Reddit reviews Cerebral Palsy: A Complete Guide for Caregiving (A Johns Hopkins Press Health Book)
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Used Book in Good Condition
Hi welcome-
I have cp and am almost 40. I have ataxic cp in all 4 limbs, 80% of those with cp have spastic. Ataxic and Spastic are types of cp. All my life, I classified my cp as moderate, but now, they're getting away from saying mild/moderate/severe and using a scale called Gross Motor Function Classification System (GMFCS). I would be level IV
If types and levels mean nothing to you or are confusing-don't worry that makes two of us! All my life various professionals have thrown around different labels or sub categories about me. While I found most or all of those therapists great and helpful, my type of cp-I've always been who cares.
I have a bachelors degree, am a publisher/author, and can am able to live alone. I walk short distances but mostly use a Manuel wheel chair. Since graduating college, I've worked sporadically but it's been a struggle to find and keep a job.
YES-there is absolutely hope for improvement! Your little girl is only 5mos. That is really too early to know how she'll do yet. It's certainly too early to 'close any doors.' Or say, she'll never.. All you know is if she's diagnosed w cp, her path will probably look a little different. It's ok, not to know 'what to do with that' and feel all sorts of ways, that's normal!
Most of us hit many childhood milestones, it just takes us longer. It is not too early to start 'working.' By that I mean your first goal should be to get her into early intervention for babies birth to three. Talk to your doctor about this-ask what is our quickest path into Early Intervention? What do I need to do to start? Contacting Easter Seals or your states Division of Developmental Disabilities (DDD) would also give you info on how to access Early Intervention services in your area.
Early intervention so helped me improve!! The other thing that really helped me sit, walk, talk etc was starting therapeutic horseback riding at age three! And, I loved it!
You got this! It will be OK! Take each day, year, challenge as it comes and know your little girl will amaze you in ways that you cannot even imagine.
' Below are all resources that I think are great to 'sorta get the lay of the land of cp..'
(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!)
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
Best to you and your family!
Hi
I am in my 30's, grew up in the Philly area and have Moderate Ataxic cp. I have a bachelors, lived on my own at 18 and currently am an author and a consultant.
Early intervention is a great start! I also did therapeutic riding from 3 to 11, huge help! Riding really helped me reach all my early childhood milestones!! I also loved the water-swimming was really great for me
If you're going to CHOP, you may also want to contact AI DuPont. They have a huge CP program that's world renowned. When I was a baby, we started at CHOP, but by three, my mom said I am nevrer going there again with her. (Don't remember any of this) Our family really liked DuPont a lot more in terms of care and they made us feel like I was a child, not just a number for their research. In terms of distance, DuPont was 20 minutes farther but mom said it was an easier drive and parking was no issue at DuPont. So, despite it was farther, it was easier..
Now this was almost 40 years ago, CHOP, I am sure has changed. When I was in CHOP for three days at six months, they still had wards!!! Stuff has changed. I know DuPont has changed, but the same people still run the CP program, whom I love.
You may decide to stick with CHOP, everyone's different. But my parents doctor shopping, that -goes on the long list of things they did right!!
Just know it'll be ok! Most adults w cp wouldn't change it. Realize milestones will come, they may bee delayed but they're come!! Try to take the que from her as to if she wants to do things or not. For example, I went to 'regular' school from 2nd on. After the first year, I never wanted to do field day. I was, and still am, happy my parents let me stay home those days!!! Some adults with CP would disagree and say they're happy their parents made them do every thing just like a typical kid. This really has nothing to do with cp and how you feel one should parent. I think every child is different and should be listened to, not forced to do arbitrary things. That's just an example. Field day could be one of the highlights of your child's year!
You probably want your child to walk. That's Natural. I hope she does. Just know from an adults point of view, walking isn't important. Stress independence, and whatever mode of mobility that will facilitate that!!
PA is ranked top in schools and special ed. I have no idea what your daughter will need. Just know that everyone is different, don't rule anything out! Inclusion is great. But there are kids who do better in special ed settings, every student has their own best plan!! Just keep LRE in mind, students should always be placed in the least restrictive program that they would do well in. The reason why that's vague-is every student is so so so different in what's best for them! When I was preparing to transition to a therapy based pre-school program the district wanted me to go to a program for kids with a higher degree of physical disabilities. Mom fought to get me into a program that was designed for kids with communication delays, which was the right thing. Looking back, I am both glad that I started out in SPED, I am also glad in 4th grade that I started transitioning to REGED. Like many kids, middle school was really hard for me but high school got way better.
So School: take it as it comes, don't rule any option out, realize if something isn't working it can always be changed
The only thing my parents ever did-that I hated was force me to go to sleep away camp for kids with disabilities, awful. They did this twice, first when I was nine. I so wasn't ready, had never even slept at a friend's house yet. I only lasted three days. It was traumatic. And then, when I was almost 14, they made me go back. Everyone there treated me like I was four. It was traumatic. Now, other kids liked it-to me it felt like prison, just not for me. Being in the hospital was more fun.
My mom just always wanted me to make friends with others who were disabled and since I attended regular classes from sixth grade on, she always made special attempts, I always disliked this.. A friend is a friend-disability has zero to do with it!!
As far surgeries-buyer beware. I've had three as a child, all ortho/cp related. (at ages 11, 12 and 15) They really help some kids, but just expect if you do a surgery recovery will be harder/longer then you expect. And with CP surgery might set off other issues. I am not anti cp surgery for kids, just buyer beware
As far as government stuff: The ADA is a federal law that applies to everything, this basically makes businesses more accessible and ensures the same access to public accommodations. The two benefits that families may get is SSI and Medicaid. SSI is a monthly check to help with the child's expenses. Medicaid is government health insurance. Both these are means tested, meaning the parent(s) need to make under a certain amount to qualify. I didn't qualify for either until 18. As a teen I wish I had medicaid, they would have covered more then whatever private insurance I had through my dad's employer.
I want to say it'll be ok, you are awesome for trying to find out as much as you can! Take it as it comes and know every experience is unique!!
I will post some good links below-best to you and your family!
Cerebral Palsy: A Complete Guide for Caregiving (A Johns Hopkins Press Health Book)
https://www.amazon.com/Cerebral-Palsy-Complete-Caregiving-Hopkins/dp/0801883555/ref=mt_paperback?_encoding=UTF8&me=
(Good intro to cp, cause right after diagonosis-it can be a lot of new info or terms)
Ceebral Palsy Center: Nemours/Alfred I. duPont Hospital for Children
https://www.nemours.org/service/medical/cerebral-palsy-center.html
(Even if you don't go to DuPont their page has lots of helpful Youtube videos on cp)
http://reachingforthestars.org/
Karen Pape
http://www.karenpapemd.com/ (Dr. Pape has kind of different ideas than Freeman Miller, who was my doctor, nicest man ever, but never hurts to consider different schools of thought)
American Academy for Cerebral Palsy & Developmental Medicine (AACPDM)
http://www.aacpdm.org/
Alternative Therapies for CP
http://cpcare.org/treatments/alternative/
(Never to replace your docs or the tradition 3 therapies of OT/PT/Speech, but 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. Do whatever works for you! And, never feel you have to have your kiddio in 20 different therapies or you're failing as a parent-not so!!)
Intensive Suit Therapy
https://oxfordrecoverycenter.com/suit-therapy/
Thorncroft Equestrian Center
http://thorncroft.org/
(again, if I had a toddler and was going to chose one 'alternative' therapy to add in, it would be ridding, so helped me)
Wrightslaw Special Education and Advocacy
http://wrightslaw.com/
(Lots of good info on how to navigate the school system and get what she's federally entitled to under IDEA, that's the federal law that grants us the right to equal access to a public education, even if she's never in SPED classes)