I want to cry, Joshuas story!

by Erika Robbins
(Hazel Park, Michigan, United States)

I am directly copying the note I wrote to the neurologist yesterday for my sons appointment. He said Sensory processing disorder and I read this sight and just cant believe how many of the things that I didnt put on this list are things he does and drives me crazy!


Birth Oct 1 2006 39 weeks 5 days
Emergency C-section due to no movement, true knot in cord and double wrapped around neck
With me initially but was getting pale while feeding and they took him to NICU for observation. Oxygen was low so they kept him. Next day when I went to see him he sounded fake like he had no cry. They didn’t know what happened so they called in ENT who said it was left vocal cord paralysis. Transferred to Royal Oak for MRI to check for tumor pressing on cord. Told everything looked normal and hopefully it will clear up. It did.

Crazy baby, cried non-stop for a year basically! Never happy, never wanting to just eat, never being calmed no matter what I did.
October 07 got fever of 104 that would not come down with meds. Hospital did spinal tap for meningitis, checked for leukemia, all negative. Every 3 weeks from October 07 to April 08 he got a fever of 103-104 that wouldn’t come down for 5 days. Hospitalized a few times. 9 fevers in all. Hematologist did testing and basically it was a I don’t know verdict.

Fevers stopped and the same month my son had his first episode. He was walking towards me then looked petrified, starting walking side way, fell over, couldn’t hold himself up. I didn’t know what happened, seizure maybe, who knows. Called pedi and they said maybe it was his ears popping, just watch him closely. June it happened 2 more times, and July 2 more times. Saw Dr. Majkowski at Childrens through all of this. She sent for a 1 hour EKG and it was normal. Sent for a MRI. While talking with the Doctor before the MRI she was looking over medical history and said he had a MRI at birth and had a stroke. I said WHAT? No one told me this. She gave me the papers, sure enough, ischemic infarction of the brain. Maybe that is why his vocal cord was paralysed?

I had one more appointment with the neurologist after that. I brought to her some concerns I had been having with my son since he was 1 year old. I thought maybe it was all related to these episodes, birth trauma, who knows. She validated my thoughts and said “I can tell by looking at him that he is pervasive developmental delay”. At the time I had no clue until she explained to me autism spectrum. She sent me to the Autism Center at childrens, and I made an appointment for some months later. August 08 came, and I had a baby on the day of my appointment. I had a hard time believing he could be anywhere near autistic, so I didn’t take him back. These are some things that he does that concern me…

Joshua got glasses at 1 year old. I asked the doctor at that appointment if children with vision problems also have behavioral problems, She said no. As far back as 1 year old I knew something was off with him.

Sometimes I think he has no feeling. Has fallen and smashed every stair with his face and not cried. Has always touched hot stoves and not been phased. But then his sock is crooked and he freaks, tags in his shirts need to be cut, seat belt cant be tight. Sometimes he seems under responsive to touch, other times over.
No fear. To a frightening degree. Will run in front of a car with no thought. Literally doesn’t grasp things hurting him or him not doing something that may cause himself harm. Will touch and play with ANYTHING that is not put up (knives, razors ect) and doesn’t fear it.
Plans can not change. If I say we are doing X, and we change it to Z, it is a hour ordeal. He screams and freaks out. If he doesn’t want to do something, it IS the end of the world to him. More then just bratty kid stuff. I have 4 kids and they all respond differently. Joshua is so different, its almost like he really CANT control what he feels.

He is at his best, calmest, sweetest when alone. While he does play with others, he doesn’t play well with others. He hits and yells at kids. When my other kids are gone, he is so calm. When my other kids are at home he gets high strung, whiney, overwhelmed.

When a new person talks to him, he will shut down and stare and be still. I have witnessed this at parks many times. Its very odd. When they walk away he runs and crys to me. A lot of times he will not play at all. He will sit with me on the bench and watch. He wont take his shoes off to play at a play place.

He does not watch movies. He cant sit and watch anything. He runs everywhere, cant just walk and be still, ever. Even during dinner from the time he could walk he would get up and walk around and eat. If I make him sit and eat he is flipping in his chair, kicking around. He just WONT sit still. He will walk and fall and do a flip mid walk, its like he cant just stay still. He wont sit for a story, wont watch a movie, has no attention span whatsoever.

Everyone who knows him knows something is different. Everyone agrees to that. What exactly it is is hard to put your finger on. He tells huge stories and actually OVERLY dramatic. He tells the hugest, craziest stories.

I think he is deaf half the time. I have put it to the test many times. He is a take everything apart, put it together kind of boy. He is very very very intent on what he is doing and cant be taken away from it. I will call his name 50 times and I know he hears me and he just is off in his own world. And I know it isn’t ignoring me. I will say good things. I say Joshua, come here. He doesn’t even look at me. Joshua, do you want some candy. He doesn’t look at me. In a tone loud enough and close enough he can hear me. A few minutes later he is done with what he is doing, turns to me and says, Can I have candy now? So he heard me. And he knew what I said, but he just had to do what he was doing.

He can be filthy and not care. He drools on his face and will be all wet on his face and just sit there. But then if he spills a tiny bit of water on the edge of his shirt he is freaking out and cant be calmed. It doesn’t make sense.

Things are so day to day and inconsistent.

Comments for I want to cry, Joshuas story!

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Jun 30, 2012
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vaccines
by: Anonymous

I used to believe that vaccines where the major reasons of autism and other syndroms. Now I believe that our children are born with a weak immute system and without knowing that we go ahead an vaccined and that makes it worse but the problem was already there. Dont vaccinate when your child is sick, if he has a weak immute system vaccinating will attack him more. dont do cocktail mixes, mercury free vaccines. spread the vaccines dont missed vaccines. My son has sensory issues his a seeker.

Feb 24, 2011
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vaccinate!!!!!
by: Anonymous

I believe vaccinations have nothing to do with this. Worse is going to happen within our communities if people do not vaccinate. Has anyone thought back 25-35 years ago and noticed any thing different? It seems like over the past 10 years or so there are new causes or new assumptions to why this is why it is. Has anyone ever considered all the cellular signals, digital, satellite, and whatnot flowing out in the air. What's in the food? What's in the water? Bees are dying from everyone having cell phones. Certain issues could be more environmental that medicinal. It puts people at risk not having themselves or their children vaccinated. Would you want to take your child or your self around someone who has the measles or the flu? Both can be deadly, why risk it. Have faith, and pray. It works.

Feb 20, 2011
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I would not jump to Aspergers
by: Letha Marchetti OTR/L

Many children with SPD present just as you have described. Premie, NICU - typical for low sensory input early on. Your child need appropriate stimulus and his behavior shows he craves it. Get him to an OT.

Jan 14, 2011
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aspergers
by: Anonymous

aspergers . . .

Nov 15, 2010
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Thanks!
by: Anonymous

I dont vaccinate! I have no vaccinated any of my children at ALL! Joshua was in the NICU for a week and I had to leave at night and I always was afraid they would slip one in lol. Im sure they didnt since he was sick but it was scary! I never plan on vaccinating my children unless i go to the villages in Africa and the benefits outweigh the risks!

Nov 15, 2010
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ALSO................
by: Anonymous

Do your homework............
Do NOT vaccinate your child anymore
been researching for years....Dont do it to your child!
EDUCATE yourself, all the scientific prof is out there, look for it, dont take my word for it!
Its there..........

Nov 15, 2010
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Oh sweetie.................
by: Anonymous

Yes, that sounds like an asd for sure!!!!
my son has all of those with rocking incessantly on top of that and finger flapping in front of his eyes
GOOD NEWS, it will get better
You will always have an issue, but they do get less frequent with help
OT, and whatever therapies he will need!
Things get better, and then new things spring up
But it will get somewhat better!!!!!
All your answers are out there
Just make sure, you get a notebook and write down everything that you know is not typical to show all the people who will be involved with him
Share ALL info with EVERYONE who is involved with him, you need a WHOLE picture, not just parts.Everyone has to be part of his team hon!
Good luck, and i will say a prayer for you and your family...
God knows best.........Kim

Nov 11, 2010
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Thanks!
by: Erika

Thanks for the reply! The neurologist is having me take him to the Autism Center at Childrens for a evaluation still. I just have a hard time thinking he is because he looks at me in my eyes, he never had speech delay, but he is actually very very talkative and animated, overly animated actually. So its hard for me to think he would be.

Nov 11, 2010
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PDD
by: Anonymous

I kind of agree with the PDD for Joshua. There is more than spd going on with him, I have had to deal with this and accept it with one of my sons, he has PPD, ADD, and SPD. You are better off getting a real diagnosis and knowing what is going on so you can help him, then by denying the truth

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