My youngest grandson, 10 month old PResley, was diagnosed with cerebral palsy recently. He’s also deaf. He was born about 8 weeks pre-mature and is CMV positive (which most likely caused the CP and his deafness). He weights just over 15 lbs and is not crawling or sitting up (although he’s close on both).
As you might imagine, this has been difficult. I’ve no experience with CP. The reading I’ve done is terrifying but also uncertain. We don’t yet know the severity of the CP and we don’t know if there are cognitive delays as well.
Anyone dealt with a CP diagnosis in an infant? Any advice?
take time now to “grieve” the process. You have a family member who was born with issues. It’s OK for you to be mad/sad/in denial etc etc about this. You will be much more effective in the long run if you take time up front to do some grieving and put that “phase” behind you.
you don’t know what you don’t know (yet). Give that time to play out and get a full “diagnosis”. Right after you do, understand it, accept it, but don’t let it limit your thinking.
having finished 1&2 be relentlessly positive. you are not the direct parent. You can come and go from the situation. It gives you a unique opportunity to help and to provide re-newed energy and positive vibes to the process.
I don’t know what CMV stands for. I get deafness. CP is a very broad range of something.
my son is on the autism spectrum (very broad range). We followed much of the advice above and as a result we committed early on (diagnosed at 3) to a hell of a lot of work in a hell of a lot of areas. Today he’s an RN helping to care for and save lives daily. His efforts (and ours) growing up put him in a position where today, if you met him, you may walk away from a 3 hour discussion feeling something was “odd” but you would not label it when you were done. But those same things you would notice make him one of the most compassionate and caring RN’s you could ever have treat you. In addition he has amazing ability to spot things like irregular heartbeats etc that others miss.
Growing up one of the things we had him participate in regularly was a Tai Kwon Do program run in our area by a great young man with CP who was a 4th degree blackbelt and taught exclusively young people with physical or cognitive issues. My son earned a black belt in 9 years of working with this guy who pushed him where he found him and never let him use his “issue” as an excuse.
sometimes….. many times….. these are the people who change the world (or at least their little corner of it).
I’m sure your grandson is a beautiful and precious little boy. I hope you have many years of happiness participating in his life.
So sorry to hear this. A good friend has grown up with his sister having CP (they are both now in their 30s). Some organizations he recommends:
United Cerebral Palsy
Cerebral Palsy Family Network
March of Dimes
Having a grandniece with an incurable disease, what I’ve learned from my nephew and his wife: Don’t be shy about asking these organizations your questions and concerns. Be a fierce advocate.
Sorry to hear this, but it is definitely not the end of the world. You have some really great advice above, so I won’t repeat any of that, just reiterate that it is extremely solid advice from everyone.
My advice: search for an adaptive sports program in your area, something close enough that you can volunteer. Be open to any participation they put you in, but you will undoubtedly come across multiple people with CP. Talk to them, understand that there is a wide ‘spectrum’ (for lack of a better term) of the effects of CP, and enjoy learning how to help them recreate. When your grandson gets older, helping him to enjoy sporta and recreation (and really, life itself) will be old hat for you.
I volunteered with an adaptive organization for a decade, got to do a lot with people with all kinds of disabilities. It’s a whole other world, but fun as hell! One of the kids with CP that I helped teach how to ski is now doing a podcast; if you’re interested, I’ll find out more about it (I don’t do podcasts, but honey does).
Some excellent advice in the few posts already. Nothing else to add right now except a lot of thoughts and internet hugs to you and the family.
I’ll reach out through my channels to see if there’s anything else I can add. And please don’t hesitate to keep us updated even if just to vent or voice your inner thoughts.
My youngest son became great friends with a boy with CP in 3rd grade. Boy was wheelchair bound mostly and could walk with canes
huge sports fan. Huge wanting to be a part of something guy
in third grade was also when my son took up organized sports. Mostly soccer basketball and running.
This guy would come to all my son’s soccer and basketball games and “assistant coach” with me.
We would take him in a chair on all our 5ks etc. as he got older he was able to get out of chair and finish last part of race on his own ( eventually last 100-200 m)
because my son was “ good” at theses things and a bit of the leader of teams his friend was always right in the middle of the action and other kids learned to include this kid as appropriate into practices etc. he was definitely one of the guys ( and a pretty stern assistant coach)
Unfortunately he passed away when they were in 7th grade (8 years ago) which was a tough life experience for these boys to go through as well.
But they all kept him in spirit with their teams throughout high school ( name written on shoes etc)
as I alluded to above, people with “issues” who are brought up and into life have the ability to change the world and/or their little corner of it. My son is now 21 and runs in college. Every pair of athletic shoes he’s ever had from 7th grade on including the ones he will be trying to lay down a 1:54 indoor 800 in this winter get “Fly for Matthew” written on them first thing out of the box
Presley had cochlear implant surgery on Monday at Children’s Hospital. It went great. It was long …. 4 1/2 hours. No complications. Monday night was rough but Tuesday was much better. He’s such a happy kid. Activation day is set for Monday, July 6. We are excited to see him hear the world for the first time.
I may not get to it on the 6th, but I definitely want to read about this event. Gonna be a really cool day for all of you. Jump on ST as soon as you dry your eyes, after the celebration.
Activation Day was great. There were no YouTube moments (which the audiologist said are rare). The audiologist attached the magnet devices (speakers, more or less) to the implants on the side of Presley’s head and turned them on. He smiled, cocked his head like a dog listening to a whistle and could obviously hear.
The devices are turned on at a low volume (it’s not volume exactly but the word is close enough). He reacted to voices, music, a xylophone, a tiny piano - he loved banging on the xylophone. The first sound he heard was his mother’s (my daughter) voice. Then his dad. Then, Ray LaMontagne’s “You are the Best Thing.” After which, we all got to talk to him.
It was sweet. Tears were shed.
Over the next few weeks, the volume will be increased to full volume. The audiologist said he should have close to “normal” hearing levels. She said he essentially hears what we hear but sound has a digital or “robotic” quality to it.
We took video. I’ll post something once I get the thumbs up from my kid. The video of him hearing music for the first time was sweet.
