It’s been eight years since a team of therapists from early intervention diagnosed my oldest son with sensory processing disorder (SPD). Before that evaluation I had never heard of sensory processing disorder or the acronym SPD. At that point in my life, our family life seemed so chaotic. Most nights I would get into bed feeling utterly exhausted. 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 being like any other typical fifth-grade boy — who loves to talk. (My daughter says he’s 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 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 our children need is for one person to believe in them. I always felt 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 and block out all the negative comments from other people who don’t understand.
Remarkable changes will happen. Believe that it’s possible. When you believe, you begin to take action. When you take action, you bust down those walls. 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 in your intuition. We intuitively know when 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 members can lead us away 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 who 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. There are people out there, and they will make your life so much better.
It’s also extremely important to surround yourself with people who understand you and what you’re going through. There are countless families all over the world going through the same situations you’re going through. You are not alone. You are amazing! You can learn valuable lessons through those people. If you’re having problems finding them, 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. 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 of 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: parents of kids with SPD, therapists, teachers and doctors. Families who have been through it have learned through lots of trials and errors. Ask them what they’ve learned.
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 special needs, we feel guilty taking time for ourselves. It can be a challenging task to be a parent of a child with SPD. Taking time for ourselves allows us to feel refreshed and recharged, so we can handle the roller coaster 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 they would 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’re doing and don’t be afraid to get silly. It will help them learn to trust this sometimes 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. I have more patience with him. This is why it’s extremely important to surround yourself with people who understand your child. It might seem like they’re a bad child and misbehaving (especially in school). If you have someone who understands them, they’ll 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 naysayers. And many of them have said that the naysayers have turned out to be people who are closest to them — family and friends.
When my children were a lot younger, I received a lot of unwanted parenting tips from total strangers in the grocery store, at the mall, restaurants and public restrooms. It was tough. It’s especially tough when it’s people who are closest to you.
I’ve found 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 and 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: 11. 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 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 the basketball, baseball and football team. He has tons of really great friends. I’m not saying all of this to brag. I’m saying this 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 did all 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’re 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!