Ethan's Story

by Cherie
(Western Australia)

My 5 yr old son has recently got a diagnosis of SPD and his behaviour is making a BIT more sense although I feel completely overwhelmed and emotional at times I can only imagine what he feels!

It started as soon as he was born. He would scream if he wasn't held constantly and held tight! As he was my first I didn't question it and spent the first 6 months sitting up with him held tightly against my chest. We then went from that to him sleeping in my bed in my arms ( He's still doing it now at 5!)

He was always hitting out at as a baby then as a toddler and still as a pre schooler although now it has become apparent he is unaware that he is even touching anyone else.

At about 2 1/2 he started only wearing one pair of spiderman pj's I had to peel them off when he was asleep just to wash them and sneak them back on before he was awake or world war 3 would break out! Then he would scream if he wasn't wearing gloves and a pair of goggles. He eventually " got over" this but now in 40 degree heat he will only wear jeans and a zip up jacket and in winter he will only wear shorts! I'm slowly working through this!

He started eating non food items such as sand, rocks, glue, play doh, textures etc. He now chews on gum all day and this has now stopped!

He has "wobbly" legs where some days he can't walk 5 steps without falling over and becomes hyper active and it seems as if he can't hear anyone or anything around him. He is always walking into other people and objects and can at times be uncontrollable. This is especially hard when he is trying to make friends and is told he is "annoying" or "stupid" and then asks me why he has "wobbly" legs. What do I say I don't know why and it breaks my heart.

He is extremely smart and is completely aware that he is different from his peers at school. We have recently started OT and he now wears a weighted vest and does his heavy movement "exercises" throughout the day. He uses a weighted pen sleeve for writing and it has improved his writing although he is still way behind his class mates and some days refuses to do any writing as he is embarrassed. If this sounds familiar please write to me I need all the help I can get!

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May 02, 2010
United we stand..
by: Anonymous

Your story sounds very familiar to mine...

We are only just in the early days of a diagnosis for our 6 year old daughter, and being our only child, just thought everything that happened along the way was normal - a phase. But the constant swaddling as a baby with 3 muslins because she wouldn't sleep otherwise, the constant movement required, eating playdough so much that they stopped using it at childcare, her aggression now towards me when she has a meltdown... it's hard and breaks my heart however knowing that we are not alone.... I think that is the biggest difference..

As the saying goes... United we stand... Finding some comfort that whilst we might be going through it alone in our homes.... we can seek comfort of others in this environment... It's difficult, but we will get through it.

Dec 09, 2008
Sounds familar
by: Michele

Ethan sounds like a very smart little guy. My son Jacob slept with us for about 7 years (off and on).

He is 10 now and sleeps all on his own. He shares a room with his older brother, but he still feels very independent.

We have always home educated our boys, so I have learned to watch for the best teaching days. He is incredibly smart--as are most SPD kids.

Our biggest struggle now is how he feels about himself. Even though he reads at high school level, he feels he's not as smart as other kids who can do the things he can't.

Just today he asked me if he had a disease. I told him that all the things that 'hurt' and bother him--hair cuts, nail clipping, all other people, etc etc--are all like little red bricks and if he chooses to he can build a wall around himself with those bricks OR he can build stepping stones to go forward and do all the things he wants to do in his life. He asked if we could build stepping stones around our house. I think that will be fun.

I know this is long, but I just wanted you to know that others have been where you are and not just "made it through" but have learned to enjoy the ride. When I think about Jacob, I don't think of a 'special needs' child, I think of a special child I need to have in my life. I am so thankful for him.

Try to see the uniqueness and joy that Ethan brings to your life. It makes the hard times easier!

Dec 09, 2008
Me Too!
by: Anonymous

I have a little boy, Evan (almost 5), that still sleeps with us. He was the same as Ethan as an infant and I also spent the first 6 months with him sleeping on my chest with my arms wrapped around him. Evan has also just recently been diagnosed with SPD.

Evan also wants to wear short sleeves and shorts in winter, and jeans and long sleeves in summer. He usually will not wear a coat, even though he picked it out and claims that he loves his "puffy red jacket".

Evan has been having issues with aggression and hitting his teachers at preschool. We are just starting to try to get a handle on this, but it is very stressful for all involved.

I wish I would have known the signs earlier. Evan was our first so I just thought that is the way kids are. Now I have a younger son as well, and he doesn't seem to have these issues. His temper tantrums only last under 3 minutes. Evan would have temper tantrums for 45 minutes. I just did not know at the time that this was unusual. He was my stubborn, corky Evan.

Anyway, keep your chin up. You are not alone out there. There seem to be many of us and though every story is a little different, there are many similarities.

Aug 25, 2008
re: Ethan's story
by: Lauri

This sounds very familiar,or at least parts of it do. My daughter is now turning 11 in a month. She was born with the cord wrapped around her neck after a very long labor. She always needed to be held tightly and we couldn't sit with her, only walk (sometimes she would let us stand and sway). She screamed bloody murder every time she had to ride in the car. She refused to take a bottle and would hold out until I got home from work from the time she was 7 weeks old after I returned to work. She slept in our bed with my arm cradling her and would nurse all night long (probably to make up for what she missed during the day). Aggressive behavior was constant from the time she was 3, but has significantly diminished now.

We still have to deal with the aggression, but not as much or as severe. She has to be in constant motion and can't tolerate noise. She was even sent to the principle's office in 3rd grade because of an incident which she couldn't help that was the result of noise in her classroom. A sensory diet and the Wilbarger DPPT have helped tremendously, as well as counseling and OT. I have found that minimal changes in routine and following the sensory diet/DPPT have been the best thing for my daughter, as well as advocating for her with each of her teachers (who, by the way, don't always buy into the whole SPD thing). You may have to beat your head against the wall with a few of them. It is always difficult, but does get better with time. Hang in there!

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