What a relief

by Haribos on Toast

I have been on this journey with my son who is now 8 ;since he started showing symptoms at around a year old.

As i read down this list, the tears started flowing freely...im not 'upset', but relieved. Relieved that im not just a paranoid parent over analyzing my childs behaviour, relieved that the things he does and the way he reacts incredibly strongly to, are not 'just because'. He has sensory issues. Major sensory issues.
One particular part in the description has taken a huge weight off my mind: the fact of the inconsistencies in the behaviours. Oh my goodness! i can't find the words to express the sense of relief that has given me.
I dont know if anyone else has similar battles with getting other professionals to 'believe' or see or even comprehend that their child displays these behaviours; and just because hes sitting quietly for the 20 minutes during the appointment time doesnt mean to say as a parent you havent been through hell on earth for the last 26 hours to get them to a stage where they can sit for 20 minutes and appear "normal" (i dislike using that word). ESPECIALLY when they have other conditions that can mask/ overshadow the sensory sensitivity.

My son failed Autism testing because of his impulsive ADHD side and the oppositional disorder (refused to participate, raged, attacked and groweled and screamed to the point where they basically said 'thats not typical autistic behaviour' he cant be) etc.
maybe other countries/areas have a better approach, but in my situation, in the UK, it has been a constant battle to get help or at least an acknowledgement that there are difficulties (and its not just me being a crap parent, as they make you feel!) my sons rages/outbursts get so bad, i have to phone the police on occasion for his own safety and mine (hes average height and weight at 8, and im not kidding, it took 6 grown men to take him down last month).

So, thank you for publishing this webpage...it has helped massively!
And thank you for reading my ramblings.
Huge respect to all parents out there dealing and coping and even struggling. Stay strong, and feel blessed that we have the honor of our extraordinary complex fascinating children. (Its those 'moments' of calm, a glimmer of empathy, a random smile or unexpected show of empathy that make it worthwile..for me at least)

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Jul 19, 2014
Thank You:) Mom of 7yr old son
by: Anonymous

Thank you. FOr the past 7 years I have witnessed behaviour that over time came to know as not a normal behaviour. It was questioned. He just started sleeping this past year. severe exzema major food, environmental, chemical allergies sensitiviites. Weird outbursts. Can't sit still always hot clothes, light, sounds, everything seemed to set him off. Diagnose with LCH immune disorder and just finished a year of low chemo.. Have been told my anxiety is creating him the school doesn't beleive me or him. Hes an angel super smart but can't handle going to school being in the class. Severe separation anxiety. Different child when home from school verses in school. Have no idea why. this gave me so many answers and I hope that I can find some help with him. So far I am getting well its normal behaviour why do you want him diagnosed. I want to help him. Hes suffering with something and I think this is it. So thank you so much.

Nov 30, 2013
by: William

I'm happy to read you've had some relief. SPD is in the same family as Autism. In-fact i've read some studies that say it's theoretically possible that autistic children are basically normal except for sensory modulation overloading. How true or realistic that theory is right now is to early to tell. But SPD is rather unknown to the medical system in any country, we barely grasp Autism let alone what causes it. So SPD is hog-wash to most medical professionals. I feel your frustration as to get a diagnosis due to symptoms not surfacing when in evaluation. It's like taking your car to the mechanic for a sound, but as soon as you get to the mechanic shop the sound has disappeared. I can't speak for the UK but here in the US parents have to shop around to find the right medical professional that truly sees SPD as a disorder.

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