I have decided to start a blog. I’m not good at writing, never have been and I will probably mess up a lot in this, but who cares.
1 in 88 children are diagnosed with Autism. 1 in 54 boys! and my little monster is 1 of those children, he is one of those boys!
Anyways, I’m starting a blog to help myself. See ! week ago my son was officially diagnosed with autism. Yeah, my little man is autistic. Even though I have known since about a year ago he was “different” and most likely had autism, well we still needed the diagnosis to keep moving forward. My mind is constantly going, looking up this and that. Dealing with therapy schedule and trying to do “normal” things. The past year has been like hell even though I have a wonderful family who is supportive it still sucks. So the monster was diagnosed with autism. The 2 doctors said that Mike(my husband) and I were doing awesome. We went in the evaluation room with information that I don’t think anyone expected and instead crying and denying anything was wrong with our little guy, we left happy because we can move forward and get him more help. So he has an official diagnosis…moving on. So we go back to our normal lives, but now instead of saying he is going through the process of being diagnosed I can officially say he has autism.
It all started about a year ago I started noticing how “different” the monster was. He didn’t wave, clap and/or point like normal 15 month olds should. So at his 18 month check up we were told he did have a developmental delay and we started a long process of waiting for Riley Children’s Hospital. It took us a good 8 months or so to get an appointment and then it took us another few months to just get in. Once we got in we got the diagnosis within an hour or so. Do I feel relieved??? NO not really, its just going to be a little easier to explain to people what is going on, but I know somewhere down the line I will have my battle with a parent, school district, insurance company, random person who is just getting annoyed by one of the million things my monster does. Thats okay, because Mike and I are willing to fight! And I will fight with every single person if I have to, so here is your warning. 🙂
He is in developmental and speech therapy. Hopefully he will start Occupational soon, but we have been waiting for that for a few months now (ugh the waiting game). He has made awesome progress, his behavior is improving here and there (less meltdowns). He is making better eye contact and we notice he tries to repeat words here and there. He is listening better and even responds to certain things like “cup” and even his name! He has sensory issues too, and for those of you that don’t know what sensory processing disorder is…well imagine going grocery shopping and being oblivious to the world. Then you get in line and instead of hearing the baby crying next to you, you focus in on the cash registers and all you hear is the beeping…beep after beep after beep. Well the monster has sensory issues with his hearing, sight, touch and taste. He only eats maybe 10 to 15 different types of food. And before you say “make him eat something else.” Its not that easy, again his sensory issues stops him from trying different types of food and has limited him on these types so if he decides to ONLY eat McDonald’s for 2 days in a row…well this mamma is getting him McDonald’s. Anyways, we have noticed how he likes to be loved on also. Which is AWESOME!! Some autistic children hate to be hugged, kissed, tickled..etc…NOT our monster he loves attention, I think a lot of it is because of his aunts. He seeks attention from certain people and loves his therapists. All I know is that means he shows loves and likes getting shown that he is loved. That is amazing to me! 🙂
So the monster is making progress! Awesome! So now you know he has autism, he is making progress and he has sensory issues.
This past year has been the hardest year of my life! And back in March I lost a cousin of mine, even though we hadn’t talked in a long time. We grew up together, we were best friends growing up. We literally spent every weekend with each other and spent every summer with each other. We were 2 peas in a pod. We were like brother and sister. I visit his gravesite every 2 or 3 weeks because I feel like something is missing. Part of my childhood was buried with him and I will NEVER be the same. So between the monster being diagnosed and therapy sessions, meltdowns, long nights and just being stressed. I am grieving 1 of the hardest deaths that I think anyone can go through. I keep thinking that maybe it will get easier, but it hasn’t. I miss him and regret not even being able to remember out last conversation. So I go and visit him and even take the monster with. I make sure to water the flowers while I’m out there visiting, I fix things if they fell over and I talk to him and tell him how much I loved him.
So a message to my old “friends” I’m sorry I haven’t called or texted you and asked how you were doing. I’m sorry that I wasn’t there for you when you and your boyfriend were fighting or when you were stressed about money. Yeah, I’m sorry about not asking why your day went to sh*t. I’m sorry about not being your best friend when you were in a good mood or in a bad mood. I’m sorry that I just wasn’t there for you. I’m sorry I wasn’t there for you when you needed a shoulder to cry on, or when you wanted to tell me the things your 2 year old learned. But the thing is where were you when I told you what I was going through? Where were you when I told you the monster had to go to Riley’s? Where were you when I lost not just my cousin, but my childhood best friend? Where were you when I said I was so exhausted and tired because I was literally up all night? Where were you through this past year of hell for me? I’m done waiting, I’m done asking myself what did I do? I’m done waiting for an invite to your child’s birthday party. What happen to inviting me to come over that way our children can play, I’m not the only one suffering here. So here it goes…I am done waiting for a text or a phone call. To my old “friends” where the hell were you? You were busy with your own life and I completely understand…but while you were busy not sleeping because you were out partying, I was not sleeping because my son decided to stay up until 4 in the morning. So next time you think your being a “good friend” by seeing me at the store and asking how I’m doing….well you are just another person. I am fine without people like you. I have an amazing support system! My family, My mom and dad they might drive my insane, but they are there. My sisters who love their little monster as if he was their own, they seriously are the best aunts in the world. And my husband who drives me insane with everything, who I can fight with all the time, but 1 thing I know he won’t be the father that walks away. Especially since his little monster has autism and from all the story’s and studies, a father sticking around when their child has autism…well it is very rare just take my word for it. But the connection Mike has with him is amazing and I am beyond grateful that I have a husband that no matter what happens in a year or 10 years down the road, he will be there for him. I have a good support system, but it still sorta sucks that this whole time you had an “idea” or I might have even told you what was going on and you were no where to be found.
I know I rambled on and went here and there in this blog. Its my 1st blog and like I said I’m not good at writing or any of that, but I think I needed to get a message out there to some people and maybe this will help me deal with things and if it doesn’t then maybe it will help some other mom or dad going through a hard time after having their child diagnosed..who knows, but 1 thing I can say is my little monster is healthy and seems to be pretty happy tonight. 🙂
So I am finishing this off with 2 awesome quotes!
- “Autism, is part of my child, it’s not everything he is. My child is so much more than a diagnosis.”
- “I know of nobody who is purely autistic, or purely neurotypical. Even God has some autistic moments, which is why the planets spin.”