The Blessings of Jake's Autism (written April 5, 2010)

I am the mother of a child with autism. When I was a little girl playing with my babies and pretending to be a mommy and dreaming of the days when I would finally be a parent I never pretended to be the mommy of a child with a disability. Fast forward to adulthood and that is exactly where I found myself. At first, like most mothers, I was completely devastated. Over time, I gradually learned the blessings of autism. And, of course the biggest blessing of all was crawling all over me with sandy blonde hair and dark green eyes.

I’ve learned so much over the past 5 ½ years. What I initially saw as a brick wall to be beaten down with every fiber of force in my body, became hurdles and challenges to jump over one by one to help minimize the hurt in my son’s heart throughout the course of his life. All people navigate a course of self-discovery as they enter in and exit out of relationships with people. Throughout that course all people have times of joy in those relationships and times of heartache. I knew that relationships would be my son’s biggest hurdle in this life and my goals for him quickly became to develop skills one by one to help minimize the heartache. Not to “fix” him. To borrow a line from a dear friend, “My child isn’t broken; he doesn’t need to be fixed.” This journey is teaching me lots of things, and a lot of what I am learning is that autism is full of blessings.

I have learned to trust my instincts. I used to be the kind of person that was such a people pleaser, that cared so much about what other people thought of me. Autism has taught me to not worry about the praise and criticism of others but to join my son outside of the box and do what is in the best interest of my son, myself and my family. I have learned that it is sometimes a very good idea to make decisions that are the “unpopular” choice to do what is right for us. I’m getting rather used to making unpopular decisions and taking the “alternative” or “never before blazed” path. It has become comfortable for me because I see the benefits of the decisions I make.

I have learned to trust my children. I used to live a rollercoaster of highs and lows depending on how Jake’s progress was going. If he was moving like lightning I was flying on a cloud. If he was in one of his “one step back moments” I was practically sinking into a depression. Finally, I learned (with the help of Jake’s therapists) that every time he was taking a step back he was preparing to take 2 or 3 or 4 steps forward. After seeing this pattern for a while I began to trust Jake more that he was not slipping away from me, but just backing off to process his new skills. This also translated to Lydia who has had some articulation and sensory issues. I do not worry about her….not because I don’t care….but because I trust her and know she will continue to make progress.

I have learned that the man who I have loved since high school is not only my partner, my husband, the father of my children and my best friend, but, that he is also my co-pilot on this navigation. He has always been there to listen to my ups and downs, to offer advice relating to Jake and his therapy, and to take the children when I am maxed out and need some me time. The relationship between Craig and I is the blessing that started all of this and it is the blessing that will be present long after our children are grown and raising families of their own.

I have learned the blessing of excellent therapists. We have had many therapists in and out of our home and lives over the past 5 ½ years and almost all of them have been excellent. We have been blessed by truly caring and intelligent people who have made an enormous difference in our lives. Without their knowledge and patience I have no idea where we would be today. We’ve had therapists from Los Angeles, Chicago and many that are local. All of them have been a blessing to us. Most of them we have moved on from as therapists but every one of them has left their “stamp” in our lives. Many of them remain in our lives as our friends. To accompany this blessing is the blessing of our ability to afford these high quality private therapists for our son. We know that this is not something that many families can do and we are very thankful for our ability to do so.

I have learned the absolute blessing of taking nothing at all for granted. That your child calling you “Mama” is not a “given.” That it is, in itself a miracle from God. I have experienced many miracles and that have taken many forms, from hearing “Mama” for the first time at 2 ½ years old, to my first conversation with my child, to the first time he snuggled in bed with me and told me “I love you” entirely from his own heart, and the first time there was a knock at the door and it was a neighbor child wanting to know if Jake could come out and play. Along the same lines, I have experienced the blessing of being in complete awe of Lydia’s neuro-typical development. If it were not for Jake, I would have surely taken her typical development for granted to some extent, not realizing the miracles every step of the way.

I have experienced the blessing of my son realizing in some detail his strengths and weaknesses at such a young age and appreciating that I am his partner in this journey. He knows that we are the “Jake and Mom team” and that I will help him through the muddy waters of life and teach him what he needs to know so that he can gradually become independent in the give and takes of relationships.

I have experienced the blessing of watching our neuro-typical daughter be Jake’s best therapist without even realizing it. She looks at him through her almond shaped brown eyes and sees no disability. She only sees her big brother. She cuts him no slack and holds him to high standards. Lydia, with her personality and unconditional love for her brother is an enormous blessing.

I have been blessed by autism making me a stronger woman, a more patient mother, a more solid Christian, and a more thankful and appreciative wife. Everything that comes out of my mouth and every action that I take is observed by my children and my little apprentices see that as the way to speak and behave. I am not perfect by any stretch of the imagination, but I am overall a much more composed person than I used to be. This is, of course, very important for all parents and children, but with a child who can tend to be very absolute, you have to absolutely always be trying your best or he will call you on it.
Most importantly, I have learned that even at times when I feel alone in this journey that I am not. That I have been blessed by the arms of Christ wrapped around me and holding me up when I feel like I am going to fall. That He is my strength and my second by second partner in this journey.

Autism has blessed my life in so many ways. I can honestly say I would not trade it for the world. It is a part of Jake, it is now a part of me, and it is a part of our family. Without it, we would not be the family we are today full of these special blessings.

Broken Banana Love

My son has autism. 

As long as I've known that, it is a hard sentence to type.  It gets to my core and stings every single time.

When he was six months old I said to my friend, "If I didn't know better, I'd think he has autism."  Later, at 15 months, I knew for sure.  By 16 months he was in therapy.  And, by 2 years 4 months he had his "official diagnosis."  For months before his diagnosis, I had been attached to my computer reading and researching all through the night many nights.  I was bound and determined that my son would be one of the few to beat the odds.  That he would overcome this and not let it rob him of his true happiness from meaningful relationships.  I promised I would dedicate my life to helping him.

And so I broke that banana.

You see, part of Jake's autism involved being very inflexible and going into a tantrum if things didn't go his way.  He hated, loathed, despised broken bananas.  Now, he loved bananas.  As long as they stayed in one piece.  But, if it accidentally broke I'd have to throw it away (or eat it myself) and get him a new one.  God forbid, that the LAST banana in the house broke.  So, one day, standing across our peninsula counter from him in the kitchen I did the unthinkable.....

I broke that banana on purpose and told him he was going to have to deal with it.

Why?  To be mean and nasty?  No.  To make my child unhappy?  No.  To send him into a fit of rage?  Most definitely not.  Why then did I break that banana?

Because I loved him so much and I decided I was willing to help him through even the toughest of times to learn to handle the world around him.  All the joys, all the sadness.  All the reasons for excitement, all the disappointments.  All the whole bananas, all the broken bananas.  I would be there.  And, the tough part started that day at 2 years old when I would decide that instead of crutching him through and trying desperately to keep things in order for him, I would rock his world and carry him through it.  Because the world is not orderly, even at 2 years old.  And, we were starting that day. 

And I never looked back.


I'm going to re-post on my next entry a blog entry from a private blog that I have.  Then, I will start with where we are today.  Following that, I will travel back over the almost decade with my sweet boy and try my best to recount how we got here.  I don't know if anybody cares.  But, I have it all in my head and still fresh in my heart and I want to spill it for myself and anyone who is interested in reading it.

So, here we gooooooooooooooooooooooooo......