What I Wish I Knew When I First Started Out…

What I wish I knew when I first started out on this path…

Early intervention can never hurt your child, it can only help. If your child is just a late talker, great – a little speech can never hurt. Get the evaluation.

Pediatricians plays down your concerns, but your instincts are screaming at you. Get the evaluation.

Family and friends are gently giving you cues, but you are in denial and yes angry. Get the evaluation.

You are afraid of your child being officially labeled, except they are being labeled by family, friends, teachers. Get the evaluation.

Get the evaluation.

Why me. Why us. Why is this happening? Oh the places you will go and the people you will meet. Your child is about to open an entire new world for you and make you a better person. They will touch lives, and you will get to witness that. You are blessed. You don’t see it now, but I promise you – you will not only see it, you will FEEL it.

As much as you want to believe that the district wants to collaborate with you in good faith, be up front with you about your child’s struggles, provide your child with all the tools and services they need to achieve success with their programming? It most likely will not happen. You won’t see it at first, as you are overwhelmed, trusting, and want to believe what you are being told. However, you have to adopt a philosophy that actions speak louder than words, everything has to be in writing, and show me the data, show me the law, reg policy, walk me through how that IEP will be implemented – how will data be secured, who is responsible for securing that data. Ask questions and don’t stop asking questions until you, mom or dad, feel comfortable with the answers.

The most important person at an IEP meeting is you. SCOTUS fiercely protects the rights of parents as team members in IEP meetings. Your concerns are important. Your questions are important. Don’t allow them to EVER make you feel otherwise.

No one on this planet knows your child better than you. No.One.

The most important advocate for your child is you. You want to make sure you are more than qualified for the job, so start reading. Back in the day, parents had to get babysitters and go out to attend workshops to learn about advocacy. Now everything is available at your fingertips online. Start surfing the web – it’s all there, start reading mamas.

Join parent groups, start asking questions. No question is a stupid question. If you don’t know the answer, the chances are there are many others who don’t either. Take the plunge and post a question. Parents who are further along on their journey can share their knowledge and experiences. I had some pretty amazing parents help me, and I pay it forward by helping others. As much as you feel you know so little now, you will one day be that parent helping others. Always be that person. Always share your experiences and knowledge to a parent who you meet along your journey. Always, always pay it forward.

I don’t care how high functioning your child is, life skills are what will make them independent when they are adults. You start working on those when they are in preschool, not high school. Hygiene, self-regulation, community skills, and of course social skills. Great academic skills translate to absolutely nothing if they can’t handle social situations, can’t interact with people appropriately, don’t understand social cues, don’t have good hygiene, can’t regulate themselves, and cannot work in a team setting.

Which brings me to GROUPING. Adult services (should your child have significant needs) is grouping. Your child needs to be able to show appropriate ready and attending skills in a group. They need to stay with their group, walk with their group, take directions from their group and process/implement those directions in a group. They need to tolerate being with others in a group setting. While you will fight for 1:1 support, you MUST work in those critical grouping skills starting as young as possible.

Behavior is communication. It truly is that simple. If your child can’t functionally communicate their needs, and they are given no means to do so? They will develop behaviors out of frustration and to gain attention in the hopes you will figure it out. You will find that you are really good at figuring it out, and probably know what they need before they do. Give them the gift of communication as young as possible. Your child is never too young, or too low functioning for a communication device. There is nothing that can be learned by a PECS system that cannot be also learned on a communication device. Demand that.

Behavior is communication for higher functioning, verbal children also. Get the evaluation.

Behavior can also be an underlying medical condition. Low functioning/severe needs children may develop behaviors and self-injury over something as simple as a hangnail on their toe, something they are wearing is uncomfortable, a toothache they can’t tell you about. If behaviors come out of no where, eliminate medical reason as a possibility.

There is so much more, but the most important thing I wish I knew, or I wish I realized/embraced when I first started out on this path is…

I DON’T CARE WHAT ANYONE THINKS OF ME.

You don’t like me? I don’t care. Teachers, sped directors, SLPs, doctors, nurses, anyone – they don’t need to be your friend. You don’t need them to like you. You are advocating for your child. That is far more important than anything. Full stop.

The couple in the store staring at your child while they are struggling with the transition of leaving without getting the toy they wanted?? Not even giving them a second of caring what they think. That is all on them, not you.

Free yourself. You will be infinitely happier once you let go that what other people think of you matters.

Be free mamas.

Written by, Julie Kelley

Julie is a mom to three incredible boys with autism.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.