I wanted to write this post because I just read an article on inclusion and why it's important for EVERYONE to understand disabilities, not just the children, parents and families that have to live with them. I am so glad that our society is moving in the direction of inclusion. I feel like we are finally starting to get it right. It is no coincidence that the name we came up with for our new nonprofit is Pathway Inclusion Center. It embodies everything I feel is important and everything that needed addressed in our community, and probably in most other communities as well. We wanted to create a place for children with or without disabilities to attend daycare, after-school programs, summer camps, therapy, and play TOGETHER. There is no reason why all of those services cannot be offered under one roof to simplify transportation and save time for parents.
Personally, my children are both doing great and making tremendous gains. Everytime I turn around they are learning something new, their speech is improving, and they are learning how to control their emotions better than ever before. They have learned how to transition from one activity to another and deal with unexpected surprises or changes in routine or schedule. I am so proud of their progress, I really am. But I feel guilty for even ever mentioning it on social media or to friends. Because I know other children on the spectrum that are not progressing as quickly or at all. They may have multiple diagnoses and therefore dealing with something else entirely. But I still find myself wanting to reach out to them and say, it's ok. We're still here for you. I'm still here for you. I am not pouring myself into Pathway Inclusion Center just for the sake of my children. I'm doing it for all the families. I remember vividly the days when my son's speech regressed and I feared he would never speak again. I remember vividly the days when my daughter got upset if I took a different route to school than usual. We had to use a picture schedule every single day to prepare her for things. She rarely connected with other children, other than her brother. I remember all of that and I remember the fear I felt for the unknown. Would they ever graduate high school? Would they ever be in a relationship? Have a family? I was unsure of everything. I am now fairly certain they will go on to do all of those things, if they choose. And that's all any parent really wants. For their child(ren) to be able to choose. Everyone should have that opportunity. But the sad truth is that some will not have a choice. Some parents will have to go on caring for their children long after the age of 18 or 22. I don't know what to say to make that seem less scary. Other than, there are those of us that are here to offer you our help. My home is always open to the families out there that need a day off once in awhile. My children will always be taught to make friends with and show compassion for other children with disabilities. Even if those children cannot talk to them, don't look them in the eye, or play with them.
We still have our struggles, but my kids have adjusted well to many situations I never would have thought possible. People still say to me they don't know how I manage being a single mother, let alone a single mother to two children on the Autism spectrum. For one, I get a LOT of help from my parents. They are rockstars. But what gives me the strength and attitude I have acquired is seeing other families struggle and knowing that could still be me. Sure I have poured myself into my kids the past 3 years and sought out the right books, doctors and therapists, etc. But other families do the same thing, for longer, and don't get the same results. I know that has to be frustrating. You feel powerless when you can't help your children. I have felt that many times before.
I am not a doctor. I can't heal the world. But what I can do is connect parents and families with the resources they need to help their children to the best of their ability. And let them know that they are not alone. That's the least I can do.