Nice to meet you

Caroline - posted on 07/06/2012

My daughter was born 9 weeks premmie, weighed 3 pounds & 11 ounces, stayed in hospital 4 weeks, she had many challenges. She was not able to walk un-assisted, she needed support to sit up, drooled constantly, developmentally delayed, frequent body tremors, some seizure like episodes, kind of in a daze all the time, clenched left hand, choking on her food, speach problems and she was taught sign language, left side weakness, muscle spasms etc. She was elevated on her toes when holding her to walk, she was splinted for a leg brace & they wanted to give her botox, but after researching botox and discovering how it’s made and there were no long term studies I decided against it. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.

We were attending all sorts of treatments and therapies which cost a lot. A friend told me about some special wellness supplements from a particular company, she started taking them in her yogurt, after one week she was up walking un-assisted, it made an immense difference to her brain function, memory, balance, mood & cognition in a short space of time. She began to thrive. I was elated!

I am so grateful to the person that told me about this incredible technology. She now has a life now ….. and so do I. It’s now over 14 yrs later and she continues to take these special nutrients, she has attended normal public schools, she is almost 16, in a few weeks she begins driving lessons and has just started an after school casual job in a fast paced food takeaway. Now she is taller than me.
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Venna - posted on 06/29/2011

Thank you so much for replying, I am so glad to have found you guys that is for sure. It is very interesting, yesterday my son had his ot and pt here at the house and well they are trying something new with him where they put this tape on him. It is for the compression but a constant type and it seems to be doing something last night was a very hard night for us because he doesn't seem to be able to calm down and stay that way so we will see, but he is very active now, it was great at the park and everything he played with other kids for the first time where normally he would just sit there and sort of cry and what not it was awesome to see him do that . Have you ever heard of the tape??? I guess it is like athletic tape and they put it all over the body in different places to help kids even themselves out something you may want to look into and try. Who knows, he is also being assessed again on Friday which is about 5 months early or more actually because we have just been working with early start tri counties for about 5 months and they said they would re evaluate him in a year or when he turned 2 but they want to do it a little early because he as come so far. When we started he wasn't even sitting up on his own so he has come a long way in the time that he has been working with them for sure.

Kathy - posted on 06/28/2011

It's so great someone has mentioned sensory regulation issues to you. From the day my son was born i struggled with them and was criticized constantly because I was "just doing things wrong or my son's wouldn't have any issues." He was almost six before the topic ever was mentioned by his OT and almost 7 before I even knew there was a whole field of study and treatment for all the issues we were struggling with. The crazier thing is a couple of my biggest critics were family members with a sensory child. Vision and the vestibular system are very connected. I don't know where you live but every state in the US has some form of early intervention program. i would look for an OT that specializes in sensory processing and NDT (nuero development therapy). My son has mild CP which affects all of his motor funtions. We are working with a vision therapist to get his eyes to track together. and correct amblyopia (one eye shuts down) caused by stabismus (lazy eye) that has been corrected. My son made a great leap in his ability to balnace and talk after starting Hippo (horse) when he was 3. And we just started doing a neuro movement therapy developed by Feldenkrais. We started with an Anat Baniel practitioner and are now working with a Feldenkrais practitioner who studied with Anat before she started her own brand of the method. My son's motor skills improved very noticeably within a few days of starting with the method. We still have a long way to go but once we got on the neurological approach i am seeing more progress and feel much more hopeful. There is a wealth of information on Facebook in the group SPD connect. Also try SPD.org. I just started reading a book called "the brain that rewires itself". It is an easy read and has a collection of short stories some of the research that has been done on developing the sensory system and the brain. As my son has gotten older it has been easier to find friends whose children has similar issues and finally feel a sense of support and not so alone. These kiddos are a lot of work. Not much time to socialize. look back a couple of weeks on the SPD connects FB page there is a group that specializes in "food chaining" It is a method to work your child into a more "normal diet" I hated being touched as a child too and now I have a child who needs me to touch me constantly. Today I would be diagnosed with something for sure. The biting can be an expression of stress or anxiety. Don't worry yourself over this stuff just hang in there an take the time to enjoy him and observe his strengths. Always start with what they can do and work in micro steps from where they are successful.