Raising Twins On the Spectrum
Usually, our Real Mom ’s Share section is one mom sharing her insights and perspective on her special life. This issue, we had a unique opportunity to interview two moms…who each had twin boys somewhere on the autism spectrum . Carrie has twin 6 year old boys and Angie has twin 19 year old boys. Hopefully, this will reaffirm that none of us are really alone in this. We do have a com m unity that cares. Learn what they have to say…
Angie and Carrie Share
Parenting Special Needs: Can you give us a brief Description about your families?
Angie: My husband and I have been married for 21 years and we have our oldest son who just turned 20 in November and our twins are about to turn 19 on March 19th. The twins were both diagnosed on the spectrum; Robert was diagnosed in September 2001 and John was diagnosed 6 months later. Robert is a bit more impacted by his autism than John. Robert also has a secondary speech language delay. His life and his trajectory is very different but we hang in there. I have a degree in Special Education and have taught in classroom settings. I love to work, love to use my brain and I love to teach.
Carrie: We’re definitely a different combination. My husband’s actually 16 years older that I am. Our family is a mixture of all ages of children that ranges from the 20’s down to twins that are 6 years old. The twin boys are identical twins (mirror twins, in fact): Harrisen has been diagnosed with autism and Hampten has been diagnosed with Aspergers syndrome. Our 9 year old son was born with a limb deformity of his hand. It makes for a very interesting family…never a dull moment in our household.
PSN: What are some of the challenges of raising twins on different ends of the spectrum ?
Angie: Carrie, when I found out your twins were 6 years old, I tried to put myself back to that place when my boys were that age. It seems like a lifetime ago. It has been a little different for us because John is barely affected by his autism and my husband’s sister is quite severely affected by autism, so this was not something that was new to him. I learned about Autism through her. Robert typically has been placed in self-contained classrooms, much to my dismay. I have fought tooth and nail for inclusion for him to get him with mainstream peers and access to the general curriculum because he does thrive when he’s given that support. At one point, they were literally at 3 different schools. Robert was in a 2 hour a day pre-k for kids with special needs. John was in a special needs kindergarten that was a full day. Joe Jr. Was at a typical elementary school. There wasn’t just one central place that had all of the programs that covered their needs. We lived in Vancouver for 3 years when they were in grades 3,4,5. That was when we had full inclusion for all of them as well as full support, and they were all in the same school. Off and on as we moved from Georgia to Florida to Canada back to Florida and back to Georgia, I home schooled at different periods. Right now my son, John, is at the local high school and he’s doing well. He’ll be 20 next year, but, hopefully, he’ll graduate with a “bigger” (read standard) diploma. Robert is home schooled and we’re working on some things with him.
[1]John, Joe Jr. and Robert
PSN: Can you explain w hat has happened since you received your diagnosis?
Carrie: My boys were two when the doctor looked at me and said, “they’re not exactly walking yet and they’re not really talking. They have autism.” I looked at the doctor like I was completely dumbfounded. I didn’t know, at that point, what autism was. I had no clue what I was in for. I didn’t know anything about it. I said, “well, what do we do about it?” Then they said, “well the schools will handle it when it’s time for them to go to school.” They kind of let me go. I didn’t know what to do. I started doing research on it and started to figure out what this is and what am I up against? Pretty much over the last several years, I’ve been on my own doing this. I’ve been reading as much as I can, looking at articles, reading books and just trying to comprehend what it is, exactly, I’m in for.
Hampten started talking more than Harrisen did. You could actually understand sentences from Hampten by the time he was 3 years old. Harrisen was 4 and a half when you could actually understand a full sentence from him. I would say there i s a 7 t o 8 month difference between their developments. Hampten is more of an outgoing type. Harrisen is definitely a different type of personality. He catches on to things a lot slower than average. Even when potty training started! Children generally are potty trained by 2,3 years old, but my boys didn’t fully get potty trained until they were 4.
Now, they are both in kindergarten because I’ve worked… i can’t even explain how hard I worked. I guess you could say blood, sweat and tears. They’re not in special needs classes and I thank God for that. I want them to have some sort of normalcy with all the other kids. They are actually reading at a first grade reading level in kindergarten. The school is aware that they do have autism (but they do not have an IEP). They do have special needs teachers help them out when we do have problems. They’re not involved 100% if you know what I mean.
Hampten, he’s more into the sports, cars/trucks thing. Anything dad likes, he likes. Harrisen on the other hand, it’s electronics, board games, music, singing, etc… I look at it more like he’s good at being a wiz kid. He’s going to be captain of the chess team or the tennis team. Hampten would probably be quarterback of the football team. Complete opposites, literally.
The way they sleep, the way they sit in the car and even their vision is opposite. The eye doctor come out and his jaw was literally …it looked like his jaw was down to his knees. He said, “I’ve never seen this before. It’s mirror image. Same prescription…different eyes”.
PSN: What have each of you had to overcome being a mom to children with different abilities?
Carrie: The patience thing! Learning patience was the key thing because my family is not a patient group. Even if it’s just running up to the grocery store: Do we have everything that we need just to run up to the grocery store?? Do we have the right teddy bears? Just learning the difference between having a meltdown and having a temper tantrum, etc…? It gets very frustrating at times and you just have to learn how to have the patience to deal with anything and everything that can come your way.
Angie: I have the patience part…what I don’t have is a ton of self-confidence and self-assurance that I can do this and I’m capable of doing this and I AM doing it. It’s like never really feeling like I’m doing enough or doing the right things. I still struggle with that to this day, probably more so now that they’re older.
PSN: Have you experienced any “ah-ha” moments?
Angie: My “ah-ha” moment was when I found that what really helps me is a decision/realization that we’re not on anyone else’s time line. We’re not on anyone else’s milestone schedule. We don’t have to graduate when we’re 18 and go to college when we’re 18 and a half and drive a car when we’re 16. It’s whatever works for our family is the way it’s going to be and we’re going to be unapologetic about it.
Carrie: My “ah-ha” moment came when I found out that one of their favorite songs is “Mary, Did you Know?” In order to get them to calm down from their meltdowns, they’ll crawl up on my lap or they’ll be in their bed covered up with all their blankets and I just start singing, that’s when I realized that “ Mary Did you know” worked. I just have to sing that and they calm down. Not sure what I will do when we are in public, but I do have it on the iPhone ready to play!
[2]Hampten and Harrisen
PSN: Do you have any proud moments you wish to share?
Angie: I think the proudest moment with Robert has been regarding his artistic nature. He is a brilliant artist and he loves to draw, loves to work on the computer and draw on the computer and he loves the Beatles. He had done a piece of artwork on the computer of the Beatles and it toured several galleries in California as part of an art autism exhibit. Art and technology are definitely going to play a role in Robert’s future.
For John, it’s his affinity for drama. John had been home schooled for a couple of years. He was depressed, alone and he didn’t have friends. We moved to Vero and enrolled him at the high school. He was in a self-contained classroom and they did a special presentation (the VSA Program). It turns out that he has this real affinity for drama. He memorized his lines like it was nothing. Turns out he’s fearless on stage. He is now in a competitive drama troupe.
Literally, we didn’t know until last year that this was something he loved to do. We went to the district competition and he won this special award and those kids were swarming him, hugging him and yelling. I just cried, of course. It was a proud moment, but more so, it was seeing him being part of something and people embracing him, including him.. .that was just the coolest thing ever.
Carrie: When you sit there in your parent-teacher conference and the kindergarten teacher pulls out a book and says, “okay, let’s read it.” And all of a sudden, your special needs child is sitting there reading a book like a grown up. You can’t help but to tear up.
[3]John & Robert
Carrie to Angie: When do you find time for yourself?
Carrie: I feel like a mom, referee, wife, friend, etc…Even when I get home from work and everybody goes off to bed, I’m still doing things for other people it seems…
Angie: I’m sitting here nodding my head agreeing with EVERYTHING you said. I’m like, “oh my gosh, I totally get that”. I’m very fortunate because two and half years ago, my husband started working from home in an effort to help me out more. I think it is so important to find ways to get some time for yourself. Since we moved to Vero, I love to sit out in the sun and I find that it helps my mood and it helps me feel better. My husband and I, we are each others respite, so I would feel very guilty going away for a weekend and leaving him with the kids. I had some friends that are unfortunately no longer friends because they didn’t really understand that. We are just now able, fortunately, to get some outside help. Finding friends who understand your journey but don’t judge you by it. Do you have people? Do you have resources that can kind of help you with that so you and your husband can at least get out every once in a while?
Carrie: Not really. We’re extremely isolated. I have 5 other siblings and I really don’t talk to any of them. It’s just us basically.
Angie: I get that. I totally get that.
Carrie: That’s exactly what it is. It’s just us. My daughter, she’s 16 and she does watch them, but not for long periods of time. If it’s after 7pm, there are times that my husband and I might sneak out and grab a bite to eat, but that’s about it. There’s no “fairy tale escape night”. Yes, we have a wonderful marriage, but it’s almost like business, too. I don’t mean to say that in a bad way; we have a different type of respect for each other. I know he realizes everything that I do for the family and I do for him and I do for the kids. I also have a respect for him that a lot of wives might not have for their husbands; I know how hard he works. He’s a great man. But, what little bit of time we do get together is tiring because we’re both exhausted.
[4]Hampten and Harrisen
Angie: I totally understand. When my boys were your boys’ age, my husband and I both worked full time. Actually, when my boys were a little bit younger, we had a nanny and she was like part of our family. We had hired her when the twins were born so occasionally we had help with the kids. I had that guilt, that working mom guilt, but I was like “this is a great situation”. They’re able to be home, in our home, with a loving caregiver. We don’t have that now. Now that they’re older, we still would not leave Robert home alone and we likely would not leave Robert and John home alone. There are just too many variables. I would tell you, though, that if there’s a way you can find once a month even, to just let your hair down and not worry about, “oh my gosh, I have to get home because we’re in a hurry or whatever, “…just to go out and just spend time together, relax and be yourself and be that “whatever”. Just something that reminds you that you’re a woman. You’re a wife. You’re a person. You’re also a great mom. Finding that time will help your sense of well being so much.
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We thank Angie and Carrie for taking the time to share a glimpse into their special lives with us.
Read More: Real Moms Share [6]
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- Early Intervention: First Steps in the Right Direction [10]
- I Do Not like Being a Special Needs Parent and That’s OK [11]
- Coping with the Life You Never Imagined [12]
- Handling Your Child’s Diagnosis: Six Things Parents Should Do For Themselves [13]
- A Complete Guide on Positive Behavior Support for Children With Special Needs [14]
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This post originally appeared on our March/April 2016 Magazine [19]