My name is Tabitha and I am a single mother of my 3 and 5 year old boys. My 5 year old struggled as an infant with numerous health problems ranging from RSV, severe allergies, countless hospital stays for pnamonia, severe asthma, etc... When I unexpectedly found out I was pregnant with my 3 year old, I could only hope he wouldn't encounter these same problems. Soon would I find out he would struggle much more. Health wise my baby has some problems but nothing compared to my older son. But the minute my baby was born, I knew something was different. When the nurses brought him to me after the circumsision and said he never cried but the minute he was placed in the carseat until well even still today at almost 4yrs old, he cried and screamed none stop. Endless visits to the pediatrician resulted nowhere. "he's stressed, he's this, he's that" at 6 months old he was diagnosed as colic!! He wouldn't sleep for more than a few minutes at a time, he screamed when I held him, he screamed when I put him down, he screamed when I put him in the swing, he screamed constantly. I went to the pediatrician and told them to figure out what is wrong with my child. I told them without sleep and the screaming I was scared I was going to hurt my child. They sent us home and said it was NORMAL, the word I would hear at every appt after that. I eventually figured out that placing him in the carseat W/O the strap and covering him with a mosquesto net and sitting on the front porch, he would go to sleep. I couldn't tell you how often I would fall asleep rocking the carseat. I tried driving him around but although it helped with the screaming "ALITTLE" he would not go to sleep. If he was in a deep enough sleep I could take him back in the house and put the carseat with him in it, in the crib. He hated the pacifier but I was determined he was going to take it, just for a few minutes of peace (well as much peace as you can with a 2 year old and a screaming baby in the house). A year goes by of "normal" as they say. He was early to crawl and walk but refused to talk. At his 1 year check-up he was sent for hearing tests which led to tubes and adnoids and more hearing test. I would tell the pediatrician how he would eat constantly, cry constantly, beat himself in the head, bang his head into the wall, beat the crap out of me or anyone he could get to, play in his own poop, screamed worse at the touch of water, and so much more. For 3 years I was told this was normal. I finally told them "if he's normal, then what the hell is wrong with my other son who never did any of this" They never had answers. I was finally referred to first steps after his first hearing test, to receive speech therapy. If it wasn't for the speech therapist, I wouldn't have gotten the answers I have today. She requested the OT who said," he can play with play-doh. He doesn't need OT" So the speech therapist gave me some OT techniques. She gave my son a chew tube to help with his oral delay. He eat it the first day. He has been diagnosed as EVELOPMENTAL DELAY, SPEECH DELAY, ORALLY DELAYED, BEHAVIOR DELAY, AND RECENTLY SENSORY PROCESSING DISORDER. He is being tested for sleeping disorders and an eatting disorder and when everything is straightened out they want to test for bi-polar.
After my sons 3rd birthday he was released from the first steps program and evaluated for an IEP for school. He now receives speech and behavior therapy in school. They sent a behavior analyst to my home to find out why he behaved so badly at home and was the best student in the class at school. School states" he never talks, he stands off to the side when we do a group activity but does perticipate" The behavior analyst was the next best help. She wrote down everything I told her, never pointed at me and said "it's your fault" like every other person in the world, she recommended a special needs center and for him to start some counceling to figure out what was going on. She told me about SPD and pointed me in the right direction. His councelor recommended my son to a special needs doctor who finally said he is defintily SPD- without a doubt in my mind, most likely high functioning autistic and would begin testing for the eating and sleeping disorders.
So that's where we are today. I have a homemade weighted blanket and vest, and have learned to be a better blocker than anything. I have had busted lips and have been bitten so hard I have bled. I have had bloddy noses and bumps and bruises from my toddler and although he is the cause of alot of my stresses, him and his brother are the reason I keep going everyday. I struggle being a single mom, but when you add special needs to it, it more challenging than most people have ever had to endure. I've dealt with the stares in the store isle knowing everyone is thinking I should beat his a** and occasionaly I would stare right back and ask if they had a problem, I've dealt with "the only thing wrong with him is you baby him to much" I have spent countless nights crying myself to sleep and even more days at work on less than 3 or 4 hours of sleep. Even after my son has the diagnosis of SPD, I still hear "theres no such thing" I printed out pages of research papers and handed it to my sister and said "hear ya go". I'm so tired of everyone thinking they know my child better than me after spending 10 minutes in a room with him. It doesn't matter how many medical books you have read or how much research you do, nothing compares to dealing with it everyday.
Don't get me wrong, there are good moments when I get to hug my son, and he tells me he loves me to his heart, he is smiling more and more everyday, I have learned to cut all tags out of his clothes and how far I can zip his jacket before "it chokes him", he has no turtlenecks and his bathwater can only be 2inches high. You can only wash the back half of his hair b/c the water can't touch his face, he has to take 5mg of meletonin to sleep at night and unless he's going in public his clothes are inside out and shoes on the wrong feet b/c the seams hurt and (honestly not sure why his shoes have to be on the wrong feet) I have figured out for the most part, what battles to fight. Is is worth a 3 hour war to get his hair washed "no" is it worth a 3 hour war and probably miss the bus to get his shoes on the right feet "yes". I have learned so much from my son and will continue to learn. I have figured out that regardless of how much you think you know about anything, it will never be everything you need to know.

I love my children and know that they are the reason I am the strong woman I am today. Every struggle we encounter will only make us stronger. I am finally getting some answers and although there arn't many resources in our area, we will finally get the help that we need. I don't think I will ever understand how my son feels but with the right answers, I come alittle closer to knowing how to help him understand.

I apologize for the length, but as you may know, some days are better than others- and today was one of the others!

Wow, Tabitha, you have been through so much. Good for you for persevering to get your son the help he needs. You sound like an amazing mom, and your children are lucky to have you.

thank you mimmy.

Went for sleep study results today and was told to get meletonin time release b/c the regular meletonin was wearing off. Dr said my son didn't have enough sleep apnea to cause the problems with his sleep, basically with all of his delays and stuff- he just has a difficult time sleeping. But the study showed increased brain waves. With meletonin they should have been decreased. Dr. asked me if he had ever had a seizure b/c these increased brain waves indicated seizure activity. I said no, I mean I would know and definitly would have told someone if my baby had a seizure. He said oh, ok- well this is also indications of ADHD.
I mean don't give me a freakin heart attack. This baby has enough to deal with and you throw this crap on our plate, then say oh well it could just be ADHD. I already knew he was most likely ADHD but specialist weren't sure how much was the SPD and how much was the other issues. Now he has to go for a "Sleep deprived EEG" which means WE have to stay up all night and go to childrens to have MORE things attached to his head and face. The 1st study he was so sad- he looked at me with all the wires on his face and said "MOMMY IT HURT" Then you have to wash the glue crap out of his hair when he refuses to was his hair to start with. 3 days of trying to scrub his head. I told him mommy was going to give him a hair cut before we go to this appt. The less hair, the less we have to scrub the glue out.


So as soon as I dropped my son off at school, I ran home trying to research all of the new info and decided not to jump to conclusions, that the dr should have taken a better approach and it's most likely ADHD. Besides I will only make myself sick if I worry.

I was wondering if anyone has ever heard of this or has been through this? Maybe some ideas of what to expect? I know they are going to hook up like 25-30 wires and want him to go to sleep. But how long before I know anything and what happens if he won't go to sleep? Any info would be great! Thanks

I'm really sorry that you have to go through this. My other daughter (not the one I wrote about here) had an EEG when she was about 1.5 (she'd had a seizure-like "spell" and also had some other things going on that have since resolved). The doctor didn't request a sleep-deprived EEG, he just had us come during her normal nap time in hopes that she would fall asleep. No way! The first time we went, she fought so much that the techs had to give up, and we had to come back a few weeks later. The second time she did pretty well and stayed still enough for them to do the study. It didn't last long. But those electrodes and all the glue on the head are just a mess.

I think, if I understand it correctly, the reason doctors request sleep deprivation is that the brain is more likely to show abnormalities when under stress. I think it's okay if he doesn't actually sleep during the study (though that probably would make things easier!) Good luck, and I hope it goes as smoothly as possible.

(02-08-2011, 12:41 AM)tabbers1227 Wrote: thank you mimmy.

Went for sleep study results today and was told to get meletonin time release b/c the regular meletonin was wearing off. Dr said my son didn't have enough sleep apnea to cause the problems with his sleep, basically with all of his delays and stuff- he just has a difficult time sleeping. But the study showed increased brain waves. With meletonin they should have been decreased. Dr. asked me if he had ever had a seizure b/c these increased brain waves indicated seizure activity. I said no, I mean I would know and definitly would have told someone if my baby had a seizure. He said oh, ok- well this is also indications of ADHD.
I mean don't give me a freakin heart attack. This baby has enough to deal with and you throw this crap on our plate, then say oh well it could just be ADHD. I already knew he was most likely ADHD but specialist weren't sure how much was the SPD and how much was the other issues. Now he has to go for a "Sleep deprived EEG" which means WE have to stay up all night and go to childrens to have MORE things attached to his head and face. The 1st study he was so sad- he looked at me with all the wires on his face and said "MOMMY IT HURT" Then you have to wash the glue crap out of his hair when he refuses to was his hair to start with. 3 days of trying to scrub his head. I told him mommy was going to give him a hair cut before we go to this appt. The less hair, the less we have to scrub the glue out.


So as soon as I dropped my son off at school, I ran home trying to research all of the new info and decided not to jump to conclusions, that the dr should have taken a better approach and it's most likely ADHD. Besides I will only make myself sick if I worry.

I was wondering if anyone has ever heard of this or has been through this? Maybe some ideas of what to expect? I know they are going to hook up like 25-30 wires and want him to go to sleep. But how long before I know anything and what happens if he won't go to sleep? Any info would be great! Thanks

Thanks again Mimmy. It shouldn't be a problem keeping him awake w/o the meletonin. He did really well with the sleep study so I think if they let him watch his dora &deigo he will be ok with this 1. Thanks again!

I have gone through two sleep studies. I did them as an adult. That glue burns very painfully (at least for me) and made it incredibly difficult for me to sleep during the sleep study.

I was and still am a NIGHTMARE to find shoes for that don't hurt or upset me. I swear I can feel every stitch. Sigh. I wish I could design shoes for myself. They probably be too ugly for anyone else but they would be comfortable for me. If I can't walk around the shoe store without crying or passing out from the pain, then I won't even consider buyng the shoes. I don't even bother trying most brands anymore.

One thing you might be able to do to help your son figure out which kind of shoes would work best for him is to try out a wide range of shoe types. Document the height of the arch, the amount of room in the shoe, how much padding it has, where the padding is, and anything else you see special about the shoe. Then have your son tell you which parts of the shoe hurts when he is just sitting with them on and which parts hurt when he is walking in them. If there are areas don't hurt, try to note what is different about those areas of the shoe from other shoes.

Take that compiled knowledge and try to find a shoe that has the most "good" attributes and the least "bad" attributes. Then have your son try on that shoe and note the problems with it and the good areas. Does that match up to your earlier notes about the other shoes. If the shoe does have more "good" attributes is it bearable enough for him to wear them as they are supposed to be worn?

As a single mother, finances are probably a bit tight. However, a good fitting shoe is worth the price tag.

Don't settle for a shoe that might work unless you have gone to 20 stores and he desparately needs something now. Yes, I am aware this means 20 stores of embarrassing screaming and tantrums. Sorry.

On the plus side, an excellent fitting shoe should lead to fewer tantrums on a day to day basis (at least about shoes).

Thanks Beck, never thought of that. He really can't explain where it hurts, but I believe it is the back since he doesn't flip out until it touches his ankles. He is fine if he puts the shoes on the wrong feet but when I put them on the right feet he is determined they are wrong and hurt. I bought some high tops thinking this would solve the shoes touching his anckles but still screams when I put them on.

But this is a great idea, the next day we have just me and him, I will have to make that my goal. He needs a good pair of shoes but I hate to pay alot for anything since he is growing so fast. He seems to like boots a size to big but I can tolerate that. He prefers his aunts high heels (whats scarey is he walks better in them then me) But thank you.

We are in the process of moving and so I will not be able to get on here for a couple weeks but as soon as I can, I will let you know how it works out. Also, your shoe making idea, even though alot of people may think they're ugly- you and many more would find them comfortable. Not as crazy of a thought as you may think. But I wouldn't have a clue on how to make shoes. Good luck and I'll be back in a couple weeks.