My pregnancy was was labeled 'high risk', at the first doctor's appointment it was brought up that we consider terminating the pregnancy because the chance that it would cause my conditions to worsen or even kill was extremely high. There was no way that I was going to make that decision, all I wanted my whole life was to be a mom, and I made the decision to trust God to get through. I had major abdominal surgery at 11 wks to put a feeding tube in that would replace my IV nutrition. We couldn't risk another infection that would surely kill the baby. Because my intestines are so badly damaged I had to be on pain medication to get the proper amount of nutrition to keep both me alive and the baby alive and growing. I was so afraid, laying on bed rest for seven months except for our twice a week doctor's appointments for ultrasounds and NSTs. I was on insulin, in horrible pain trying to get Damien what he needed to grow, and the whole time terrified that I would lose my baby. Turns out Damien was a rock star even before he came into this world.
Long story short, Damien shocked the world when he was pulled out of my stomach (flashing the 'rock on' sign) weighing in at 6 lbs 10 oz and 19 inches long. They had predicted he would be in NICU because of low weight and me being on pain medication. After testing they discovered he had zero narcotic in his system, and he was healthy as can be. The first time I looked into those beautiful blue eyes I was hooked. Damien has a way of making you fall in love with him, he did it as a new born with every nurse on the floor. He was an absolute miracle, he was strong enough to survive all the obstacles that were put in front of him, and he didn't just jump them, he demolished them.
The first year of his life he was just an amazingly happy baby, and he was always way ahead in his development. He said his first word at seven and a half months, which to my anger (lol) was 'dada'. He rolled over early, crawled early, and walked at ten months. If there was anything to complain about it was the fact that this happy lil man did not sleep. The first four months he didn't sleep because of colic, but after that it seemed like he just wanted to live his rock star lifestyle. He wasn't cranky, he would keep sitting up and smiling or 'talking' to stay awake. For the longest time he slept in a bouncer because it helped with his reflex and he liked it, the doctor said it was fine before anyone out there tells me that wasn't good. When your child doesn't sleep believe me you will let them sleep wherever they want. He would peek up and check to see if what you were doing, and if he made eye contact he would give you the sweetest smile and giggle. How are we supposed to resist that? It wasn't until nine months or so that he took to his crib, which he later thought was for jumping rather than sleeping.
When I look at the video of him eating his birthday cake on his first birthday it is both amazing and heartbreaking for me. He is so happy and talking to us the whole time smiling and saying, "num num dada". Everything was so amazing and seemed perfect, I had no idea what was going to happen. Slowly but surely I watched my little boy change over the next year, losing his words, and wanting to isolate in his room all the time. For a long time I tried to convince myself that it was nothing, maybe just a phase he was going through. The doctor even brushed it off at first saying it was just him acting out because I was spending more time in the hospital with my chronic illness than I had since he was born. I was naive and let the doc and my son's dad to convince me that I was overreacting.
By the time he was three it was obvious that something was wrong, and I wasn't doing my son any favors staying in denial. At the time I had no idea how difficult it would be to get him evaluated. We got the referral to the Thompson Center, which is a nationally known center for autism and other neuro-developmental disorders when he was just shy of four years old. Over the next year I noticed more behaviors that I now know were stims, he would repeat the same part of a movie over and over again, hand flap, and a few other things. He was also acting out very aggressively because he couldn't communicate his needs, so he learned negative ways to get what he wanted. He was on that waiting list to be evaluated for over a year. We were able to get him into speech therapy there, which four is older to be just starting speech therapy. The first thing we had to do was break all the negative habits he had developed to get his way, he had to learn that he would be rewarded for positive things and receive nothing for negative behaviors. Around this time he also started pre-school at Early Childhood Special Education. For the first time I saw him begin to thrive. He started picking up signs to help him communicate. But, we were still waiting on the evaluation.
Finally, in March 2016 we finally got a date to show up for his eval. The eval lasted from 7:15 in the morning until 2:30 in the afternoon. After the evaluation was done I was handing a piece of paper that listed my son's diagnosis as Autism Spectrum Disorder with speech delay. I tend to lump sensory processing disorder in with the ASD diagnosis. Seeing it typed out in front of me like that hit me harder than I thought it would. I wasn't in denial before the eval, I knew he was autistic, but suddenly it was real. My little boy was going to have to struggle to learn to do the things that neurotypical kids do without thinking, I didn't know if he would have a life beyond living at home with me, and it just broke my heart. I worried so much that when people described him they would always say, "The boy with autism". Instead of just seeing beyond a stupid label to Damien, an amazing smart, funny, and sweet little boy who wins over everyone he meets.
I was staring at that paper and the huge binder they give newly diagnosed children and I felt like I couldn't breathe. At the time I was recovering from surgery so Damien was staying with a friend of mine, which was a good thing since I was losing it. I fell to the floor and started sobbing, I was crying for all the things that my son probably wouldn't get to do, how the cruel world we live in would judge him, and how I let him down. I blamed myself, I must have done something wrong because he was perfectly fine until he wasn't, until he withdrew into his own world. I made the decision on the floor that I would let myself grieve for the loss of the life I had planned for Damien for one night. In the morning I was going to get up, start learning everything I possibly could about autism, and help my son create a new life that he could feel comfortable in.
Since that night almost four years ago we've done just that, helped Damien carve out his on path and place in this world. I have learned how to be in his world, and slowly he's been introduced into ours. All the books in the world couldn't teach me what Damien has taught me over the years. He sees things as they are, he doesn't make decisions based on what he thinks will make everyone happy, he is genuine. When he comes up and gives me a huge hug with that adorable smile on his face he's doing it because he wan'ts to, because he loves me, not because he is trying to manipulate me into doing something.I will say that he has leaned when he is about to get in trouble of he holds his arms out and puckers up his lips for a kiss I will most likely laugh and he'll be off the hook lol. He has started saying more words (momma is my fave), using a tablet to talk, signing, and his teacher and speech pathologist heard him singing on the bus during their last field trip. He loves learning, but takes after me in that he is a perfectionist. He is doing amazing esp being diagnosed so late.
If you're child is newly diagnosed or getting evaluated you aren't alone in what you are feeling. It's okay to mourn the life you expected your child to have. It is overwhelming, all the information that gets thrown at you in the beginning. All you want to do is the right thing for your child, but at the base of everything they need love and patience more than anything. I didn't know how patient I could be until I had Damien. Its okay to be angry and sad, but don't blame yourself. No one did anything wrong, your child's brain is just wired a bit differently than most. I immediately found resources after Damien was diagnosed, I knew as a single mom I wouldn't be able to afford all the specialty things that would help Damien. We have an agency in our county that will work as an advocate for Damien to find the best therapists we can, help pay for things like a crash pad or body sock to help with sensory overload meltdowns, they have provided me with DVDs to learn sign language, she got us approved and wait listed for an aide, helps pay for theraputic riding along with other activities, and so much more. There are tons of resources out there to help, you aren't alone. I joined a support group for moms with special needs kids, and even started my own facebook page Damien's world #spreadingautismawareness. The paper with the diagnosis doesn't mean anything, it doesn't change the fact that our kids are capable of amazing things. Damien is a super happy kid that knows he is loved by all the people in his life, he has a great program for autism at school, and he makes so much progress everyday. He isn't aggressive anymore except on rare occasions. I no longer feel sad about what his life could have been because I know he has an amazing future, he is so much more than some diagnosis.
"Autism isn't a disability, it's a different ability"!
