It’s taken me a long while to write about this because of how sensitive the feelings of those involved are.
Let’s first visit the day we found out that not only was Acroboy on the Autism spectrum, but that he has ADHD as well. I really wasn’t surprised by the dual-diagnosis, but it still hit me hard. I knew with the diagnosis just how hard life could be for Acroboy. Add to that pregnancy hormones, and it was a pretty emotional day. Even though I expected the diagnosis, it feels like a mourning for the child that will never be.
I was driving home from our favorite Autism center, and I got a phone call from my sister (J). She told me that I should not have my mother come out to help with the new baby because, “to be blunt, your kids overwhelm her.”
Wow.
Ouch.
Now, my mom has had lots of health problems and I was already trying to figure out an alternative. (She had called me up an announced she was coming out to help a week or so prior). I have steep stairs in my house and my mom has knee problems as well as Lupus, and stress makes her Lupus flare up. I didn’t think this was necessarily a good combination.
Then I hear, “Besides, this is your sixth. Shouldn’t this be old hat for you by now?”
What???
Wow. Way to kick me again when I am down.
My sister, bless her heart, has only one child. She wanted more, but they were unable to have or adopt any more children. I know she didn’t have a frame of reference for why help is appreciated with additional babies.
I then had to explain to her that I was aware of my mom’s limitations, and was already figuring out an alternative. I was frankly pretty ticked off she would tell me this when she had just come back from dragging my mom to Disney parks for several days. I felt it was quite hypocritical of her. I was initially stunned, but then called her back and told her how I felt. She protested her husband was the one to arrange the trip–it took her by surprise. We tried to patch things up a little, but there was a definite rift there that had not been there before.
We had a family gathering with many of the cousins my children hadn’t seen much of since our move out of state. The visit coincided with Whirlwind just starting to notice girls. Hugs have always been tricky for him. He either shuns them completely or tends to hug a second or two longer than what most people would consider normal. Pair a second-too-long hug with an unfiltered comment and an “attempt” to talk to cousins by following them around or hovering near them and suddenly my son is perceived as the creepy, perverted, stalker cousin
We need to go back further to explain the deeper problem.
Just before we moved, I had asked my mom to help watch the boys while I completed our family’s final preparations. Two half-days of dealing with three energetic boys was too much for my parents. I realized it was probably a good thing they never got boys–even when they were getting along, the boys were just loud and that itself was hard for my parents. My mom and dad had also never encountered impulsiveness and an easily frustrated and angered child like Whirlwind.
In short, those last two days cemented an opinion that Whirlwind was a “trouble-maker”. It didn’t help that he had hit his brother with a very sturdy toy.
The most time we spent with everyone was several years ago when we returned to my home state for three weeks to help my mom and dad as she awaited a liver transplant. At that point we were still trying to address Whirlwind’s ADHD through the gluten, sugar and dairy free diet alone and with nutritional supplementation. It wasn’t going well on our visit, because my parents used to have sweets all of the time (and Whirlwind didn’t understand why I was restricting his favorite foods, and sabotaged the diet at every opportunity). My family more or less staged an intervention and asked me to consider trying medication for Whirlwind and Lawboy for at least two weeks to see if it would make a difference for them.
So we met with our old pediatrician (who still had our records) and began the process of figuring out which medication would work best. We first tried Concerta and that left Whirlwind an emotional mess everyday. (FYI- Concerta works great for my friend’s son, but it wasn’t a good fit for my son’s body chemistry). Our visit to my home state came between another move and the weird limbo that comes when you haven’t sold your home yet. Long story made short(er), we eventually found a medication that works for Whirlwind and for Lawboy, but it was a long process with our pediatricians. The downside is my family really hasn’t seen the boys in the years since their “intervention”. I’ve told them about the good things the kids have done, but it they haven’t seen it for themselves.
So my family had fleeting and not-great perceptions of my second oldest and didn’t really understand what Autism means. They didn’t know that conversations are difficult, that the boys don’t pick up on subtle body language or understand appropriate interpersonal spacing or all the other little things that go along with Autism.
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I was too wrapped up in taking care of Baby Girl and catching up with family to catch what was going on with Whirlwind and his cousins until the damage had been done. Also, I guess I was hoping that my kids would be loved for who they are. My husband’s sister has always been great that way. She knows they have their troubles, but she loves my kids and thinks they are great–just as they are.
I should’ve known better.
We had Whirlwind apologize for his comment, but in retrospect I’m not sure I did anyone any favors. I tried to talk it out a bit with my family, but it really became abundantly clear they had no idea what life was like for me and my family. I think a brother-in-law thought I was using Autism as an excuse, because he’s somewhat familiar with it in more severe forms. I got the distinct impression my family viewed Whirlwind as a damaged and trouble-making child.
We left my home state feeling hurt and rejected.
I’m pretty sure I hurt some feelings because I told my parents that if anything were to happen to DH (DearHusband) and I that the children would go to his sister because she loved them–no matter what.
I think it was a wake-up call for my parents. They started asking more questions about Autism and asked me to send them links I thought might help. They began to learn little by little.
We were making progress but then my sister J, came out to surprise our sister, N who lived two hours away from me. She brought her daughter. I offered to let them stay here with us, but it she refused on the grounds it would make her daughter too uncomfortable.
Ooooookaaaaay.
I guess we hadn’t made as much progress as I had thought.
J came up to stay with me for a couple of days, and began to catch a glimpse of what my life is like. She and I had a really good heart to heart, and while it didn’t fix everything, it was a better start than before. We both realized we had made mistakes.
I had been so afraid of the label of “Autism” limiting my children, I didn’t really see I had been limiting them because I was unwilling to talk about it. That was one of my mistakes.
We had a pretty good visit, except that on our last day together we went to do some exploring at an in-between historical place and there was a confrontation with Lawboy. Lawboy was without his filter, and was rude to both myself and J. J has often taken up for me in the past. She was offended and told Lawboy off for being so rude. I realized I had been making excuses for Lawboy’s lack of filter and could be doing a better job of instructing him about when his “honesty” turns into rudeness. He is a bright boy and has done much better since then. He became somewhat apologetic, but the visit ended on a sour note.
The memory of the end of that visit caused J to reconsider a later offer to watch my kids so I could get away with DH to celebrate our 20th anniversary early. I gotta admit that one hurt. I had hoped we had made more progress than that.
In the time since then, J has helped N care for her four children as N was having her fifth child and prepping for a cross-country move. Upon completing her child-tending duties, she apologized profusely and several times for her earlier comment about how “it should be old hat” for me to add another child to the busy mix we already had. She honestly had no idea, and now she does.
Even though we’ve had setbacks, overall we’ve moved forward as a family. I try to let my family know the awesome things the kids are doing. I talk more openly about our struggles, triumphs, failures, and the various therapies and appointments we keep with Autism.
Autism is a big part of my family. It helps make us who we are, but it does not define us. I am lucky in so many ways. I am lucky my kids are highly verbal. I am lucky they do well in school. We still struggle with things, but I don’t hold them in any more. I tell my sisters how I had come up with basic rules for social interactions with girls. I tell them about food therapies, about great books I’ve read. It turns out I’ve had some great conversations with my oldest sister, S, who has her own challenges with kids with ADD/ADHD and other behavioral issues that have arisen in her kids in recent years.
I share my joys and struggles with them and they share with me.
We had a family reunion this year. It was the first time the whole family was to be together in TEN years. We’ve had other gatherings, but someone was always missing before. I was pretty nervous about how well things would go with my nieces and nephews since the “hugging misunderstanding” of years before. In the end I decided to write a letter to my nieces and nephews to help them understand their cousins a bit more too.
I am glad I did. You can read the letter here.
The key to avoiding misunderstandings is good communication.
That is something we are all striving for now.
