Introduce Yourself

Sonya - posted on 03/01/2011 ( 10 moms have responded )

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My name is Sonya. I live in Ontario. I am happily married and a mother to one child. My son Matthew has Cerebral Palsy as a result of a traumatic delivery, in which his shoulders got stuck and when they finally got him out, they had to do a full resuscitation on him.
We spent his first 5 weeks of life in the hospital, and then the following 4 years in and out of the hospital so much I'd forget what it was like to sleep in my own bed!
Matthew was stable for 7 years and then in 2010, all hell broke loose and Matthew got very ill.
All I have to say is, thank goodness that I have a wonderful husband to support me, because without him I'd be in the hospital!
So, on top of Matthew's CP, we've also got a mic-key and he is completely NPO. Matthew is non-verbal (but very vocal), in a manual wheelchair that we push, has scoliosis, wears AFO's and has a chronically collapsed lung.
His bedroom is basically set up like a hospital room - we've got a tonne of equipment in it - lift system, hospital bed, suction, compressors, O2 & NIBP machine, etc...
Although Matthew can't speak, he is aware and understands what's being spoken to him and he can respond in his own way (when he feels like it). :)
When he was first born, I didn't think I'd be able to do it, but now I realize that all those years of struggle made me a better person. I wouldn't trade him in for anything... except maybe a house on a beach in Hawaii. :) LOL
I look forward to meeting the rest of you, and I hope that you will find this group useful.

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[deleted account]

Hi Sonya- Jacobsen syndrome is a partial deletion of the long arm of the 11th chromosome. There are developmental delays, dysphormic features,short stature,heart defects,muscle tone abnormalities. Doctors told us when she was born that she would not likely talk or walk but she does both very well. Kaitlin was in a regular class in kindergarten but once grade 1 came it was to much disruption not only for others but her as well so we moved her into a different school, regular public school but it had a special class with kids with varying degrees of special needs and it worked quite well. She is now in High school samething regular school but special class and she is doing quite well. Overall things have actually worked out well for us we didn't have to fight for much everyone we dealt with was very good,we had the same teacher from grade 1 to 6, but there was no question as to what Kaitlin needed to function. We did have a few problems her last 2 years of public school with a new teacher due to conflicts but she is now high school and everything is fine again. We are now applying for what she will need since she is turning 18 soon. There are alot more waiting lists and longer lists now then when she was smaller as well.

Sonya - posted on 09/27/2011

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Hi Tammy - nice to meet you. What is Jacobsen Syndrome? I've never heard of it before. What kind of challenges do you face, dealing with your daughter?
A group of us have been trying to get disabilities recognized and discussed for this election, but we haven't had any luck so far....

[deleted account]

Hi I am Tammy mother to Kaitlin who is 17yrs old and has jacobsen syndrome, born with and diagnosed at birth. We live near London,ont.

Sonya - posted on 05/24/2011

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Malika - we are in K-W as well. It would be interesting to see if we have some of the same services and such. I assume that your son goes to KidsAbility for his therapy... What school does he go to? We just moved Matthew from Edna Staebler to St. Matthew's. We got fed up with the Public board and their lack of support. Feel free to PM me if you want to talk. :)

Michelle - posted on 05/11/2011

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Hello everyone :) Im Michelle, we live in a little village north of Edmonton, AB. I have 2 beautiful children, Claire who is 3 and Travis 21mos. Travis was born with hydrocephalus. At 34 wks pregnant, through ultrasound, he was diagnosed with Aqueductal Stenosis resulting in hydrocephalus. Shunt placed at 1 day old. Unfortunately he had a tough go at his first 16 mo of life. Bacterial infection in his brain, 2 different mengitis infections. To date 13 surgeries (replacments, externals, exploritory, EVT that didnt work). Unfortunately after each surgery his development regressed back into infantcy. Today he is a wonderful little guy. He now has 2 shunts in his brain! Last surgery was dec/10 :) Fortunately he has only "moderate" delays. Im so thankful that everyday I see him grow and develop. He sees O/T, Speech, P/T, earliy child educator every 4 weeks. Lots of work at home :) Im a stay at home mom. Im looking forward to sharing stories too! Hopefully meet someone in a similar situation :)

Allison - posted on 05/11/2011

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Hi I am Allison, 32 yrs old and mother of 3 girls. Tayden 11, Evalyn 4 1/2, and Eris 18 months. I live in St. Albert, Alberta (near Edmonton). Evalyn is my special needs kid, she has ADHD, OD, severe speech, understanding and behavioral delays. She has a brainage of a 36 month old. She can't answer simple questions like what is your name and how old are you. We have been teaching her sign language since she was 6 months, through the baby einstien and Signing Time DVDs, our communication barrier was taken down after we figured out what she needed. (Currently teaching Eris sign also). She is currently going through her second year in PUF (Program Unit Funding) she is not toliet trained and was doing well until her routine went off course completely, (her dad starting working nights and she saw him alot more during her day time routine. She gets angry quickly when she doesn't get her way and has a difficult time changing tasks. She will be attending CASA (Provides community-based mental health services for children, adolescents and their families)on the 17th, they will help me learn to approach Evalyn when she gets angry and other strategies with her delays. She will also be attending a program called PLAI at the Glen Rose hospital. I am very excited with all these new programs that will her and us as a family. The struggling through daily routines is very draining, but I do see light at the end of the tunnel.

Sherri - posted on 05/10/2011

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Hi I am Sherri and I have an amazing little boy Zander who we adopted when he was 9 months old. We live near Windsor. Zander has FASD (fetal alcohol spectrum disorder) and was also 2 months premature, but is fortunately very high functioning. I'm looking forward to the information that we can share on here for all our kids.

Terralyn - posted on 05/10/2011

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Hi I am Terralyn, I am mom to a 14 year olds with trisomy 21 down Syndrome, we Live in the greater Vancouver area of BC.
I did not know my son had Down Syndrome before he ws born and find that out while he was in surgery was not an easy adjustment but we did it and I wouldn't trade him for anything. I coach a baseball team of kids with special needs so i deal with a wide variety of things. Its a lot of fun and a HUGE blessing to work with those kids.

[deleted account]

Hi there, my name is Tracy, my family and I live just north of Toronto. I am mom to Abby who has CP which affects her left side resulting from a brain bleed Abby suffered three days after birth. Abby is now 10 and was born on February 16th at 27 weeks weighing 910 grams. Abby is also mildly developmentally delayed.

I am also mom to Connor who is 7 (and was born at 35 weeks).

I look forward to getting to know you.

Tracy

Sonya - posted on 05/04/2011

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Hi Sharon! Nice to meet you. We live in Kitchener.
I can't wait to see what kind of information we can pass along to others living in the same area.
I find that raising kids with disabilities in Canada is very different than anywhere else in the world... good and bad.

I hope Nathan enjoys his trip. Jeff and I have yet to take the plunge and get Matthew on a plane. I'm not sure how they'd handle the fact that he has to be seated in his wheelchair!

Sharon - posted on 05/04/2011

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I'm Sharon. My family lives in Toronto and I am the mother of a 4 year old son with Autism.

This mothers day we have planning a family trip to Florida, Disney world for 2 weeks!!! I am very excited and scared. I hope Nathan takes the flight and the crowds well. I am sure it will make him happy to see Handy Manny and Mickey live in person!!

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