It’s been eight years since a team of therapists from early intervention diagnosed my oldest son with sensory processing disorder. Before that evaluation, I had never heard of sensory processing disorder or the acronym SPD. At that point in my life, my family life was so chaotic. Most nights I would get into bed feeling utterly exhausted and defeated. I felt hopeless!
Today, our world is totally different. My oldest son has gone from severe SPD with a major speech delay to pretty much like any other typical fifth-grade boy who loves to talk. (My daughter says that he is making up for those four years he didn’t speak.) My youngest son was also diagnosed with SPD when he was 18 months old, and today he no longer exhibits symptoms.
In the past six years, I have talked to thousands of families from all over the world through my nonprofit, SPD Parent Zone. A majority of those families are just starting out their journeys and feeling the same hopelessness that I had felt after my son was diagnosed. I started SPD Parent Zone so I could make it a little bit easier for those who followed in my footsteps. I wanted to provide them with answers and hope. Here are lessons I’ve learned that I share with those families:
1. Believe in your child.
All that our children need is for one person to believe in them. I always felt that if I didn’t believe in my children then no one else would. Sometimes it’s going to be very hard to believe, but keep on believing. Even if your situation looks extremely hopeless, continue to believe. Believe in their diagnosis, not their prognosis. Believe they are more than their labels. Keep pushing forward, blocking out all the negative comments from other people that don’t understand. Remarkable changes will happen. Believe that it is possible. When you believe, you begin to take action. When you take action, you bust down those walls. The most important of all — when they see you believing in them, they will begin to believe in themselves. That’s when the miracles happen!
2. Believe in yourself.
Always trust your intuition. We intuitively know that something just doesn’t feel right with our children. Sometimes we talk ourselves out of it, and other times well-meaning people like doctors or family can cause us to stray from our intuition. No matter what, always trust in that feeling. The doctors and teachers are experts, but you are the expert when it comes to your child. No one knows your child better than you do. Trust in that and act on it…the sooner, the better.
3. Surround yourself with people that understand your child.
This is a biggie. I’ve found the saying, “it takes a village to raise a child” to be so true. Finding that village can sometimes be very hard, but if you keep searching you will find them. It took our family a couple years to find the right school and team of people for our children. When we found those people, our children began to instantly thrive. These people are out there and they will make your life so much better. If you are having trouble, check out the STAR Institute’s Treatment Directory for a list of the experts who live in your area.
It’s also extremely important to surround yourself with people who understand you and what you are going through. There are countless families all over the world going through the same situations you are going through. You are not alone, and you are not crazy; you are amazing! You can learn valuable lessons through those people. If you’re having problems finding these people, please contact me anytime. I’m more than happy to help you find them.
4. Never give up.
Some days, my kids took two steps forward and 10 steps back. It was really frustrating, and I wanted to give up many times, but their therapist told me that regression is all part of the process. Focus on how far you’ve come, not how far you have to go. Keep pushing forward a step at a time. All those small changes will turn into big lasting changes in the end. Nothing will get better if you don’t work at it!
5. Research, research, research.
Knowledge is power! Try and learn as much as you can, so you can understand your child and help them get better. I spent endless night after endless night researching SPD online and through books. It can be really overwhelming at first. A great way to learn is by asking the experts, including parents who have SPD kids, therapists, teachers, and doctors. Families who have been through it have learned through lots of trials and errors. Ask them what they’ve learned. It will save you some errors. View STAR Institute’s Research Page and Library.
6. Make yourself a priority.
One of the hardest and most important things to do is to take care of yourself. As a parent of a child with a special needs, we feel guilty taking time for ourselves. It is a rigorous and challenging task being the parent of a child with SPD, and it can suck your energy dry. Taking time for ourselves allows us to feel refreshed, recharged, and able to handle the rollercoaster of emotions and be present for our family. It is not a selfish act. It is a necessity.
7. Get into their world.
My daughter taught me this extremely valuable lesson early on. Whatever my son was doing, my daughter would be right beside him doing the same thing. When my son was younger, he loved to spin. My daughter would stand right beside him and spin too. Every so often, he would look over at her and they would fall on the floor laughing hysterically at each other, then get up and do it all over again. She went into my son’s world and pulled him out. Follow your kid’s lead, do what they are doing, and don’t be afraid to get silly. It will help them learn to trust this scary world.
8. See the world through their eyes.
By putting yourself in their shoes, you become much more understanding of their feelings and needs. I just couldn’t understand why my son was such a picky eater, hated his fingernails clipped, screamed when we would wash his hair, and screamed when I flushed the toilet. It all made sense when I learned about SPD (pun intended). It helps both of us when I look at the situation through his eyes. It gives me more patience with him.
This is also why it’s extremely important to surround yourself with people who understand your child. It might seem like they are a bad child and misbehaving (especially in school). If you have someone who understands them, they will be able to give your child the tools they need to handle the situation appropriately.
9. Don’t listen to the naysayers!
Pretty much everyone I have talked to has spoken about these people. Many people have said that these people are those who are closest to them, like family and friends. When my children were much younger, I received a lot of unwanted parenting tips from total strangers out in public, in the grocery store, at the mall, at restaurants, in public restrooms. It was tough. It’s especially tough when it’s people who are closest to you. I’ve found that the people closest to you are trying to be helpful, but they just don’t have the correct information. Don’t worry about what they say! You have to believe in yourself, believe in your child, just keep moving forward, and ask the advice of the experts.
10. Be thankful.
Concentrate on the things you do have, not what you don’t. Whatever you focus on grows. Focus on the positive and the positive grows; focus on the negative and the negative grows. No matter what your situation, there is always something to be thankful for. Just think: There are many people who would love to be in your situation. Be thankful for all your blessings.
BONUS: It does get better, and there is so much hope!
For about the first year after my son was diagnosed, every doctor and therapist we went to said that he was the most severe case they’d ever seen. He was kicked out of preschool, all the baby classes, and different sports teams. I was terrified for his future and felt so hopeless. Fast forward eight years — he’s been at the same school for the past five years. He plays on basketball, baseball, and football teams. He has tons of really great friends. I’m not saying all that to brag. I’m saying that because I never ever thought any of this would be possible.
After his diagnosis, my hopes and dreams for him were to just be able to eat more than three foods, sleep through the night, and be able to speak. I feel my son is so successful today because we do all the 10 things above. I’m definitely not perfect and neither is my family. We have good days and bad days. It’s taken a lot of work to get here and we are still growing each day. I say this because I know that if we can do this, then so can you! I truly believe that. You got this!
“Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that he is exactly the person he is supposed to be. And that, if you’re lucky, he just might be the teacher who turns you into the person you are supposed to be.”— Joan Ryan, The Water Giver
October is National Sensory Awareness Month. Visit STAR Institute for SPD to learn more about how you can spread awareness.