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My Bella

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#1 kat 4/10/2009

kat 4/10/2009


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Posted 30 January 2009 - 08:20 PM

[attachmentid=653]hi, i just thought i would add a new topic and introduce myself and my beautiful daughter Ysabella.

Ysabella is just like every other 4 year old, she attends kindy, walks, talks and runs around just like everyone else, the only difference is that she is developmentally delayed and suffers from hypotonia (low muscle tone) shes suffered with problems since she was born in 2005, we have been through test after test, scan after scan and paediatrician after paediatrician and still we have no answers or reasons for her being like she is, shes very petite for her age only weighs 12 kgs and is rather short for her age (shes under the 10th percentile) but because of the weight and height being in the same percentile they are not fased by it anymore - they were at one stage they admitted her into hospital for a month with failure to thrive and fed her through a Nasal Gastric tube for 5 months (they added polycose to her formula and substitute fed her for 12 hours at night) but it still didnt make her gain weight........shes been under specialist after specialist, refering her on and on for tests and tests but as soon as they come up negative they just try and think of something else.......

up until now shes come ahead with help from her childcare centre, they have in the past been fantastic, they have extra funding through inclusive directions and had an extra staff member on to work one on one with her while she was in childcare, but since shes now 4 and has started kindy she has lost the one on one help and is slipping backwards! and i dont know what to do!!! according to the education department shes not needing the one on one help anymore and can get it with 4 other kids at the same time so since shes started kindy im having behavior problems where emotionally shes not coping so is now lashing out and getting frustrated, shes not achieving anything atm, shes not wanting to go to kindy and shes now not interested in anything that she was before! her toilet training has gone down hill - we went from no accidents in 4 weeks to now one anytime someone raises their voice! and i have the dilemma where her my fiances parents arent wanting to help with her anymore because shes so full on! they have my partners daughter overnight or for the day but wont have bella because shes too difficult now! which makes things sooo frustrating because we also have a 7 month old that needs attention too but i feel like i have 2 babies in the house all the time!

Anyway ive blabbered on long enough now and anyone whos gotten to this part im grateful that you have taken the time to read my frustrations....so THANKYOU!!!!!

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#2 *****030812


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Posted 31 January 2009 - 03:04 PM

Welcome Kat and thanks for sharing Ysabella's story.

My nephew has developmental delays and hypotonia also (plus characteristics of autism, siezures etc). He is turning 8 shortly and has been seeing specialists at the children's hospital for years and still no diagnosis just like Ysabella.

It can get frustrating, but I know we all just cling to the positive that, he isn't regressing. As they have said all along, as long as he continues to develop (even though he is years and years behind developmentally), then that is a good thing.

My nephew had the one on one care at daycare also.
Does Ysabella have any other one on one sessions with therapists etc? (speech therapy, swimming, Kindagym type stuff etc).

Has Ysabella ever attended a Special Education Development Unit ? (SEDU). Not sure if this is what they call them in other states...........my sister/nephew are based in QLD.

I'm assuming you are in regular contact with a support network ? but if not, it may be worth talking with them to see what else is available for Ysabella, to help with her development/behaviour etc and also maybe see about getting respite so that you can have some time out also.
I know up here there is special funding that is available to disabled children. For some you have to get chosen, others you can apply for. Maybe other states have something similar. I'm not sure how they determine who gets what. My sister is a single Mum which may have helped in their case........but I'm not 100% sure.

It has taken my sister over 7 years to agree to respite occassionally and each time she misses her son terribly and doesn't know what to do with herself and it's normally only for a few hours wub.gif

If you want to chat to someone else who is going through the same, I would be happy to pass your email address onto my sister.

Take care.

#3 atua


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Posted 01 February 2009 - 06:43 PM

i don't have anything constructive to add - i just couldn't read and leave.

Ysabella is beautiful wub.gif, i can only imagine your frustration going through specialist after specialist and now dealing with the regression and lashing out as well sad.gif

i really admire SN parents - you mum's and dad's are truly amazing.
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#4 ClaireBell


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Posted 01 February 2009 - 09:36 PM

Just wanted to say hi and thanks for sharing your story. Sorry things are so tough at the moment. I hope the inlaws start chipping in a little more with helping you x
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#5 Foster


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Posted 10 February 2009 - 07:26 AM

Thanks you for sharing your story about your beautiful daughter.

I am a special needs teacher in NSW. Believe me that the teachers and schools are probably feeling just as frustrated as you are about the lack of funding and one on one teaching.

Just a few tips:

* Keep in regular contact with the teachers and school. They need to know all your concerns and feelings. They may or maynot be aware of everything.
* Is it possible for her to at least get a teachers aide in the classroom (not sure what state you are in)
* Have you considered a special school placement while she is so young and still learning so many things?? There is always the possibility of attending the mainstream school in a few years time. Special classes have more time, resources and training in things like behaviour management and toilet training.
* Apply for respite care... You and your family need time for yourselves as well.

My thoughts are with you. Stay strong
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