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hi

Posted by on Jan. 3, 2013 at 7:23 PM
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My name is Val. I am a mother to an 8 year old boy. He suffered hisTBI when he stopped breathing at the age of 4.5 months old. It has been rough through these last few years but things are starting to look up. Since at 4.5 months old he was at the point of starting to meet certain milestones, he has to learn everything for the first time ever. Like walking, talking, sitting up on his own. Granted he is making leaps and bounds in some areas but not so much in others. He has already surpassed what the doctors said he wouldn't be able to do on his own. For example we were told he wouldn't breathe on his own, eat without the aide of a feeding tube, drink out of a cup or straw, go potty on his own, and walk or talk. He CAN breathe on his own, he eats by mouth but needs assistance to get the food to his mouth, he can drink out of a cup and use a straw, he walks with assistance or his gait trainer(walker), and he does talk its just far and few between.

We are fighting with medicaid to get him back into physical therapy. He was denied back in july. I appealed and lost the appeal. So i take him swimming in a pool. We are waiting to see if he gets approval for horseback riding therapy. He gets occupational therapy and we are on the waiting list for speech. He gets physical,occupational, and speech therapy in school.

by on Jan. 3, 2013 at 7:23 PM
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Replies (1-7):
feralxat
by Member on Jan. 4, 2013 at 7:14 PM

Hi!

I never saw the "New" notification. Sorry it's taken someone so long to get back to you.

Welcome to the group. We are a safe place for you, feel free to type anything.

Congrats on the kid's recovery.

Have you gotten him declared disabled under Social Security?


willysmama
by on Jan. 4, 2013 at 10:33 PM


Quoting feralxat:

Hi!

I never saw the "New" notification. Sorry it's taken someone so long to get back to you.

Welcome to the group. We are a safe place for you, feel free to type anything.

Congrats on the kid's recovery.

Have you gotten him declared disabled under Social Security?


Thanks. He is still miles away from where he should be but things keep improving even though i get frustrated at times. No I haven't applied for SSI in a while. He was denied a long time ago(7 years ago) and i wasn't up to fighting at that point and time to try and appeal it or fight for it. We are trying to save it for when he needs it.

feralxat
by Member on Jan. 4, 2013 at 10:41 PM

IDK if you know but medicaid disability is linked to the SS admin.

I understand miles away. SO lost so much and he is pushing 50.

Frustrtion is common, do you have a TBI IRL support group?

A CM GF told me that if denied just replying with the letter landing on someone's desk makes all the difference in the world.

How are his pain levels? Is he in therapy? i.e. depression, PTSD?

willysmama
by on Jan. 4, 2013 at 10:50 PM


Quoting feralxat:

IDK if you know but medicaid disability is linked to the SS admin.

I understand miles away. SO lost so much and he is pushing 50.

Frustrtion is common, do you have a TBI IRL support group?

A CM GF told me that if denied just replying with the letter landing on someone's desk makes all the difference in the world.

How are his pain levels? Is he in therapy? i.e. depression, PTSD?

He has disability medicaid. I have never heard of it being linked together with ssi. May try this year again. I have a TBI IRL support group but the one that runs it prefers adults at the meetings. So we go to some special needs support groups. He is in therapies like speech, occupational, and physical at school and we do physical home therapy program(medicaid is being a pain at the moment)and occupational outside of school. He is on a wait list for speech outside of school. No depression he is a very happy boy unless he is sick or isn't getting his way. He has trouble sleeping so he is on a prescription sleep medicine. And is doing better on it(he use to sleep for only 4 hours a night and stay up til bedtime the next day, now he sleeps 7-12 hrs a night). The only pains he seems to have his when he has his clonus(foot shakes) or when he walks for long periods of time in his walker.

feralxat
by Member on Jan. 4, 2013 at 10:59 PM

Yeah many programs (autism spectrum included) are linked to SS.

I would recommend looking into autism therapies. Once you begin to talk to those moms you will learn how much we (TBI) have in common. TBI causes sensory perception disorders.

SO states he was feeling better when he was active. SPD do better with large muscle stimulation including weight blankets.

There is an internet forum (here) they discuss medications, traditional and alternative.

If your IRL group is not providing what you need come to us. Mine only tells us how to work the system. Not really an option for a 50ish yo man with a family is it :)

I would love to share the information I have learned, as I am sure the other Moms would, with you.

mstkn.identity
by on Jan. 5, 2013 at 7:10 PM
((Hugs)) I would go ahead and apply for SSI again. That can help open more doors for y'all.
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sherry132
by TBI Group Owner on Jan. 5, 2013 at 10:17 PM
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Hello Willysmama! It's great to have you in the group! I don't know much about a TBI that occurs in infancy, however, I do know how much each milestone met is a very exciting event. Please feel free to look around the group and read through previous post.

As I tell all our new members, this is a slow group intended to be here for those who need it when they need it. Generally, I respond within 24 hours, however, my son came for Christmas and I've been away from the group to spend time with him. 

Also remember, this is a support only group. It's not a group to bash, belittle, or hurt anyone for any reason. That type of behavior will not be tolerated at all. If it occurs to you at any time, please send me a message or send one to feralxat. We will immediately out kick anyone who behaves in a such a way.

I hope you find answers to your questions, support for when we don't have the answer, and the knowledge that in this group, you have friends who understand and who care. 

It's wonderful to hear of your sons accomplishments, and I look forward to more updates. Hugs and Welcome!

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