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Thursday, May 14, 2015

The Speech Journey...Hope, Patience and FAITH!

Romans 12:12--Be joyful in hope, patient in affliction, faithful in prayer. This verse has become our family motto with regard to Michael's speech. Along with all the other obstacles our little man continues to hurdle over with mercy and grace he has something called Apraxia of Speech. If you are like me several months ago you probably have no idea what this is unless you have a child or friend with it. It isn't a developmental delay of speech in which a child progresses normally, albeit at a slower rate. This is a neurological condition in which the brain has trouble coordinating the muscles for speaking. It isn't a problem with muscles in the mouth, but the message they receive from the brain. Michael's case of apraxia is not severe, but it isn't mild either. At two years old he had maybe three of four consistent words.

Have you ever had a task ahead of you and you knew just how hard it was going to be and you dreaded it? You might have even quit and decided not to attempt it. Many kids with apraxia feel this way about speech. Speaking is actually a highly sophisticated thing to accomplish, but for many of us it seems to happen naturally. Kids with apraxia know it comes hard and every time they speak, especially words they haven't mastered yet, they have this feeling of jumping over the hurdle to get the word(s) out. The first time I heard of apraxia was when Michael was about 18 months old. Our occupational therapist, who has been with us since he was five months old, said she thought he might be apraxic but we couldn't know for sure until he had more attempts at speaking.

Michael started daycare the day he turned two and shortly after that we started speech therapy. This woman is amazing! Michael immediately fell in love with her and she began teaching our family and our daycare providers about ways to help Michael. We are so blessed the daycare providers are always willing to learn new ways to help the little man! The first thing she talked to us about was imitating. Michael knew nothing about imitating speech or other actions. He didn't pay attention to what others were doing. So, we began imitating him and playing silly games to try to trick him into imitating us. Hope...we had to have hope that this baby step would help. It seemed like something small, but it leads to things so much bigger. Imagine trying to stand on a piece of wood the size of your feet and then being asked to put that piece of wood on a post two inches by two inches and then being asked to stand on it. Imitating is the foundation to speech. I felt like such a failure as a parent. Why hadn't I realized he didn't imitate anything? Shouldn't I have known something was off when he would have any part of signing or looking at us when we did it? I had to have patience as many attempts failed and we would both get frustrated. I had to have patience as I took what I was learning at therapy home to my husband and daughter and try to get them on board. I had to have faith that it was going to work.

In the mean time, Michael's teachers had figured out that he was much more likely to attempt to speak when it was a class activity. There was no pressure when all the children were shouting the words. They took advantage of this and he started to say several words because of this. He started building a little confidence with attempting to speak. And, believe me when I tell you there was a celebration every time he spoke. It was music to everyone's ears. Our next stop in our speech journey was a communication book. AKA the five pound book Michael loves to carry and it's too heavy so he drops it every two feet! This book forced us to use shorter phrases and gave us more opportunities to say words and give Michael the opportunity to attempt them. It was a learning experience for all of us. At the time Michael didn't like reading books and he enjoyed looking through this so we went with it. It became our 'book time'. We had hope that this would be a segway to enjoying books. We had to have hope that he would start to imitate more. We had to have patience on the days we didn't have any luck. We had to have patience when we didn't see any results. We had to have patience as we had to let him lead us through the activities. We couldn't choose what we wanted to do, we had to let him make the move and we used that as an opportunity to say the words hoping he would attempt to repeat some of them. We had to have faith to endure this race. We had to have faith that if we didn't give up we would be able to come out on the other side of this. We added a developmental therapist to the mix around December of last year and she has been wonderful too. She reinforces everything and helps all of us sort out sensory issues and helps with speech too. A true angel!

Our latest tool is our Ipad. Michael has started saying so many words since we started using it. His speech therapist uses one and she saw great progress and suggested we try to get one when we could. We quickly learned it had to be an Ipad because most of the apps are designed for the Ipad, not the other tablet varieties. Some of our favorite apps are My Play Home, Fun with verbs and sentences, Peek-a-boo barn and the NAED apps. We have the full version of these, and some trial versions of other apps. Michael has also started looking at books and letting us read to him. Family and friends have bought him several recently as well. There are some great books that use a lot of repetition. Some of our favorites are Goodnight Moon, Brown Bear Brown Bear, The Foot Book, Five Little Monkeys and The Little Engine that Could.

I am happy to share with you that Michael is constantly babbling now, which is music to our ears! He has more than tripled his vocabulary in the last two months. He still has Apraxia, but it doesn't have him! He chooses every day to overcome Apraxia. He is trying harder than ever to communicate. He is desperate to communicate his wants and needs. He wants to have a conversation with you, but he isn't there yet. He wants to sing every word to songs he loves, but for now we settle for a few words per song. He knows every word to Mickey Mouse Clubhouse Road Rally, but he can only say about 10 of them. He hums and inflects his voice as the characters do for the words he can't say. We have to have hope, patience and faith, but so does our little man. He has hope because of the wealth of people around him cheering him on, telling him he can do it, giving him every opportunity to succeed, a speech therapist instilling a love of communicating in him, teachers who love him and provide a safe environment for him to attempt speech in, parents and family who try with every ounce of their being to encourage him and celebrate every milestone big or small. He has patience because those people around him aren't rushing him to speak. They are effectively using wait time to give him the opportunity to get his brain to send the right messages to the muscle so he can speak. He doesn't feel the pressure of speaking, he only feels the JOY when it happens. He has faith because our God is an awesome God. I have no doubt that the faith we have in our God as the ultimate physician carries over to our little man. We are faithful in prayer along with our family, friends and church family. This little man is covered in prayer daily by our prayer warriors. If we have the fruits of the spirit on this journey of Apraxia we will make it.

If you are on this journey of apraxia, take heart in the fact that the future will be what it will be. All you can do is give your child every opportunity you can to overcome the fears and anxiety associated with speaking. Have hope that the words will come, patience to wait for them, and be faithful to withstand the trials and tribulations along the way. Everyone's journey is different, but never forget that every child deserves a voice.

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