I know, I know. I keep going long periods of time without writing or posting. I’m sorry. Being a mom to Mateo has been all consuming, and I’m loving it. My husband was deployed for a little while and I had to juggle the household, finances, and parenting on my own. When he got back, I was so focused on being present and enjoying him while he’s here that I continued to neglect writing. It’s been a chaotic, hard, joyous road since August of 2018 (the last time I made a post). Recently, I have a newfound motivation for continuing with this blog.
So, here’s a recap for you all!
February 2018-Moises deployed
March 2018-Marc’s 2nd birthday
May 2018-Our 4th anniversary, Mateo turned 1 (YAY!)
July 2018-Anniversary of Marc’s death
September 2018-Moises returned
December 2018-We started trying for another baby
January 2019-We got pregnant
February 2019-I miscarried
March 2019-Marc’s 3rd birthday, we got pregnant again
April 2019-My Grandma died
May 2019-Our 5th anniversary, Mateo turned 2 (YAY!), we found out we were having a girl!!
July 2019-Anniversary of Marc’s death
October 2019-Mateo went to a specialist and came away with a diagnosis
November 2019-Brietta was born!!!
January 2020-My mother-in-law died
February 2020-Mateo started therapy
March 2020-Marc’s 4th birthday, the COVID-19 outbreak put our move (that I was so looking forward to) on hold
As you can see, it has been a wild ride. We’ve been to hell and back.
The main purpose of this post is to announce and address Mateo’s diagnosis. I had my suspicions for quite a while. Because of my autism, I keep a close eye on my kids for signs that they may be autistic as well. It took a while to convince Moises that we needed to take Mateo to a specialist. Moises doesn’t like talking about it, but he was in denial. Mateo’s pediatrician, at his 1.5 year checkup, suggested that we see a specialist because he hit the majority of the markers in the early autism screening checklist. We worked with local Infant/Toddler Services to see if we could improve his communication skills. We expected delays. He is a boy and we are a bi-lingual household. Statistically, that demographic is later in speech development than most. After 6 months of working with them, he’d barely improved outside of non-verbal communication and the pediatrician still recommended seeing a specialist. Moises finally agreed to setting up the appointment but was still in denial. Up to the day of the appointment, he would say “We’re just going for peace of mind.” As if we were going to go and have them tell us that he is Neurotypical and we have nothing to worry about. Maybe it was just him telling himself that everything would be okay, maybe it was him telling me that everything would be okay. I was very stressed out and nervous about it. I never went through getting a diagnosis and didn’t know what to expect. Still, Moises watched Mateo flap his hands and line toys up in a row obsessively and just chalked it up as him being our “odd duck”.
Now, don’t start hating my husband. He has no problem with people that are autistic. He loves me and everything about me. He is supportive with my writing for this blog and helps me in whatever way I need help regarding my autism. He is patient when my ticks surface and when I’m melting down. He is wonderful! The reason that he was in denial is simple. He’s a dad. He’s a parent. As parents, you try to make your kid’s lives easier than yours was. As a parent, you do your best to make sure your children don’t live through the same hardships you did. You want an easier, happier life for your kid. And an autism diagnosis completely disrupts that dream. An autism diagnosis means more difficulty and more hardship than your child would have without it. And, when you’re a neurotypical, an autism diagnosis means a harder life than you had. That’s a hard thing to accept.
The diagnostic process happened in three parts. There was a child behavioral specialist that watched him play and observed his behavior, there was a child psychologist that did puzzles with him to analyze his cognitive ability and problem solving skills, and a nurse practitioner that checked on his physical health. After each of the three did their part, they had a meeting to discuss their findings and come together with an official diagnosis. This process took about three hours.
Mateo has Autism Spectrum Disorder with a tentative second diagnosis of Global Developmental Delay. The tentative diagnosis of GDL is tentative because he is two years old. Maybe he didn’t complete the puzzle because he can’t, or maybe he didn’t complete the puzzle because he’s a toddler and got bored. There’s no way to know because he is non-verbal. They said that that diagnosis may change as time goes on. I can say with confidence that he is intelligent and capable when he wants to be. Because he’s two.
As soon as these specialists said the words “Autism Spectrum Disorder”, it was like I was hearing everything else through a thick fog inside my head. I thought that I would feel validated when they confirmed the suspicions I’d had for so long. I thought that I’d feel happy because everything I had been feeling would be true, without a doubt. But what I felt the most was sorrow. I thought back to all the things that were harder for me. I thought back to the bullying because I was different. I thought back to the things that used to cause my meltdowns. I thought back to the headaches and tears and pain I endured. I thought back to all that I had gone through because of my autism. And I felt sorrow knowing that Mateo will go through that too. I felt sorrow for the times that he will think people are his friends, when they are really making fun of him. I felt sorrow for the overwhelming confusion he will face because he doesn’t understand things. I felt sorrow for all the things he will have to learn the hard way. I felt sorrow for the dream of ease that my husband had being crushed. I felt sorrow for the ways that my husband won’t understand our son. And I felt sorrow for myself.
As time has passed, my feelings have evolved. They have ebbed and flowed. I have felt anger and frustration. I have felt stuck. I have also felt relief! Being able to put a definitive name to it makes it easier to address and deal with. It makes how we deal with certain things different. We know now to grab his weighted blanket and bear hug him when he’s having a meltdown and we know to admonish him when he is having a tantrum. We know when and what to have patience with because some things are autism and some things are simply being a toddler. Knowing without a doubt changes the way that we parent. Having a diagnosis opens doors that would otherwise be completely closed to him.
We have been able to get him into ABA (Applied Behavior Analysis) therapy. They use play therapy to teach kids with special needs. He’s also going to be put in speech therapy. Once he turns three, he’ll be enrolled in a preschool for kids with special needs. All of this was made possible with his diagnosis.
He absolutely loves ABA. He is very excited every time he sees the building. He runs right in and stands in the middle of the room. He looks around carefully, figuring out what he wants to play with. I don’t get to stay and watch the therapy, but the results speak for themselves. He’s more willing to say a few words, he is happier, he is better behaved, his imagination play has improved, he is more willing to play with us, and his non-verbal communication has significantly approved.
The first day, though, was very hard. He was excited to play when I dropped him off, but it was a different story when I picked him up. He was crying. He ran to me and wrapped his arms around me. I picked him up and he clung to me. I asked how it went and they told me. Everything that they said sounded so nonchalant, but I know the true weight of all that he went through that day. They would not pick him up unless he said the word “up”. He said it several times, but I’ve never heard him say more than three words in a day. They wouldn’t give him another fruit gummy until he finished the one that was in his mouth. That is the opposite of what he’s used to. I usually give him a snack on a plate and let him free-range eat as he pleases. If that means he eats one and comes back to get more later or he shoves them all in his mouth, he does as he pleases. And he loves fruit gummies. It may not sound like a big deal to most, but I’m with him all day, every day and knowing how difficult those things were for him made my heart heavy. People with autism thrive on routine. He was thrown off his routine and way out of his comfort zone. My mama bear heart wanted to never take him back. Not only does the mother in me want to protect him from harm, but the Aspie in me empathized with how difficult that day was for him. I know just how stressed out it made him. Of course, I took him back. Since that first day, he’s only improved.
Now, I feel grateful. He’s getting early intervention and professional help that wasn’t available to me. He’s a beautiful, sweet, amazing little boy. He feels so much empathy, it makes me wonder how so much of it can fit into such a little body. He is so smart, careful, and caring. I think that his autism is one of the wonderful things about him. It presents challenges, yes, but it’s part of what makes him who he is.
I am on a new journey. Before, it was just me on the road, navigating hurtles to the sounds of my support system cheering me on. Now, I’m holding my son’s hand and slowly helping him navigate this bumpy road. I love Mateo and everything about him. I just hope that my Asperger’s is helpful instead of hindering on his journey. I sincerely look forward to the person that he will become.
With Anticipation,
Allie.
P.S. My daughter is an amazing, beautiful little angel.
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