Finally! Answers!!!

It's been 6 years and 10 months since brother Baer was born and I knew there was something wrong. It's been 4 years and 8 months since we received a "diagnosis" and Finally Finally Finally! Today....I had someone really listen. Really diagnosis and Really give me answers.

Autism. I already knew that of course. And probably most of you do to since I say he has it. But to hear a Dr say it. To hear the professionals say it "without a doubt" not a rule out diagnosis. Not a secondary diagnosis. But that IS the issue. It felt great to hear. Great only because I already KNEW that was the issue. The school knew that was the issue. The TSS's and BSC's we have worked with told us that too. So did Family Based Services. But I had yet get a Dr to listen. Really listen and take note. To watch him and really learn about him.

Funny thing is I used to think the diagnosis meant nothing. I will tell you now my dear friends. I DOES matter. The kind of services and the kind of treatments and supports are depending on a proper diagnosis. And for years now we have had the wrong one. So therefore I fought and struggled for the right services. I have read enough and researched enough to know that Brother Baer did not have a mood disorder. He was not Oppositional Defiant. He did not have ADHD or Expressive Language Disorder. They were diagnosing symptoms of the Autism. Not the actual Autism. I struggled and fought for this to give him the RIGHT services because as a niave momma almost 5 years ago I said I didn't care what they called it just help me. Well....It matters. It really matters. So take that from my experience. Trust in what you know and what you believe and make someone listen to you. I did have a Dr "give me" a PDD-NOS diagnosis about a year ago to appease me. And really, he said that at the time. I wanted to send William to a summer program for Autism, they said it had to be a diagnosis. So....The Dr granted that to me. To appease me.

Oh and another thing.....Bad Parenting. HA! What a joke. After being told by countless Dr's that I needed to adjust my parenting style....

I was told today that the only thing "bad" about my parenting style was that I had "trained" Brother Baer so well the past 5 years on "how to act" and "how to interact" that he was programmed correctly for social interaction. Programmed responses from years of his momma Baer teaching him what to say and when to say it. Years of telling him to "look at me" and years of telling him how to make a friend or how to be a friend. And now....Unless you care to know or care to watch and listen you will see a well adjusted child who can make eye contact and speak to you in context. So then your only thought is....he is "bad" and since the Dr's only see him for 10 minutes at a time brother Baer can behave properly for those 10 minutes. So they say he needs a tougher mom. He needs more rules. He is "bad"

Well He's not bad, he has Autism.

Christmas Morning

Christmas morning, 1979.
I was 9 years old. This day, this moment in childhood sticks out in my mind almost more than any other event in 40 years. My mom had worked so hard on this day. It wasn’t a glitzy elaborate event. Handmade ornaments were hanging from Christmas tree, surrounded by multi colored glow from the lights. Handmade garland made from cut outs of fabric, sewn together and stuffed, then strung together perfectly was hanging from the ceiling between the living room/ dining room areas in our base housing at Camp Pendleton, California. My mom, my sister, and my step dad lived in a modest 2 bedroom home there. As most military families we were not wealthy or even well off. My parents struggled to pay the bills and to provide for our family. But, at 9, not of that was even apparent to me. I walked out into the living room from my room to see what Santa had left me. I was wearing pajamas made for me by my grandma back east. The excitement was caught in a picture at the very moment I saw the presents.
I received 4 gifts that year. An Andy Gibb poster, an Andy Gibb puzzle and the two things that were the pivotal weapons to groom me into the person I am today. A Gerber Baby Doll that my mom had saved Gerber labels from my baby sister’s baby food and mailed in and received for free. She was dressed in a white gown, hand sewn, her eyes closed when you laid her down and she was beautiful. I loved her. She was mine to love forever. The other item was a handmade cradle for my baby that my step dad had crafted and my mom had painted white. In the cradle was a pink bedding set. The blanket and pillow were also handmade for me by my mom. It was the greatest Christmas ever. I cannot tell you many details about other years. But this Christmas….it was different.
Why this Christmas stood out in my mind didn’t become clear to me until much later. You see, all I ever wanted to be was a mom. That’s it. I never as a child inspired to be a doctor or a lawyer or anything other than a mom. I was to have 2 boys and 2 girls. They would all be beautiful and perfect. I would dress them in expensive clothing and match them to each other. Dresses for the girls, adorable pant suits for the boys. They would be smothered in love every moment of everyday. I would lavish them with everything they ever dreamed of having. I was going to marry an amazing handsome man, maybe a doctor, or maybe a prince, and would spend my life caring for my family. We would be the envy of the suburban neighborhood we were going to live in. We would go to church of course, every Sunday in our Sunday best. And I would chat with the other moms about all the amazing things my children were doing this week. And we would watch the children laugh and play together. Then we would go to grandma’s house for our Sunday dinner and the cousins would all play together for the afternoon. During the week I, of course, would volunteer for charities. Giving back would always be important. Maybe saving animals or the homeless would be my calling. That would be my life. An important one, a fabulous one. A mother, a wife, a volunteer, making a difference in the world. That would be me.
Two lessons came from that day. One, was there was no such thing as Santa Claus (well….I saw my mom in the mall at Spencer’s gifts buying that Andy Gibb puzzle before Christmas and it came from Santa DUH!) The second lesson was that dreams do come true.
Although I must confess that God answers prayers in his way and on his time. This life I lead 29 years later. The life of a mother, of a wife, and of a volunteer is not anywhere close to being that princess perfect life I dreamed of. You see my dreams never had words like Atriaventricular Septal Defect, Bicuspid Aortic Valve, Congenital Heart Defects, Down Syndrome, Autism, Mood Disorder, Oppositional Defiance Disorder, or Expressive Language Disorder. My dreams never had me spending nights in a hospital standing a vigilant guard by my child’s bedside. Watching the monitors and praying for sleep and no PVC’s. Nor did my dreams have me spending my days learning about chest tubes and Pacemaker wires. I also didn’t dream the 10 therapy appointments a week that we attend. The multiple Autistic meltdowns of epic proportions weren’t on the agenda either. None of these things were in my planning when I planned out my life but alas here we are....Here I am. A few other things weren’t on my list of dreams either. But through it all one thing remains true. God does not call on the equipped. He equips those who he calls. And God is the one who makes the choices for me in my life. I am simply here, doing God's work. Blessed to be the one he has called and equipped for this journey. I love my family and my life. And those beauitful babies that God has sent me!