hiya all new to this

iVillage Member
Registered: 11-18-2004
hiya all new to this
8
Thu, 11-18-2004 - 5:33pm

hiya everyone,
Never done this before so bear with me. My name is michele and im from Scotland im a mum of 2 amazing wee boys jordan and aarron.Jordan is 5 and aarron is 2 I knew from the start aarron was different but thought id go down to the doctors they would say yeah seen this before dont worry itll all be ok in a couple of months get a physio in blah blah. What i was prepared for and what has happened in the past 15 months i was not. My wee boy has been diagnosed with severe hypotonia we have therapists everyday of the week ot physio s/l he doesnt walk talk but has an amazing personality and an over whelming understanding considering his disabilities. I dont know about the rest of the world but in Scotland no one will tell u anything no matter how hard u ask. Do you ever get over the crying and the guilt, do you ever feel like your doing enough. My whole family seem to think its a developmental delay and ohhh hell get up and walk one day, I know better.There is no support groups in this country for hypotonia no one wants to talk its almost like aarron is the only child that has this condition and i know theres lots of people out there feeling the same as me so maybe im looking for any mums and dads that are where i am now. I feel like my hands are tied because i can only ask specialists about things that i have researched. I love my son up to the roof down to the floor around the world and a massive bit more(laffs) I want him to be the best he can be so any advice info support or cuddles is greatly appreciated.

Thankyou for reading this
xx michele

iVillage Member
Registered: 03-19-2003
Fri, 11-19-2004 - 7:23am

Hi Michelle and welcome...sending you hugs today and hope you'll be able to see a little more light at the end of the tunnel.

 


 



iVillage Member
Registered: 10-21-2003
Fri, 11-19-2004 - 8:35pm
Hi Michele
(((((HUGS))))) I can only agree with Jan come around here and ask us questions...if there is anything you are not sure of, or don't have the time to research (with 2 kids it;s hard I know) come here and we'll help. Or maybe we can even give you specific questions to ask. Now as for support, in your area, if you have specialists then maybe you could see if they could recommend a family, or a service that might deal specifically with hypotonia...sometimes there are groups out there but they can be hard to find. I hear you totally about the family members who think that one day your child will be FINE, we went through the stage where everyone HOPED and PRAYED that ALicia would be OK. UNfortunately right after that stage (with family members) comes the pity stage...when their high expectations aren't met, they get down, and then they have to pity...some never get past that stage. Even though they tell themselves that they do, my grandmother for example cannot let me discipline ALicia (when she drops her head I tell her to bring it up) in anyway...she tells me that Alicia CAN'T. To which I reply of course she can,how do you think she sees the chalkboard at school? After pity comes the acceptance stage...most people get there when they realize that your child is happy and enjoying their life. Yhey suddenly come to realize that your child doesn't know a life any different from the one they live and therefore they are thrilled when they learn something new, or can hold a pencil for 2 seconds! Once that stage is reached the joy is endless. It does take awhile, and there are still days when a little pity seeps in, or a little cry slips out, but I think that would come with any disappointment our children face, even our "garden variety" children. But for the most part you will have the fun of catching a caterpiller for your child and placing it on their hand to let them feel the fuzziness...instead of dwelling on what medications, or therapies they face each day, or thinking about the things they cannot do...you will spend your time seeing how the therapy can be made into a game, or how at least they are here to have a hug after each dose...or figuring out the "COOL" ways that you can get them to go sledding, or to help them jump on their bed.
SO I guess to answer your questions you do get over the crying and guilt, and yes you will feel that you are doing enough for him, and for Jordan (BTW...my youngest child, a boy, is also Jordan...he is 2 (in January 2004), and ALicia (athetoid cp, seizure disorder, non verbal) is almost 7). It takes time and remember that it is OK to have days where you cry and play the what if game. SOmetimes the "what if" game will allow you to come up with an alternative way to achieve that goal! Sorry this is so long...again I'll leave you with more ((((HUGS)))) Shelley
iVillage Member
Registered: 02-19-2004
Sun, 11-21-2004 - 9:11pm

Hi Michele and welcome!

iVillage Member
Registered: 11-18-2004
Tue, 11-23-2004 - 2:27pm

Sandra
Thankyou for your reply,it really cheered me up. Its nice to finally speak to someone who is aware of hypotonia.You are the first person other than specialists who know what is going on.I feel it such an isolating condition because you have no dx not that Im sure I really want one if you know what I mean.
Is your little one walking and toilet trained(I hate that phrase makes them sound like a dog lol)I just dont know when to start the potty training.Aarron tells you hes done a wee by pointing at his nappy ive tried various times but all been accidents unfortunatley. We use a walking frame(back to front zimmer) and have just got a dynamic splint suit which has made a big difference especially in posture.He walks great but just does not have the sense of where his body is in space I wish I had a big crystal ball sometimes just to know this is all worth while.

Of course I know its all worth while because everything helps its just hard when you see your son falling over and banging thier head and face many times a day. The frustration because the intellect is there and no way of communicating clearly and the pain when he wants to be on his feet all the time watching him struggle. Its just really hard when everyone else has a diagnosis and I have no mums to say yeah my son has that have noticed this or how did you cope with that,do you know what I mean. I am as positive as possible at all times for both the boys just be nice to ask a bit advice sometimes.Hope you dont find this too deep (laffs) just your the first mum Ive spoken to who can associate with me.

thanks again sandra
hugs michele and aarron

iVillage Member
Registered: 05-16-2003
Sun, 11-28-2004 - 8:17am

Hi Michele,

My son Michael has moderate hypotonia and my daughter Elizabeth has mild hypotonia. Michael also has ASD, Global Developmental Delay, Epilespy, Speech/Language Delay and Asthma. Please know that you are not alone. Michael walked at age 25mths and started talking at around 3. Even though Michael can walk he cannot run. He has only just learned to jump holding onto something (like a bar but not on his own). He tires quickly and I still have to take a pram out shopping etc cause he cannot walk for long periods. He needs help to climb stairs standing up (but can negotiate them on all fours). He still crawls when tired too. He has very low trunk stability so staying upright is hard work for him. He also has sensory issues and is tactile defensive. He "loses" his body all the time. I have found that regular pressure applied to his body helps him (this can be from constant pressure to only needing it every other hour or so). We use weighted sheets and blankets. We wrap him up a lot. I have even had to lay on top of him (with a hugh pillow/mattress thing inbetween us) to apply the pressure he needs to "remember" where his body is. He is not TT as yet. He has therapies 2 times a week now with ot's, pt's etc and I do the rest.

Michael has on average 25 new bruises per week from falls etc but he has a very high pain threshold and most of the time doesn't even realise he has hurt himself (this is not really a good thing cause he hurt himself in a very bad way about 6mths ago where he ended up having to have bone scans because his hip was out and we didn't know until a few weeks after he did it. Worked it out cause he stopped walking).

Hope I haven't scared you or anything. Just wanted you to know that there are others going through similar things to you and that I am here if you want to talk.

Tracy mum to Michael (4) and Elizabeth (19mths)

iVillage Member
Registered: 11-18-2004
Sun, 11-28-2004 - 6:34pm

HiTracy

First off hugs big time for being a fab mum it must be hard with 2 wee ones with hypotonia and michaels other problems.Hope you dont mind me saying problems you know what I mean never politically correct no matter what u say. Your message was fab its just nice to speak to mums who know what I'm going through.I hear you with the bruises Aarron falls over maybe 20/30 times a day. Not as much as he used to but still once is enough when your a mum.

Ive never heard the phrase "tactile defensive" used with Aarron but when you explained about Michael it fits exactly what Aarrons like he has no understanding of where his body is in space.You said about the things you do with Michael like weight bearing I'm not familiar with that.Hope you dont mind me asking are you in the UK.The reason I ask is aarron has a dynamic splint suit which is hand made bit like a body girdle no bones just lycra. It has specially made panels for the weak muscle area Aarron is torso and pelvis.My god tracy did I notice a difference when i put it on especially with posture.Aarron was the first child in central scotland to get one and theyre pretty expensive but I think its great.Are you aware of these suits.I hope so and you dont think I'm being forward by saying its just Michael sounds similiar to Aarron in a different way if you know what I mean.

Any way its late now so early start in the morning as usual big hugs again to you michael and elizabeth.

michele,jordan & aarron

iVillage Member
Registered: 02-19-2004
Sun, 11-28-2004 - 7:04pm

Please do not feel that you are alone.

iVillage Member
Registered: 05-16-2003
Sun, 11-28-2004 - 11:54pm

Hi Michele,

Thanks for the hugs. It's not as hard as you would think with 2 children with probs. Must just be because I am used to it. Don't really know what I would do with my time if I had "normal" children lol!

I am from Australia and I have never heard of a dynamic splint suit. Sounds wonderful. Michaels tactile defensive issues also span to touching what he calls "weird stuff" for eg playdough, rough textures (spiny balls, carpets, grass, sand etc), and also a lot of food. He has feeding issues as well. Didn't move on to proper solids until almost 3. Still have a rough time with getting him to eat anything that requires chewing or feels rough in his mouth. Still prefers soft mashed type foods. His hypotonia really affects most of his body (mouth, head, arms, hands, legs, feet, trunk....looks like it is all of his body actually). Does Aarron have feeding issues?

Using weight bearing on Michael calms him down when he gets stressed and starts going into meltdown mode (mainly to do with his ASD) but we have found it useful with the hypotonia too.

Speaking of falling down we had an ot/pt appt today (which we have to go into the office for now) and when we were leaving Michael had another bad fall. They have a ramp and separate stairs for access to the building. He prefers the ramp of course. Today we are leaving as per usual and halfway down the ramp he falls (he had a pretty full on session and I should have realised that he was just too tired to walk properly - naughty mummy!). He has grazed both knees, both elbows and his face and bruises on his back (he doesn't do things by halves you know). Don't you just wish that you could wrap them in a bubble so that they would just bounce instead of getting hurt? He bruises so easily, just the smallest bump and bang - there is a whopping bruise!

Anyway must go have heaps of housework to do. Talk to you soon

Tracy Michael and Elizabeth.

BTW my email is tracy_m@optusnet.com.au if you wanted to chat