Monday, December 21, 2009

An admission...and some questions...

OK. I’m going to be honest. I’m having a bit of a hard time over here. I have 2 two-year olds (one with CP) and life is hard…and exhausting. I admit it. I’m struggling. So, instead of just feeling sorry for myself, I’m reaching out for help. From you. I have some questions and I’m hoping you can give me some answers or suggestions on how to make life easier.

Is anyone else’s CP kid having a hard time with sleep? I read a post here about E’s sleeping problems and it got me thinking about Ben. He used to be a champion sleeper…but now, not so much. He still sleeps through the night most nights of the week, but there are usually one or two where he wakes in the middle of the night crying. Sometimes a quick visit from Mommy or Daddy will comfort him but usually it doesn’t and he’ll cry on and off for a few hours. I think he’s uncomfortable and since he can easily reposition himself, he has trouble going back to sleep. But I’m not sure. Anyone out there with any similar experiences / stories?

Anyone else out there completely physically exhausted? I’m just looking for some company on this one…you know…the whole “misery loves company” thing. Ben is getting so heavy…he’s about 27 lbs now. And he’s so hard to hold…he doesn’t “hold on” the way a typically-developing child does. And he constantly wants us to walk him around holding onto his hands (instead of using his walker or crawling) and it’s just so hard on my body. That, combined with the lack of sleep mentioned above, has got me completely worn out.

What does the future hold? I know that no one can really answer this question. But I’m having a bit of a hard time (see 1 and 2 above) and need a bit of hope to hold on to right now. Ben is 27 months old. He’s been diagnosed with spastic diplegia. He can use his walker (just started this). He crawls on all fours, can get in and out of w-sit, and can pull to stand and cruise (with someone spotting due to balance issues). He’s classified as a Level 2 on the Gross Motor Function Classification System. Anyone out there with an older child that had a similar diagnosis / similar skills at this age that can shed any light on what the future may hold for him?

Does anyone have any suggestions on how to make life easier? Anyone come across a great idea or product that is impacting your child or your quality of life? I just know that you other moms out there have great ideas or have come across some great products that are making your lives easier. Please share them with me! I’m having a hard time right now and need all the help I can get. In particular, what are you using to transport your child (besides a stroller)? Maybe you’ve come across something that has been a great motivational tool for your child?

That’s all I can think of for now. I’m sure there are a thousand more questions out there but for now, this is enough.


  1. Hi. I've lurked for a few months now (found you through I heart multiples and I think I commented once). I just wanted to say that I feel your pain. I have 26 month old preemie twins who both developed hydrocephalus and had to be shunted. One twin seems to be fine for the most part, but my oldest twin had a series of twelve shunt revisions over his short life and has been diagnosed with CP (the neuro keeps saying "mild" but isn't that all relative? My guess is that his actual severity is somewhere between moderate to mild - hemi). Anyway, it is tough to always have to be an advocate and to always have to keep pushing. For me that is because I know that when I stop, his progress stops and I can't let that happen.

    Hugs to you. You've inspired me, and I think you are doing an amazing job at educating yourself and everyone else. Thank you.

  2. Hi I am a long time lurker also. I don't have a child with CP but I have twin 2 year olds (one with developmental delays, we are currently in the process of testing him for autism) and a 10 month old. I can totally relate to the physical exhaustion. It feels like I run all day and just as I deal with one problem another pops up. I know you will make it through. We both will. My son (the one with developmental delays) also has been having a lot of sleep problems lately. It takes him forever to fall asleep and he usually wakes up crying in the night at least 3 times a week. I haven't found a solution yet but just wanted you to know you are not alone and that this too will pass. Just wanted you to know you are not alone. HUGS

  3. hi cary! i hear you on all of it, but esp the physical demands on your body from carrying a heavy boy who doesn't hold on! drake is also about 27 lbs and it's about as much as i feel i can carry! we still use a stroller for him for outside adventures, but inside he crawls or i have to lug him around. i hope he starts with a walker soon, but i know that doesn't mean the carrying days are over as there are stairs and terrain walkers can't navigate. sorry i don't have the solution you are looking for, but wanted to let you know i understand. drake sometimes wakes up a night, too, but usually cries for a few minutes and then goes back to sleep. i think it's just a normal thing. hey i wanna know what the future holds for a level 2 cp kiddo, too! when you find out, let me know, okay? :)

  4. Level Two--well, if I were going to pick out a Level two kid who's a little older than your boys then I would think of Max over at and that, of course in only in gross motor. Your son seems a lot further along verbally. A doctor recently told Ellen (Max's mom) that she thinks Max will eventually be mainstream, which is as good a news as I think you can hear.

    The body thing sucks--I can relate and Charlie is only 23 pounds. It just wears you out. I always try to do the three part pick up with Charlie: sit, stand, pick up.

    Sleep--I've heard about this a LOT from other CP parents and it does seem to be related to re-positioning. Have you tried a foam mattress topper? I know they make fancy/expensive mattresses for kids who are completely immobile, but I'd start with cheaper first.

  5. My son is 13, he doesn't have CP, he has Fragile X Syndrome. We went through phases of no sleeping. We finally broke down and with the help of a phenomenal doctor, found some medication that helped.

    It is amazing how something as simple as a good night's sleep affects the whole family. I am not advocating medication, it was our last straw.

    I am just saying that you are not alone, and that you will find your answer!

    Another way I chose to get through those long days when I was completely exhausted is to remember that alot of kids without special needs don't sleep well either, I just told myself that their moms got up extra early to put on their make up and dress up just to fake me out :)

    Good Luck, Your answer will come to you!

  6. I have twin 7 month olds and I find the whole lugging them around tiring as well, cant imagine what I will feel like when they are 2, but I do find that a carrier helps. I love my baby k-tan but not sure which one would be best for an older child. I know that there are lots of carriers that would hold your sons weight and make it easier to lug him since it would give you more support since you said he doesnt hold on. Your such a good mom, I know you are tired but your boys are blessed by you!

  7. I know what you mean about the lugging around. Alex is 27 lbs and needs to be carried a lot. And Carsten is 33 lbs! He is walking, so that helps, but still a lot of strain. We recently took a trip to the SD Zoo and took Alex's walker and the double stroller - a lot of work.

    One of the few areas in which I feel Alex is "normal" or "doing great" is actually sleep! We are blessed - he sleeps 12 hours solid at night and RARELY wakes up. Interestingly, our typical child is the problem sleeper. ;-) Sorry that I don't have any advice on that area.

  8. Hi, my son Henri is 4 1/2. We started our journey when he was around 1. He could not sit by himself. After many hours of PT he mastered that task. Around 2 he began "lite gait" theraphy to learn to move his legs and use a walker. He then outgrew his walker and walked on this own. He is still a bit unsure on his feet sometimes, however, he is beginning to run and kick a soccer ball. He is so delighted and says "I run" all the time. Keep the faith as I think with hard work the possiblities are endless. It is hard to see the future but take joy in the day to day accomplishments as you move forward.