....the Occupational Therapist (OT) recommendation....wwhen my kids feels sensory seeking or overload they go and climb in it to calm themselves...it gives them a womb space.....food issues.....If a child avoid some food it can be because of sensory sensitivity or chewing stuff, like shirts or mouthing stuff...he his sensory seeking, trying to modulate himself.....rocking is also sensory seeking and self modulation, humming to himself all the time is to try and cut out background noice, not making eye contact can be because of sensory sensitivity....The lists go on and on.......
 

Malika

Well-Known Member
Thanks both. As I say, I know if I were in a big city things would be a lot better and I am sure there are OTs in France who know more about sensory things - but I simply could not get to them on a regular basis. Wednesdays (no school) would be the only day and that is already fully occupied with his seeing the psychomotricien and his various sporting activities, which he enjoys and which are surely good for him.
One more small avenue opens up... last year all the kids were visited by a doctor (they visit all 4 year olds in this way) who referred us for more help as J was so manically hyperactive when he saw her (anxiety, new situation). Anyway, they asked the teacher if any of the 5/6 year olds needed continuing attention, she said to me as far as she was concerned he is fine but did I want to take up the possibility? I said yes, so we are seeing this doctor... yet another one... next Monday. Who knows, it will lead somewhere concrete or at least mean that we are on the radar, in a sense.
Don't know what J's sensory issues are. He seems very sensitive to noise and taste. Not so much the feel of clothes, etc, to which he doesn't seem particularly sensitive. Does it relate to the hyperactivity? Just don't know.
 

BusynMember

Well-Known Member
Sensory issues usually go along with other disorders. They can be distracting. Sonic has them galore. It part of Autism Spectrum Disorders (ASD) with him. He is sensitive to noise, crowds, certain texture foods, certain types of material (and no tags on the backs of his shirts) and has an unusual sensitivity to smell...he can smell things like a bloodhound. Sonic still has sensitivity to stimuli, but he is in no way hyperactive. He was as a little one, but now it is a big chore just to get him to move! I don't know that the two things have anything to do with one another. Most sensory sensitive kids do pick at their clothes and skin a lot and often cover their ears when noise is too loud. Some can not tolerate being in a busy environment without melting down. Sonic was like this once...he still doesn't like it, unless he knows the kids, but he does not melt down anymore over it.
 

Malika

Well-Known Member
Yes, I forgot about that - J is also extraordinarily sensitive to smell. Also hates having his hair brushed, that kind of thing... I really am vague about what, if anything, this "means". I read something (somewhere!) that one of the symptoms of sensory integration disorder being hyperactivity... On the other hand, he goes to sleep like a dream, anywhere, anytime and there could be a brass band playing around him and he wouldn't wake up, doesn't have any issues with sensitivity to clothing, or in any way mind being touched or hugged. He loves cuddles. So I don't know.
 

InsaneCdn

Well-Known Member
Malika... all these things are a "spectrum" not a "switch". J may be super-sensitive to smells and a few other things, and fairly normal in his sensitivity to other things. What's important is to understand YOUR kid, what makes him tick, what ticks him off. And run with it.
 

Atourwitsend

New Member
Malika I can feel your pain! We have experienced EXACTLY what you are talking about! My difficult child was the exact same way! Would be dismantling everything around him until the moment we stepped into the Dr.'s office and then be as gentle as a lamb. Then when he would display his major aggression it would be written off to 'boys will be boys'. I can't give you any real advice right now because we were not able to get him help until we had an issue with cps. And we are STILL fighting for help. I know this doesn't help much but there are people out there who understand what you are going through and we are pulling for you!
 

lovelyboy

Member
Malika....I really hope and trust that you please read up a bit on sensory integration.....you can also find good questionares to complete, also included in the Out of sync Child book or on the net......according to the results ypu can see if your child is sensory seeking or avoiding.....and then they will allso give info on possible ways to help your child....I will just try and simplify it to explain:It's like a spectrum but more like a cylinder.....on the one end you get sensory sensitivity(or avoiding) and on the other sensory seeking behavior.Just to make it complicated...then you get the child, like my little one....who avoids stimuli, for example labels of clothing, hair being washed or cut.....and seeking stimuli, for example like heavy blankets on him to calm him or might jump and run into things.....No hyperactivity is not a symptom of sensory integration dysfunction.....the sensory seeking behavior can look like hyperactive behavior.....ADHD has the hyperactive behaviour and attention aspects combined.....A child that seems hyperactive could be seeking sensory stimulation.....they might be seeking vestibular stimuli (for example spinning themselves, rocking, hanging upside down) or they might need tactile and proprioception sensation to get their nerves system in the " just right" mode....to calm themselves or to be activated into action....for example, jumping on furniture, bumping into stuff, touching everything...exct.Some kids need little stimuli to be activated into action and some are "slow warmuppers", who seems more sedentary and need more stimuli to get them going.....Then some kids who gets overstimulated will go into "shut down" mode where they will look " spaced out" and just stare into space or go and hide under a blanket or even go into meltdown(this must NOT be confused with a temper tantrum)......Hope this will help a bit.....Ps.....to let you know how far these things can effect a child.....some kids will even not be willing to eat with knife and fork, because of the temperature or texture, would prefer to eat with their hands!Some will not register if their faces is dirty or register pain or will be able to tolerate plenty of pain....this is all SI stuff.....or close their eyes to bright light or not make eye contact....exct.Hope this will help a bit!
 

Malika

Well-Known Member
Yes, that makes sense to me, lovelyboy. I think J is DEFINITELY sensory seeking. He loves having his hair cut, for example! And for me it is not beyond the bounds of possibility that his hyperactivity is motivated by this. He will never just sit and eat a meal, for example. It is as though that is too boring for him. He has to be touching toys, spinning things, etc as he eats (drives me mad :)) That would also explain why he can attend and concentrate when he has to... However, getting anyone here to understand that is another matter. I might bring it up with the psychomotricien he sees once a week - a really nice man that J seems to get on well with. They play games together to get J to concentrate and he says to me that lately J is doing really well and making lots of progress; he says that in his eyes J is ADHD but with mild attention deficit... I wonder if he knows anything about the sensory stuff? A psychomotricien is kind of on the way to an Occupational Therapist (OT), so sensory things may mean something to him... I do feel as if parts of the puzzle are kind of getting clearer, even if I still don't have a specific label to pin on him other than the ADHD one which feels... approximative.
 
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