Parents share what would have been helpful to know before their child was diagnosed with Cerebral Palsy.
I wish that I got the diagnosis earlier. I wish that I had a doctor that would say, “This is what’s going on and how you feel is understandable.” Instead of being told that I am a first time mother and that I don’t know how to deal with things. I was like, “you mean that when a child that cries 24/7, it is acceptable?” I just felt like nobody was listening.
The important of an early diagnosis
By the time we finally started getting services at about the 15th month, we were a little bit adjusted. We could’ve really, really, really used services within that first year, but the problem is, if you don’t have a diagnosis, you can’t get services.
I just wish I was given more information on CP than what I did get. I wish the information was more readily available. That would have been so much easier. Someone was like, “Your kid has cerebral palsy. Now you can go home.” I believe that there should be some kind of manual. It gives you something to go home with. A lot of my research I had to do on my own. A lot of times, families don’t know where to go or where to start. There are websites–but what if you don’t have a computer at home? So always just give a parent something never leave them empty handed. Give them something tangible that they could hold on to and say, “Well ok, at least I have this information.”
Part of a group
I would really like to be part of a group just so I could throw out questions, frustrations, answers, just to have that mutual understanding of what life is like in a family that has cerebral palsy.
I felt like I was “Joe Handyman”
There were so many things that came up later down the road that I could have used in my house earlier on; like something to get my child in a sitting position. Do you know how many strollers I bought out of my pocket, trial and error? I’d go to the hardware store to try to adapt equipment that I had bought. It was ridiculous. It would have been helpful if I had gotten the answers I needed earlier on, gotten the equipment that I needed to make things easier for Madison and for myself, instead of me trying to problem solve so many things. I felt like I was “Joe Handyman”. I was always trying to build something to for her to sit in, something to hold her up at the table, something . . .
Parents share what would have been helpful from clinicians.
Tell us all the details. They tend not to do that, and I guess they do that with good intention because the doctors that have dealt with me have been really, really nice people. They were understanding. They explained things to me and brought it down in terms so that I could understand what was going on my son’s care. Yes, I appreciate that, but at the end of the day, I still feel that they shouldn’t hide the bad stuff from us. Tell us the good and then tell us the bad–the worst scenario. Don’t hide it.
Exam room tables
Redesign the exam tables we have to put our children on for their checkups. They are narrow and too flat. Stephanie has a phobia about being laid on her back. She worries about falling off. She has to use a pillow (she uses it to put it over her face when on the table). I understand that other kids with CP have the same fears. Because of this, she can’t relax when she is on one of these exam tables. The doctors can’t get accurate measurements of what her range of motion is because she gets tight from the stress caused by these tables.
Advice for clinicians
Just be kind to the parents. You don’t know what they are really going through at home. The clinicians get a glimpse of your life for an hour or something like that. These parents live day in and day out with all kind of issues; at home, at school, at the hospital. Be kind. Be kind to them, and really care about what they have to say. And don’t be so judgmental. I work with teachers that will say, you know, “That mother has no follow through when they go home,” and I’m like, “Well, what do you think? She works all day and doesn’t see what you’re doing in the classroom. Have you gone to her house? Have you talked to her? Do you really understand why?” Someone said to me, “You would think that that mother would buy pants that fit him.” This little boy was severely autistic and going to the store with this child must have been a nightmare…It’s not as easy for you as it is for them. Clinicians need to look at the big picture: what is that family really going through?