Being An Advocate For Your Children - One Of The Most Important Lessons I've Learned

June 11, 2018


Parenthood is the biggest blessing I have ever been given. From birth, watching my babies walk and  explore the world around them is both magical and bittersweet. We have this idea of what parenthood will look like. When they're newborns, they will sleep through the night by 6 weeks and be breastfeed for 6 months. By age 2, they will be potty trained and know all of their colors. Most pediatricians visits become just another checklist of milestones they have or haven't done yet with routine vaccines. Everything is peachy and golden and this parenthood thing doesn't seem so hard after all.

Of course parenthood is never rainbows and unicorns all the time but I never knew until having Finn the lessons I would learn & how important it would be how we choose to handle situations when our view of parenthood isn't so smooth sailing. We're never ready for a broken bone at the trampoline park, we're never ready for the hospital stay in the winter when our child comes down with RSV,  I was never ready to feel the guilt, frustration, and confusion that came along with Finn having a significant speech delay.

Sure, some people may say it's JUST a speech delay, it's JUST occupational therapy, it's JUST feeding therapy. And sure, it's JUST all of these things but these things impact our life daily. As a parent, you never want your child to struggle or face challenges. I question sometimes if I ever will hear Finn say "mama", I question if Finn will ever eat an ice cream cone because he gets upset when touching cold foods. During these questioning times, I have to take a step back and realize it is okay. HE is okay. He is healthy. He is not broken, he does not need to be "fixed." He needs positive support and at the end of the day, I know I'm doing everything I can to help him overcome these challenges and I need to be proud of the both of us.

However, from an outsider's perspective and social media being a highlight reel, you don't always see behind the scenes. Sure we have our good days, but some days are much harder than others. I can't tell you the amount of times I've been upset and questioned myself, "Am I doing enough?", "Am I doing too much?", researching endless amounts of toys that could help. Researching what foods are best for sensory issues, it's a constant cycle almost of trying to get an answer of WHY. I think as humans we become so demanding and want answers here and now, and sometimes that's just not the case. Sometimes we never get an answer as to why and maybe that's part of the lesson and that's when I really have to dig my heals into my faith and let go of the worrying.

Finn has been in speech once to twice a week right at a year, and while he's made progress it is a slow process for us. Any progress is worth celebrating though, even the smallest of things. We started Occupational Therapy (for motor skills & sensory) & Feeding Therapy for an hour also once a week in May of this year so I can't really say too much other than how important it is to find the right therapist that meshes and connects with your child. We absolutely LOVE his speech therapist and I fully believe there is nobody that could be a better fit for him. Finn also had a great OT but I could tell she was getting stressed and didn't really know how to get him what he needed. He also just did not connect with her for some reason and I knew in my pregnant belly, she wasn't the right therapist for him. I spoke with his speech therapist and she agreed and we are now seeing who he was evaluated with. After the switch, our new OT emailed me regarding our scheduling but said "I am so glad Finn has a mom who advocates for his needs." which made my mama heart swell with joy and gave me a sense of accomplishment and that we are on the right track.

He was also in school (2 year old preschool) twice a week this past year which I also believe has helped him in every way possible. He does much better in a routine and being around peers has helped his development in so many ways. His teacher and I established such a great relationship and having her feedback to give his therapists has helped that much more. I'm excited to see when he starts their summer program 3 days a week next week how he will progress even more!

A FEW IMPORTANT NOTES I'VE LEARNED

1. Be Kind To Yourself. It's easy as humans when we don't have an answer for something, we start questioning ourselves or blaming ourselves when we can't see clearly what's going on or why we're having to face these challenges. Going back and forth about things we should have or could have done, or maybe we can do. It can become a very mentally taxing thing if we let it so be nice to yourself. You are doing a great job!!

2. Have Patience. Like I said, it can be a slow process. Patience doesn't come all that naturally to me but through this process Finn has taught me to be more patient both with him and the process. The days can feel long and there have been many that seem unproductive. Truth is, any time spent with them and working at home IS productive and always beneficial. I no longer judge another mom if their toddler is having a meltdown because maybe that child also has a speech delay? Finn's taught me a lot as an individual and doesn't even know it yet.

3. Pray. For those why and I don't understand times and in the good times. Who better to ask than the one that created him? Finn is fearfully and wonderfully made. He is perfect and funny and sweet, he is so smart and understands way more than he actually may say. I once read an article about a delay and the woman was talking about how she felt God speak to her one night when praying and said "Why are you worried? He is a child of God, I made him perfect and he was a Child of God long before he was yours. Do not worry, do not blink an eyelash." That has stuck with me since reading it that day and I keep it like a post it in the back of my mind.

4. Create The "Dream Team". From their therapists, to teachers, to doctors. Make sure they're executing all of their resources and you too. Get evaluated through the school system to qualify for services. Have open communication with everyone your child works with. There's nothing wrong with having extra people to love your child and want the best for him just like you do, but you've always got to be transparent even if it's difficult to talk about and accept.

5. Don't Try to "Fix" Him/Her. They don't need "fixing." They are not broken. They are perfect in every shape and form. One thing I always worry about is that Finn will be treated differently because he isn't able to communicate his needs. I think it's important to treat him just the same as any other almost 3 year old. There is nothing shameful about any kind of therapy, esp when it's benefiting your child and helping them grow. Sometimes things like this just take more time. We will get there.

6. Spread Positivity. Finn can get aggravated really easily when he wants something and I'm not understanding. I know it's just as frustrating for him not being able to use his words and that is one thing that is very hard for me as a parent. In these times though, it's important to encourage him and remind him how great he is, how loved he is, and what a good job he is doing. It's important for me to push him but I also know his limits and when he's tired. Sometimes you've got to be strong for the both of you. There is absolutely no other teammate I would want in this other than Finn. Being a positive influence for him through this is one of the most important things I think that I can be for him.

Hopefully our journey this far with speech, occupational & feeding therapy gives you some hope but I felt like this was an opportunity to connect with others and potentially help another parent going through this. It can be a hard thing to accept when your child is behind but that doesn't mean they can't still catch up. Regardless what kind of delay your child may have, regardless of a diagnosis they may have been given, they are perfectly and wonderfully made. Not everybody is going to understand the process, the struggles, even family members but there is nobody who knows your child better than you. Trust the process, celebrate the little things, always keep pushing forward. Your child needs you. You are not a failure. There's too much at stake to give up.


1 comment

  1. Really inspiring and heartwarming post.
    You're an amazing mom and your kids are stunning.
    Best wishes to Finn on his journey.

    Greetings from Italy :)

    ReplyDelete

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