Archives for category: Cerebral Palsy

When I stop and think about it, one of the most daunting parts of my life is being a therapy mom. Because two-year-olds do not naturally choose to do things that are uncomfortable and difficult, moms play a major role in supporting the therapy process so that the child has many opportunities to practice the therapy exercises. However, making therapy fun for a toddler is a challenge! Day-in and Day-out we are always working on gross motor, fine motor, and speech skills and I am Nathan’s main therapist.

Therapy Mom

I thought I’d give a little run-down of the types of activities we include daily so he can continue to develop and hopefully achieve typical development one day.

  • Walking. This sounds ordinary, but considering that Nathan still struggles with basic walking, especially on uneven surfaces, it’s a super important part of our day. Now that he can walk, I ask him to do a lot more walking than I might a typical kid. If there’s ever a chance to walk on uneven surfaces – the bed, playground woodchips, ramps – I ask him to do it. And if he falls, I ask him to get up on his own so he can exercise those muscles too.
  • Climbing. Our therapist had a boy scout make us some solid wood, nesting steps for an Eagle Scout project and we use them a lot. They are scattered around the house, although sometimes we pull the together for a big climbing fest. We tried to place them in areas that will encourage him to climb up and down. I also have him walk up steps when possible to practice. Our library has the perfect size steps which are not too high and we often walk up those with me always verbally reminding him of the process of taking a step.
  • Using two hands. Nathan’s left hand has adapted well to being the dominant hand and he can do so many things with it. Too many things sometimes! His right hand usually hangs straight by his side and I have to remind him to “use two hands.” It could be in opening something, holding paper down while he colors, grasping something, turning book pages. There are thousands of daily ways to get his hand practice being used, but he often needs to be reminded. I have also come up with two hand tasks for him. When we have cherries or grapes, I do not de-stem them for Nathan. He gets the whole thing and de-stems it himself so that he has to use two hands. He thinks it’s great fun with the greatest reward at the end – fruit!
  • Right hand grasping. Because he doesn’t often choose to use his right hand exclusively, and for good reason, I have to set up tasks and tell him that he can only use his right hand. We might play with his shape sorter, but only use right hand. Sometimes we throw balls, but only with the right hand. He and I both love puzzles and we’ll work one with only the right hand. This helps his brain create connections and reminds it that his right hand is there and able to be used. It has slowly increased the amount of spontaneous use for that hand, but it’s not usually Nathan’s favorite activity which is putting it mildly.
  • Talking. Our speech to Nathan is filled with exaggerated and slowed down words. We often say the first letter over and over and then slowly say the rest. Then we’ll most likely ask him to say it too. Usually this gets a shake of the head as a response, and I will let it go. Early on we tried playing hardball with his speech to see if we could create enough frustration to get him to talk. It quickly became obvious that 1) hardball does not work with this child and 2) his speech problems are way more complex than playing hardball can fix. What often comes out is his best attempt and it usually sounds nothing like the word, but has the proper spacing and intonation as if it really was English. We praise him to the skies for trying to speak and when he does spontaneously talk, especially a new sound or word, we go bonkers and throw a little party. The praise works much better for encouraging him and tells his brain that whatever connection fired in his brain to make that sound come out was the correct one.

I’m sure from the outside, some of our life looks strange. Why is she making that boy get up all on his own? Shouldn’t she just pick him up? Why is she talking that way? I though kids learn speech best by being talked to regularly? Why in the world is she making that boy walk up those steps? I’ll offer to carry something for her so she can pick him.

I know it looks strange, but it’s all designed, with guidance from our wonderful therapists, to help Nathan achieve as close to typical development as possible. When I get discouraged and think that it’s too hard to think of one more clever way to fit in a therapy task, I just remember how hard Nathan’s bran is working to learn all these things. That gives me the encouragement I need to keep going so we can unlock all his potential. He’s a remarkable boy and it’s a pleasure to help him explore the world.

I don’t feel like I have adequate words to express what I want to say, which considering what it is seems strangely appropriate.

I did a lot of preparation for motherhood. I built on my natural mothering instincts, which were strong, with classes and books and an insatiable interest in what motherhood would bring. Our son’s cerebral palsy diagnosis put a different spin on these preparations and I’m not sure I was able to fully come to grips with what this new life would be like before he came home. But I soldiered on, and we all fell in love, and we’ve dug in and worked hard and been so rewarded. This has been a sweet year, beyond my imaginings in many ways.

But almost one year later, it’s beginning to be obvious which delays will be short-lived and which are probably around for the long-haul. And realizing this makes me catch my breath sometimes. And feel tired. Then I feel bad for being tired because I love my son so intensely and fiercely and it feels like a failure to admit this is so hard.

But the truth is, it’s so hard. It’s hard for all of us.

I long to have a conversation with him. A real conversation. He is a bright boy, and that’s not just coming from my say-so. His doctors and therapists marvel at him, estimating his development in almost all areas to be months to years above average. Having all those big boy thoughts and all those important memories trapped in a mind that is making it difficult to speak must be so frustrating. I know as the Mom I just wish I could fix it. I wish I knew what it was and could tackle the problem and make it go away. I’d get violent if I had to. For him, for me, for our family.

Until we can break through, we will make do with our dozens of signs and gestures and pointing and guessing. I will turn and look at him hundreds of times a day, making eye contact, suggesting words and ideas to see if that’s what he meant to tell me. I will repeat back the word for every sign so he can be sure I really understood. We will celebrate each new sound that makes it past those lips. And we will pray that God will open the channels from his mind to his voice so we can learn even more about this remarkable boy we call Son.