Family Dynamics and ASD

First of all an update on me. I am feeling much better than I was a few days ago. I’ve done almost nothing but sleep the last couple of days. I still feel like I’m carrying around a heavy weight, but each day it gets a little better. It is difficult to get past Apathy, and then there is Anxiety, who is egging on Apathy. Sometimes it seems like my whole life has sucked and it keeps on sucking. There are good parts in my life, and I am trying to focus on what I do have, rather than what I don’t have. Which is a lot. But. Onward and upward. My ever-positive mother said “Maybe something good will come of this.” I’m like, “What, Mom? What could possibly ever come out of this that I would consider good?” Unless someone came into the office and handed me a check for a million dollars and I could quit and retire. Or they would decide to close the local office and I could work from home 100% of the time again. Otherwise, no.

Anyway. A few days ago I blogged about my brother who has Asperger’s. If you missed it the post is here: Asperger’s Syndrome. Quick recap: Asperger’s is a form of high-functioning autism. Back in the 60s and 70s when we grew up, there was not much, if any, knowledge of autism or autistic behaviors. The kids just thought my brother was weird and teased him unmercifully. His inability to read social cues caused him almost constant stress. Teachers and my parents would get exasperated with him, because they thought it was being stubborn and doing the behaviors on purpose. We were bewildered. He always got good grades, and went on to earn a bachelor’s degree in Accounting.

One thing that isn’t talked a lot about are the siblings of people with a disability, and how that disability changes the dynamics of the family unit. I’m not speaking from any expertise at all, just simply anecdotally from my own experience, and the experiences of family members, as my cousin has a developmental disability. This also applies when a family has a child with a serious illness, such as cancer.

When a family has a child with special needs, either long-term or short-term, the parents and other adults in the extended family should be aware of the needs of the other children in that family. It’s easy to become hyperaware of the child that needs extra attention and forget that the other children in the family are essentially being ignored or marginalized. Obviously this is not being done on purpose. Parents are human, too, and when one child requires so much daily care and attention, there often aren’t the emotional and physical resources for others, including spouses.

I was always the “good girl” and people pleaser in my family. Growing up, my brother was so difficult (not knowing, of course, of his autism spectrum disorder) that my mother frequently said to me, “I’m so glad you are so good.” What she meant, of course, was that I didn’t have a difficult personality and require a lot of attention.

But I did. I sat quietly in the background, wishing that I could get some attention, too. Once when I was around eight or nine years old, I purchased my first Barbie with bendable legs with my birthday money. I was so excited! I couldn’t wait to open the box and play with her. When we got home from the store, I excitedly opened the packaging and took her out to play with her. My little brother, who was probably five at the time, wanted to see the doll. I’d had her out of the box for maybe 30 seconds, and I didn’t want to show her to him yet. My brother got mad that I wouldn’t let him see her, and grabbed the doll by the legs and yanked. Naturally, I didn’t let go and the doll’s bendable legs broke at the knee. I was heartbroken. I started to cry, and my mother came in to see what was wrong. I explained, tearfully, what my brother had done. Instead of getting mad at my brother, she scolded me, “You shouldn’t have pulled back! You are older and should have known better!” My brother smirked at me.

I never had the money to replace the doll, and so I had a broken doll instead of the fun bendable one I had wanted. My mother does not remember that, and was appalled at herself for having said that. I didn’t have the heart to tell her that was a frequent theme. “You’re older; you should know better.”

Oy! Siblings.

Even as adults, especially after he was diagnosed with ASD, I was expected to cater to his “diagnosis.” During my first marriage, when I was pregnant with my first child, my husband told me he wasn’t happy and wanted out of the marriage (hindsight: I should have just let him. lol). He moved out. I was devastated and frantically called my mother, trying to get some comfort. This was before cell phones, so I kept trying to call their home phone, kept leaving messages. The next day, I was surprised to see my mother walking up the sidewalk to our apartment. They lived three hours out of town, so I didn’t know why she was there but it explained why they weren’t answering their phone. Turns out, my brother had attempted suicide, and they were there to help him. I could see in my mother’s face that she didn’t have the emotional resources to help with my own crisis, and so I just sucked it up and dealt with it the best I could. I am not faulting my mother. I get it, I totally get it. I raised two kids on my own and some days it could be overwhelming.

Various things like this happened over the years, and unfortunately my own life was a series of muddled messes that I just had to suck up and deal with mostly on my own because my brother’s own life was more of a mess and he didn’t have the emotional resources to deal with it because of his ASD. My parents frequently rearranged and adjusted things around my brother’s inability to accept change and his rigid need to follow rules. I grew increasingly resentful of this, because I had needs too, but since he had a “diagnosis,” we all had to cater to him.

I once had a conversation with my mother about this. I told her, “If Brother was in a wheelchair, and couldn’t go on a hike, does that mean the rest of us would never hike again when he was around? We would all just stay home and not make him feel bad because he ‘just can’t help it?’ ” Inside I was screaming, “But I have needs too!!”

My brother isolated himself from family gatherings for over 20 years. He didn’t attend things like Christmas and Thanksgiving. He had a hard time dealing with large groups of people (I totally relate to this!) so he stayed away. I’m sure this broke my mother’s heart, but secretly I was glad. First of all, these events were much happier without my brother there to “Eeyore” and make things awkward. He could definitely be a “Donny Downer.”

Meanwhile, I had children, and as they grew up, and without my brother there, we moved opening gifts to Christmas morning. For whatever reason, growing up, we always opened gifts Christmas eve. Since my kids father (my first husband) always opened them on Christmas morning, I asked if we could start opening gifts on Christmas morning. Mom and Dad had no problem with this.

Then my brother got married in the early 2000s and wanted to start attending Christmas and Thanksgiving again. When Mom told him before they arrived, that we were now opening gifts on Christmas morning instead of Christmas eve, he was very upset. If you know anyone with an ASD you know how difficult and nearly impossible change is, especially a tradition like this one. Mom called me back and said we were going to open gifts on Christmas Eve as an accommodation to his condition.

I lost it. The prodigal son was returning home, and we were turning everything upside down just for him. Again. I told my mother that for the past 20 years we had been opening gifts on Christmas morning, and that Brother was just going to have to get used to it. My mother argued that he doesn’t do this on purpose. I told her I didn’t care, that I was sick and tired of always having to do things so it doesn’t upset Brother. I told her this upset ME and that it mattered to ME. I was tired of always having to take a back seat to Brother and his needs and his condition. I told her that they were all welcome to open gifts on Christmas eve but me and my teenage sons were going to open ours on Christmas morning. I told her that for once in my life I wanted things MY way, or I wasn’t going to even be coming on Christmas Eve anymore, that I would only arrive on Christmas morning. Emotional blackmail? Ummm not really. This is just a sibling who has reached a breaking point with my brother getting everything the way he wants to accommodate his condition, and absolutely never getting to have things my way because I don’t have a condition. I know now that I have severe anxiety, so I did have a “condition.” I just didn’t know it at the time.

As a result of putting my foot down, my parents agreed to open gifts Christmas morning and that’s what we continued to do even today. I don’t know how they got my brother to agree, but they did. Since that Christmas was the first one he was going to attend in 20 years, I think my mother was afraid that he wouldn’t come if he couldn’t open gifts on Christmas Eve like we “always” did.

So from broken dolls to broken Christmases, being the sibling of someone with special needs is challenging at best, and emotionally shattering at worst. My point to all this is that if someone in your family has a special need, be it a developmental disability, an ASD diagnosis, or long or short-term illness, please understand that the siblings are expected to be strong and mature beyond their years, so one way to help these devastated and overwhelmed parents is to pay some attention to the siblings. Take them out for an ice cream or a meal to give the overwhelmed parents some relief and to give the siblings the attention they are craving.

Believe me, I am not being critical of parents caring for a child like this, because it is nearly impossible to make sure everyone is taken care of emotionally while dealing with a child that takes up most of your time. Ask the parents, obviously, if it’s ok if you come by to help out, help with homework, some respite. Give the siblings an ear, allow them to discuss their feelings, because likely they are feeling broken because their parents are so tied up with the child who has special needs.

Parents, at least be aware that the other children in the family may be feeling neglected. You are not superhuman, you are just human and it’s okay to ask for help.

Thank you for reading. Hope you all have a great Friday!

Cheers!

Asperger’s Syndrome

Not that I’m counting or anything, but it’s Thursday late afternoon which means tomorrow is FRIDAY! Thus, tonight is Friday Eve! I really enjoy my job (mostly) but Saturdays and Sundays are a way to really recharge my batteries!

Although, this weekend, it’s going to be a little more hectic. My mother’s 91st birthday is tomorrow, so my son and his girlfriend, and my brother and his wife, are all going to be coming here on Saturday to celebrate! We are in the Orange Tier in California, so indoor dining is slowly opening up. I believe that means that restaurants can have 50% capacity but still have to maintain social distancing. Outdoor dining is also allowed, again with social distancing. We are going to try to go out to lunch somewhere. My fear is that everyone else and their brother will also try. But, we will see. Push comes to shove, we can always just get food to go and eat at my apartment.

My brother is on the spectrum. The autism spectrum. But, he is what they call a high-functioning autistic. They used to call it Asperger’s Syndrome, but now they lump it all into one category called ASD, or Autism Spectrum Disorder.

My brother is extremely smart. He does not have an intellectual disability, nor does he have a physical one. His disability lies in the fact that he has no social skills. Zero. Nada. Bupkis. He is very literal (and I mean VERY). He doesn’t get jokes because they are often a play on words. He obsesses over minor things that no one else cares about. He follows the rules to a fault. He gets mad and upset when others break them. Now, I am a rule follower and I color inside the lines. But my brother takes this to the extreme.

“Why are they speeding???”

When he drives and someone speeds, he gets upset and wants to know why they speed! Don’t they know the speed limit is 65? He drives exactly the speed limit. When people pass him or get angry, he gets very upset because he is doing the speed limit!! Why are they mad? He also cannot read facial expressions or emotions. He has had difficulty holding a job because he can be unintentionally infuriating. He does well with a job that does not involve time pressure (because he just freaks out) and he can work at his own pace and can work alone most of the time.

Here is an example of his literalness: About 20 years ago my parents purchased an expensive car with all the bells and whistles. It was Christmastime, and my brother and I were both visiting. We went out to admire the new car, and appropriately ooooh’d and ahhhh’d over all the fancy electronics. I said, “Oh my goodness, this car has everything except the kitchen sink!” My brother, absolutely deadpan, and absolutely serious, said, “Why would it have a kitchen sink??” Oy.

JUST STOP!!!

Our dad passed away last year, and after the service, my mother sat my brother and his wife and me down to talk about the paperwork that we will need when she dies. She gave us all the pertinent information about their bank accounts, the trust, etc. My mother discussed how the IRAs needed to be handled when the time comes, and my brother went down a rabbit hole about his retirement. He went on for 20 minutes about when he was supposed to file for social security, and what if he doesn’t have enough in there, and on and on and on. All I wanted to do was get home, get changed into my pajamas and mourn my Dad. It was in the middle of summer, it was hot, and my mom’s place is very warm. She doesn’t run the AC much because she is always cold. I was emotional, I was sad, and I was sweating. Finally, I snapped at my brother and told him to stop! This wasn’t the time, we’re not talking about his retirement, we need to get down to business with my dad’s affairs so we could go! My mother hates when I do that, but if I hadn’t, he likely would STILL be talking about it. Later on, my mother very gently reminded me that there is a better way to handle him when he gets like that and snapping at him just makes him upset. I get it; I really do. He can’t help it. But I DO NOT have patience like that. But neither my Mom nor his wife were guiding him, gently or otherwise, and I couldn’t take it anymore.

And don’t get me started on opening presents. I finally told our family that we are to use gift bags for my brother. No more wrapping paper, tape and ribbons. He would literally take 10 minutes or more to open a gift. It was excruciating. In our family, we take turns opening gifts so that we can see what each person got, and the giver can enjoy the reaction of the receiver.

When it was my brother’s turn, he would examine the gift, turn it all around. Then he would set it on the table, and pull out his pocket knife. He would painstakingly cut the ribbon, fold his knife and put it in his pocket, and then make sure he put the ribbon in the trash.

This!!!

Then, he would go back to his gift, sit down and examine the sides that had the tape. He couldn’t stand to rip any of the paper. He would get out his knife again (which he had already put away; don’t ask me why). He would painstakingly cut the tape on the sides and on the bottom, then close the knife and put it away. Then he would carefully take the paper off the box, fold it, and set it aside. Meanwhile the rest of us have grown grey beards and I’m rolling my eyes so far back in my head that I’m afraid they won’t come back!

If it’s a plain box, it is often taped down. He gets his knife back out, cuts the tape, folds his knife and puts it away. Meanwhile, I’m trying not to bang my head on the table next to me. I’m doing everything I can not to go over and rip the paper or throw his knife away. Lordy!

. . . Not this!!!

Finally, he opens the box, sloooowly opens the issue paper, then proceeds to very carefully examine the gift. If there is some sort of plastic thing on the shirt (he usually gets shirts) that he doesn’t know what it is for, he will spend another 10 minutes (you think I’m exaggerating, don’t you?? I’m not. Trust me.) talking about the plastic thing, what it is for and why it is there. You can’t just redirect him. He is like a freaking dog with a bone. He will. not. let. it. go. Meanwhile, I’m contemplating Hari Kari. We still always give gifts to him in gift bags. I told my parents that if they gave him wrapped gifts rather than gift bags, I wasn’t going to come to Christmas. I didn’t want to go to prison for murder, even if it would be justifiable homicide!

My brother is younger than I. He turned 60 last year, and I will turn 63 this year. His wife is amazing. She is endlessly patient with my often-frustrating brother. She loves him unconditionally, and it is absolutely amazing. She has transformed my brother. I used to call him Eeyore (not to his face of course) because he constantly walked around with a cloud over his head. She is 20 years younger than he is, and bless her heart, they really are simpatico. My brother is the happiest I’ve ever seen him. No more Eeyore, most of the time. He cooperates more, he is starting to get jokes, and you can even (gasp) joke around with him!! They’ve been married about 4 years, and it is such a relief to see my brother be much easier to be around. He still has his issues, but somehow she is incredibly patient.

I’m excited to celebrate my mom’s birthday that isnt through a window and that she can actually go out! But after a few hours, I will be ready for people to go home. As I mentioned in a previous post, I’m an introvert who can be sociable when needed, but only for a little while. And having rarely been around any people for the past year, I’m even more overwhelmed by socializing and small talk.

I have 16 followers now — Woot! I’m very excited that you are all here and I hope you enjoy my prattling. Love to have comments if you feel so moved. 🙂

Cheers!