Reddit reviews Cerebral Palsy: A Complete Guide for Caregiving (A Johns Hopkins Press Health Book)

Hi-40 year old w moderate ataxic quad cp here:

If you don't get all those terms 100% ok!!

Ataxic is a type of cp, quad just means all four limbs have some degree impairment, moderate is just how I feel my condition falls on the spectrum of cp. Terms are not important to me as someone who grew up w cp. Everyone also says something different in terms of what type I have, terms are always changing and mild/moderate/severe-that's becoming outdated and it's so subjective.. Now they're switching to gross motor function scale-I think 1 to 4. To all that as an adult w what I say is moderate cp-I say, whatever..

First: you need to be asking/advocating how to get started in early intervention. Your early intervention provider(s) will really help guide you through it!! Getting into early intervention is top priority!!!

Second: they are really starting to treat early childhood cp w stem cells! So I'd ask about that if it were my baby. A While ago about a trial in the states recruiting young kids w cp..) Trial was done at Duke; it's no longer active on NIH's website, so it's probably done or at least past the recruiting stage..

BUT: here's the email from last trial: [email protected]

Third: here are some resources that you may find helpful if you are just starting to feel your way through cp.

Below are some links that may be helpful. Know it will be OK, take each day or issue as it comes and your little guy will be amazing!!

*Cerebral Palsy: A Complete Guide for Caregiving (A Johns Hopkins Press Health Book)

https://www.amazon.com/Cerebral-Palsy-Complete-Caregiving-Hopkins/dp/1421422166/ref=sr_1_1?keywords=Cerebral+Palsy%3A+A+Complete+Guide+for+Caregiving+%28A+Johns+Hopkins+Press+Health+Book%29&qid=1566892940&s=gateway&sr=8-1

* Reaching for the Stars:

http://reachingforthestars.org/

*Karen Pape:

http://www.karenpapemd.com

*American Academy for Cerebral Palsy & Developmental Medicine (AACPDM)

http://www.aacpdm.org/

*Intensive Suit Therapy

https://oxfordrecoverycenter.com/suit-therapy/

*Wrightslaw Special education and advocacy

http://wrightslaw.com/

*Alternative Therapies for CP

http://cpcare.org/treatments/alternative/

(if you want to try stuff in addition. Some things you may feel might be worth looking into, others you may feel won't help or don't sound credible.

Don't get to over whelmed, you do not have to do everything all at once. The period after diagnosis is hard enough-if you feel it's best to stick to early intervention, that's enough. Never feel you have to have your kiddo in 20 different therapies or you're failing as a parent-not so!! Do whatever works for you!)

*Wonderful blog about growing up with/having cp; If you root around it covers a lot of topics:

A lot of experiences mirror my own, some contrast my experiences. Nonetheless, it gives lots of information/perspective.

https://toniasays.blogspot.com/2017/08/parenting-kids-with-disabilities-what.html