A Letter To Me

I wouldn't write a letter to myself back in high school like Brad Paisley does in his song Letter to Me, I would write one to myself 7 years ago, when I was at my lowest, when my child was diagnosed with autism.  I honestly don't remember ME pre-autism, when I was dealing with all of the normal things that most people deal with and thinking that all of my problems were huge problems.  Boy, what did I know??!!  I'm not saying that my problems are bigger and more important than anyone else's problems, what I am saying is that they are much bigger and more important than any of the previous problems that I had experienced.  When your child has a disability, well, it becomes your life.  My autism mom friends and I often comment that we would NEVER want to go back to that time in our lives and relive that stress.  I would like to be able to share with myself the lessons that I have learned over the past 7 years.

Dear Me,
It gets better.  Honestly it does.  Sorry, but before it gets better it gets worse...a lot worse.  Then, with a lot of hard work, it gets a lot better...better than you will let yourself hope.  There will come a point in your life where you are NOT thinking about autism 24 hours a day.  Don't get me wrong, it doesn't go far away, but you get some mental relief from thinking about it all day long.  You will get out again with your husband, you will spend time with friends, you will once again think about things like redecorating your home and not feel guilty because your focus is not 100% on Bobby.  You WILL get to go on a week long family vacation to the beach and Bobby will go along too and it will be a great week!!  This thing called Facebook will come into the world and you will get to visit with friends online and you will "meet" other autism moms from all over.

Bobby will mature just like other kids.  He will learn some things on his own and some things will just get easier because he gets older.  The child locks will come off of the fridge, off of the pantry, off of most of the drawers and cabinets.  You will be able to leave the room without coming back to a dozen eggs broken all over the floor or Bobby covered in shampoo, lotion, shaving cream or whatever else he can get his hands on.  There will come a day that he doesn't just pour every container of liquid soap, shampoo or anything else that he can get his hands on down the drain.

However, there are many things that he is only going to learn with a great deal of hard work and repetition.  You will be much more successful if you can get over the sadness that surrounds his diagnosis.  Turn the tv off, get off of the couch and get to work.  Your first major success will be with potty training.  Bobby doesn't really seem ready until he is 5 years old and potty training him will be the HARDEST thing that you have ever done.  You and Bobby will shed many tears together but keep at it because the rewards from him not wearing diapers or pull-ups anymore are one of the greatest gifts that you can give the both of you.  Realize that if Bobby can learn to go in the potty, he can learn just about anything.  Potty training Bobby is a process and 4 years later you are 99% there. He has worn underwear full time for over 4 years now.  Congratulations!!!

 MAKE HIM TALK!!!  He's getting it now at age 9, but if you would have forced it more when he was younger, he would be further along.  Because Bobby is NOT non-verbal, he repeats many words and has a few that he says spontaneously, DO NOT GIVE HIM WHAT HE WANTS UNTIL HE VERBALLY ASKS FOR IT!!!!!  In April 2012, you will get a great behavioral therapist who will work with Bobby 4 days a week and his verbal language will grow by leaps and bounds.  His life becomes so much easier for him, and those who work with him, when he can verbally tell what he wants/needs.  It will come and those who work in the field are shocked at his language development this late in his life.

I already told you that it gets harder.  This is the reason.....

Bobby will develop a seizure disorder and this will turn your already crazy life upside down.  This starts the medication path.  This will lead to weight gain and major behavioral problems.  You will be walking around in a fog because you just don't know what to do and you will feel so bad for your baby.  Why does this have to happen to him???  I wish I had a great plan for you on how to deal with this blow because you will know an even deeper sadness.  However, you will became EXTREMELY lucky and his seizures are well controlled by medications, even with the HORRIBLE side effects, and when he is weaned off of the meds a few years later, the seizures stay away.  Sorry that I can't give you a look into the future further than age 9 1/2 to know if they reappear.  However, you will be much more prepared if they do.

Don't stress about getting Bobby an iPad, just do it.  As of this letter, he has had his iPad for over 2 years with no issues.  He loves it and uses it everyday.  The amount of time that he spends using apps will shock you.  He works with spelling and flashcard apps the most and all independently, it is like he wants to figure these things out my himself.  He wants to learn how to read and talk just like all of the other kids.  You will also load hundreds of personal pictures onto the iPad and he will spend hours looking through all of them.  The money that you will spend downloading movies and tv episodes onto this tablet is well worth it and yes, the iPad case is awesome and a must.

Speaking of other children, the decision that you will have to make to put your 3 year old child on a school bus and send him to school is a good one.  It is much easier for him to learn the routines of school at an early age.  School will be part of his life from the get go and he is actually happier when he is at school following his very structured day.  Up to this point you are beyond lucky and grateful to have only had incredibly wonderful teachers who love Bobby very much and only want to see him succeed.  Some great kids also come into his life at school and he learns more from them at recess than he could from any video or social story.  Now that he is in 3rd grade, he actually runs off at recess and plays on the playground.  You are going to be SO PROUD!!!

Something magical happens of the summer just after Bobby turns 9, you realize that Bobby can go places.  You will spend too much time trying to make Bobby learn how to walk through stores like Wal-Mart and Sam's Club before a light bulb goes off for you and you start taking him to outdoor places.  Over this summer you will walk with Bobby on almost all of the local rail trails and he will shock you with how well he does.  You will also take him to local playgrounds and you won't have to worry if there other children already playing, he will go right in and play along side them, not WITH them, but along side them.  Bobby will also learn to actually swim.  He will jump off of the diving board and he will swim the length of the 6 to 12 ft. end of the pool.  Again, you will be SO PROUD. You will take him to a local public beach at a lake which will be fairly crowded and he will succeed. You will be much more happy, Bobby will be much more happy and Daddy will be much more happy.

 I can't let you know what will happen beyond this date, but I just want you to know that you have made it this far.  You weigh more than you would like but you are out walking every morning after you drop Bobby off at school and it makes you feel so much better.  You are in a better mind set than you have for years.  You learn how to enjoy the times that your life are flowing and you learn to not let the fear of the times that your life will ebb run your life.  You are much more settled with your role as autism mom.  Good luck with your journey.
Love, Me