I was desperate for sleep — 5 Minutes for Special Needs


Define Sleep:   A natural periodic state of rest for the mind and body, in which the eyes usually close and consciousness is completely or partially lost, so that there is a decrease in bodily movement and responsiveness to external stimuli. During sleep the brain in humans and other mammals undergoes a characteristic cycle of brain-wave activity that includes intervals of dreaming.

Sometimes we need to be reminded of what sleep really is, since most of the time we’re lacking in this area.  I only used the first definition as I thought it was the most directly related definition.  I can remember when I first brought my son home and we (my son & I) were staying at my parent’s house.  Tristan would wake up at 2:00 a.m. screaming.  Not for a feeding although we did that then too…but later we found out he was allergic to dairy.  One day we will have to discuss that.  He’d take his feedings all day, sleep like newborns do, then at 2:00 a.m. he’d scream and scream and scream.  I was of course exhausted.  My mom was trying to help me out and get him back to sleep.  I can remember falling back on the end of her bed and falling asleep.  Wondering how the heck I was going to do this.  We changed his formula to a Reduced Iron formula think maybe it was binding him and making him uncomfortable.  As part of his follow up, I mentioned to the doctor that we had changed the formula to the reduced-iron and she said he needed the iron and to switch to the soy formula and see if that helped.  She said it wouldn’t happen over night but if I gave it a couple days, I should be able to see the difference.  OH MAN did I see the difference after one feeding.  Some maybe cringing as I didn’t pump or give him breast milk but when he was inpatient, it wasn’t even offered.  They really didn’t expect him to come home.  

But back to the sleep.  Sleeping got better, but far from over with the deprivation of sleep.   We had to feed in the middle of the nights for at least 3 years.  Since we have to fight for every ounce he gains, I can’t refuse him food or formula if he’s going to take it.  It’s a fine line.  There were days that my son would get up at 1:00 a.m. for the day, no nap, and back in bed at 7:00 p.m and up again at 1:00.  Sometimes I would call off work, as I couldn’t see straight.  Other times, I’d take him to school and go to work paying medical claims.  We tried everything to get him to sleep through the night.  He’s always gone to bed at 7:00 p.m.  I never picked that time as his bedtime, he did.  You can see it in his face when he’s spent for the day and it’s always between 7-8:00 p.m.  The obvious that everyone would sujest was to keep him up later.  When we were able to do that, he’d only cry till he could finally sleep and be up at 1 again.  It was back biting.  There was a point that he’d start the night of in his bed and when he’d wake up and I’d get him back to sleep, he’d wake up.  Then it got to the point where I was exhausted and desperate for sleep.  Now I don’t condone it, I don’t recommend it for everyone, but it worked for me.  Even if he started the night in his bed each night, when he’d wake in the middle of the night, he’d end up in the bed with me.  He’d cuddle in and fall right back to sleep.  It became a habit.  I always said it wouldn’t happen with me…ha ha on that…he’s in our bed.  I think partically because he wanted to know that we were there (lack of vision plays a bad trick on night & day), other part thinks where we have the capability to roll over or adjust to go back to sleep, he isn’t able to do that.  He used my arm for his pillow and when he needs to roll over, he rocked his head back and forth…then we knew it was time to roll over.  Funny how they can communicate that kind of need.  I was desperate for sleep. 

What sleep deprived tip can you give???

Email Author    |    Website About Tammie

I'm a homeschooling mom to a wonderful special boy. Tristan has spastic quadraplegia (CP), severe cortical vision impairment, seizure disorder, and he is non-verbal. I honestly think he's the one doing the teaching. I would not change anything!

View all articles by


This post may contain affiliate links. When you use them, you support this site. Thank you!
See our Disclosure Policy for details.
1 Janet January 29, 2011 at 10:18 am

When Luke started to wake up at 2-3 am for the day after it had taken him a long time to calm down and get to sleep, I talked to the ped. Luke’s situation was sensory integration issues associated with his autism. He didn’t know where his body was and he would wiggle, wiggle, wiggle trying to find it. Long-story-short, he is now on mellitonin (OTC) and guaficine (using side effects of a blood pressure med) and he is MUCH better.

2 Maggie Mae January 30, 2011 at 10:39 am

LOL — My guys are 5 and I’m finally putting 6-7 simultaneous hours of sleep tgether… just! Twins with Down syndrome… and sleep apnea. My recommendation? If you’ve got a child w/ special needs with sleep issues… don’t try to tough it out. Do your own research, share you story with other moms of kids with similar special needs then go right away to the Doc to clear all potential medical issues. Too often we’re overlooking something medically wrong and jeopardizing their health and our own. I know I didn’t want to be one of those Moms running to the doc for every little thing. But with 2 guys waking up 4-5 times per night EACH… for 3 years… I was just being stubborn AND exhausted. Within 2 months of their surgery, we all started to get some sleep!

3 Mary E.S. January 30, 2011 at 1:07 pm

Both of my kids slept in the bed with me when they were little. America is one of the few country’s that don’t advocate the “family bed”. Because of numerous health issues,when the oldest was in another room I could not sleep for fear he would stop breathing and I would not be there to force him to start back.He slept on my chest or cuddled up against me for several years.The next one slept in a baby bed untill he became autistic at the age of three.Because of problems brought on by his autism,he also ended up in my bed.My first did not sleep more than 1 1/2 hours at a time untill he was 4 yr.old and at that time I was trying to work full time.I say do what you need to,to get more rest.If someone has a problem with your child being in your bed,tell them it is YOUR choice as the child’s parent and no one else’s.

Comments on this entry are closed.

Previous post:

Next post: