Wednesday, November 28, 2012

Be the advocate your child deserves.

When I was in fifth grade, I began the year with a team of really bad teachers. In fact, when I stumbled on a multiplication fact, in front of the entire class, my teacher told me I wouldn't "learn math until the cows came home." How disheartening and embarrassing to hear something like that. From then on, I sat through math classes pleading (in my mind) with the teacher not to call on me to answer a question in front of the class. My mom fought to have me removed from that class. I'm sure she met with the teachers and the principals more times than I know about, but ultimately, she told the principal that if I wasn't removed from that team of teachers, she would pull me out of school and home school me for the rest of the year. I was moved to a different team, and the rest of fifth grade went well, or at least as I remember it.

My mom taught us the importance of advocating for your child. I have been tried and tested in this department of parenting since the moment Isaac was born. It's pretty simple. Here is a little person whom you love with all of your heart and soul, who has no voice or power of words with which to express their needs, and you fight for them. You are your child's voice. With that comes great responsibility. If you feel that something is wrong, and the people who need to listen aren't listening, find someone who will! I've been Isaac's voice, and I've been Isabella's at times, but she hasn't required nearly as much fighting for.

When Isaac was placed on my chest for the very first time, we knew nothing other than the fact that his head was misshapen. We had no idea what a roller coaster ride we were in for. Now, I think back to all of the testing he went through. Much of it very uncomfortable. I think of lying on an exam table pleading with him to nurse so that we would make it through whatever test he was enduring. Sweating. I remember sweating, as I held him so many times as he cried and cried at the doctor's office. Most of the tests were to determine why he was so constipated all the time. And every one of them came back normal. Which was great, but trust me, when you're searching, you want to find an answer.

When we did finally find the answer, and found out that this would be something he would carry with him his entire life, it was so hard. But then pretty much everything we'd been through was explained. And I finally knew my mission. That's pretty simple too (in writing at least), do everything possible to give him the chance to succeed. That's my mission. That is the reason we have multiple appointments each week; that is the reason I push him to respond with a sign or a sound; that is the reason why he has to have time-outs just like any other kid; that is the reason I talk to him just like I always talk to Isabella; that is the reason he isn't just on formula 24/7 (more on a blended diet in another post).

I will be very honest with you. If you are the parent of a child with special needs, you can't sit back and watch the show. Nothing will happen if you do that. The services for your child, don't just line up at the door. Ask questions, do your research, talk to other parents, and stay informed. Before you go to an important appointment, spend some time writing down questions, or things you need to share with that particular doctor. Use that time as wisely as you can. My recommendation, make a medical binder with tabs for each physician where you can keep any information given to you by that doctor. Make sure you have each physician's business card taped to the inside of the binder. I also keep a list of Isaac's recent words/sounds, and signs, that way, if anyone asks I'm not sitting there trying to remember everything, I just hand them the paper. If your child is on a blenderized diet and you have an upcoming GI appointment, keep track of what they are getting through the tube for a week (calories, proteins, fats, etc.) that way you can account for their diet. Trust me, people tend to get weird when you choose the road less traveled. Take video clips of your child meeting certain therapy goals, so that you can show what you are working on at home.

Most importantly, be upfront with the doctors in your life. Just tell them, "this is what I feel is important for my child, what do you suggest, and how can we work on this together." When I met with Isaac's new ENT, I told him upfront, I'm not leaving today without scheduling a tonsillectomy. I guess at that time I wasn't really suggesting we work on anything together. But my point is, I knew that was the next step, and look at the vast improvements it has made to have his tonsils out.

Trust me, I'm not trying to say I'm perfect, I've just found a method to this madness that works for us, and I would like to encourage you to do the same for your child.

 Good Morning!

I love her eye lashes.

Stella is wearing her cone again. Don't worry, Grandma, she's fine, just some itchy skin issues going on. As you can see, she is well cared for by her little doctors.

How about a stuffed animal, Stella?

Or two?

"I see you, Charlotte!"

Isabella, reading to Isaac while I finished getting ready for our morning of therapy appointments.

Using an iPad at Speech Therapy.

The idea behind this post came from the most amazing compliment I received from Isaac's feeding therapist. She and I have had differing opinions on many occasions  and I've recently decided to stop feeding therapy and start a different feeding approach with his OT. But she said that if she were a child in Isaac's situation, she would want me for a mom, because if something isn't working, I don't continue doing it anyway, I move on and find a new way to approach it. Hearing that, means the world to me. We've been on quite the journey over the past two and a half years, and I know many of you reading this have a child with special needs, and you have been on a similar journey or even a harder, more complex journey, with your child. Just remember, you're doing a great job, and you're doing everything you possibly can.

Stay strong,



  1. Sierra the progress Isaac has made is absolutely amazing. You have a beautiful family! Please remember your own words....."YOU'RE doing a great job, and YOU'RE doing everything you possibly can." I have a friend who's son was recently diagnosed with autism and I was explaining to her your situation and how you have been such a powerful advocate and have accomplished so much. I think you have motivated her!!! Keep it up, it is working!!!

    Stephanie Kabert

  2. Dear Sierra,

    You are an incredible advocate for Isaac. Your dad and I did come up with a written plan with examples of what was going on in the classroom. Dad and I spent hours putting together our rational on paper as to why you needed to change teachers and what we felt we would need to do if we couldn't get results from the school. I went to the meeting since dad had to work. I met with the principal. I presented our position on your behalf and left a copy of our examples. I did tell the principal that we had decided if they wouldn't work with us we would take you, your great proficiency scores and home school you. I was sweating inside. By the end of that school day the principal called and told me the change had been made, you would never have to go back down the hall again and pass that group of teachers room. Your desk would be moved and your new teacher would call at the end of the day. She called, you went to school on Monday and when you got off the bus I knew what dad and I had done as your advocate was the right thing to do. You have to trust your gut. You are doing a great job and if I were Isaac I would want you as my mom too.

    Love you Always, Mom

    I remember Stephanie Kabert! Hello

  3. Math - Isn't it interesting. I always sweated in Math and tried to be invisible. Your math skills amaze me. You calculate fat grams, calories, protein, weight, height and growth every single day. That is Real Life Math.