Hypotonia Support Group

Hi Scalliwag

Let me just say that I totally understand what you mean about you and your partner tearing up inside separately. My now 14 month old son, is not expressionless, but he has his own set of issues, that basically make him not the 'typical'' little one..namely global developmental delay with hypotonia. These in themselves are difficult especially when we are seemingly constantly watching our friends have little ones and everything turning out just fine! everytime their children reach a milestone and they're all happy, we're happy for them as well, but it forcefully reinforces the fact that out little tyke still has a ways to go. I think these are the times when my partner has difficulty most. When he is home and our son smiles and plays with him he's all happy, but when we go on playdates i can just see the disappointment in his eyes, the regrets and i know hes tearing up inside. he never mentions anything, but he doesnt take our little one out by himself, not to the hardware store, city nowhere like that..and that's one of the things he always dremt of doing. having his son tag around behind him... when he leaves home, he looks behind at us with a longing one i can only hope gets filled one day (soon!)... and he doesn't take our son to therapy, i mean he has, but he much prefers if i do it, i dont think he can bear to see the limitations.. and so it has also created a strain on our relationship.. there are times when i feel frustrated with my partner for not opeing up, leting us cry together and console each other in our fears, and by so doing strengthen and uplift each other... but then i refocus, my partner is a big man who has accomplished alot in his life, this is not his struggle, its my son's, my efforts will be put in making his situation better, strengthening him, making him stronger! my partner can look after himself! the quicker my little one reaches his full potential, the less the strain should be in the household, the happier we should be as a unit (well at least im hoping so)

i just wanted to say hang in there..things will get better..in some form or fashion, everything will balance themselves out... peace to you and yours

Hello, When I felt alone, I emailed my husband, because I get much more out of a letter from him. We know we have had some communication problems in the past, but we do very well when we write letters. We also talk, but when I get really stresed & start feeling like I'm all by myself, I email him & tell him how I feel. It helps. And recently when I was freaking out because I thought she might be doing worse (even though I knew she had just picked up her spoon which was incredible), I figured maybe it was me having a problem. So i coughed up some money & went to counseling with a woman we went to before we got married & she's great. I immediately felt more optimistic when I came home and I'm enjoying what my daughter can do now. I worry that I'm not doing enough research, but I know she needs me happy. Researching and being all freaking out isn't what she needs, so right now I'm doing a little bit of research and lots of positivity & it's going good. Good luck.

I just read that he sat up on his own. CONGRATULATIONS!!!! Keep looking into the allergies. We did a test from www.enterolab.com that does not need a doc. Thought my own doctor uses it (my daughter's doctors rolled their eyes, but my own doctor uses it all the time and he is excellent & very popular & a mainstream doctor) because he says it tends to overstate a problem (meaning it's extra sensitive). So if it says you can eat something, you really can. I'm using it more to find out what my daughter CAN eat. We haven't gotten results back yet. For myself it helped me find my own celiac disease (led to a biopsy) and casein intolerance (i already knew dairy messed me up). I can't wait to see what it shows for my daughter because I already know pediasure improves her development but has soy & dairy & makes giant purple circles under her eyes & a tiny bit of eczema on arms & legs.

i feel like in both our cases the mother takes on the 'struggle' of the child. when we planned to have our child we were so adamant that we would share the load and quite honestly i feel the double whammy of being weighted down by the hypotonia, on one hand and his fathers disillusionment on the other. in my darker moments i feel like it is a lose - lose situation for me.
i have been considering counselling. thankyou, mommajamma for sharing your experience. mostly it is for us. for us - mum and dad - to learn how to understand our boy and most importantly for his dad to learn how to love and enjoy his son. i feel lucky in that i get more opportunity to be with daragh and build up a stronger bond - i get to see him giggle gleefully from time to time. but i know if i could rationalise what is going on in terms of child psychology and development it would be easier for me to understand the lack of feedback from our son. i've been overcome with the feelings of failure or lack of success, how many times have we said to eachother "i do not know what to do/ what does he want?"
i really want someone to interpret.
thankyou for being so inspirational regarding your advocacy for your children. something tells me that however tragic the change in my relationship with my partner, the journey with my son through this maze will make us all stronger. it is SO important to celebrate. these kids need us to be happy.

I also tried getting together with friends & having drinks. Normally I'm very easy going, but a kind of "acquaintance friend" ruined my entire night. My husband was watching the baby, & I was at my friend's house having drinks before dinner & I drink so rarely that I was already a little drunk from one drink. My friends were feeling their drinks too. One friend came a little late and as we were talking about babies (another friend was not drinking because she is pregnant) I mentioned my kid is very needy because she is 2 and can't walk (or sit up, etc). I think I mentioned that she has therapy 5x/week. Then we started talking about a party my friend hosted & I said that was the last time I got really drunk, because the next day i found out I was a few days pregnant. The friend who was late to the get together (who hadn't started drinking yet) said "So, was it the rum?" meaning Did the rum mess your baby up? She was making a joke & immediately apologized, and she doesn't know my kid (maybe has met her twice). I immediately felt sober & just had to get over it, but it really ruined the night for me. What a horrible thing to say. I kept thinking maybe a few years ago I'd have made the same mistake. It was just a reminder that I can't go hide from my kid's problems. Awful, awful night. I managed to stay with the conversation & left shortly after dinner. It's just horrible how things like that can knock you off any positive energy you had.
I need to get back to being positive and supportive. I know my daughter is improving, I'm just starting to get frustrated, so it's an odd feeling. She is babbling at me and saying "EM" on occasion where she hadn't made M sounds in over a year. And she is very giggly which is great.
But now all kinds of worry creeps in. She's doing awesome, but maybe the casein & soy in the pediasure are keeping her from doing incredible. We found one drink that doesn't contain gluten, casein, soy & is still close to being complete nutrition, and she had screaming fits the day after we started it and a seizure 2 days after & still screamed when we got home until we switched to pediasure. So she either had a viral infection or the artificial sweetener was NOT for her. If I was superwoman I'd figure out how to make something that had complete nutrition made from ricemilk or something. But I'm a little stretched as it is. My husband is very quiet so I don't really know how he feels. He seems to do well, but it's hard to tell. I know I need a visit to see my family, where everyone is supportive. (even then I'll feel guilty that she'll miss therapy for 2 weeks). Sorry I'm Debbie Downer today! I'll have to post again when I'm having an up day :)

((hug))

My husband seems to always be MR.Positive. I have my days where I just ask why?
but when I see how far my son has progressed with therapy and continues to of course at a slower pace I am so proud.
I will say school will be difficult but you have to find in each school they have programs for our children. In Florida it is called ESC class he received his therapy and the kids in his class are ranging from all different types of disabilities. BE STRONG..

it is almost 2 months since i wrote this initial post and i should say that my son's affect has become a whole lot more cheerful and that has made an amazing difference in our household. when i came in from work last week he was still up with his dad and when he saw me he shreiked and clapped his hands several times over and over. i just about cried. he can now move towards me and attempts to get up on my lap. yes the milestones feel like millenia-stones but it has the same effect on any parent - pure joy.