Sept roll call

iVillage Member
Registered: 09-12-2008
Sept roll call
7
Wed, 09-02-2009 - 8:58am

It's September already?!? Wow...where in the world did summer go?
Let's do a check in....

Give your
Name
Kids name
how does SPD impact your child/family



Jessie mommy to Gabe(4.4 years ASD/CAS/SID)and baby Zane



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Jessie mommy to Gabe(5 years ASD/CAS/SID)and baby Zane (1 year old)



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iVillage Member
Registered: 12-29-2006
Thu, 09-24-2009 - 11:03pm

Hello new friends!
I am Clara-Leigh and I have three kiddos:
Addie-8, low tone, heat intolerance and rapid fatigue. Neuro says likely mitochondrial disease.
Ainslee-6...NORMAL MIDDLE CHILD!!
Garrett-4, low tone fatigues easily, slow tummy motility, g-button from 17-24 months old, hearth cath for heart repair, developmental delay to about 18-24 months level, hypotonia
And this week the OT eval brought out that even though he had sensory issues much younger and was eventually released from OT, now he needs it again. He does some stimming to rhythm. LOVES drums, music, but it better be HIS FAVORITE SONGS, or ELSE!!
He took a break from therapy over the summer except for speech. That was nice. He is in a special ed preschool class with 4 kids like him and 4 typical four year olds. He is doing well...rides the bus in the mornings.
Our biggest challenge is traveling in a car....PURE HELL!!!!! I go from thinking that maybe by the time he is 15 he can sit in the car and be happy finally.....then to thinking bribery might work for the 5 millionth time...to wanting to cry....to wanting to punch him...to wanting to just get out of the car and walk away sometimes, like today. Just can't fix it for him, and as he gets older, it gets harder and harder.
Today at the ENT physician office, I had nurses and office staff rushing in to see what kind of terrible pain he was in because the nurse was trying to get his temp on his forehead and weigh him. THEN came the doctor wanting to look in his ears, nose and mouth. I had a nurse look at me and ask,"Do you need to take him the restroom or something????" YES< I thought, I would love to take him to a local restroom if I thought that would actually do a LITTLE BIT OF GOOD!!! Yes, I would take him anywhere to help him......
Just read a fabulous book The Horse Boy. It was amazing. I recommend it to each of you because you will be able to place yourself in this real story written by the father of an autistic boy who takes his wife and son to the ends of the earth to find help for the son....it touched me.
Wow, this was suppose to be a little intro, but this has been a challenging week after a really nice summer, and I think I need to go to bed!!! I will gladly share more of our experiences if it helps any of you. I am an open book and enjoy listening to your vents and celebrations as well. Hope you all don't mind my dropping in!!
Oh, anyone read The Out Of Sync Child??? It was recommended to me by our OT and I ordered myself and my mother a copy last night.
Nice to meet you all and I look forward to chatting!! Our family's web site with more in depth info is www.johngarrettevans.weebly.com

May the Lord bless and keep you and your precious little ones!!
Clara-Leigh

Garrett, 4 years old, mild congenital myopathy,possibly MITO so hypotonia, g-tube from December 06-Fall 07, constipation, gross motor and speech delay, heart PDA repaired by hearth cath. Winter 08. OT once monthly, PT two times weekly, Speech 3 times weekly, water therapy weekly and as many horseback rides as we can fit in at home!

Addie, 8 years old, mild congenital myopathy, possibly MITO. Low tone, tires easily, poor endurance. PT weekly, regular swimming and rides horses 3-4 days per week and competes in barrel racing and other timed events.


Ainslee, 6, just about too normal some days, but really patient with all of her siblings' therapies!! Oh, CONSTIPATION...how can one forget that???

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2009 CO

Garrett in Hay July 09

www.mitolifewindow.blogspot.com


Garrett, 5 years old, mitochondrial disease, MITO specialist currently testing him for mitochondrial DNA depletion syndromes.... hypotonia, g-tube from

iVillage Member
Registered: 04-21-2008
Wed, 09-23-2009 - 1:49pm
Welcome to the board, Stevie! I absolutely love the name Nolan. :)

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iVillage Member
Registered: 01-09-2009
Sun, 09-20-2009 - 11:03am

Hi,

Lilypie

Lilypie

iVillage Member
Registered: 01-27-2006
Sat, 09-19-2009 - 4:25pm
Hi! New here
I'm Stevie, mommy to only boy Nolan. He is going to turn 3 on Oct. 10th and is an undiagnosed sensory kiddo. He is a seeker and also has some auditory defensiveness issues. The kid has been go go go since the day he was born!
It affects every part of our lives and is getting worse as time goes. We are waiting for an eval from the Kenny Rogers center since the OT here in town isn't covered by insurance. We try to take it day by day but its getting harder to go anywhere. Nolan loves to go hiking at our local conservation department and runs all the time. He can not handle the smallest things though, hand washing can cause an hours worth of crying. DH and I are struggling to figure out how to avoid his triggers but they seem to change everyday. With no family support close day to day life has become draining.
I'll be around more and more for support.



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iVillage Member
Registered: 03-09-2005
Wed, 09-16-2009 - 9:25pm
Name: Laura
Kids name: Isaac
how does SPD impact your child/family:
In so many ways! He is a sensory seeker and has had great difficulty in preschool/daycare where he attends full time. It seems to be getting worse instead of better. The school district is finally coming to do an evaluation tomorrow and we need HELP! All of us (his parents & teachers) are at a loss. I have read multiple books and we spent the summer going to OT and nothing is helping. He dislikes school (overstimulating) and lashes out at teachers and other children. I worry that he will be asked to leave if things do not change. So far, we have the SPD diagnosis from the OT, but we also have an appt. with a Developmental Ped to find out if/what other issues there are.

Laura, mom to

12/08

Laura, mom to

12/08
iVillage Member
Registered: 11-13-2003
Tue, 09-15-2009 - 12:07am

Hi, I'm Molly married to David

Molly
iVillage Member
Registered: 09-12-2008
Wed, 09-02-2009 - 9:03am

I'm Jessie. I have three children. Two boys and a step daughter who just turned 18. My boys names are Gabriel and Zane. My step daughter is Jasmine. Gabriel is my sensory kiddo. He is a seeker to the Max. He can't sit next to anyone without touching them. He runs, jumps, spins, twirls, bounces, hops, wiggles, and talks loudly!! He does avoid some things....but very little. Loud sounds upset him and he doesn't do well in crowds.

The biggest impact SPD has had on our family....going out in public. When Gabe is having a bad day...everyone suffers. We took a trip to Baltimore one time....and we had to leave after an hour of being there because Gabe couldn't deal with all the noise, people, and walking. He had a horrible melt down and cried for almost an hour. It was hard on me and daddy...and baby brother Zane. We have not had a family trip since then.



Jessie mommy to Gabe(4.4 years ASD/CAS/SID)and baby Zane



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Jessie mommy to Gabe(5 years ASD/CAS/SID)and baby Zane (1 year old)



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