Autism comes in so many shapes and forms, so each parent’s experience is different. But there’s a commonality in the experience of most parents of autistic kids: life as we knew it is over — and this is true of any developmental differences that someone’s child might be faced with. That’s why my husband and I never shy away from helping or guiding people whose children were newly diagnosed — we know that having a support system is key to navigating the all challenges and beauty that come with special needs.
We all have a vision of what our children’s lives will look like from the moment we are expecting them (if not before). They’ll go to school, all the way through college; they’ll have a fulfilling career, marriage and family…. So when our first son was diagnosed at two years old, I had all kinds of questions. Will he grow out of it? Will he get married and have children? After 14 years the answers are now clear (No, he won’t grow out of it, no, he won’t marry or have children). But ultimately it is “happiness” we all truly want for our children; and that comes in so many forms.
Here are 5 things all special needs parents need to know.
1. It gets better. Not necessarily because your child will improve, but because it will never be as shocking and new as it is when you first receive a diagnosis. In fact, you’ll eventually have a plan in place, and you will have teachers and providers who will understand your child. After years of Applied Behavior Analysis (ABA), speech and Occupational Therapy (OT), my son can sit at a desk or table and learn. Though we also know that every once in a while, he must stand up and dance across the room. So when he’s really enjoying something and comes flying across the kitchen before going back to his seat, we don’t really notice anymore. In other words, it gets better because your attitude changes, your gratefulness for what your child CAN do will eventually outweigh what he can’t; and dancing across the room one day won’t seem so strange anymore.
2. Don’t compare. When your child starts preschool or any sort of group activity with other children of different abilities, there will always be the temptation to compare deficits and progress. No good can come of this! Every child develops skills at different rates. You will drive yourself crazy if you are keeping score. So focus on your own child and his strengths and find a way to use those strengths to make progress in other areas. My son loves to cook (and eat). So for years, his speech therapists have used cooking to teach language; and his ABA therapists have used it to teach compliance…. They took his skills and passions and made them work for him!
3. You can’t try every therapy, drug, and diet. I mean, you can….but if you do, you will never really see what is working. Find your balance of researched therapies and experimental ones. But remember to be skeptical: beware of practitioners who pray on desperate parents who will try anything and of any treatment that promises to “cure” your child of whatever it is they have. If there were a cure, you would know about it. Try to be practical and don’t rush. It can feel like you need to get it all in while your child is still a baby, but likely, you have a long road ahead and will know the right time to introduce different interventions.
4. Work to have a good relationship with your school and therapists. While you clearly need to be your child’s biggest advocate, upsetting the teachers, therapists and any other aides who spend so many hours each day trying to help your child won’t get you anywhere. You can almost always find something nice to say before you launch into the many complaints you may have. My husband always made me pick up donuts or pastries before our annual IEP meetings. I thought it was silly, but disagreements are always better settled over sweets. It shows that even though you may want to challenge your child’s team, you still appreciate their effort.
5. Surround yourself with people who get it. This is probably the most important and the reason we started Wolf+Friends app, an app that helps connect parents who have children with special needs. Having a child that is not typically developing can be extremely isolating. Parents feel like suddenly their friends who have neurotypical kids just “don’t get it.” It is imperative to have at least one friend you can be honest with about your child and your feelings about your child — someone other than your partner! Special needs parents have an instant connection and a secret language of inclusion and paras and triennial evaluations. Your other friends don’t know what these words mean. Find someone who does.
Gena Mann is the co-founder of Wolf + Friends, a modern lifestyle app for moms raising children with special needs such as ADHD, learning differences, developmental delays, anxiety, giftedness, mental health issues, sensory processing issues, down syndrome, and autism. Download the app for iOS here.