So many people still don't consider this to be a diagnosis!

by Rebecca

When I had my twin boys at 34 weeks and 6 days they were perfect. The only problems they had were that their sucking reflexes hadn't developed. One took a pacifier and the other one didn't. One didn't want to be held and the other one did. While one wanted to lay there and look around the other cried to be held, he would only eat for me and it seemed as if laying him down was just not an option most of the time. I couldn't sleep due to the fear of something happening to them. I was just 21 years old and I was terrified that one of them might stop breathing and I wouldn't know. So instead of sleeping, I would stay up all hours of the night watching them sleep. I had postpartum depression and at 4 months old my boys started going to daycare.

Right off the bat we knew something was going on. One of my twin boys (my crier) would cry over a mother coming into the room to pick her baby up. Or if one girl was on lunch and another one came in to help and she changed his diaper, he would scream. In fact one said, "I will never change his diaper again! You would have thought I beat him!" He became attached to two workers and those were the only two that could touch him, feed him, change him or talk to him. As he got a bit older and went into another room he got to where he wouldn't play with other children. If they had too many they would send him into the nursery and he would play with the babies. He would hold their bottles, swing them in the swings or help them to bounce in the bouncy chairs. But as soon as he went into the room with his brother and kids his own age, he would go off to himself.

His bottles always had to be room temperature. He never would sit or crawl in grass like his brother did. He hated certain types of baby food. He didn't like popsicles. At daycare they started to notice he sat in the "W" style. So with everything they had seen for themselves and me seeing the tantrums he would throw at home (smacking himself in the head, banging his head on the floor) they told me they would get us an appointment with someone who could come into the daycare and work with him a little bit and they would be able to help me out. I agreed. This appointment didn't go over too well. He wanted nothing to do with this woman. It took a while for him to get comfortable with her. She had to get in the floor with him and try her best to interact with him before he ever let her really see what she needed to see.

Through the years I have realized he has so much going on. Sometimes he sees no danger (running out in front of cars, running up to total strangers) and other days he won't even climb to get up to the top of a slide to slide down. Some days he loves hugs and kisses (when he initiates it) and other days it's, "Don't touch me." He absolutely loves loud music but can't stand for someone to raise their voice. He hates taking showers. Actually, if you were to stand outside of my house while I put him in a shower you would think I was beating him. So most of the time we do a bath. He just started sitting in the bath tub about 2 years ago. He still won't let me wash his hair on a regular basis but hey, he is sitting in the tub! He was 4 years old before he was potty trained. His whole body would stiffen up just sitting on the toilet. But I finally found a soft seat that would sit on top of the toilet that he loved, so I bought two. One for home, one for daycare. Once he was potty trained he never wet the bed! That would have been a disaster in itself because he absolutely hates for anything wet to be on him. If he gets a drop of water on his clothes then he automatically has to change. Anything we do, I have to try to plan ahead of time or it's going to be a fight. Some things I have to build him up for a couple weeks ahead of time. If not, then there's a chance it won't happen. He would gag while brushing his teeth but then stuff his mouth with food until he would gag. He's constantly hungry and thirsty. It's hard to fight this battle with a child who honestly feels hungry all the time. I cut him back on juice and make him drink water, if not the sugar intake would be insane. He isn't too picky about foods now, but he does not like sweets. Thank goodness!! The tighter you squeeze him when hugging, the better. He hurts me sometimes from squeezing me so hard. Tags bother him. Sock fuzzies in his shoes feel like rocks to him. If his socks are twisted a little too far one way, it aggravates him but if his pants are twisted he can't feel it. I have to fight him to put deodorant on because it tickles him so much that he hates it. He's almost 8 now but he would rather be with kids younger than him. He still isn't much for walking barefoot in grass and he will sit in a pool but he doesn't want to be splashed. Very difficult when my other son is like a fish! We go back and forth over food all the time. He was so mad and upset one day because I wouldn't let him have anymore bologna that he ended up giving himself a nose bleed.

He also has epilepsy. It has required him having lots of tests and medicines. He's really great about taking the liquid medicine now but he still isn't much on the sprinkles. I've been talking to him daily for 3 weeks now about a sleep study he is going to have only because I know how major this is. He doesn't like the idea of having stuff put on his head but I can't just throw him into that situation. He's prepared to go and he knows where we are going to eat after we're done. He knows he's allowed to take his own blanket, his bear and his mp3 player. Music is calming to him and I'm hoping he'll be able to listen to his music while they hook him up. I've talked to the sleep lab employees several times and made them aware that he has to be working with the same person the entire time and that we will be showing up early so he can get adjusted to being in a new place for the night. So much goes into planning. I try not to do anything unless I can tell him first. There are times I have no choice but to do something right then and there and we deal with his mood as best as we can.

I try to talk to him and explain to him the best I can when he does something he shouldn't. Spanking doesn't work for him because he thinks it's funny. Most kids cry over getting spanked but my boy laughs. His feelings get hurt more than anything when I get onto him and he puts himself in time out by laying in the bed. He usually falls asleep and wakes up in a much better mood, then we can talk about it.

No one understand what you're going through unless they too are going through it. For the most part my family has no idea. It really can work on your nerves and make you wonder what you did wrong. Is there something you could have done.. but I have been so blessed with my kids. I have learned so much more than I ever would have. I have been taught to have more patience and at the same time my other son is being taught to be more patient, more caring, more thoughtful. He loves helping his brother.

He has a lot of other things going on other than the sensory problems and the epilepsy, so it will always be a battle for us. But I'm always positive and I always ask questions when I feel the need. I can honestly say though, he is the sweetest child. He thinks everyone is good and he loves almost everybody. Of course there will always be days when he don't want to be bothered but for the most part we're doing good.

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Jan 28, 2013
by: Dani

Wow...I feel like you just described my daughter....almost to a tee! She has the epilepsy as well. I feel like things have always been a challenge, since I knew at 7 mths, something "was just not right", but now they are much more difficult. She is 6 and I feel like the past 10-12 mths are getting harder. She is more determinded to do what she wants, when she wants! She has that impulsiveness to just run. Its bad when we are in a parking lot, or store, or for that matter, Disney like this past week. Deathly afraid of fireworks! We had to be in a room with the tv loud so she wouldn't totally freak out. Now when she doesn't get her way, she bangs her head on the floor or wall, or hits herself. It bothers me so bad. I don't know what to do to stop her from doing this. I grab her hands sometimes, but the minute I let go, she does it again. Did your son grow out of it? It does wear on your nerves and no one gets it....including family, friends, etc. I feel like lately Ive had less patience to deal with it and just don't know what to do.We have all kind of therapists and she does ok in school, but sometimes will bang there, and comes home with a raw nose. Any advice?? It is reassuring to see there are others out there.....

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