Cerebral Palsy Awareness: Mom's Perspective

For today’s post, I answered my own questions on being the mother of a child young adult who has Cerebral Palsy.

What were my thoughts when we first made the decision to adopt a child who had Cerebral Palsy?  

When we were ready to adopt our second child, we knew we would adopt a child who had special needs.  We initially thought we would adopt a child who was deaf or hard of hearing since that is my specialty area in special education. We thought that would be a good match for us....God had other plans for us.

When we identified S as the child we would adopt, we immediately started learning about Cerebral Palsy. We didn't know much about it. On our initial adoption paperwork we filled out, we checked "possibly" for Cerebral Palsy. We knew it was what we were supposed to do. Since Cerebral Palsy impacts each child differently, I will never profess to be a subject matter expert on Cerebral Palsy; however, my husband and I are subject matter experts on the impact it has on S and his life.

What were my preconceived notions about what life would be like?  

I envisioned us doing many of the same things we did with J:  going to the playground, continuing with activities that we were already doing, teaching S how to do the same things other kids were doing.

What things didn’t I take into account?

*I didn't realize how much of our time would be spent at appointments:  doctor and therapy.  
*I didn't realize the battle we would have with insurance companies to get durable medical equipment. [I don't think asking for a basket for my son's walker so he can carry things would be considered a "luxury" item.]

*I didn't realize how far we would travel for some of these appointments.  When we lived in Alabama, S saw doctors in Mississippi, Florida, and South Carolina.  One doctor came from Louisiana.

*When we lived in California, we drove 2.5 hours up to Sacramento to the Shriner's Hospital for Orthopedic care.

*Appointments became easier when we moved to Virginia.  All of his specialists are located at the Naval Hospital which is about 45 minutes from our house.

*I didn’t realize how much harder he would have to work to accomplish the same tasks as other people (daily living skills, school work, talking).

*I didn't know how many people would approach me in various places with ideas on how to "fix" my son.

*I didn't realize how many stereotypes he would have to battle to prove his ability.

What things surprised me about S and his CP?

I was and still continue to be amazed by his determination.  Don't tell him he can't do something!

Were there differences in how I parented S and J?

This question can be answered yes and no.  The expectations for both of them were the same. The differences weren’t related to S’s CP; they were related to his personality.  They are both strong willed children, but J knew when it was time to stop doing something.  S would try to see how far he could take something and hope that there wouldn’t be any repercussions.  He was very familiar with the time out stool.  

Do I think it will be different parenting J as he approaches adulthood than it was parenting S?  

Yes.

How?

In parenting S into adulthood, there have been so many deliberate choices and plans that have had to be made.  J will need to make decisions and plans also; however, they will happen more automatically in life rather than deliberately.

With S, there has been definite instruction on independence skills.  We have had to think a great deal about how he can best do something and utilize different tools to get things done.  J will just do the things and has been able to pick these skills up through modeling.  

As S approached his senior year and turning 18, he spent a lot of time in denial.  J isn't there, but I don't think he will be in such denial.  J pegged it correctly for S, "It is scary."  Life is going to be scarier for S than it will be for J.  S knows that he faces challenges in life that others don’t have to face.

Any words of wisdom for parents of young children who have CP?
*Take care of yourself.

*Have a sense of humor. Laughter is the best medicine. Sometimes you just need to laugh.

*Enjoy their childhood!  It will go by quickly. You will be busy dealing with so many other things - medical, insurance, education, therapists; it can be easy to forget to enjoy time with your child.  
*Let your child do whatever he/she is capable of even if it takes a little longer.  

*Find a good team you can work with.  You are going to spend a lot of time with doctors, therapists, and teachers. You want to spend time with people you like and respect.

*Stand up for your child.  You know him/her best.

*Keep good paper trails!
*Be proactive rather than reactive. We used to always tell S's teachers, "Tell us if you think there is a potential problem rather than waiting until it is a problem." We were in constant communication with school staff making sure everything was okay.
*Determine which battles are important ones to fight.
*Don't let other people bring you down.  They have no idea what you are going through.

Anything I wish we had done differently?
Relax and don't stress so much!  It all turned out okay.  I wish I could go back and tell myself that.

How would our life have been different if S didn’t have CP?  

I don't even know how to answer that question.  There are things that would have been easier for our family to do.  Any time we have planned a trip, we have to look at accessibility and discuss the feasibility of S getting around without missing out on things.  Because of that, we are very close and spend a lot of time talking about things.  J has become very aware of accessibility issues and whether or not someone is able to participate in an activity.  

On a more humorous note, we wouldn't have to start getting ready so early to go someplace. When we figure departure times, we have what we refer to as the "S" factor. To be honest, more of the time spent getting him out the door is related to his ADD; however, that combined with his CP is an interesting combination.

What opportunities would we have missed out on?

*We have met some amazing people on our journey - therapists, doctors, teachers, other families, service providers, people from service organizations (Shriner's Hospital), staff at camps.

*Because of S's CP, we have been campers at Victory Junction Gang Camp multiple times - family camp, sibling camp for J, and physical disabilities week for S.

*S has had the opportunity to participate in adaptive snow skiing which has been great for him and educational for the rest of us.  We have seen people of all abilities and ages come tearing down the mountain.

*S has participated in therapeutic horseback riding for a number of years.  We have had the opportunity to meet so many wonderful, caring people who have volunteered there and who work there.  They are all very interested in his future and his forward path.

How do I think S’s CP has shaped our family?

Our family has an interesting dynamic.  J went from being an only child for two years to becoming the youngest child. He exhibits many traits of the oldest child.  Is that because we adopted out of birth order or is it because his brother has a disability and J has taken on extra responsibilities?  

S having CP has made our family very aware of disability related issues.  We are very open in discussing these situations and talking about the rights of all people.

Our family is very close, and I think this is because of everything we have to do on a day to day basis.  It is our normal.  It is a family effort to help S become independent.  We have family discussions about what we can/can't do to help him or what is/isn't helpful to him.

How do I think S’s CP has shaped him?

*S's CP doesn't define who he is but it has shaped him.  He is very strong willed which is helpful for his self advocacy.  When he was young, we alway said if we could harness his stubbornness to use it in a positive manner there wouldn't be anything that he couldn't do.

*S doesn't view himself as disabled. He knows he has to do things differently than others, but it is his normal. The problem we have now is when he is dealing with different organizations trying to figure out where he needs assistance or accommodations; he tells them he doesn't need accommodations. Our house is set up for him, so he doesn't view it as anything extraordinary. We want him to always think of himself as having the ability to do whatever he chooses. He just needs to know what tools he needs to be successful and to ask for those tools.

*S has a deep faith, and he knows that God created him this way.  We talk about how God intends to use him throughout his life.  He has impacted people since he was young with his drive, determination, personality, and perseverance.  When we lived in Alabama, elderly people would come up to us at the hospital and talk about how seeing him helped them change their attitude for the day. One person told me, "I woke up this morning and felt sorry for myself. Then I saw your son come tearing through the doors, and I decided I needed to stop."

How do I think S’s CP has shaped me?

S having CP has helped deepen my faith.  It started from the moment we identified him as our son.  I knew this was what God intended for our family.  I have spent a lot of time in prayer asking for guidance and patience.

I have always been a person who wants what is right for people, yet I don't like confrontation. That being said, I will fight tooth and nail to get things for my son that he needs or is entitled to for his education or medical care.  There is a whole different side of me that has been seen at IEP meetings.  I am aware that I can do that, so my husband and I have a system.  If he gets a leg squeeze from me, he knows he should speak up because I am about to say things that might will not be very nice.

There you have it.  A little view of how my son’s Cerebral Palsy has impacted me and those around me.  I will be hanging out on the couch with chocolate reflecting back on how far my son has come.