I have a longer list than what follows here, but these are the big things that I wish I had known at the outset of our autism journey. I hope they are helpful to you, and I hope they make a small difference in your journey with your child.
Become the Expert
I realized early on that we had to become experts on my son and his autism. I read a number of books to try to study up and tried to get my hands around his symptoms. I did this, not because I was trying to become an expert on autism or any of the various therapies, but because I was trying to become the expert on my son. I knew him better than any therapist that would come along would know him, but I did not know his autism yet. I had to be able to talk to the therapists in the context of their field. I had to understand their approaches and their strategies to even have any idea of whether what we were doing was purposeful and helping him. There is no playbook for all this. It’s your call to develop a plan and decide what is best for your child.
Working with Therapists
I will first say that on the whole, we have been extremely blessed with the therapists that we have seen over these many years. With that said, working with the various disciplines (speech, occupational therapy, social therapy and ABA therapy) has still had its ups and downs. I cannot stress enough that communication is so key. In fact, I would highly recommend communicating to the point that you feel like you may be over-communicating. Sharing input on your child like what they did over the weekend or where you had success getting them to work on a goal can give that therapist some great intel. They may use that information to work on social goals or use them in an exercise in therapy. Don’t be afraid to raise your hand for an update on the therapy plan, where your child is on goals, or what the plan is over the next six months.
Long Plateaus & Bursts of Progress
I can only speak to our journey, but all throughout our years of therapies, we have had periods of long plateaus in skill progression. Each and every time I would start to look around and think, “He’s not progressing. The therapies are stale, and they must not be effective anymore,” out of nowhere, he would do something or say something that would surprise us, and we would have an explosion in skills. I’ve viewed the plateaus as if the brain is training up for the next evolution of growth and skills. And of course, the child’s willingness to engage and give skills a try can also be a factor. Encouragement, a positive attitude, and a loving push every now and again can be helpful.
Connecting with your Child
I learned early on that I had to meet my son where he was, and that I could not try to push him too far past where he was comfortable. I learned that I had to talk to him in a way that let him know that I understood how he was feeling and what he was trying to tell me. I had to meet him where he was. If I didn’t do that, then there was no way that we could walk forward together. He had to know that we understood, that we loved him, and that he could trust in us. Early on, these kids can be in full defense mode with sensory symptoms, edgy, agitated – like a live wire. They have to know that they are safe and protected to the extent you can keep the world from bombarding them. Talk to you child, really listen to what they are saying, and be patient with them.
Social Isolation, Family, and Friends
One of the hardest things about being an autism parent is the fact that social interactions and many other environments are typically difficult for the child. Birthday parties, school functions, attending church, community parades, sporting events, festivals, and even just eating at a restaurant can be terribly difficult for a child. So many times, we would have to bow out of events or gatherings because it would just be placing my son in an untenable situation. It felt cruel to me to even entertain taking him somewhere that I knew would be overwhelming to him. The social isolation can be tough even with friends that try to be positive and supportive, and it can be worse with family members that do not seek to understand or engage. I know that autism has impacted the growth in friendships and relationships, and my only advice here is to do the best you can.
I’m going to get autism real talk on you here: this stuff is hard. It’s exhausting. It’s scary and lonely. It’s also exhilarating and exciting, and it will show you the best of people. It can be an emotional roller coaster trying to handle all the demands of therapies, manage daily life, run a household, hold down a job, raise the rest of your family (if you have other children), keep your marriage together…..the list goes on. You have what it takes to do this. God chose you to be an autism parent. God made your baby so wonderfully amazing and full of unique gifts. Going through this will make you an even better parent than you ever thought you could be or set out to be. You will rise to the occasion, and you will be okay. It’s okay to walk outside and take a moment to cry after a meltdown. It’s okay feel that ache in your heart after a hard day of falling short of goals and wanting so badly to take all of this away from your child so they don’t have to deal with it. It’s okay to be frustrated and angry for a moment. It’s okay to be scared; we are all scared. Take a deep breath and dig deep. You are doing great, and you got this!
Originally from Louisiana, Betsy McLean relocated back to Memphis 10 years ago after living in Jackson, MS and Shreveport, LA for a number of years. Rhodes College originally brought her to the Bluff City, and ever since her college days, Memphis has felt like home. Betsy is a Managing Director in Institutional Fixed Income for Raymond James, and she has practiced in the field of fixed income for more than 20 years. She has been married to her husband Kenneth for nearly 22 years and they share four amazing children: John(11), Jim (10), Michael (4), and Maggie (2). Betsy is active in her Catholic faith and works in the Children’s Liturgy ministry. She has always loved children, but having a child on the autism spectrum transformed her from a general child fan to an enthusiastic special needs advocate. She loves to encourage and support families and children living on the autism spectrum and is a persistent advocate for early intervention.