A Journey Through Apraxia :: Being Your Child’s Advocate

by Maria on January 25, 2013

Mom and Thatch Apraxia Walk

This is a series of posts on my journey through Apraxia with my son.  I am sharing our story, because although it may not be relevant to the masses, anyone with a child facing a disability of any kind will likely share similar emotions and obstacles.  If our experience comforts the heart of just one mamma, than it is worth sharing.  So please, feel welcome to share your story in the comments.

Part One and Part Two 

To Fight or Not To Fight?

If there is anything I have learned through this experience it is how to be more bold and stand up for what I think my son needs. With that said, if there is one area where I sometimes feel I am failing, it is in being bold and standing up for what I think my son needs.

I have been having an internal debate for months. The kind of internal debate that I think all mothers/parents sometimes have. The kind where you lay awake at night wondering if you have done the right thing.

As I shared previously in Part One of this series, we had just moved when we found out how serious Thatchers speech delay was. The state we lived in previously had great services for Thatcher and he would have had even better services as he was turning three. He was getting two hours a week of Speech Therapy and was about to start a special preschool where he would attend everyday for two hours and be pulled out for speech therapy while at school.

When we moved the new state wanted to give him five half hour speech therapy sessions a month, and nothing else. I was furious. I like to blame it on the fact that I was pregnant, but I started crying right there in front of the three ladies who had done his evaluation. I could hardly talk I was so mad. I pulled it together enough to somewhat eloquently tell them that was not exceptable. They knew it wasn’t exceptable either. They had already told me they had never seen a child with such a severe delay, who didn’t also have another disability that the Apraxia was secondary to. I could see it in their eyes. One of them was on the brink of tears herself.

The following week when I went back in, those same three women told me that they had done everything they could and got it changed to seven half hour sessions a month. He had been getting two full hour sessions a week before we moved. At that moment I realized it was up to me. I couldn’t count on anyone to help him in the way I knew he needed, except for myself.

I did my best to turn myself into a speech therapist, so that I could work on the things he was doing in therapy, on the other 23 days of the month that he did not see his therapist. Even though he was only three I felt he needed to be in a preschool setting to be around speaking children and have routine. I was disappointed with the ones I researched in our area so I found a few friends with children Thatchers age that were willing to do a preschool in my home with me to give him the exposure to children and routine I felt he needed.

I started asking questions about what to expect when he got to kindergarten, would there be an aid or someone in his classroom during critical times like reading and math, where he would need the most help. Again, I couldn’t believe what I was hearing. Nothing. He would have no additional support. In the state where we live children need to have two diagnosis’ to be eligible for certain funding and or services. This was just one more incidence where we would find we fell short in diagnosis’ yet again.

We have hit this wall many times in our Journey with Thatcher. We are EXTREMELY grateful that Thatcher has only one diagnosis, but it is beyond frustrating that the level of severity in the one diagnosis that he has, is in some cases much greater then the sum of two diagnosis in another special needs child, but because they have a second diagnosis they qualify for services that Thatcher is turned down for.

On multiple occasions we have contemplated getting a disabilities lawyer to see if there is anything we can do to fight for better services for Thatcher. After speaking to a mother who went through a court case with her special needs daughter I couldn’t believe how expensive it was and the time and stress it put on her  during the process.

I wage the internal battle of wondering if I could keep up the important things I do for Thatcher, not to mention caring for my other two sweethearts, if I was stressed and worried about the outcome of a court process we really can’t afford.

For now, we see Thatcher excelling with the opportunities we work hard to give him. He is improving. He is happy.  And although there is a big part of me that wants to sink my Mama Bear Claws into the system and go after them for what my son deserves, there is another part of me that recognizes I can’t do everything.

Every time I have been at my lowest moment, sick with worry and overwhelmed, right around the corner there has been some kind of Miracle. Whether it is the extra two hundred dollars a month that just happens to cover the supplements Thatcher needs, the free music therapy a women who attends our church offered to give him after seeing him “sing” in a children’s program, or being selected out of hundreds of children with Apraxia to receive an iPad, and so on and so on. These miracles are proof to me that I am not the only one working to make up for what Thatcher loses out on in our new state. There is someone else fighting for Thatcher, someone who knows exactly what he needs even more then I do.

I wish I could say that I am strong everyday, that I stay focused on these positive things, but I am not. The worries still come, the future still terrifies me, and in 10 years I wonder if I will regret not fighting harder against the system. But for now I am doing what I can and trying to be self aware enough to know my limits and weigh the possible outcomes. Each case is different and for our family right now, we feel the best thing for me to do is to keep doing what I am doing. When Thatcher hits kindergarten and they try to tell me he doesn’t need any extra help in the classroom…………well, now that could get ugly!!!

Maria

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{ 9 comments… read them below or add one }

Carolyn January 26, 2013 at 11:40 am

When I was reading your post my emotions ranged from heartbreak for you to anger at the system that puts little ones into categories! I am a speech/language pathologist and over my career (probably earned around the time you were born) I have worked with many children and adults with Apraxia. This type of speech disability is very difficult to overcome without extensive intervention. The 2 sessions x 30 minutes “cook book” recommendation isn’t usually sufficient for a child with severe Apraxia. Has he been assessed by an Occupational Therapist? Students with oral or verbal apraxia often have fine motor difficulties that can qualify for additional services. I know you are concerned about Kinder my suggestion is set up a meeting with the principal of the school he will be attending and discuss your concerns. He/She might invite a Kindergarten teacher to join the meeting which will give everyone additional insight into his needs. The school site staff will become your greatest advocates because they want the children to succeed.
It is amazing what funds or services can suddenly appear when you say words like “I want an IEP review and by the way I will be taping the meeting” (you have the right to tape a meeting if you give the notice in writing to the school 5 days ahead of the meeting and the right to call for a meeting at anytime). You don’t need an attorney to do this and I often suggest that parents tape the meeting so they can review what was said because we are overloading them with information and that allows them time to process the information without the same emotional reaction. Also don’t sign at the IEP meeting tell them you need to have time to talk together and review the recommendations.
The school staff I work with is amazing…it is the district staff…the gatekeepers for the $ that I get frustrated with (on a weekly basis).
Be a Mama Bear! I love working with the Mama Bears because their little ones have someone in their corner. As a professional I have more problems with the parents I see once a year.

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Shanny Khoo January 26, 2013 at 1:32 pm

Dear Maria,
Hang in there! No matter how thing can go against you at times, always know that there will be a better future for your boy when you keep at it. I may not know what your family and you may be go through now, but stay strong. Us women are made that way, even though we feel like breaking down many time on the way. Take care!

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Jackie January 26, 2013 at 2:34 pm

He is so lucky to have you as his momma! You ARE fighting for him and you will both be blessed for your tireless efforts. If he doesn’t get extra help when he enters kindergarten you better believe I will be right by your side fighting it with you.

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Amy Schnurr September 3, 2013 at 8:55 pm

I am desperately looking for an advocate in my geographical area. ( Sandusky, Ohio) I need HELP!

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Merry January 27, 2013 at 10:02 pm

You are truly your child’s best advocate Maria! I am so proud of how far both you and Thatcher have come! Try to celebrate all of the those victories both big and small. Love you:)

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Honoree Brown January 28, 2013 at 3:41 pm

Maria, you are awesome and Thatcher is a most sweet and special spirit you have been blessed with. Your story brings me to tears both for your hardships AND for the clear and obvious love God has for you, Thatch and your whole family. Thank you for your most amazing example. You rock…and so does Thatch-man. Love you guys!

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mcguire February 1, 2013 at 7:42 pm

I too have a son with apraxia of speech. I am also an early childhood educator who has dedicated over 15 years to working with children ages 5-7 as a classroom teacher in both private and now public schools. I know that teachers tongues are tied and even the best administrators are NOT your child’s advocates. We in the education circle live in a climate of fear. From one mother to another-trust your instincts and PUSH, ADVOCATE, and go BEYOND what you think your child needs. Educators jump through hoops trying to get children the services they not only deserve BUT need. The system is bogged down with red taped, purposefully, to make services available to the most extreme cases. It all boils down to cash and boldness. As a parent you must make demands-no one else can do it for you. Suggest it as a teacher and you fear the consequences….Suggest it as a parent and you make way on a tough climb. Keep blogging for our boys!!!

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Dalila May 24, 2013 at 10:42 pm

I also have a 5 year old son with apraxia and I completly. Understand you. I fight everyday for my son im facing right now discrimination and that hurts its not his fault he was born this way its sad to say its mainly adults i try to do whats best for him but I feel sometimes im not doing enough I also want the best for my son so if we have to get ugly its only cause we care and want the best for them I stongly agree that if we are going throu this its because we are some strong women !!! I cant wait to have a full conversation with my son hang in there ur not alone we can do this !!!

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Jerusha August 15, 2013 at 6:41 pm

I’m not even sure how I found my way here, but I appreciate your story. I have a son, adopted from China, with apraxia. I am so thankful for an SLP who clued in to this when he was about 18 mos. so that he could begin intensive therapy right away. He just started special ed. preschool with an IEP–social/emotional goals only. I was happy (I guess) that his speech has improved enough that the school isn’t offering him services (and was angry too about the way they tested), but as his mom I still see all the areas of delay, including fine and gross motor, word-finding, inability to sing, high anxiety with unfamiliar tasks, poor play, etc. I am truly sorry you aren’t getting the help you need and pray that you WILL. Blessings.

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