If you're a new reader to this blog, know that it's an anonymous one. I do not use my real name, or the real names of my children. I have shared this link with no more than 5 people (perhaps less), and my husband does not even know how to find it. I can tell you that I live in a suburb of a major metropolitan city in Ohio, and that I am a woman in her mid-40's, with two teenagers. My son Jack is 14 1/2, and my daughter Savannah is going to be 16 in a little more than a month from now.
My son was diagnosed with Autism after we started him at a local "early childhood education" center for kids with developmental delays, and their typical peers. Jack had some odd behaviors early on, but I never really gave them much thought until he was two, and I started to worry about not only his lack of speech by that point, but his seeming inability to respond to his name. The pediatrician had no worries. "He's a boy", and "He's the second child", were both repeated to me on numerous occasions. However, I had something in my back pocket (Thank God!) that she wasn't aware of. I have a cousin with Autism, and his autism has always been more the "classic" type. (Such a great young man, though. I love him dearly, and only wish him the best!). After passing a hearing test, yet still behind in his speech, the doctor (after I practically begged, it seemed) finally referred Jack/us to the state's program to help children with potential learning issues.
We had a visitor come to the house either once a week, or once a month. This was so long ago, that I've blocked most of it out. (For my own sanity, I suppose. Most of Jack's childhood seems to have been forgotten. Milestones? Unless they're written down, I just have no idea). Then we moved into our current house, and someone from the MRDD program started coming to visit. Actually, an occupational therapist, and then a "teacher" came in. The OT pretty much immediately told us that Jack had Sensory Processing Disorder. It didn't seem like a huge deal, but considering all that goes along with SPD (or sensory integration dysfunction), it's not really such a small thing after all. We're coming on 15 years old, and some days I don't know what's "neurotypical", or the autism, or the sensory issues, or even Jack's ADHD. (He also has been diagnosed with Oppositional Defiant Disorder). He was not diagnosed with Autism until he was 2 1/2 - 3 years old. He'd attended the summer school program at the ECE MRDD preschool, and then was in his first "semester" of preschool. His IEP was already started, and I told his teachers and therapists that I very much wanted to get to the bottom of his issues. "Yes or no, Does Jack have Autism?"
Of course there is no easy way to get to the bottom of that question. If you're new to the world of Autism, or you suspect you may be entering that world, you REALLY have to advocate for your child. You really have to push sometimes, to get help. Where you live can often affect the outcome- the county resources, the learning programs available to you, and the quality of help you're going to receive from both regular doctors, and from others. I asked for the "red flags". "D you see them?", I asked over and over. "Yes". Okay, so now what? Jack was referred to the psychologist at the local ECE MRDD (early childhood education, Mental Retardation and Developmental Disabilities), and she did her observations. This was at home, and at school. I filled out surveys, she watched him play, etc. She then told me what no parent wants to hear- your child has autism. Then, something which I appreciate her suggesting- go and get a second opinion. (I did, and from a local Autism clinic. Yes, he had Autism).
So we did get our second opinion, which led to genetic testing through Children's Hospital. We ruled out Fragile X Syndrome, but ruled nothing in. Over the years, outside of the sensory issues, we've pretty much been dealing the most with socially inappropriate behaviors, poor impulse control, altered reality of events (in other words, what really happened isn't quite how Jack sees things), and anger management. There was the added diagnosis of ADHD thrown in for good measure, but I'm glad to report that we haven't dealt with ADHD behaviors in some time.. at least there haven't been reports from school about fidgeting, running around like a maniac, and things of that nature. Jack hasn't been on any ADHD meds for at least 3 years now (if my memory is correct), and only on mood stabilizers. (I realize they're not exactly sugar pills- they're legit anti-psychotic medications. However, they're working better than any other med combo he's been on, and able to function about as well as any other 14 1/2 yr old boy).
Friendships are okay. Not great. He did have some neighbor boys that he made friends with, but they were younger and not entirely understanding of his outbursts. In fact, one mother (bless her heart) came over to talk about him, and to tell me that she used to work with kids on the spectrum back in the day. (Which, while I appreciate the information, and her willingness to do such a thing) did not make her an expert by any means. In fact, when they finally moved (which for me was a relief, TBH), they didn't even say goodbye to Jack. They literally hopped into their car as soon as Jack got off of his school bus, and didn't say goodbye. I think it was planned, if I'm being honest. Maybe that sounds paranoid, but it wouldn't strike me at all as out of the realm of possibility. There were a few other boys that Jack interacted with, who are either his age or younger, and all but one of them has moved. I feel bad for him that there is no one here he can just go hang out with. On the other hand, they were miscreants. They were not at all kids that I would want either of my children knowing. One was expelled from school because he was selling pot. Another was just a spoiled ass. The other, a few years younger than Jack, thought it was okay to show my son porn on his tablet. The last one just doesn't like him because he's different. They'll be riding the same bus next year, so I can only hope they just steer clear of each other.
When Jack was still attending preschool and then his first elementary school, he would become absolutely obsessed with his friends. I don't honestly know what these kids even thought of him, but he was very attached to them. I blame the autism, but what do I know. One of the boys moved away several years ago, so Jack has more or less forgotten about him. The other he will see again in the Fall, after years of basically falling out of touch with- partly because the kid is IMO a little spoiled, but that's neither here nor there. I had started developing a friendship with the one boy's mom, but after her son freaked out over a bump on his head during an attempted sleep-over, I think both of us just stopped trying. Jack loves having friends, even though it's a challenge sometimes. I basically feel like having friends is too much of a challenge, so I'd rather not bother. It makes for a lonely life, when your only real friends seem to be your husband and your only sibling, but there it is. I ask myself: Whose the one with autism?
So when you hear about "packs" or support groups, or whatever your typical mom is doing these days, Yeah- I'm not part of one. If I was going to be in a mom group, they'd all be highly dysfunctional women. None of this PTA mom, running errands in high heels, carpooling, Jamba-juice drinking (my stomach can't handle it, TBH) stuff. It's great for others, but it's not for me. I feel like life said I had to figure this shit out on my own, so that's what I'm doing. In my jeans, t-shirt, flip-flops, side shaved head, my butterfly tattoo and the odd piercing(s), and metallic lipstick.. while listening to whatever the hell I want (Snoop Dogg, or a crime podcast, usually), as I snap my fingers in the car on the way to pick my kid up from Marching Band.
I should definitely add that things have gotten a lot better between Jack and his dad. I think maturity on Jack's part has something to do with it, as well as some understanding on his dad's part. Not all moms are great with the whole Autism thing, but I think dads have a much bigger struggle, as a whole. Some are great, but others just really suck. Why? Because they feel like a failure. Or, if they're being honest, their child didn't meet their expectations, and they're not sure what to do with that. My husband cried after the diagnosis, because he thought he'd never have a relationship with his son. I've since come to realize that Jack (and his sister) is a LOT like his dad. I wouldn't be surprised if my husband was on the spectrum. In fact, hell, I might be. Regardless, my son is so high functioning, and they have the whole gift of understanding when it comes to computers, that they could hardly not find common ground! With the huge changes Jack as made in the last year, and with my husband finally coming to understand Jack as a person, there is a lot more respect on both sides. I'm not saying our lives are all perfect, but Jack is defended a lot more now by his dad than he had been before. It could be the age level- his dad can think back to when he was a young teen, and remember what it was like to be misunderstood by people. I think having a son with Autism has been a gift to him. Especially since he's since ended up working with someone who so obviously has ASD that he can now see that his son will have no trouble (God willing) functioning out in the real world some day.
My son was diagnosed with Autism after we started him at a local "early childhood education" center for kids with developmental delays, and their typical peers. Jack had some odd behaviors early on, but I never really gave them much thought until he was two, and I started to worry about not only his lack of speech by that point, but his seeming inability to respond to his name. The pediatrician had no worries. "He's a boy", and "He's the second child", were both repeated to me on numerous occasions. However, I had something in my back pocket (Thank God!) that she wasn't aware of. I have a cousin with Autism, and his autism has always been more the "classic" type. (Such a great young man, though. I love him dearly, and only wish him the best!). After passing a hearing test, yet still behind in his speech, the doctor (after I practically begged, it seemed) finally referred Jack/us to the state's program to help children with potential learning issues.
We had a visitor come to the house either once a week, or once a month. This was so long ago, that I've blocked most of it out. (For my own sanity, I suppose. Most of Jack's childhood seems to have been forgotten. Milestones? Unless they're written down, I just have no idea). Then we moved into our current house, and someone from the MRDD program started coming to visit. Actually, an occupational therapist, and then a "teacher" came in. The OT pretty much immediately told us that Jack had Sensory Processing Disorder. It didn't seem like a huge deal, but considering all that goes along with SPD (or sensory integration dysfunction), it's not really such a small thing after all. We're coming on 15 years old, and some days I don't know what's "neurotypical", or the autism, or the sensory issues, or even Jack's ADHD. (He also has been diagnosed with Oppositional Defiant Disorder). He was not diagnosed with Autism until he was 2 1/2 - 3 years old. He'd attended the summer school program at the ECE MRDD preschool, and then was in his first "semester" of preschool. His IEP was already started, and I told his teachers and therapists that I very much wanted to get to the bottom of his issues. "Yes or no, Does Jack have Autism?"
Of course there is no easy way to get to the bottom of that question. If you're new to the world of Autism, or you suspect you may be entering that world, you REALLY have to advocate for your child. You really have to push sometimes, to get help. Where you live can often affect the outcome- the county resources, the learning programs available to you, and the quality of help you're going to receive from both regular doctors, and from others. I asked for the "red flags". "D you see them?", I asked over and over. "Yes". Okay, so now what? Jack was referred to the psychologist at the local ECE MRDD (early childhood education, Mental Retardation and Developmental Disabilities), and she did her observations. This was at home, and at school. I filled out surveys, she watched him play, etc. She then told me what no parent wants to hear- your child has autism. Then, something which I appreciate her suggesting- go and get a second opinion. (I did, and from a local Autism clinic. Yes, he had Autism).
So we did get our second opinion, which led to genetic testing through Children's Hospital. We ruled out Fragile X Syndrome, but ruled nothing in. Over the years, outside of the sensory issues, we've pretty much been dealing the most with socially inappropriate behaviors, poor impulse control, altered reality of events (in other words, what really happened isn't quite how Jack sees things), and anger management. There was the added diagnosis of ADHD thrown in for good measure, but I'm glad to report that we haven't dealt with ADHD behaviors in some time.. at least there haven't been reports from school about fidgeting, running around like a maniac, and things of that nature. Jack hasn't been on any ADHD meds for at least 3 years now (if my memory is correct), and only on mood stabilizers. (I realize they're not exactly sugar pills- they're legit anti-psychotic medications. However, they're working better than any other med combo he's been on, and able to function about as well as any other 14 1/2 yr old boy).
Friendships are okay. Not great. He did have some neighbor boys that he made friends with, but they were younger and not entirely understanding of his outbursts. In fact, one mother (bless her heart) came over to talk about him, and to tell me that she used to work with kids on the spectrum back in the day. (Which, while I appreciate the information, and her willingness to do such a thing) did not make her an expert by any means. In fact, when they finally moved (which for me was a relief, TBH), they didn't even say goodbye to Jack. They literally hopped into their car as soon as Jack got off of his school bus, and didn't say goodbye. I think it was planned, if I'm being honest. Maybe that sounds paranoid, but it wouldn't strike me at all as out of the realm of possibility. There were a few other boys that Jack interacted with, who are either his age or younger, and all but one of them has moved. I feel bad for him that there is no one here he can just go hang out with. On the other hand, they were miscreants. They were not at all kids that I would want either of my children knowing. One was expelled from school because he was selling pot. Another was just a spoiled ass. The other, a few years younger than Jack, thought it was okay to show my son porn on his tablet. The last one just doesn't like him because he's different. They'll be riding the same bus next year, so I can only hope they just steer clear of each other.
When Jack was still attending preschool and then his first elementary school, he would become absolutely obsessed with his friends. I don't honestly know what these kids even thought of him, but he was very attached to them. I blame the autism, but what do I know. One of the boys moved away several years ago, so Jack has more or less forgotten about him. The other he will see again in the Fall, after years of basically falling out of touch with- partly because the kid is IMO a little spoiled, but that's neither here nor there. I had started developing a friendship with the one boy's mom, but after her son freaked out over a bump on his head during an attempted sleep-over, I think both of us just stopped trying. Jack loves having friends, even though it's a challenge sometimes. I basically feel like having friends is too much of a challenge, so I'd rather not bother. It makes for a lonely life, when your only real friends seem to be your husband and your only sibling, but there it is. I ask myself: Whose the one with autism?
So when you hear about "packs" or support groups, or whatever your typical mom is doing these days, Yeah- I'm not part of one. If I was going to be in a mom group, they'd all be highly dysfunctional women. None of this PTA mom, running errands in high heels, carpooling, Jamba-juice drinking (my stomach can't handle it, TBH) stuff. It's great for others, but it's not for me. I feel like life said I had to figure this shit out on my own, so that's what I'm doing. In my jeans, t-shirt, flip-flops, side shaved head, my butterfly tattoo and the odd piercing(s), and metallic lipstick.. while listening to whatever the hell I want (Snoop Dogg, or a crime podcast, usually), as I snap my fingers in the car on the way to pick my kid up from Marching Band.
I should definitely add that things have gotten a lot better between Jack and his dad. I think maturity on Jack's part has something to do with it, as well as some understanding on his dad's part. Not all moms are great with the whole Autism thing, but I think dads have a much bigger struggle, as a whole. Some are great, but others just really suck. Why? Because they feel like a failure. Or, if they're being honest, their child didn't meet their expectations, and they're not sure what to do with that. My husband cried after the diagnosis, because he thought he'd never have a relationship with his son. I've since come to realize that Jack (and his sister) is a LOT like his dad. I wouldn't be surprised if my husband was on the spectrum. In fact, hell, I might be. Regardless, my son is so high functioning, and they have the whole gift of understanding when it comes to computers, that they could hardly not find common ground! With the huge changes Jack as made in the last year, and with my husband finally coming to understand Jack as a person, there is a lot more respect on both sides. I'm not saying our lives are all perfect, but Jack is defended a lot more now by his dad than he had been before. It could be the age level- his dad can think back to when he was a young teen, and remember what it was like to be misunderstood by people. I think having a son with Autism has been a gift to him. Especially since he's since ended up working with someone who so obviously has ASD that he can now see that his son will have no trouble (God willing) functioning out in the real world some day.
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