Why Advocate? How to Be the Advocate Your Child Needs You to Be

Since becoming a mom six and a half years ago, I have often heard people tell me to trust my “mom gut.” My mom gut is not just my stretched skin and enlarged midsection after birthing three babies. It is that instinct that tells me something is not right.  

When my middle child was two, she showed signs that something was going on with her mouth and that area of her body.  She drooled still, breathed audibly, snored, and did not talk very much. After advice from a friend who is a nurse, we had her checked by an ENT (Ear Nose and Throat) doctor. We discovered she had very large tonsils and adenoids that were preventing her from breathing correctly and being able to swallow correctly. This quite possibly contributed to her issues of drooling and lack of talking.

After a successful tonsillectomy and adenoidectomy, things improved. Her vocabulary and speech improved and she became very talkative. We expected the drooling to improve, but it did not. About five months after her surgery, we had her screened for speech and occupational therapy to see if there were issues. The practitioners did not find any abnormalities in her speech. They gave us some tools to help with the drooling and to help her manage it. Things got better and we saw improvement. 

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A little over a year ago, the drooling started up again.  In addition, she also became harder to understand. As her parents, we understood her most of the time, but we watched people tilt their heads as they worked to try to understand her. They would smile as she talked because as excited as she was to talk to them, they did not understand a word that she was telling them. That prompted me to have her evaluated a second time to see if she might need speech therapy. After her second evaluation, it was concluded that her speech was developmentally appropriate for her age and therefore she did not qualify for speech therapy.

My first feelings after that diagnosis were that of relief.  Phew! We did not need to worry. She would get there and be just fine. My feelings of relief were brief. I started thinking about all of the times people would do their best to interpret what she was saying and to try to understand our sweet girl. Something inside me told me we needed a second opinion.

I just did not feel right about the results we had been told.  My mom gut was kicking in big time.  

After many phone calls and hoops to jump through, I finally found the right person who would listen to me and agree to evaluate. After an evaluation, my feelings were justified and we learned she had an articulation disorder. It was not a vocabulary issue. It was an issue with tongue and mouth placement and formation of sounds.  We attributed some of her errors to date back to when she had her tonsils. Because of her large tonsils, maybe that was affecting her ability to speak coherently and precisely and so in turn she developed bad habits with her sounds.  In addition to that, she was a finger sucker which messed up her jaw structure. We worked to help her break that habit. Upon receiving this news, we enrolled her in speech therapy. Together with the practitioners, we developed goals for her and what we would like her to be able to do to be more intelligible.  We still have a ways to go, but she is on the right track and making positive progress.  

Why do I share all of this? This experience has taught me to be an advocate for my kids. 

When you have an inkling that things aren’t right or you have that nagging feeling that you need more information, trust that feeling. 

That is your mom gut kicking in. Motherhood has taught me to be more of an advocate for my kids. It has taught me to verbalize their needs within reason. If I do not stand up for them, who will? As a mom, it is my job to be my children’s advocate until they have the ability and foresight to do that for themselves. Being a mother has pushed me to advocate for my kids until I receive answers to set my kids on the right path.

Part of being an advocate for my kids is sharing with other mom friends in hopes that I will not feel so alone and to know that there are other kids out there who have gone through similar experiences. It can be hard to be so raw sometimes.  It can be hard to share our struggles out of fear of judgement or condemnation. When we share, we may learn something new that other parents have experienced. Maybe by our sharing, we can help someone else not feel so alone. By sharing with other parents it makes our path not so lonely.  As a parent of a child who needs extra help, we realize that we need that support system too. Part of advocating for our kids is also advocating for ourselves.  

So how do you know what to do or what to say?  Here are a few tidbits I have picked up from our experience along the way.

1. Trust your gut. 

If you feel like something is not right with your child, trust that feeling.  Ask your child questions, listen to them, and decide what to do next.  

2. Ask questions.  

Ask questions of your child’s teachers, caregivers, etc.  Ask for input from people who are around your child. Sometimes by asking, you may find it is not something to worry about.  If after asking you still do not feel satisfied with their answers, keep digging. Ask the hard questions, even if you know the answer you receive may sting.  We all want what is best for our kids and that may mean getting them help for things you can not help them with.

3. Ask for referrals from doctors or other healthcare professionals. 

Usually if they do not have the answers for you, they have no problem referring to someone who does.  If they brush it aside or minimize it, press harder. We are fortunate to have a doctor who listened to us and had no problem writing a referral to providers who could best help us.

4. Get support for yourself. 

Surround yourself with friends  or family who will listen and not judge. If needed, find out about support groups of other parents who may have a child going through a similar situation.  Surround yourself with people who will support you as you walk this road and not pass judgement or make you feel bad for the steps you have walked or what your child is experiencing.    

Motherhood and parenthood is an ever-changing, revolving door of “having things figured out” and struggling with things.  It does not matter if this is your first child or your fifth child. Every child is different with different needs, gifts, and struggles.  I have learned that what may have come naturally and easy for my oldest is not the same things that come naturally and easy for my middle and youngest. Every child and experience raising children is different. I have learned to not let what others may think overshadow getting the help we need. Sometimes the strongest and most freeing thing can be to say, “we need help.” There is a lot of power in that, and I am confident that down the road we will see the fruits of our efforts and our kids will also see that too. 

Do not be afraid to ask the questions because many times those questions will lead to the breakthroughs our kids need.  Ask the questions and be the advocate your child needs you to be.  


 

brenda
Brenda is an Iowa native who has lived in the Iowa City area since 2005. She is married to her love, Robert, since 2012. Brenda is an elementary teacher by trade. She spent almost nine years as a stay at home parent but is now back in the classroom spending time with her school kids and being a mom to her own kids. She is the mom of three; Gabe (April, 2013) Maggie (April, 2015), and Julianna (September, 2017). Brenda enjoys being active by running and working out. She also enjoys trying new recipes, volunteering, playing board and card games, and being involved in church. Brenda is an elementary teacher and loves cheering on the Cubs, UNI Panthers, and the Iowa Hawkeyes. It is a busy but beautiful life!

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