My husband and I met in 2006 and we were married a year later. We wanted to start our family quickly and we were blessed with our first baby, Max, in October of 2008.
Max's birth came with out complication. He was a quiet baby who loved to snuggle. I was scared and had no idea how to care for this little boy, but I figured intuition would take over and the human race had lasted this long.....
As a new born, Max had no desire for breast milk and would take 45 minutes to drink a bottle. At the hospital I had asked the nurses to supplement him. When I would try to nurse, I was told he had "nipple confusion" (this meant he didn't have to work to get milk from a bottle and would get frustrated when mothers milk required so much). I tried to breast feed for the first two weeks; I even had a lactation specialist come to teach me how. There was still many tears and frustration. After that I used a pump. They were long nights; Max would wake and take 45 minutes to eat his bottle, then I would have to pump for another 45 minutes. When Max was two and a half months old I lost my milk.
You may be wondering why I would post a full paragraph of Max's eating habits. This was the first sign of what was to come. No one told me Special Needs children lack a suck.
Max was a fun and perfect baby. He didn't fuss much, he loved to be held, he was happy on his own, and had a great sleep pattern. He kept up with his early milestones; he walked at 12 months and had a few words by 15 months. It was about 16-18 months we noticed a huge change in Max, he stopped talking and making eye contact.
At his 18 month appointment, I let the pediatrician know about my concerns. He gave me contact information for an early intervention program. This was the first time Autism was mentioned. I cried the whole way home. I cried to my husband and my family. I cried for two days after that.
The silly thing was I didn't know what autism was, I just knew I didn't want my baby to have it. I started to do a little research. Nothing was helpful or positive. Nothing promoted hope. I stopped doing research and started praying. I think my prayers at that time were along the lines of, "please be wrong. Please just let it be a delay."
Max was accepted into the early intervention program and had two therapists and two days of group. I loved every person working at the program. They were always happy and positive. They knew how to push Max and could get him to do things I would never think of. This program became my "hub" of all information. I learned of other programs, funding, and found hope though them and the other families in the program.
Our pediatrician suggested we do a genetics test to see if Max had Fragile x. Fragile X syndrome (FXS), Martin–Bell syndrome, or Escalante's syndrome is a genetic syndrom that is the most common known single-gene cause of austim and the most common inherited cause of mental retardation among boys. The test came back with out any indication of genetics. The only thing the test did not look for was mutations or deletions in his DNA strands.
At age three Max had to leave his early childhood intervention program and go into the school districts program. I didn't want to leave. Max had to go through their testing to see if he qualified. For this testing, we met at a school and Max would work with a therapist playing games and looking at pictures. After a half hour, I thought Max was doing really well.
Four therapists met together to look over his scores. After five minutes of review, they invited me to their table. The spokes person was very blunt, "according to Utah standard, your child is disabled".
I'm not sure I heard anything after that.
Of course I cried again, so many tears. Oh, and I just found out I was pregnant with our second child.
I had heard it was very hard to get child disability so I thought it would be a good idea to apply. I wanted to show her she was wrong. I wanted to be turned down. I wanted answers; so far we had been told it was possibly autism but so far no doctor or therapist wanted to be responsible for a diagnosis.
I did my research and found a Dr that specialized in Autism. I scheduled an appointment with him. We had to wait three months to get in but we had a lot to do during that time. I had applied for Disability and Max would need to go through a series of tests and doctors before they would know if he qualified. Our first Dr was a psychiatrist. She did mostly IQ testing. Max was great! I was so impressed with him.
Max started his new preschool. This was hard for me. In his first program I was there with him 100% of the time. I was learning ways to help him from the classes we took together and the one on one time we had with the therapists. Now a buss would come pick him up and the only communication I would have with his teacher would be parent teacher and a weekly email. I had heard of moms who would go to the preschool and watch though the window. That isn't my style but I really considered it.
The next "disability" appointment was with a speech therapist. Max was a whirlwind. She had a flip chart of 100 pictures and Max could tell her most of them. We also had a good laugh about a few, like when she showed him a drawing of an ice cream cone and he said, "Cake". So close buddy! I knew at this point, Max had to be doing well enough not to qualify.
Because I had already set up an appointment for diagnosis, the disability office was going to use the information from that visit to complete their decision. Finally the day arrived. Max has a lot of anxiety over Doctors. He sweats, hides and screams his head off when we have to go to an actual doctors office. Even though this was a therapist office, it still had the look of a Doctors office. They even had the bed with wax paper. Not a good start. It took us a while to calm him down. After that, we started with IQ testing. Max was not in the mood and threw the puzzle on the floor a few times. Dr. Peck had been doing this for years and knew just how to make things progress. He pulled out a bubble gun. Doctors offices had been redeemed for the time being. Max played and showed off a little vocabulary. After bubbles, we moved on to balloons. Max played while Dr. Peck discussed his theories with us. For the time, Max was diagnosed with PDD (pervasive development disorder). We were asked to come back around the time Max turned four to see how Max had progressed. If he had a burst in speech over the next 9 months, this would change his diagnosis.
Two weeks later we received 2 checks from disability. Max had qualified. It took another week before we received his acceptance letter.
