I took a few days to think before I sat here today to share this story. I played with the idea that people would judge me and then I thought, well maybe people will be receptive to this. I ended with the thought that no matter what, everything will be okay and I wanted to share our journey to be a light for others.
My handsome amazing son Kian lost words. His first word was buttons. Buttons! What an amazingly complex awesome word for a child to say. Next came the good ol' mama; the same word that parents so desperately try to extract from their little precious child's vocabulary when they are young. He had the typical jargon too and we thought everything was on track until the day when it all stopped. I told myself that he was learning skills and that soon he would emerge with these complex new abilities and more words. Everyone assured me that he would speak again and that I was too critical because Max (my oldest) was so advanced. I took note of my concerns and filed them in the back of mental cabinet and kept living life but I never let go of my concerns.
We moved across the country from Connecticut to California. During this time I started to realize that Kian was different. He was now over a year old and not speaking, but making noises and growling mostly. He made a really good monster when we would play chase games. He wouldn't point to things or tell us what he wanted but mainly just whined or cried. I told myself, "Einstein didn't speak until he was three. Maybe he is just incredibly intelligent," but I could never shake the feeling that something just wasn't right. My dear husband insisted he was just stubborn; and he sure was and still is to this day, which is not a surprise considering both of his parents. When we settled in California, we had his 18 month visit where he scored less than expected on milestone questionnaire. His doctor gave me the number for the Early Intervention Infant Program through the school district to have an evaluation done.
Are you ready for this roller coaster ride? The last year has been nothing short of an emotional train wreck that took a toll on our family but we made it; we made it through this and a heck of a lot more over the last year. I am pretty sure we are half super hero; maybe more!
Kian arrived to his assessment and of course, he was so excited to be in this huge room of new toys to play with. It went as bad as I could imagine. He didn't want to sit and he sure didn't care what anyone had to say to him either. You want me to stick these pegs in a board? How about I throw them over there!? Hilarious! Wait, are these made of chicken because they taste delicious. Yep. His older brother couldn't fathom attention being shed on anyone else but him so we had a lot of sweet ninja moves, spurts of yelling, some crying, and epic tantrums. I think I gained a few wrinkles by the time we left. Thank you wrinkle cream. So, in the end, I wasn't surprised when he scored low in several areas but dare that I say that I was insulted?
Yes; I was insulted. The "crew" came from the school to meet us in our home and talk to us about their findings. They were kind and gentle with their approach but all I heard was:SOMETHING IS WRONG WITH YOUR SON
YOU ARE A BAD MOM
They never actually used those words but that is all I heard. So these people wanted to invade my space and upset our life and they all had an idea of what to do and my head was spinning. Do you even have kids? But he wasn't even himself in that assessment. How could you say he isn't perfect!? It was incredibly overwhelming. I was in denial and mad. I agreed to ease into their services because at this point, I only felt like they spewed a kettle full of negative insults at me about my son. In my eyes, he was just amazing and I loved him but they made him sound defective. What could it hurt? This will just help him gain more skills right? I signed the paperwork and agreed to group once a week and one hour of in-home services starting October 2012.
Little did know that the next year would nearly break me.
I try to write what it was like going to these services and I just don't know how to explain it so that readers would be able to feel this with me. Imagine a raging inferno separating you and your child. Imagine trying to put that flame out with water, sand, and everything you had in your arsenal. You have people handing you tools to reach him but they keep failing. You feel like you are losing your child but he's right there in front of you. You can only stand there and watch everything you do fail. You only experience failure over and over and then you start to question yourself.
If I had only noticed this fire sooner. If I hadn't used that sand on the fire. If I could just walk through the fire and reach him... he is right there! Right there!! What is wrong with me? Why can't I do it? What did I do to cause this? Maybe I shouldn't have had a sleep aid that one night. Maybe I should have taken the pregnancy test earlier. Was it the prescription I had to take? Vaccinations? How could I do this to him?
This is how I felt. Hopeless. Useless. Incapable of helping my child. Guilty of somehow causing these problems. The program wanted me to add services but I was ready to stop them completely! Why? Kian often disengaged from his teacher. He would get overwhelmed and he would disengage. It was too much for him. She was an amazing person but she also had a lot of energy. I stopped going to group because it was just as stressful. Kian would hit that wall and everything would go downhill. The program put so much pressure on me to do more and I just didn't see any results after all this time. I cried and I cried a lot and told them I wanted to stop services completely but instead, we agreed to just keeping the one hour home visit every week. Kian still didn't improve. He had about 10 words but he wasn't making much progress and I am 100% confident that his progress came from development and not the program.
Summer break came and what an exciting time this was. Kian seemed to blossom! He started saying so many words and listening so much better. It was amazing. I thought my husband was right! How could I have doubted him? I am just too critical buuuuut, something still wasn't right. I couldn't shake the feeling that there was something wrong and I felt guilty for not making it better. I asked his doctor to get us a referral to Lucille Packard Children's Hospital and she did. Our appointment was set for September 17th!
On September 17th, 2013 my son was diagnosed with Autism Spectrum Disorder.
Let me connect the dots. He doesn't respond to his name. His amazing new words are him parroting. He twinkle toes and shakes often which is considered repetitive behaviors and these are just to name a few areas he had markers in. He didn't pass the tests and this time he was himself. Good news? He is in the mild to moderate area of the spectrum.
Now, I've had a lot of people apologize to me because my son was diagnosed with ASD. I know everyone has the best intentions and they don't know what else to say. I want you to know that it is okay. It's okay! I was sad for my son. I'm sad that he is going to face struggles in his life that no one can understand except him. I know that he is going to struggle in therapy because he will be progressing. However; I am happy that we have direction! The staff at Lucille Packard Children's Hospital told us that autism is the reason we haven't seen improvement with the early start program because he is receiving the wrong type of therapy. So it's not me? I'm not a bad mom?
The reason I write this is to say, at the end of the day, don't be sorry. Celebrate the gift the world has received. Kian is one of the most amazing reasons I live for every day. If I could go and change anything, I wouldn't change a thing; not for one second. Kian brings beauty to a world of darkness. His innocence and happiness make people smile every day. His love is intense and real and when he expresses it, you will know it and fall in love with him too. He is the most amazing little human I have ever met and I am grateful to be his mother.
I know we have a long endless road ahead. I know I will be discouraged again and I may fail again too so, while I don't need apologies, I DO need YOUR support.
If you would like to support our family, learn about autism, don't pass judgment, and have patience. Help spread autism awareness! I would also like to thank Tori. If not for her, I would not have an example of how to be strong. Here is a link:
Autism Speaks: What is Autism?
Kian, I love you! Thank you God for such an amazing angel.
Thank you for all your support. I appreciate and need every one of you. Please share this story!