Cerebral Palsy

Hi Shawna. Welcome to Share. I'm so sorry to hear of your son's diagnosis of cerebral palsey. If you don't mind me asking, do you know how severe your son's is? My daughter also has a diagnosis of CP, but it's very mild, affecting only her legs/ankles.

I know that there are lots of resources available after you've been given a diagnosis of CP. With my daughter, we became more involved in an early intervention program. From there, we got lots of referals to specialists, etc. If you haven't already, I would strongly encourage you to enroll your son in an EI program.

Good luck to you and please keep us posted on your son's progress.

Take care, Kayla

Hello Kayla, Yes the doctor said it is a moderate level, It is affecting his hands and feet. He also cannot talk at all. I have been seeing early intervention since oct 2008 and they come to my house and work with him. He has made progress however, I dont feel like there is much out there to help. We are having a hard time with co-pays because we go to doctor's so much. My son also has a stigmatism in both eyes so he needs glasses, we did tubes in the ears in feb due to ear infections and he was making his ears bleed because he was picking at them. It has been a rough road traveled.

Hi Shawna. My daughter Shannon also has cerebral palsy; hers is moderate, affecting the left side of her body. She is now 11 yrs old. It is not an easy road to travel, but it is very rewarding. Every little thing seems to be huge... Where do you live? Are you involved with your states Division of Developmental Disabilities? There are many programs that are for children who carry this type of diagnosis, including those that help ease the financial burden even if the family is in the "over income" bracket. My home email is- thegoodwin5@msn.com- Please email me if there is anything I can do to help. I have traveled this road for 11 years and would love to be of assistance to you.

Cathy

Hi Shawna,

I know the diagnosis of CP can be a bitter pill to swallow. My daughter didn't say A WORD (barely even cried) until she was well over 2 years old. When deafness was suspected, we started using sign language, which worked wonderfully, even though Elena didn't separate her fingers well (she still has some problems with this). She started talking at 2 1/2, and now is above the language expectations for normal kids her age.
We've had other problems, including vision issues, and still struggle with mobility.
No one can tell you what your child will be like in the future...but there are lots of parents out there that can feel your pain and know how to listen. Visit Share...it really helps.

Good luck. This is a link to my daughter's blog, if you'd like to see where we are. http://elenadoodle.blogspot.com

Amy

Thank you Amy, this brings a smile to my face knowing that your daughter is now talking and seems like we have a lot in common. I am hoping and praying he will be able to walk and talk because that is my dream!

Shawna~

I'm glad that there were others to offer support from their own experiences. I don't have a child with CP, but work with children with CP of different levels at school, and wanted to let you know how blessed I am to have that opportunity!! I'm sure that your son is able to get his point across and in time will share his thoughts and love through words as well!!

Tracy

Thank you tracy for the support. I am hoping my son will be able to walk and talk soon, its a mothers dream to see and hear there child with their firsts. Again thank you for the support.!

Shawna~
I just wanted to say I too have a child with CP. Nia has mild spastic diplegia. She is left side effected. We got her diagnosis just before her second birthday. She didn't walk until she was two and a half. It has been a hard road to find her help. I still beat myself up over her struggles. I always feel like I am missing what I should be doing to help her. As for the financials, it is hard. There are different resources out there for you. When we lived in IL it was agency for specialized care for kids. They paid everything my insurance didn't. In FL we are on a waiting list for Medicaid for the disabled but it's been two years. We found Shriner's hospital here. They do ortho care and her bracing for free. We have been given 6 months of free therapy through FL Elks Lodge. These places have been heaven sent. There is help you just have too search hard to find it.
Best Wishes.

Welcome to Share, Shawna.

I am so sorry to hear about your little boys recent diagnosis and how it has thrown you into a tailspin trying to research, trying to grieve for his future as you envisioned, and trying to get him the help that he needs to make progress.

My child does not have CP, however was afflicted by a virus which has many of the same characteristics as CP. The one piece of advice that I can give you is to be strong, love him unconditionally, and most importantly, do NOT loose faith in what he will be able to accomplish. Doctors do not have a crystal ball and there are miracles that exist. I know that you need to be realistic and brace yourself for the worst case scenarios, but with the right education, assistance, and therapies your little bo may surprise those doctors.

Keep your chin up honey and give that boy a huge hug for me.

Love, Kelly

I'm checking in there Shawna in case you come back to this message board. My 13 year old daughter has CP and is post EA/TEF. We found the early on programs quite helpful. Getting the equipment one requires without too much shaming or hassle can also be a great key to happiness. My daughter used sign language from the early on program until she was five. Then she did begin to speak and now talks my ear off. Her friends have varying degrees of speech but fairly high degrees of literacy, comprehension, and modes of communication. Augmentative Communication Boards can be a great source of play and a mode for taking charge of an independent life as one gets older. HM School for Children with CP in Philadelphia has a one-on-one staff and great resources. I've just visited there as a mom and saw many happy families, some from out of state, planning and playing -- wheelchair dances and things like that. I personally have been looking for a good summer camp in the hopes of helping my daughter find the comfort among friends (again) that she definitely did find during those years of Early On program. With CP you just can't tell where a child's limits will be. Sometimes one can use a walker and then growth interferes. It's highly variant. My daughter would throw herself out of her wheelchair and crawl across a playground cause she wanted to be so involved. I learned to laugh with her in her determination to "get a life" of her own making. But really, a power wheelchair helps get her there or we might end up really isolated because all the other modes of ambulation can be too slow and pretty dangerous. Just depends.

Thank you Sharon. Things seem to be going ok. We did a brain MRI 2 weeks ago and they have confirmed the CP since his brain did not full deveolp. I now have 3 therapists coming out 3x a week, and we are trying to find a good program that he can be in for daycare. I am hoping he will walk and talk soon. we are trying sign language and i hope that works!

Oh Shawna, I am so sorry for the confirmation of CP you got a couple of weeks back. I am sure that the diagnosis is bittersweet. On one hand you're probably glad that you have answers, yet on the other hand it just brings your fears to the forefront. We have 7 therapies a week coming in to see Katie, I can not imagine an additional 2.... I'm not sure how you do it. Don't you feel like your front door is forever revolving?!! I hope that your son gets the hang of the sign language and steadily you see some improvement. Best of luck and please keep us posted!

Love, Kelly

Thank you for the encouragement. Yes my door is non stop but i figure it helps my son. I hope the sign language does help. I am starting to find more resources out there =)

Shawna~
Hang in there!! With time juggling the extra needs of your child will become second nature. I am thankful we are getting to a place where we are requiring a little less help than we did early on in Nia's life. Keep us posted on how your son is doing.
Desiree

Thank you all for the encouragement. I am doing everything i can for christopher. I also just found out we are pregnant again i am 4 weeks and i am scared that something will go wrong.. please help or give advise!!

Well congrats!!! How wonderful! Well I had another child two years after Nia's horrible birth so I know how scary. Well all I can say is listen to your body and speak be persistent with the doctor if you have concerns.
Desiree

Thank you, I have been speaking loud this time, the doctor does want to do numerous tests this time. I am nervous about what others will think because i dont want them thinking christopher is on hold now or anything. How do i deal with others?

sorry to hear about your baby u have to be strong not only for u but for your two babies the unborn and your 23 month old they need you to be well mentally ,emotionally and physically.
     I have a 10 month old with a grade 3 bleed and a VP shunt i have a fear of finding out that my daughter might have C.P sometimes i catch myself on websites reading about the symptoms of C.P and my husband gets upset with me, i guess its a natural thing for a mom to have many different worries when having a baby with medical conditions.. don't worry you came this far you will do well good luck and don't stress yourself you have a baby inside

Shawna~
What others think is going to be the least of your worries in pregnancy. I am sure many people had things to say when I got pregnant with my little guy. I never pushed Nia aside because I had another child. To this day each of my three kids is equally demanding in their own ways and somehow I juggle it. You will too. I wish you the best.

Jennifer~
I did the same thing when Nia was little. I actually brought up the conversation first with the therapist about CP. Nia did eventually get a CP diagnosis just before her second birthday. It was a hard pill to swallow because it meant she would never grow to be a typical child. She is five now and doing great. We are lucky her CP is mild. She does almost everything that other kids do and with age she is closing the gap more and more. I can't tell you not to worry because you will anyways. Just know that no matter what happens you will handle it. There is plenty of support out there both financially and emotionally. Best Wishes.

Thank you all for the support. You have no idea how much it means to have other people who know what I am going through and that are there no mat ter what. So again thank you!

Desiree...

its wonderful to hear that Nia is doing so well after having a ruff start shes a trooper , i am so happy for you both thanks for replying to me i know its not easy... its just so hard to have to wait around for you babys diagnosis the anticipation is over whelming good luck!!