Friday, August 3, 2018

An Afternoon at a Cerebral Palsy Clinic


My mind is spinning. I couldn't sleep last night. There are so many things to think about and possible treatments to consider and appointments to schedule and feelings to process.

I took my 4-year-old son to the Cerebral Palsy Clinic at Boston Children's Hospital yesterday. We were originally going to have a full day there and see 4 doctors, but 2 of them had to reschedule for a later date, which I'm now glad of: Two doctors, plus the many therapists and other staff who popped in, was more than enough for 1 day.

Let me start by saying I'm very grateful for having access to this clinic and for the quality and comprehensiveness of the care that my son received there.

The afternoon unfolded like so...

Oliver and I started off seeing a rehabilitation doctor and a clinical fellow in rehabilitative medicine. The doctor had Oliver lie down on the bed, and she maneuvered his legs and feet into different positions and rattled off approximate angle measurements for the clinical fellow to write down. She had him sit up and asked him to reach up in different ways to touch his toy truck.

We discussed Botox injections to reduce spasticity in his left leg and arm, a new hand splint for his left wrist, and the possibility of a wheelchair to give him independence when he's too tired to walk.

She brought in an orthotics specialist who evaluated his ankle-foot orthoses, watched him walk with and without them, and suggested heel inserts for his shoes. He marveled at the AFOs' European design:

Then a speech and language pathologist came into the room. She asked me questions about Oliver's speech, his signs, and his ability to communicate using the Picture Exchange Communication System (PECS):

She asked him simple questions: 

"Where are your socks?" Oliver pointed to them.

"Who is your mommy?" Oliver smiled, looked at me, and pointed.

"Do you like school?" Oliver signed "yes."

"Do you like watching Daniel Tiger?" (We had already discussed his love of Daniel Tiger's Neighborhood.) Oliver signed "yes."

"Do you like going to outer space?" Oliver signed "yes."

We talked about how PECS was going for us at homewell overall, but I believe he could communicate more if he had a communication device. The speech and language pathologist, who specializes in augmentative and alternative communication (AAC) devices, agreed and gave me information about how to get Oliver evaluated for a suitable AAC device.

Next, Oliver and I saw a complex care pediatrician. We talked about treatments for drooling and the possibility of introducing appetite stimulants to help him gain weight.

She asked me about each body system in Oliver. Does he have any heart issues? Any gastrointestinal issues? Any difficulty breathing? We talked extensively about his medical past, present, and near future, and she recommended that I book appointments with a few more specialists.

She said she's available to help if I ever need different specialists to talk to each other about Oliver's care, or if I ever need help coordinating appointments with different specialists to happen on the same day to make life easier for us.

She examined Oliver.

At some point, an occupational therapist entered the room to try to take a look at Oliver's left hand; a physical therapist entered to discuss the possibility of an activity/feeding chair and wheelchair for home; and the orthotics specialist came in to see Oliver walk one more time with his AFOs on and heel inserts in his shoes.

So many people. So much information.

I'm overwhelmed. 

I'm grateful. 

I'm nervous about all the upcoming appointments and procedures and how they might affect my mental health.

I'm excited to see how the new treatments, devices, and equipment will help Oliver grow and develop.

I'm hopeful.

I'm exhausted.

I'm a mom of a child with cerebral palsy.


  1. Sounds like a lot for one day! As an adult with a life long disability I encourage you to look into ultra lightweight wheelchairs now. Brands like Tilite and Box make them for small kids ans they are designed to allow users to be active. You can even get a device calles Smart Drive that attaches to the wheelchair and helps with pushing. An ultra light wheelchair could give you son a great deal of freedom and does not mean he will stop walking-he'll just be able to devote more of his energy to actually doing what he wants to do instead of struggling with longer distances.

    1. Hi Jessica, thanks so much for your comment! I really appreciate hearing the perspective of an adult with a disability. To be honest, I had been struggling with the idea of getting my son a wheelchair, more from a practical perspective than anything else---e.g., wondering how I would manage lifting the wheelchair into and out of my car. It's really helpful to know that there are ultra lightweight options available!

    2. Michelle, many people who use ultralight wheelchairs drive ane lift the chairs in and out of their vehicles so it is definetely doable. The lightest options are under 20 pounds with everything on them. Rigid chairs are the lightest (most partially fold) but some folding chairs can also be found in the ultralight weight category. The wheels also pop on and off so you aren't lifting the entire wheelchair at one time. Best of luck to you and your son!

    3. Jessica, that's all helpful information to me. Thanks so much!

  2. Hi,
    I have Cerebral Palsy and I think AAC is a great idea for your son. I knew someone who had a speech difficulty because of CP and refused to use AAC which she later realized was a huge mistake for them because the lack of AAC lead people to believe she was severely cognitively disabled when she was actually of average to above average intelligence and the lack of AAC also caused her to get into huge fights with her friends because they misunderstood her. So PLEASE teach your son to use AAC and be proud of it.
    On a side note, I make films about adults with Cerebral Palsy in case you want to see how adults with CP live and function
    The films mention what CP feels like physically and some of the characters thoughts on therapies etc.

    1. Hi Margot, thanks so much for your comment! I'm actually really excited to get my son an AAC device. He's been doing well with PECS, but I believe he has the potential to communicate more than what PECS allows. I'm excited to see what else he has to say!

      That's wonderful that you make films about adults with CP! I will check them out!