"I am tired!" No...."I am exhausted!!!" Those are statements that we all say or at least feel from time to time. When you are a special needs parent though, often those words become interwoven in the fabric of our being. Instead of a feeling, it becomes a way of life. If you are one of us, then no explanation is necessary. If you are not.....then no true explanation will ever be possible. No drama...just truth.
As a parent of a special kid, you are not merely a parent of a special kid. Most of us have other children, family, home, jobs, spouses and life in general that take up a full 24 hours in our day. Add to that doctors appointments, therapies, IEP's, ER visits, surgeries, hospital stays and endless phone calls about insurance, funding and the many hundreds of changes that occur in the life of special needs and is there a wonder many of us are down right cranky, sometimes forget to shower and often times have no patience for that which we deem insignificant, unnecessary or just down right bullsh**?
Don't get me wrong, there is nothing more rewarding than being a mother to David. He has changed my life and how I see the world. He is a shining positive in my life. Seeing the world through his eyes has taught me to cherish and appreciate all that I took for granted with my other children. He has taught me strength, bravery and what it means to deal with the unexpected head on, without asking Why? He has also taught me that life is not fair, not everyone cares, not everyone knows (even if they claim to be experts) and that special needs has a learning curve like nothing else in this world.
Today I was talking to a friend and lamenting (yes, I lament at times when I am really tired), about my day yesterday. It began at 8 a.m. with my first phone call and between the 8-10 calls I had to make and return, along with hold times and the always enjoyable...."There is nothing we can do to help you," I was on the phone until after 5:30 p.m. This resulted in a migraine and tremendous frustration, as the end result was that I had no more information after 9.5 hours on the phone, than I had when I started. It was exhausting and unfortunately......just another day in the life of a special parent. Truthfully speaking, there are at least 3-4 of those kinds of days every month and just when you think you have it all figured out and are on the right track, you find out all the rules have changed and you are back at ground zero, starting all over again.
No! I am not complaining, because knowing all that I know now, if I had a chance to do it differently, I wouldn't. I am however, being honest. This is just the way life is and like anything else in life, you learn to live with it and how to make the best of it. Some days, the best is easier to find than others.
As I said, I was lamenting to a friend about the details of yesterday and she said, "You should write a book about all of this. You could really educate a lot of new special needs parents." I just laughed. As I told her.....I really know nothing that would help anyone. The truth is, none of us really do. Each child is different and so is the journey that they must take. Special Needs is a wide umbrella that covers everything from cerebral palsy kids like David with a laundry list of other issues, to physical needs, mental needs, behavioral needs, down syndrome, autism, and the list goes on and on. The needs are not all created equally and neither are the paths which child and parent have to go down to get what is best for the child. You are dealing with doctors, therapies, equipment, hospitals, insurance, schools and often because these needs come at huge financial costs, you have to be on lists for funding and both financial and medical help. All of this takes constant updating because there is constant change within the system, funding possibilities and the rules in general. It is a never ending cycle of paperwork, phone calls and often......frustration. More over, you are constantly dealing with conflicting opinions about your child, misinformation and sadly, people that are in positions that should know more than they do. In the end, as a parent, you are often left to your own devices and your own ability to research, ask questions and eventually learn to trust and go with your own gut instincts and your ability to know your child better than anyone else. It can be daunting at times........especially if you are doing it all by yourself.
Perhaps if I could give new parents of special needs kids any advice or words of wisdom it would be this: When you get that original diagnosis, don't let that limit you or your child. Remember, medical science is fluid and what is one way today may be something completely different in 2, 4 or 10 years from now. On the other hand, don't hide your head in the sand and live in denial about your child either. Many times, the earlier your child gets into therapy, has surgery and is hooked up with the right team from doctors to teachers and therapists.....that makes all the difference in the world for their outcomes and their future. Don't cheat them because you can't deal with a diagnosis.
Finally, Davids first physical therapist with Rainbows and then his amazing team in early childhood education, both told me the same thing, and this was the best advice I was ever given. I was told: "You are your child's advocate. You are his voice and no one will ever know your child better than you. You must fight for your child at every turn and never let ANYONE (doctor, teacher, therapist, etc) ever tell you differently." They are words I grabbed onto like a drowning woman on a sinking ship. I took them to heart and have lived by them ever since. However, living these words has not always made me popular or won me friends but I have always known that I have been true to my son and his needs and that is all that is important. I would in fact say, that this is the one static fact in all of special needs. Regardless of your child's needs.....these words should be considered the foundation for all special needs parents.
No, there will be no "How to be a Special Needs Parent" from me. The fact is, there is no straight line to the finish. As I said, every road is as different as every child. What I will say though, is the next time a special parent seems as if they are a bit cranky, you might figure they have been fighting some lengthy battle for their kid, so maybe cut them some slack. If their hair is not done and they smell like they took a baby wipe bath, they probably did. Just know that bathing was probably so far down on their list of priorities that it simply became expendable that day. And finally.....if they look, act or even say they are tired.....know that it is true and just be thankful that you will never know the kind of tired of a special needs parent.
