Ethan's Journey
What is Apraxia? Believe it or not there are many who do not know what Apraxia is or how to help children with Apraxia.
Here is our story:
Eight years ago, we brought home our beautiful baby boy. He was such a happy baby and made our family complete. When he was about a year and a half, we started to realize that his words were not quite on track. We brought it up to our pediatrician and we were told he was fine and just a late bloomer and because he is a boy it’s not uncommon. So, we continued to encourage him to talk at home. We sought out help from Early Childhood Intervention (ECI)) to see if it would give us any direction. They came out a few times but once again we were told that being a boy and having an older sister it was normal for him not to talk. I felt this was not fully accurate because he was cooing or babbling and trying to talk to us. At 2 yrs. old we went back to the pediatrician and said that we were still concerned about his speech, he still wasn’t saying much, and we knew he really should be saying more than he was. She was still not concerned, so we asked her if we could get a referral to an audiologist to have his hearing checked and rule things out. I knew something was not right and we were starting to feel completely helpless. We went to the audiologist and sure enough his hearing was great. So, at this point we were back to square one.
Ethan was 2 ½ now and we enrolled him into a speech therapy program at the University Of Texas at El Paso. We did that for 6 months as it completely fell apart. So, we decided to enroll him in the school district’s speech therapy program. They went back and forth about what he may have but no one could figure it out. They suggested that he needed to be in group therapy because that would help him to start talking, well that couldn’t have been further from the truth. We did that for a year and there was hardly any improvement. At this point my husband and I were really concerned and we knew that as he got older it would make things a lot harder in his day to day life. We started to ask ourselves, “Will he ever talk? What will school be like and how do we need to go about that?”
We took him back to our pediatrician and once again she still believed nothing was wrong. At this point we had lost faith in what they said and new we were on our own. So, at 4 we took him back to the audiologist just because I was seeing very little improvement and now he was way behind in his speech. As we were there at the audiologist’s office I remember feeling so lost and feeling like no one could give us any answers. We had researched and looked for answers but just didn’t know what to do or even what to look for. The audiologist came out and said well his hearing is still great and as happy as I was to hear that I just didn’t know what to do next. We talked for a minute, and she asked, “have you ever heard of Phonological Processing Disorder? She recommended a therapist that she knew and was a specialist in PPD. She gave me her info and I called the next day for and evaluation, after the evaluation she came out and said she thought might be Apraxia but said it definitely was not and that it was Phonological Processing Disorder. We pulled him out of the school district program and put him into private sessions.
We did speech twice a week for almost 2 years and realized there was still minimal improvement. In this time Ethan had started school and doing sessions at school as well. School was very hard for him because the teachers didn’t understand how to help so therefore, he was getting more and more discouraged. He was about 6 ½ when his therapist came out and said I think we need to test him for Apraxia. As you can imagine my husband and I were shocked to hear this when we were told almost two years ago that is was not Apraxia by her boss. I knew that if it was Apraxia that everything we were doing was not going to help but very possibly even be hurting him in the long run. Kids with Apraxia need specialized therapy. We were so done with any of the professionals. We had been trying for so many years to help our sweet little boy and things were only getting harder and more frustrating for him.
He was more and more aware that people didn’t understand him including his own parents and that was the most horrible feeling. All we could do was hold him as he cried and tell him we will get this figured out and I promise WE WILL FIGURE OUT TO HELP YOU. I wasn’t just talking to him but also to myself. I knew I could not give up no matter how tired or frustrated or annoyed I was at everyone. If I felt this way, I couldn’t begin to imagine how my little guy must have felt. How isolated he must have felt to not be able to say how you feel to know that if something was wrong or scary you had no one that could comfort you fully all because no one could understand you. I knew that as he got older this was going to only get harder on him because he was aware that people didn’t understand but he understood everything and no way to defend himself. It is a horrible feeling for a parent to know that your child is hurting and trying so hard but there is nothing you can do.
Now I realize that at this point this had probably been pretty devastating to hear but here comes the good news.
After being told that we needed to test him for Apraxia my husband and I stopped and just asked the Lord to guide us on how to research and who to call and He did just that!!! We started doing tons of research on Apraxia and what we could do or needed to do. So, I googled Apraxia and came across one book, Overcoming Apraxia, by Laura Baskall Smith. That was where it all began!
As my husband and I read this book it was like someone was writing our story. This was someone who was in the same situation but not only was struggling with the same situation she was also a speech therapist. She had said it made things harder because she had been trained to help kids with speech and she didn’t even know how to help with this. So long story short she became a specialist and now is helping kids from all over. Reading her book was like seeing pain poke of light at the end of a tunnel. As I was sitting in my car waiting for my oldest to get out of school, I was reading her book and she mentioned the name of her company, A Mile High Therapy. I stopped reading, picked up my phone and called her office. I realized she lived in Colorado, and I lived in Texas, but I didn’t care if maybe she could guide us from here and we would do anything at this point. I couldn’t believe my ears when on the other side of the phone was not a receptionist but Laura. I told her who I was, and our story and I just needed to know what do from here. She listened to me and was so kind. I told her that we had gotten an evaluation done from knows current therapist but that I wasn’t confident enough in their expertise so I would love to do an evaluation with someone that new what to look for. She said that she couldn’t be our therapist because of state laws but that she was able to do an evaluation for us to help us get started on the right track and in less than 3 weeks we were going to Colorado.
She also recommended Apraxia Dallas and said to reach out to them, and they may be able to do tele-therapy. We were so excited we finally felt things were headed in the right direction. I still knew all this was a long shot but hey I finally had more help than we had had in 6 years. Then it just gets better. I called Apraxia Dallas and they listened to my story, and they said they had a family that had been going through very similar things to us and maybe we could talk. I cannot stress enough that having a community or just even one other person to talk to is so important not only for your child but for you and your whole family. They sent me a number of the family and I called immediately. We spoke for two hours. It felt like I had known her for years and we were just catching up. When you have a child with Apraxia you share a very special bond because they understand the little moments that no one else would. I know many of us hesitate to make a phone call and for so many reasons, but I cannot stress enough, pick up the phone and call!!!! It could change everything and if not for you do it for that little one don’t think about anything else other than finding a community and help for your child and your family. Take the first step and call.
As I called, I was met with the most kindhearted voice, a voice that was going to be a lifelong friend. Her story was so similar to mine, I couldn’t believe it. It gave me a little bit of hope knowing that her daughter had been struggling the same way and with the right therapy she was going to be graduating from speech therapy in just a few short months. I knew my son would be able to talk!!!! With the right therapy my son would be a success story. Yes, there were going to be a lot of challenges ahead and some hard moments, but we were on the right track after so many years. My dear new friend and her husband had us join them at their walk in Dallas two weeks after our first phone call and we met for the first time at the walk, and it felt as if we had known each other for years. They opened their arms wide to us and cheered my little boy on as he ran across the stage and received his medal with such a big smile.
After so many years of feeling so alone we weren’t alone anymore. After the walk we flew home, and my little man and I got right back on a plane to Colorado for the evaluation, where he was diagnosed with Apraxia. She helped give us some things to start working on until we were able to get him started at Apraxia Dallas. All of this happened in less than 3 weeks. We knew what we were dealing with now and my husband and I knew we had to learn to be the best advocate for our son. IF your child has been diagnosed with Apraxia or you think it is a possibility then I urge you to attend the National Apraxia Conference. You have an opportunity to meet specialists and other families that have kids with Apraxia. You will also get to hear from young adults or kids that have Apraxia and have learned to overcome day to day with a resilience that no one could ever understand. It is amazing!!! They know how to fight and not give up. If you are reading this I hope you will walk away with NEVER GIVE UP!!! Your child depends on you for the fight of your life and to show them how not to give up. They will fight harder than you can imagine but they need you to do it alongside them.
Fast forward to today for my little guy, he can order his own food at a restaurant and just recently ordered through a drive through window, and they completely understood him. He can hold a pretty good conversation with his friends and family. There are still times where he is not understood but man, he has come a long way and everyday things are unlocking for him and I am excited to see what he will do. I know he will go so far, and we owe everything to Our Lord and to those alongside of our road that we have taken. Laura, Kathrine, and Apraxia Dallas have been so key to our little boy’s success. Find your community and Keep Fighting!!!!
