Benjamin was born in April 17th, 2012. A little less then 18 months after his sister was born. It was all part of my master plan. We tried to get pregnant before my daughters 1st birthday and just like that we were! I was so happy to be having a little boy!!! I had always wanted a little girl and a little boy, and finally my dreams were coming true!!! They were going to be best friends and I couldn’t wait!!!
I was soooo excited for all things boy!!! The superheroes, the trucks, the bugs, and the bruises!!! I was ready for it all!!! Just like that he was here!!! He was happy and adorable just as I pictured him. Nothing was obvious right away. He was a perfect little person!!!
As the months went by I thought of myself as extreamly lucky!!! Ben didn’t cry very often, and he slept so well!!! I hit the lotto when it came to babies! I certainly did not feel like I had two kids under 2!
More time passed and I did notice that he slept a lot. More often then I thought he should but, I passed it off. After all, it was kind of nice! I was tired! I could relax! Then I realized that not only was he sleeping all the time, but he never cried. Almost never. He also did not babble or say anything at all. We would walk in and out of the room and simply forget he was there! He was so quiet! I thought okay, if anything maybe he will have a speech delay. After all, his sister did. Maybe it runs in the family.
Tummy time was never fun for him. It was probably the only time I saw him upset. Lifting his head was hard and he would not roll over. We tried often but I didn’t like to see him upset like that, so did not push too hard. In my heart I knew it wasn’t right but again, I passed it off.
Keep in mind, I had another child already. I knew when milestones should come, I knew what to expect. However, I was always told that boys do things slower then girls and not to worry if Ben wasn’t on the same time line as my daughter. So when he didn’t point or clap, or even wave right away I was simply okay with it. I mean, there was nothing wrong with him. Of course there wasn’t. Isn’t that what everyone thinks? Not my child. No, never!!!
At 9 months I noticed his head was a little flat on one side. Since he slept ALL the time I should not have been surprised!!! I tried to do things so he would sleep differently. Things like promping his mattress or putting a rolled up towel underneath him. The problem did not resolve itself. A month later he was wearing a helmet for plagiocephaly also known as flat head syndrome. I took this one hard. My son had to wear a bulky helmet for 3 months all because of me! How could I have not seen the damage that was being done? How could I have let him sleep so much? It was all my fault. This is where the blame began.
It was then he began hopping on his knees. He no longer had a desire to crawl. It was almost as if he didn’t want his hands on the ground. The hopping was hard and at times seemed painful. He seemed happy though. I was hoping he would walk soon, and he would stop.
He started walking at 13 months. Just around the time the helmet would come off. We were so happy. Finally that stinky, sweaty thing was gone and he had a seemingly normal head shape.
As happy as we were, it was hard not to notice he preferred walking on his tippy toes. It was then I realized he may have some sensory things going on. I decided to take it slow to see if the issue would resolve itself and began making all types of sensory things for him to play with. It was at this point I realized I would probably be calling Early Intervention sooner then later.
During this part of his life he was also suffering with cronic ear infections. Three weeks would go by, and he would be on antibiotics all over again. The problem simply wasn’t going away and something further needed to be done. His doc did not think further action should be taken. He was simply too young for tubes, she said, and it would resolve itself. He would grow out of it, she said.
I had reservations about this. I mean he was taking A LOT of medicine. This couldn’t be good for him, but, she was the doctor and apparently one that was desired by many. Of course I was going to listen to her. She was the one with the degree, not me! So I waited, and waited.
At 15 months the problem had slowed down a bit, was not going away. It was not resolving itself as she said it would. He was miserable. At this point Ben was not answering to his name, was tippy toe walking, did not speak, clap, wave or point. He did not play with toys properly at all. He would throw everything. So much so that his sister would run by with her hand in front of her face, dodging what she could! All the signs were there. I knew deep down in my heart my little baby had autism.
Still, I wasn’t ready to admit this!
It was then I took matters into my own hands and went to the ENT, even though our doc didn’t think we should. To this day I still don’t know what she was thinking. How could you think this many ear infections was normal? I was told that I was wrong about the autism, and that it was probably not that at all. He probably couldn’t hear, is what I was told!
What? Seriously? Have I waited too long? Will he be deaf now?
The ENT was upset I had waited so long and was convinced he had vertigo and all types of other things going on by now. This would explain the irritability, and the balance issues, and the speech delay and all the other delays….right? He wasn’t even walking up the stairs yet! It all made sense now!!!
Maybe, just maybe, he did not have autism!!!! Maybe he just needed ear tubes!!! Maybe!!!
With all these “Maybes” flying around, hope came with it!!! The hope that “Maybe” he would come out of this with tubes, and then miraculously he would speak, and stop throwing his toys, and maybe just maybe, he would answer to his name when I called!!!
Hope can be a dangerous and vicious thing. Because, even though we are told to hang on to hope and to never give up, hope can turn into denial, and denial can end up hurting the most.
Ben was now 17 months, the tubes were in place, and the waiting game began!!! The day we came home from surgery he instantly ran up the stairs and began climbing everything in site. It was clear he was more comfortable with his balance!!! Suddenly he was this fearless creature scaring me to death every time I turned around! He was no longer sitting there like this little lump. He was everywhere, and he was fast!
He was clearly more comfortable moving around and he seemed so much happier!!! I felt relief was in site. Surely I was wrong about the autism, and this is what he needed all along!
This whole thing was going to be a bad dream, and I was going to wake up soon!
Days turned into weeks and weeks turned into months. By now he was in Early Intervention and there was still no speech. He was working on his play skills which were much better, but it was very clear he needed more therapy. He had obvious sensory issues, aside from the lack of speech, and still had balance problems. He was very uncoordinated and would fall over everything.
At 2 years old it was clear once again that my little Benjamin had autism. He was now spinning, and lining things up. Something he was not doing months prior.
Denial was over. Reality set in. We got the official diagnosis last December.
December through April were very difficult months for me. I cried for weeks and closed myself off from those who cared about me.
He has been through so much in his short little lifetime and I was really beating myself up! What could I have done differently as his mom? Was I too late getting him the tubes and the helmet? Did I give him permanent damage? Did I wait too long to get him into Early Intervention? Is it too late? Can he be healed? Will I be able to handle this?
All these questions running through my mind! I became so mad I couldn’t feel. I couldn’t cry anymore! I was cold and hard. Not someone I recognized.
I had to pull myself out of this! I had to heal myself, so I can heal my child!
I threw myself into research. Google became my best friend. Story after story told me I had to go after the diet and the fix the gut!!! So this is what I did! It has not been cheap, but my husband and I have been making it work!!! We have been working with someone to heal his belly and have had some wonderful results!!! He is now on a special diet and on special supplements to keep his gut in tact!
So now I can say with a smile, that my outlook on things have changed dramatically and I see things in a whole new light!!!
No more blaming myself or being angry about things I can’t control. I can now see the bigger picture. I had to dig deep and do some soul searching for sure. After all, no one is really prepared for something like this.
Ben teaches me something new every day. With each day he amazes me even more. Autism may be holding him back a little, but it will never hold him down! His strength and determination is something to be envied, and I love him so much.
I have learned to laugh at things that in the past would never think was funny! I have learned to celebrate the little things, because to Ben they are such HUGE achievements!!! I have learned not to compare my children to anyone else!!! Everyone is different and learns at their own pace. I have learned that life has not at all turned out to be what I expected it to be. I have learned that I am okay with that, and look forward to a new and exciting future! I have learned that with each obstacle, I am made stronger.
I see beauty in things I would have never even looked at before! I look at things with a new set of eyes! I have patience I never thought I would ever have. I have a whole new outlook on life!
Autism did that for me! My son did that for me!!!
Ben doesn’t like the superheroes or the trucks I so wanted him to like. He likes like letters and numbers, and puzzles and books! He enjoys looking at the sky and the trees when the wind blows, and sees so much beauty in things I simply can’t see. He’s not the boy I once envisioned. He is so much more! He is so wonderfully unique and special and I wouldn’t trade it for anything!!!
And yes, he is still best friends with his sister, just as I always wanted. They have a love that can’t be measured and a special bond no one else could share.
Hard days will always come, doubts will always be there, sadness will always be there. Fear will most certainly always be there. Through all this, I truly believe that we go through these obstacles for a reason. To help one another, to be better people, to love stronger, to work harder.
My family has been through a crazy year and our journey has just begun. I have so much more to learn, so much more to see. My son still has so much more growing to do! Times will get harder but I know I have the strength as his Mom to make it through whatever comes our way!
Ben is growing and thriving so fast!!! Developmentally he was in a much different place last year. His strides have been huge and his eyes have been opened to a whole new world!!!
Instead of wondering what would have been, I’m excited about what WILL be!!! Autism will not hold us down, it’s only making us stronger! Together we can make anything happen!!!