Autism Journey part 7

I cried 6 times yesterday and I am not even premenstrual. Nicholas went to his five year old check up and for some weird reason I had convinced myself that this check up was going to give me the answer I have been searching for during the past 3 years. I desperately want a doctor to tell me WHY Nicholas has PDD-NOS and why he is so little. In my heart, I have been believing that one day a doctor will tell us why and how it happened and that there is a way to fix it.

Our pediatrician is quite remarkable and she acts out of kindness and love. She has been willing to explore any hair brained idea I ever have. She doesn't scold me for googling medical stuff too much. She has a heart and understands what it must feel like to be in my shoes. She never judges me. Honestly, I don't know how she even puts up with me.

But yesterday, a HUGE shift took place in my heart. Nobody could see it unless they saw my hands shaking or saw my tears spill out in the parking lot. It wasn't a bad thing. It was just me coming to the end of my desperate search for answers and standing at a complete dead end.

Nicholas was diagnosed with PDD-NOS when he was three but he was already receiving speech therapy when he was two years old because he had stopped saying mama and dada and he only grunted. Teachers saw red flags for autism and it freaked me out even though I saw them too.

It only took a developmental pediatrician one hour to make his diagnosis. I didn't know what PDD-NOS meant but he said the word autism and my heart sank to my feet and the world spun out from under me for an entire year. I just worried that Nicholas might not ever be verbal. I worried he would never be OK.

I was under the false impression that autistic people never love others and that they are unable to show affection. It broke my heart.

Of course, if you know Nicholas, you know that he is one small package of hugs and smiles. He is cuddly and extremely happy. He hugs me every day and at night when I put him to bed, he holds my face in his hands and stares into my eyes for a long time. He giggles and smiles. We don't carry on conversations like I used to experience with my older children when they were five years old, but we communicate just fine. And I think we even communicate telepathicly sometimes.

But I just wanted for so long to know WHY this happened. What did I do or not do when I was pregnant? Was it the vaccine? Every month conflicting stories are published in medical journals about the link between autism and vaccines. Who is telling the truth? Was Nicholas born with it? Was he destined to have PDD- NOS? Is it inherited from me? He's not the only child in our family affected by Autism Spectrum Disorder. Was it the high fever he had when he was one years old after a bad reaction to a round of vaccines? Did it cause brain damage? 'Cause let me tell you, he was never the same baby after that episode.

Well, I was eager to brain storm ten different possibilities to explore with our friend and pediatrician when it all shifted in my heart. She said we don't have to know why and we may never know why. And that's OK. I don't think there's anything we can do to "fix it." He's a beautiful child with a beautiful mind. Let's just focus all our energy on his abilities and get him all the help we can.

Whoooooosssssshhhhhh..... the wind was sucked out of me. The hope for a cure, gone. Even though my hope was based on a wish and not actual faith, the hope died right there in the office. And for the first time ever regarding Nicholas, I tasted acceptance.

Boy, it tastes bitter at first. It's like giving up. It's like hopelessness. It is like defeat. But I know it's really not. It's just going to take me some time to figure it all out in my heart. And the taste is still bitter.

After Nicholas' appointment, I took him to his school which is the state of the art, best place for special needs children in the entire state and possibly beyond. I enjoyed a Valentine's party in his classroom. I sat next to a precious child who will never walk or talk. He was beautiful. And I thought about what his mother must carry in her heart and how heavy it must be with worry about the future.

And then I looked at Nicholas, who by all accounts is fine. He's healthy. He's happy. He's learning new things every day. He loves his life. And when I looked at his friend sitting in a special chair, he looked like he was enjoying life too. He was mouthing a Cheeto and appeared to be in hog heaven. I looked around at the other children. One little girl is blind and she was having a ball dancing to some music and singing the words. She is happy. And a pretty little girl reached over and started holding hands with a little boy in a wheel chair and she danced with him and petted his hair. My goodness, the entire classroom was filled with happy children and you honestly could not tell who had a disability and who did not. It was just a classroom filled with children.

On my way home, I called my sister. I cried to her and told her I didn't mean to be ungrateful, but I just am so sad and so mad that I can't find a cure for Nicholas. I feel like he got locked up and damaged and is not the person God intended him to be. She wondered if I'd ever really allowed myself to be angry about it before. I haven't. She said, "Then be angry. Pick up that hat, wear it for a little while and then put it down. You don't have to marry your feelings. When you want to feel positive and happy, you can later. If you want to be mad, be mad."

Ohhhh... relief. I am f'ing PISSED OFF that something bad happened to my baby and I cannot fix it!!!!

There, I said it. And I mean it. Even though I love Nicholas just the way he is and he is a blessing to this family, I MEAN IT!!!!! I AM ANGRY!

I came home and jumped into Adrian's arms. I told him how sad and mad I am. And he hugged me and said that was OK but that he wasn't mad at all. And that he knows in his heart it is all meant to be.

He was raised in the Mormom church and he believes in a pre exsistance. He said that when it was time for Nicholas to come to earth, that Heavenly Father told him that Abigail and Adrian needed him in order to bring our family certain blessings and to teach us lessons that only he could. And there were going to be four siblings who needed what only he could give. But that it wasn't going to be easy. That a life experience on earth is tough. And there would be some added challenges like living in a body affected by autism. And he would be really little for his age. Kids might make fun of him and learning certain things would be hard.

And that Nicholas' spirit understood all of this and more. Five and a half years ago, Nicholas' spirit stood up, raised his hand and said, "I will go! I am ready for this mission!" And then, while I was laying in bed reading a book, Nicholas' spirit joined the baby body I was carrying in my womb and I felt him kick for the first time. His spirit had quickened. Nicholas is totally OK with the hand he has been given. We need to be OK with it too. It is part of the plan.

Well, now you can see why I cried so many times yesterday. What Adrian said is so beautiful. I told him he needs to teach the world that message. That we are all here by choice. If we believe we knew of all the struggles and heartbreaks we will face, it makes it easier to find peace with it all. It's easier to see the precious people in this world who live with awful disadvantages, that it is part of a plan and this is just one tiny slice of our experiences.

I'd like to think everyone who is born with a disease, cancer, C.P., Downs Syndrome, Autism, Mental Retardation, Neuro tubal defects, or whatever, that those people are serving very special missions here. And that one day, when their time is up on earth, that they will be restored to their perfect bodies and minds. And that they have blessed the lives and taught all us typcial folks lessons on God's pure and unconditional love.

I'll put my angry hat away when I am ready. And then, I will get on my knees and thank God for chosing me to receive so many wonderful blessings from each of my five special children.