I have learned that being a parent means embracing the fact that nobody else in this world will advocate for your child more than you. Being Caleb’s mom has given me the confidence to speak up even when everyone else is silent. My child is almost 7 and has been diagnosed with autism and ADHD; and neither of those diagnosis’s would have happened if it weren’t for me. I had doctors and teachers over the past few years tell me things like “he’s probably just an active hyper little boy” or “he’s too smart to have autism”. Every single evaluation and meeting happened because I set it into motion; resulting in him being more than “just an active little boy” who “is very smart”. When you have a child like Caleb who is high functioning on the spectrum, it is very easy to look past the behaviors and see the intelligence as a way to sweep it under the rug. As his mom however, what I always saw was a little boy struggling to fit into the world and failing to comply to the social and emotional norms for his age. I’ll admit I too thought he may grow out of certain behaviors, but in the end I never saw that happen.
I am saying all of this because I think it’s important for all parents to hear this message. I feel that many parents are waiting for their child’s daycare, school, or doctor to “sound the alarm” on testings or conversations regarding their child’s developmental needs. My advice is to always put your child’s needs as an urgent priority, verses waiting for someone else to tell you what to do and when to do it. If I hadn’t taken my child out of his school, contacted the new school for an IEP evaluation immediately, set up an appointment with a specialist, requested an ADHD evaluation, requested an autism evaluation a year later, and then called ANOTHER meeting to request an IEP again..... Caleb would have none of those things to date and would have no diagnosis of any kind.
I know this may sound all very “me me me”, but this is about whoever is reading this that feels that this resonates. I am very grateful for all the professionals that have guided our family over the past few years, helping us navigate unknown territory. I just can’t stay silent though about the fact that if it weren’t for my mommy intuition, Caleb would be steps behind where he is now. Why? Because no one no matter how much they may care for my child, will care more than me about his growth and developmental needs. That’s how it should be! Our children may need some professional help, but they first and foremost need parents to get them there. Also - I am writing this from my perspective by telling my side of the journey, but my children have the worlds greatest dad that has shared my passion for Caleb and supported everything we have done for him. WE are his biggest advocates. If you aren’t your child’s number one advocate, they will sadly receive “second best” to what they really need.
So if you are a parent and you see delays or issues in your child that haven’t been mentioned or addressed by an educator or doctor, do NOT let that stop you from seeking out help and advice or even an evaluation. Look where that got me! I know it’s hard. I know it’s scary. Trust me I know. Just remember though, that God gave your child YOU very specifically to be their parent. So take the job seriously! It’s not everyone else’s job. It’s YOUR job. Also, I know I talk openly about Caleb a lot, but we are just as much there for Alanna. We are already talking about getting Alanna some extra support in certain things... you know, all the things no one else is seeing and telling us to do.
At the end of the day, this is not about special needs or a diagnosis. This is about stepping up and being the parents our kids need in a world that is constantly going to try and tell our kids who they are. Aside from God, we should always have the biggest say in that! I am perfectly okay with Caleb having the labels ADHD and autism because it will help him and all who love him to understand him better. He has mom and dad to thank for that.
Show up for your kids. I told Caleb’s educational team after he got denied an IEP, that “I was okay with him having just a 504 if that’s what helps him... until it doesn’t. If I feel at any point that it doesn’t, you will see me back here calling another meeting.” Well I did exactly just that, and it got him an IEP! I am lucky that Caleb’s team is actually AWESOME. I can’t really complain too much there since I have heard the horror stories about people having to literally fight with the school system to get their child services. If that is you, keep fighting! You got this.
If you aren’t yet a parent but hope to someday be... buckle up and take notes. I can’t imagine if I had solely let doctors, teachers, and even friends/family be the main source of information or voice in understanding my child. Be a warrior for your children, a force to be reckoned with. The world is messy, the world is confusing, the world is frustrating. Keep your voice in the fight always. Your voice matters most.
