Going Along With The Flow...or not.

Most of us just ‘go along with the flow’ when it comes to our daily lives. We plan that we are going to have children, they are going to be healthy and beautiful. We love and nurture them, take them to their doctor appointments, get them potty trained and teach them their abc’s and 123’s. We prepare them to go to school by putting them in the top preschools, doing flashcards and workbooks and seeking out the best kindergarten teacher there is. We do their homework, pack their lunches, volunteer for special school day events, have conferences with their teachers. We have friends and family over to share our lives with, and the joys of our children. We get them involved in sports and activities, having play dates and birthday parties and put them to bed each night knowing we have done the best we know how for our precious little ones.

For the parent of an autistic child, it just isn’t that easy. You can’t just ‘go along with the flow’. There are constant battles in the autistic war. We too had a plan that we would have children and planned for them to be healthy and beautiful, but have been handed a different deck of cards then most. While we do everything that the parents above do, we also have the added duty of making sure that we are taking the extra time and steps to hope that our children absorb what they are supposed to be doing, so that hopefully they can go to a preschool and we dream that they will be able to go to kindergarten. We wish they could play on sports teams and do activities. Our kids usually aren’t the ones invited to birthday parties and play dates, and even if they are, there is added worry about behaviors, socialization and safety. We can’t dream of having friends over because our homes are full of therapists, and our families don’t get the luxury of coming to our homes to share our joys, they are too busy working on what the therapists have recommended for that day. We too have nurtured and loved our children. We too have taken them to the doctor appointments, and have struggled to potty train them and teach them their abc’s and 123’s. And at the end of the day when we pray to just allow our little one’s to go to sleep and sleep the night through as we are thoroughly exhausted, we answer the call of “Mommy or Daddy” for the hundredth time. Our little ones do not know how to let their brains relax to go to sleep. And we sit there feeling like there is so much more we could have done, never knowing or feeling we have done our best.

Each and every autistic child is different, no two are alike, which makes it that much harder to feel like you belong and have answers. You deal with such a full plate, and then you have to deal with life. Your house becomes a mess, your checkbook doesn’t balance and the utility companies are calling asking why you haven’t paid last months bill yet. Don’t dream about family outings that are peaceful and relaxing, and intimacy in your marriage becomes a standing joke. Nights are not restful, and days are filled with worry. And when you have tears in your eyes, and are praying to God and asking “Why Me?” You are reminded of that precious little one that has been a gift, and that every struggle is for them. And someday, there will be a reward. It may be a simple word or emotion, or that they have read their first book aloud, or that they have finally been invited to a peer’s birthday party and they looked just like every other kid sitting at the table eating cake, or it may be when they are graduating from high school and going on to college, but it will remind you that blessings come in all shapes and sizes. You will remember that you have been blessed.

I was thinking of all of these things on my ride home from work yesterday. I got a call from someone asking me for some guidance. I am not an expert, but I am always happy to share the steps of our journey. This woman told me about her 5 year old grandson who was low on the spectrum. They are desperately trying to get him into an autistic program like the one where I work. As of now, there is a waiting list of over 30 children and there are only 5 spots. I gave her all of the information that I could, and was surprised when she asked what would happen if they would pay out of pocket for him to attend the program? I was stunned. It is $57,000 per school year, an expense that most families could not afford, and I don’t think hers was much different than most. Her simple answer was, “we will do whatever we have to”. You see, while most of us are registering our little ones for kindergarten, she has realized that her little one most likely will not be able to attend a regular kindergarten. But, like most families of autistic children, they will fight this battle and will go on to win the war. My thoughts have remained with the family most of the day…God bless you A.T.K. and family!

It is not simple for the parent of an autistic child, and it is not fun. It is full of never ending questions and lack of answers. It is exhausting and frustrating, but in the end, the littlest things are rewarding. I tell you this not so you will feel sorry, but so you will have an understanding of the effort it takes on a daily basis. And that we view our children in the same light you view your children in. And if you know a parent of an autistic child, the next time you see that parent struggling with even the smallest task, you will remind yourself of how much that parent loves their child, as much as you love yours.

Hug your child, and hold them close. Hug your friend, so they are reminded they are not alone in their war on autism.