Autism Awareness Month

I wrote this for Heather’s Autism Awareness month on her blog www.actingbalanced.com but I thought I would post it in its entirety here (she is going to split it into parts for her blog).  In this post, I look back to what I wrote two years ago just after my son's autism diagnosis and again at the one-year mark.  I have then added my thoughts today.  I hope you enjoy reading about the journey.

Just after we found out Liam’s diagnosis (two (2) years ago), I wrote the following;

Just before Christmas I found out my son (just over 2 years old) has autism.  Ever since then I have been having a problem with coping.

1.       I know that this changes nothing about my boy.  I love him dearly and think the world of him.  It does not change the smiles, the hugs or even the cries.

2.       I know this is a positive in that now he has access to special services that will help him.

3.       I know that since it was caught young the interventions are likely to have a great effect on him too.

4.       I also know this makes my wife's life a little easier in now show knows what is going on and can deal with it (she is a stay-at-home mom).

My wife has been handling this so much better than I.  She has been reading books, talking to others and is working hard to connect him to all the agencies which will help him as well as starting to work with him.

I on the other hand, cannot bring myself to read about it or really talk about it.  Logically, I know that more knowledge would be helpful but I have a total block on it.  The real issue is that I think about how nothing in life is going to be easy for him and it makes me sad.  I am having a hard time reconciling myself with the issue as a result.  I love my boy and want to do what is right for him.  I have been told several times to just keep doing what I am doing.  That I am doing the right things.  I guess it is the powerlessness that I am feeling that really hurts.  I just wish I could wave my magic wand and make things all better (like a kiss to the boo boo) but I know that is not going to happen. 

A year later, I then wrote…

It has been a year since I first wrote about my son and his autism diagnosis. It has been a challenging but rewarding year. First, my son is now 3.5 years and is a very happy child. In the past year he has gone through a lot: 1) he started with four days of therapy a week; 2) he has since progressed to going to a half-day school program here; and 3) has adopted the gluten free diet (which has seemed to help). With all this he is still only using an occasional word - but is progressing in all of his other targets quite well. In particular his social skills have improved greatly along with his small and gross motor skills.

Some observations I have had in the year of having a child diagnosed with autism: I am surprised at how much energy he takes up. We are constantly working with him and trying to get him to do things and it is quite tiring (I cannot imagine the pain potty training is going to be). Add to that the stress of the tenure track and life has been quite interesting on that front. We still have an 11 year old as well and raising her is nothing like raising him - two very different stories to tell there. It seems that our previous parenting experience means absolutely nothing and everyday learning with him has been a real challenge. I am amazed at how many people say, 'he doesn't look different' to us when they are told he has autism. He is a very good kid but when his frustration level rises and he starts to 'head bang' or if he doesn't talk to the store lady or he doesn't like people touching him - it is amazing how many people perceive him to be a 'bad' kid or us to be 'bad' parents. There is a large misunderstanding of what autism is and what it is all about in our community. The expense of having a child with autism is tremendous. Even with a good health plan, we figure it cost us over $10,000 this year out of pocket and that is not including his gluten free diet. It is a strain on a family (we have had to give up cable, my wife has become a 'coupon queen' and no vacations this year) but it has pulled us closer together in many ways.

In total, having my son has been the best thing for me. My life really does have a new meaning. I used to think publishing five (5) articles a year was an accomplishment but now having my son play 'Connect Four' or sing 'Old McDonald' with me is now what I aim for. I have come to terms with my trading potential 'guru' status in my field to being better 'daddy' status in my home (and that was surprising hard to do upon reflection). I still often become sad seeing the struggles that he constantly encounters but happy and heartened that he takes them on with a determination and rigor.  I did not think it would be this kind of struggle but it has but with most things you have to work really hard to achieve the outcomes and successes become worth so much more.

Today, after a lot of laughs, some tears and a few bouts of anger, I am more at peace with life.  Here are my present day thoughts,  

Over the past couple of years, I have learned some real lessons.  The first is to really appreciate the little wins.  It is him using ‘I want’ for the first time.  It is him making eye contact even for those few fluttering moments.  It is being excited that he can put his own truck together.  Things that seem small to us are usually huge to him and positive reinforcement really seems to help to lead to further progress.

The second thing I have learned is that I have a remarkable amount of patience.  This is especially true when I take a step back and remember how far we have come (see the first lesson).  Interestingly, I had a student in this morning who I gave the, ‘if it was easy, you would not appreciate it’ lecture to this morning.  It is because of the struggles that the ‘wins’ mean so much.  So to keep my patience, I remind myself to keep my eye on the prize and remember that it is a marathon and not a sprint (can I get any more clichés in?). 

The third lesson I have learned is that no one cares for your kids like you do.  It is important to remember that teachers, therapists and other professionals serve multiple masters.  Yes, I believe that they do want what is best for my child but they can only do it within the parameters of their organizations.  If you really want something for your child, you have to be willing to, albeit nicely, fight for your child.  Sadly, in the therapeutic and education realms, the squeaky wheel does seem to get the oil so much more frequently.  You need to be engaged and willing to call out people when necessary.  Further, you also have to really support the ones that go above and beyond.  I hate fundraising but for my son’s teacher, I will raise whatever money she needs because I know she will maximize its benefit.  The support we deliver to her goes a long way to enhancing our son’s life.

Fourth, you have to make time for yourself and your relationship with your spouse.  It is so easy to get caught up in your children’s world even without the autism diagnosis.  Add in autism and your life can be consumed with theirs’.  When that happens, your stress level rises and causes you to not be able to be the parent (or husband) you need or want to be.  It is imperative that you take time for yourself and take time with your mate.  I have learned that having a child with autism requires a lot of balance in your life if you are to remain sane in the situation.  I am still working on this aspect and it seems to be a constant battle but I acknowledge it for what it is.  That acknowledgement alone has helped tremendously.

Overall, my life is a good one.  Three great kids, a loving and incredible wife (this is her blog) as well as a job that I could not have more of a passion for.  Have I had to make a large change in my life? Most definitely; I will not be the research guru of the field I wanted to be.  Then again, as a result of working less, I have a better marriage and I believe I am a much better dad.  I also believe that I am a better professor and mentor to my students.  Do I act balanced?  I am getting there…slowly but surely.  Did I think autism in my household would change my life for the better?  Of course not (especially at first) but over time, perhaps autism has caused my life much more fulfilling than I ever thought it could be.  The pieces of the puzzle are slowly coming together to create a beautiful picture.  When I look back to what I wrote just over two years ago and compare it to where I am today the funny thing is that I was so worried about what I couldn’t teach my son - that I never considered what he could teach me.  It is funny how life works like that sometimes.  Where I once dreaded the journey, today I have come to relish it.