I’m My Child’s Best Advocate

From the moment I found out I was pregnant with my first child I knew that I would be fiercely over-protective and make sure that he had every advantage that I was able to give him. I think this is a very common feeling. I don’t think I have ever heard a mother say, “I just want my child to do OKAY in life.” We also make the very basic assumption as parents that our children will arrive in this world as beautiful little bundles of perfection and this is where the struggle begins. It is hard as parents to acknowledge, even to ourselves, that there is anything potentially wrong with our child. Family members and friends may casually mention things. We may later mention our concerns to the pediatrician, but they only see your child for a handful of minutes at a time, so they assure you that everything is fine. Then time goes on and you realize that everything is NOT fine and it is up to you to be their advocate. 
With my oldest it began around his first birthday when we noticed that he wasn’t talking (at all). My brain skipped back to when my son was only a couple months old and I got a letter from the local health department indicting that my son hadn’t passed his hearing screening. I immediately contacted my pediatrician to schedule a follow up screening, and was told that they had the form in the file that said he had passed. They faxed it over and I never gave it another thought, until now.
At my son’s one year check up I raised my concern with my pediatrician, who reassured me that all kids begin speaking at a different rates and that they would reevaluate him at his 18 month check up. By my son’s 18 month check up I was beginning to unravel at my son’s lack of verbal communication and the fears were building as to what could possibly be the problem. My pediatrician still seemed rather unconcerned, but I was no longer interested in outside opinions. I left his office and immediately scheduled an appointment with an ear, nose and throat specialist. In my mind my child, who never cried, wasn’t speaking because he couldn’t hear. The ENT confirmed what we suspected, and despite never having had an ear infection, both ears were completely blocked with fluid. I was angry! I was angry first at my pediatrician for not picking up on this, but I was mostly angry with myself for not having pushed harder when I suspected that something was not right. I had failed my child by not advocating harder for what I believed he needed.
This began the journey of specialists, getting tubes put in, and working with Macomb ISD to get Aldo into speech therapy as soon as possible. It’s amazing how much a child misses when he can’t hear for the first 2.5 years of his life (his age when he got tubes). He began speech therapy shortly after turning 2, but didn’t really make much progress until after his hearing problem was corrected. He began preschool at age 3, and was still not speaking much, but if you met him now (and he talks your ear off about God-knows-what) you would never know that he could not hear or speak until he was almost 3.
Aldo is now 5. He is finishing up his pre-K year of school and has made tremendous progress, but the effects of his delay are still apparent to me. I have great regrets that I didn’t push harder to get the process started earlier because it would have made his little life easier. It is my job as his mother to make sure that he gets what he needs.  I will never again hesitate telling his doctors, teachers, or anyone else exactly what I think that is, and I will make sure he gets it. I will always put advocating for my children’s needs above my personal feelings, or those of others I may offend because it is my job and no one else can do it for them.

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3 Responses to I’m My Child’s Best Advocate

  1. JV March 6, 2017 at 8:53 am #

    Lacey, I never knew about this! Your story very much hits home for me as I went through something similar with myself. I went to dr after dr looking for answers for my failing health and bizarre symptoms only to have them tell me nothing was wrong. It was so frustrating. I finally became my own advocate, did my own research, demanded certain testing, and finally found answers. Many times we put so much trust into our doctors and treat their word as gospel. It’s important to remember they are only human and will and do make mistakes and miss things. Trusting your gut and advocating for yourself is so important. So glad you found answers and you’re speaking out! Xo

  2. Monique March 6, 2017 at 7:10 pm #

    Did he show any signs of not being able to hear? My son is 15 months and only has a handful of words. I’m not sure I even count them as he only uses 2 or 3 regularly. Receptive language is great though. I contacted early intervention and they said he’s fine. The Dr says he’s fine. I’m worried at 18 months or 2 years they will say he’s delayed and I will have missed months of working with him. He seems to hear well, loves music and responds to his name. I’m just waiting on this “word explosion” everyone talks about. But really I just want to hear him say mama.

    • Johnna March 22, 2017 at 8:10 pm #

      This sounds like my son who is autistic. He’s amazingly smart and now talks my ear off but had very little communication skills but did repetitive speaking from early on. I’d talk with early intervention or a developmental pediatrician to have an evaluation done. Better safe then sorry and early intervention is key!

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