World Cerebral Palsy Day: Those who go before us

As a parent of a child with Cerebral Palsy it can sometimes feel daunting – the letters, meetings, research, appointments, arrangements and conversations that need to take place so Brett has the same opportunities available to him as his brothers and peers. From big things like integrating into a classroom and making sure there is playground equipment he can use to little things like keeping up on the latest studies and research on CP – the list never shortens. We take time to celebrate every little victory, but then use that energy to move on to the next challenge.

When I feel exhausted or defeated, as I sometimes do, I stop and remember that I’m picking up where others left off. It’s my turn to carry the torch for a while because there will be another child right behind Brett and I want their lives to be better and easier.

It still shocks me to think that it was within my lifetime that people with Cerebral Palsy were institutionalized and marginalized (and sometimes still are). I think of what it must have taken to change that. When I was in school the children with special needs were seen in passing in the halls, but had their own classrooms. Someone looked up and out and said ‘I need a mountain moved’ – and I am so grateful – they have moved – even if just an inch.

On this day of spreading CP awareness I want to introduce you to some of the mountain movers I know:

I am privileged to know a young woman named Hannah who we met where Brett gets his therapy at Easter Seals. Much like him she drives a power wheelchair and uses a communication device. She is a college graduate with an enviable job and a strong faith. She lives independently in an apartment with help from an aide. She went parasailing on a vacation recently. She has been a friend to me and my children and a source of motivation to us all. Probably without knowing it she offers me a vision of what life can be like for Brett. She constantly has me rearranging my view, seeing the world as a better place for Brett each time.

I know a woman, Amy, who works where Brett gets his therapy. She was the first adult with CP that I got to know after Brett’s diagnosis. She probably doesn’t know this, but she made it all seem so less scary. We are there on different days so we don’t see her too often, but when we do Brett shrieks with delight. If he hears her voice down the hall he will fuss until he sees her. He even cried once recently when I said he had to say good-bye to her because it was time for therapy. She offers her time to camps and her alma maters to talk about CP and spread awareness. She says things to Brett like “I know buddy some of those things are a little harder for us aren’t they?” People are drawn to her – she is beautiful inside and out. But Brett is drawn to her on a whole other level – she gets him. I appreciate the positive messages and awareness she is spreading about CP.

I met another mom, Susie, earlier this year. Her daughter has cerebral palsy too and many medical issues – she has been integrated in a regular classroom since kindergarten and is now taking college courses. The road was difficult and exhausting, but they carved out a path where I can start with Brett that’s a little less bumpy and she has come along side us on the journey and is walking with us and gives me courage and wisdom.

I know a couple, Katrina and Joel, with triplets plus one. Four beautiful children and three of them have cerebral palsy. They are a joy to spend time with, a blessing in our lives. They are sending their children to conductive education. A rehabilitation through learning program that pushes children to reach their potential for independence. It is not close to their home but they have rearranged their lives to offer their children an alternative opportunity. Both the parents and their children are a shining example to me of Philippians 4:13 being lived out daily.

“We can do all things through Christ who gives me strength.”

I met a mom, Kris, whose son with cerebral palsy is just a little older than Brett. They live just across town from us and have three boys – including twins – so she gets it. She always seems to be a few steps ahead of me in advocacy, research and equipment. In addition to being a great friend she is a great resource and a woman of exceptional strength and courage. Last month she took her son to St. Louis for a surgery that I know was scary, but holds promise for her son to have a life with less pain and more possibility. I am watching closely as his amazing story continues to unfold. It is opening my eyes to the possibility of a different future for Brett. And, if nothing else, it fills me with immense hope.

These are just some of the stories. These are just the ones that have intersected our lives lately. But I know that every possibility that is out there for Brett did not come without a parent, teacher, therapist or other loved one behind them fighting the good fight.

To all of them on World Cerebral Palsy Day I offer my humble and sincere thanks for going before us and coming alongside us in the world and making it a better place than it once was. I am grateful for the examples of courage and strength giving me the motivation so I too can go charging forward and, God willing, make life a little easier for someone else.

An IEP, a prayer and a mountain moved

                                            Brett's last day of preschool

When Brett was 3 he was evaluated by the school district for his preschool placement. After more than an hour in a room full of strangers from therapists to psychologists all making requests of him I didn’t feel like they saw Brett’s true abilities. Before we even left the room they suggested Brett be placed in a multi-needs classroom (a separate class for children with multiple issues and a variety of diagnosis). Mama bear took over - I wasn’t happy. Brett will be integrated in a regular preschool class I told them. They recommended we visit the multi-needs classroom before making a decision.
I told Tate we were in for a fight.

But then we visited the classroom and despite all my preconceived ideas and principles we were so impressed and Tate and I both left there convinced it was the right place for Brett and we still believe that two years later.

But last month a few week’s before Brett’s scheduled IEP meeting (an Individual Education Plan that creates goals and details of needs) a strange thing happened. I told Tate I felt God kept putting the idea of integration in my path. We had planned to just move along happy with multi-needs, but everywhere I turned I was reading about integration and meeting new people who were telling me their experiences, it just kept coming. I told Tate I just can’t ignore it so I’m going to explore it. I met with a mom whose daughter, with Cerebral Palsy similar to Brett’s, had been integrated from kindergarten all through high school. She was amazing. She had a whole box of resources and coached me on some things to say and not to say in an IEP. More than anything, though, she listened and encouraged. I felt so grateful for all those who have gone before us blazing a path not traveled before. I left there feeling empowered. I talked to Tate and e-mailed the school district/special education program about our desires to integrate Brett in kindergarten – and I prayed. I felt like I was following a lead that wasn’t my own, which put me way outside my comfort zone.

For those who haven’t been through it, IEP meetings are stressful. You come to the table with the child’s team. The idea is the parents and child are part of that team. But it’s just you and about six or seven people from the school district and it can be intimidating. Since Brett was 2 and I started researching schools, programs etc. I have read and heard countless stories of bad IEP meetings with major disagreements, advocates and lawyers. Those seem to be the norm. So Tate and I did our homework, we proposed goals of our own and made numerous pros and cons lists for a variety of integration scenarios. We were realistic about the limitations beyond our control like distance between schools and multiple bus trips. I prayed someone else might offer a solution we couldn’t see.

We braced ourselves and went in prepared for battle.

But when we got in the room I was reminded that we are a team. Except for one new district official, everyone at the table was someone who has been helping Brett for two years. We traded stories and ideas and the tension melted. At the end of the goal setting we had gotten everything we wanted and more. We realized what an advocate Brett has in his speech therapist.

When it came to talking about transitioning to kindergarten the program director asked what we wanted. I told her our pie in the sky version – Brett safe and comfortable in his multi-needs program part of the day and then integrated into our neighborhood school with his brothers the second part of the day. Dipping our toes in the water. But the two schools are on opposite sides of town. We were concerned about the additional disruption, especially to his lunch, which is a challenge for all involved. But they said 'if that is what you want, we can do it.' We threw out a few more scenarios and then asked everyone around the table to give their honest opinions or new ideas. We landed on what we knew was best for Brett –  staying at his current school for both multi-needs and integration. They suggested we take time and discuss it privately, come back with any more questions and then let them know when we had decided. We talked and prayed and slept on it for a few days. We felt at peace with the choice and signed off on it.

I said a prayer of thanks that we have options, things had gone so smoothly and it was over. But, I know Jesus knew my heart was disappointed that Brett still wouldn’t be in school with his brothers.

Fast forward about four weeks. I received a call from the special education program administrator.

“You’re not going to believe it,” she said and I held my breath thinking, 'what now?'

“They are moving the kindergarten multi-needs classroom to your neighborhood school. Brett will be able to attend that class and integrate at his neighborhood school with his brothers.”

I choked up, I couldn’t respond. I was floored – I still am. I immediately called Tate and we shared our shock and celebration.

I was still crying when I hung up the phone and couldn’t stop saying prayers of thanks. I immediately thought of Matthew 17:20 and am reminded, as I have been so many times in the five years since the boys were born, that even when my faith feels small - pray God-sized prayers. Nothing is impossible through Him.

Matthew 17:20 (NIV)
He replied, "Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there,' and it will move. Nothing will be impossible for you."

Kicking milestones to the curb

When the boys were little I had one of those books about milestones and what to expect from birth to age 3. As a new mom I kept checking it and working on things and sighing with relief when things matched up. But at a certain point when more and more of those milestones weren't being met by all our boys it became a source of discouragement and disappointment. I remember sitting on the floor trying not to cry, praying and realizing - he will have his own milestones. The book went in the garbage and Brett has had his own milestones. Milestones you won't find in any book. I will forever remember the therapy session when he was 2 and matched all the baby animals to the correct mommy animals. It was the first real sign for me that he was really understanding and learning right along with his brothers. I remember when he started grabbing at my arm to get my attention, last year he mastered the thumbs up to answer 'yes' to questions. They are different, but they are amazing and they fuel my soul and give us hope. I think in some ways we are fortunate that we have the opportunity to really hone in on things most people take for granted and celebrate them with such joy.
I was fortunate enough to catch this on video and I'm continually grateful for people like his physical therapist Miss Elizabeth who believes in Brett and constantly cheers us on. So, after a physical therapy session packed with hard work Brett blew me away - again.
Watch, wait for it and celebrate with us - I think you'll get a kick out of it. David Beckham is retiring just in time.

Progress

Last year for National Cerebral Palsy Awareness Day I wrote about what Brett is capable of. I received so many great responses and heard from so many people, even those close to us, that didn’t know some of what Brett can do or is working on. So this year I thought I would do a quick update on some of the amazing progress he is making.

Here are some of the things Brett is doing more recently that I love:

-       He is moving around. It used to be I would put him on the ground and there he would stay until I returned. Or he would accidentally flip on his back and fuss because he didn’t want to be there. But this last year Brett is on the move. I set him down in one spot and give him a toy and I can come back minutes later and he will be on the opposite side of the room with another toy. I know this is going to sound funny, but I don’t really know how exactly he gets there. He doesn’t crawl … he swims. Sometimes he rolls, but sometimes he just kicks and kicks his legs and flaps his arms and somehow he propels forward. I give the credit to his new chair. I really think since he received his power chair in August he has a better understanding of his surroundings and that he can get from point A to point B.

- He is getting what he wants. No, we aren’t spoiling him (OK, maybe a little). He is making much more of an effort to get the things he wants. He’s in his chair and he dropped his toy and I’m not getting there fast enough. He will wiggle out of his straps and lounge to try to get it. More recently I started leaving him in his chair next to the drawers in the kitchen. I silently nudged Tate the other day and we watched as he wrapped his hand around the handle, pulled the drawer open, reached in and grabbed a straw out of the drawer. I’m not sure who was more delighted us, or him! Tate and I have both learned that you have to be careful not to leave anything within his reach you don’t want him to have. It used to be it would just sit there and he would just sit there and no problem. But not anymore! I left a piece of cake within his reach today and turned to talk to someone - and he was hungry, and it’s cake. He grabbed it to pull it toward him and dumped it. I was never so glad to see food on the floor. Tate left a mug of hot chocolate near him – I’m guessing it smelled good. Chocolate and glass all over the floor (and thankfully nobody was burned). But he is motivated!!

-       He says “Yeah” quite a bit. I remember my mom used to say “say yes, not yeah” but I’ll take yeah any time. He also uses a thumbs up sign to say yes and sometimes it’s like saying “me too”. When I get Brett out of bed every morning and say “I love you Brett” that little thumb goes up and I sometime say “you love me too?” and I get the “yeah”. Those are the days when you can actually see me float.

-       He’s driving – backwards. When Brett was trialing the power chair we found that pulling the joystick toward his body was a more natural movement and they switched it so pulling back drove him forward. But his wise therapists quickly told me that that is just encouraging the patterns we are working so hard to break. We are trying to teach him to extend his arms away from his body to reach and play and so we switched it back. It’s been that way for about two months and all I can say is it’ll be a long road. But, in the meantime, Mater from the movie Cars has nothing on Brett. He’s the best backward driver in the world!”

-       He’s potty training! He’s been ready for a long time. I think the truth is I’ve been avoiding it. I thought we would start out with  working on a few things while he is on spring break. Two days in and he has had a lot of success. We were both exhausted after the first day – but I am so proud. The communication piece is still a puzzle and I think if we can come up with a word he can consistently speak he would be staying dry. But I’m not always in the same room with him and I’m missing some of his hand signals. Once again he is way ahead of me!