April marks Autism Awareness month. When I told my oldest that, he asked what I meant. “Doesn’t everybody know about Autism already?” I tried to explain to him that it exists so people can keep it in their minds, and not forget about it. There are people who don’t know and love someone with Autism, so they probably don’t think about Autism much. He seemed to understand.
I have been wanting to write about our story for quite a while, but it never felt like the right time. Believe me, I’ve started, but never got anywhere with it. It’s not an easy thing to talk about, and not having anything “official” made it even harder. I mean, was this all in my head? Was I just a mom who didn’t want to see the truth, that her kids are bad? That she’s a horrible parent? Now that the boys have been officially diagnosed, I feel freer to share it. So here it is: Our Specially Blessed Story: The Beginning.
My oldest, Jeremiah, is 11. I feel I have failed him the most of all my children. 🙁 Since he and Josiah were only 19 months apart, my pregnancy with Josiah was rough, and Jeremiah was for the most part a “good” or “easy” boy, I ignored the warning signs he’d been giving since he was young. He was very cranky as a baby, walked at 10 months, and started talking very early (I remember at one well-baby appointment, the doctor said he should know about 10 words by that age, and he knew about 40; the doctor was surprised). I thought he was precocious. I thought he was smart. He also had horrible meltdowns/tantrums that were nearly impossible to control. But he was a sweet, smart and fun boy. When Josiah was born, and had lots of issues, I chalked many things up to Jeremiah just being a jealous big brother. I missed so many signs. I’m just thankful that he is still such a sweet, loving boy, and that God is not done with him yet.
Joe is now 9 years old. I’ve wondered all of his life if something was different. He was an extremely fussy (think colicky) baby. He was rarely satisfied with anything unless I was holding him. He was extremely alert, active and busy as well. I remember he held his head up, with NO support, at 1 day old (I even have a photo somehwere…). He walked at 9 months and began running at 10 months. He climbed everything in sight. He had major trouble concentrating. He had awful meltdowns/tantrums. He was the reason we started cutting out gluten, dyes, and high fructose corn syrup. But, again, he was such a sweet, smart and fun boy. I’m so thankful that he’s also a forgiving boy – he never holds our past mistakes against us. He really is an amazing child, and I’ve said from the beginning that God has big plans for him. His name means “fire of the Lord” and it really fits him!
I thought something was different about my third born, Jamin, who is now 7 years old, when he was about 3 weeks old or so (maybe sooner?). He almost had to be diagnosed with failure to thrive because he was such a lazy nurser. Thankfully, we got that taken care of, but he was still a very passive and floppy guy, which was in direct contrast to his strong, athletic big brother. I also thought he had vision trouble. He didn’t make much eye contact, and his tracking was always off. I even took him to have his eyes checked, to make sure he wasn’t nearly blind. After the check-up, it seemed his tracking and eye contact improved a lot. However, he was very behind in all development, especially compared to his big brothers. He didn’t talk early. He didn’t walk until 15 months, and he wasn’t completely toilet trained until he was nearly 6. He is also a sweet, smart and fun boy, though I admit that I did wonder about the “smart” part many times over the years, because he has a sensory processing issue. 🙁 For a while, he answered the opposite of what he meant; No meant yes to him, and yes meant no to him. His responses were always slow. He is finally “getting” reading, even though we’ve been working on it for almost 3 years, and his speech, at 7 years old, is still very delayed.
I found out in the past few weeks that these three boys are on the Autism Spectrum. If it were still a diagnosis, they would be considered Asperger’s. And what a Spectrum it is, because they are so completely different from each other, it’s not even funny! Each of them have other accompanying issues, but the ASD diagnosis is the most encompassing. It will feel so strange to say to someone, as an explanation of behaviors, “He is on the Autism Spectrum. Please be patient with him.” rather than, “I think he has Autism. Please be patient with us.”
And let us not forget about my youngest son, Jace, who has been the neurotypical child for years. His development was “normal,” his behavior was mostly normal, but things changed right around his 5th birthday last September. He’d had to be put on steroids for a horrible cough, and a week or so after that, had to get shots for preschool. Both of these things changed our son. He went from being a busy, curious, happy, sweet little guy to a busy, irritable, mean, grumpy, destructive little meanie. I kid you not, it was like night and day. We found out last week that he not only has ADHD, but has something else called Disruptive mood dysregulation disorder (DMDD), and I have no doubt that this was caused from the steroids or the vaccination (or a combination of both). We still see glimpses of our old Jacey, but he is not the same.
I have thought for years that something beyond me being a failure as a mom and them being “brats” was going on. To finally have validation that we are all okay has been overwhelming. We’ve been through a bit of a grieving process, an acceptance process, light-bulb moments when we sheepishly realize where these disorders came from, and now we are in the curious predicament of finding help for our guys.
Help so that they can not just cope, not just survive, but THRIVE in their lives. God made them the way He did for a reason. Each of these boys is a unique, special blessing from the Lord. I want them to live their lives knowing how important they are, and how differences can be embraced, not just accepted. I want them to always feel loved, even when they feel different.
I’m at the beginning of this journey, even though my oldest is already 11 years old. I invite you to join me. So far, I am looking into therapies, services and products that can help our family. I’m anxiously awaiting the arrival of this book, after reading a great review and recommendation about it. I soaked up the info from a Dianne Craft session at the Homeschool Convention. I’m loving all of Carol Barnier’s articles on her ADHD website. I’m connecting on facebook support groups and trying to find a local group that the boys can thrive in. It’s amazing to see that we’re not alone – other families are going through similar things all over the world! I can always use prayers, advice and support along the way! I figure with 1 in 63 kids falling somewhere on the Spectrum these days, you probably know someone affected.
If you know someone who is dealing with special needs, of any kind, read this and reach out in a loving and helpful manner.
So come on – share with us!
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Homeschool Mothers Journal