Empowering Parents and Guardians of children with Autism: My Story

It's July 2012, and I'm a new mom. My preemie baby was born at just over 2 pounds at 28 weeks and needed NICU (Neonatal Intensive Care Unit) care. I was having a hard time as it was trying to navigate being a new mom, low milk supply, worried about my new baby being so little, born so early, and not having enough of his mother's milk, and now I may need to use donor milk. He is already a preemie fighting just to survive! At this point, I'm feeling helpless and less than. Now, I have a preemie and have all this information being thrown at me about some of the medically fragile things I can expect from having a preemie. Though none of it prepared me for Autism. Almost a year into my son's life, going through all of his milestone check-ups, his doctor mentioned an evaluation. Just a simple "he should be evaluated, it seems he has not reached some of his milestones", and that's where my story began.

I switched doctors at this point to ensure a second opinion, not because I didn't believe her, but because I felt like there should have been more of an explanation. Something more than "he should be evaluated". The new doctor's office was a lot better, scheduling an evaluation and giving some direction on the possibilities of developmental delay and some of the things I can expect next. So we see a Psychologist who gives my son his diagnosis. I get a little bit more insight at this point, but of course, I still don't quite understand what is happening. Nothing to do next but to inquire with my trusted friend Google. Of course, I ended up going down a rabbit hole of information. Needless to say, there was crazy information, some good, some bad, some made me hopeful, some made me not. I still didn't know where to start with helping my son. It was like too much information, but not enough at the same time. There was no simple answer, and it took me a while to find out that there was no simple answer because there is a "spectrum" of answers. The starting line is not the same for everyone. Therapies are not the same, and school classes are not the same. Who knew there was such a thing as a mild/mod and a mod/severe class in special education? I thought all special education classes were the same. This is when I learned to take the information I've read and do what I think is best with some help from professionals, but ultimately taking the lead on what I think works best for my child.

ABA Therapy (Applied Behavior Analysis), Speech, OT (occupational therapy), and PT (physical therapy) are the main things that were thrown at me almost immediately. Of course, I'm like holy crap. What in the ....? That's exactly how I felt. It took a while to digest all of this. I had even more questions. What do these things do? How do they help? Will they cure him? How long does he need this? How long are these therapies? Then there were other questions I had to ask myself, like How do I pay for all this? Who's going to take him to all these therapies? And that's when I really had to have a one-on-one with good old Google. Still not knowing everything I know now, I had to figure it all out. The professionals really didn't have all the answers. The answers to my questions came in bits and pieces. Things like “check out this place”, or “you can talk to this resource”, but there was no direct guidance it was more like "here's where you can start, now do your homework" which I didn't mind, but of course by this time I'm like “haven't we been through enough”?, can I just get a cheat sheet sheesh!

Finally, after a few years, it all made sense. A few years of learning the system, talking to professionals, working with schools, learning things from Facebook groups, and state entities. It was all this combined and all the information I collected and pieced together from the half answers I'd find here and there. I had to share a synopsis in the hopes it helps someone in less time than it took me to figure it all out.

So here it is:

Autism spectrum disorder (ASD) is a neurodevelopmental disorder that affects a person's ability to communicate, interact socially, and understand the world around them. If you feel like your child isn't hitting those developmental milestones, it's best to get an evaluation done by a medical professional to obtain a diagnosis as soon as possible. Getting the diagnosis is the first step in getting your child any help they need, and the sooner the better. Early intervention is key here. Your child may benefit from therapies depending on their need. Most states have programs to help cover the cost of care. Some states have multiple state entities involved in helping with care, so check with your state first to get all of the state resources. Things like early intervention care for littles 0-3 years of age, where the state connects you with a worker/coordinator who checks on progress, offers therapy supports, and at times respite services, to name a few. Some states have pre-school programs free of charge for your child. Your child has rights that are protected under laws like the Individuals with Disabilities Education Act (IDEA).

Your child will likely have an Individualized Education Program (IEP) once they start school. That program will likely have some therapies included in school if it's deemed that those therapies could help your child. OT, PT, and Speech are the therapies typically offered in school, as these can directly enhance your child's learning. Your IEP is typically done at least a couple of times a year, so be prepared for those hour-long meetings with several school officials. School transportation is also something that is offered to your child at no charge. These day's depending on where you live, your school may or may not provide bus services, and they may charge for those services. It's important to know that this is something that should be offered to your child at no cost. Also, don't always take the school's word for what is put into your child's IEP if you feel like your child needs more or less fight, as you are their #1 advocate. Speaking of advocates, you may need a professional advocate for your child from time to time. Don't be afraid to ask for that help! One more thing to note for those who are concerned about the financial piece of things, because a lot of parents and caregivers are challenged with having to quit a job to stay at home with their child because maybe they are medically fragile, or maybe they have child who elopes, or hurts themselves or others, whatever the case may be, please look into two things. First, Social Security could be an option if you and your child qualify. Second, some states have programs that allow parents to be their child's paid caregiver. Please look into this option. States like California, Arizona, and Colorado, to name a few, have these types of programs. Now, they all have their own rules, so keep in mind that the type of care one state says they pay for, another may not. Lastly, take care of yourself and your mental health, as things can get challenging at times. Just remember you're not alone and you have support, you just need to ask.

Pro Tip: Keep all records electronically and organized (at a minimum, have a medical folder and an IEP folder and use dates for your IEP) via a drive or in the cloud if you're more comfortable with that (diagnosis, IEPs, doctor notes, etc.). Trust me, this is a lifesaver!