Our Story

by Joey
(Charlotte, NC)

Dante and me

Dante and me

I absolutely think it is real and furthermore, I believe my son has it. He is three but cannot articulate like a normal three year old. He can sign, he can say his alphabet, count to 25, and tell you shapes but sometimes trying to say sentences confuses him. He gets so frustrated that I have literally seen him hit himself in the head as if to say, "Come on, Dante, get this right!"


Also, he is extremely particular about certain fabrics, certain textures of food, certain smells, and is very introverted. He seems to go off into his own world and I have seen him just shut down when he is in an enclosed space. He is terrified of loud noises, has odd habits of lining toys up, and is compulsive about certain items being out of place, like a DVD in the shelf not being pushed in all of the way or a dresser drawer halfway open. I am really really frustrated because he cannot go see a specialist for a diagnosis until December. My husband and I moved closer to a larger city (Charlotte, NC) so he could have more opportunity and better doctors but trying to explain this to old-fashioned family members and people who have "normal" children both exhausts me and hurts.

I'm tired of the phrase "normal". Sometimes I wonder why my child has to be the one suffering and I fear for him when he goes to school. His father and I are struggling in this economy and our move to find good jobs and there are just some days I cry because I don't understand. I feel just as frustrated as he does and I don't know anyone whose child could have or has SPD.

Children with this disorder suffer greatly and so do the ones who love them. I'm tired of hearing people tell me that it is all in my head and that I caused it because he had an ear infection that went undiagnosed for a couple of weeks once. I also get told I am selfish for getting so upset and frustrated because I should focus on him and not my feelings along with his. I feel alone and depressed that I have to see my son struggle. I just want what is best for him and to be happy and as well-adjusted as possible but until more people recognize and accept that this disorder is real, we will just have to keep doing the best we can and educating anyone who will listen.

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Nov 28, 2010
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I also have a three year old son with SPD
by: Anonymous

I can totally appreciate what you are going through with your son. I have struggled with my own three year old son since he's been born. He first was "colicky" and then just never a happy baby/toddler. He has many sensory issues but is very smart, knows all his colors, numbers and shapes. We had him evaluated for possible high functioning autism but the psychiatrist told me that she doesn't believe he has autism and that he is just a shy and anxious little boy who is feeding off my anxiety. It is terrible and very stressful to be blamed for your child's issues. That psychiatrist did admit that my son has sensory issues but did not connect the anxiety to SPD. I hope SPD is included in the new DSM so that more doctors and mental health professionals will stop blaming parents and begin recognizing this disorder so that children can get the help they need. Hang in there. You sound like a great advocate for your son!

Aug 31, 2009
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Thank you!
by: Joey

Thank you ladies for your kind comments!! I really appreciate the insight and encouragement! I will reply to each of you personally soon as well but thank you for the response and for being there!!!

Aug 30, 2009
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You Are Not Alone
by: Anonymous

You described my 3yr old grandson to the tee, and I to feel your pain and know your everyday struggles and fear for your son. I have asked myself many times how can a child be sooo intelligent and yet be sooo sensitive. We first noticed Jaxsons eating habits and he too began to gag and vomit at about 12mos and spiraled down hill from there.

After months of searching an praying he began OT an has improved but is still a picky eater and may always will be,he screams at the sight of vacuum cleaner. Some days he seems to be the "normal" 3yr old and then there are days its a struggle with everything from clothes shoes food and everyday tasks. Potty training is a nightmare.

I could go on an on about what he can and cannot do,but we have adjusted our world to his and we don't know why or how this happened and honestly we really don't care all we know is that we are blessed with the greatest gift and that being him (Jaxson) that God could ever given us ,you will get lots of useful ideas and support here at this site but if you ever need to just talk one on one please contact me @ tstallings1@hotmail again you are NOT alone

Aug 30, 2009
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Listen to your instincts...
by: kim

You just described my son,..... who is now 5.
I went through all the same crap with everyone, including Dr.s who poopooed me!!!

My cousin who is a speech therapist was at my house when my son was 2, and I was feeding him baby food,and she asked me why?, I told her , (textures, gagging, from when I first introduced him to solids at 6 months!) I just thought, "he'll eat when hes ready,...right?? I had NO IDEA!!And she told me about early intervention,.... Thank God!!
What a difference that has made!!

Also, NO MORE SHOTS!!!!!!!!!!!!!!!!!!!!!!!!!!
That is one of the biggest reasons our kids have SPD!!!!!!!!!!!! MY OPINION???...
YES!!!!!!!!! MANY moms opinions, yes!!!
The science to back what I believe is there, but there is no good science to back the vaccines, Hmmmmmm?????

If you study the history of vaccines and the TRUTH behind it all, you will understand!!!
I have ONE TRUTH.....A question, if you will..... I like to use,... here in PA, WHY DOESN'T THE AMISH COMMUNITY HAVE AUTISM????
They "don't vaccinate"....., no processed foods, and they don't live by electrical towers, Hmmmmmmmmmmmmmmmm!!

He has since been diagnosed with aspergers and he has Sensory processing disorder.
Well,.... i had NO IDEA how much sensory made in his life till i read sensational children, and the out of sync child.

Everything starting clicking like a kid with adhd on the computer, using a mouse!!!!
OMG, and you know what, my kid would NOT be getting what he needs this year in kindergarten, if i didn't find this out and relay it to the IEP team, poor kid would have FLOUNDERED and got in trouble all the time , but instead he will be getting the sensory in put he needs to be regulated enough to complete something!!!!

Just need to make mention also , my girlfriend who works in an adult group home (Ive mentioned before) told me tonight that she got big points at work (not why she is doing it)
But she said, "they didn't know about SPD, and that they were quiet impressed at well things were working for her with her clients, YEAAAAAAAAAAAAAA!!!!!!!!
So happy for her and the clients,yeaaaaaaaaa!!

Hang in there and you will be pleasantly surprised at what you will be able to accomplish with him once you've got it all under your belt!!!!
You go girl!!! Kim

Aug 30, 2009
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You're not alone
by: Anonymous

I understand what you are going through as I have gone through exactly what you are. I'm in a rush right now but if you ever want to talk email me ginajake@epix.net.

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