I am the mother of identical twin sons. They turned two in November.
At 12 months, they seemed to be moving right along in their development. They were walking, starting to say words; everything seemed fine. I was a little worried they were late in talking, but they were talking, so that was something. By 15 months, they still had very few words but they were both doing some signs and also had a full repertoire of “action” songs in their arsenal. By 18 months, there were no words. None. No signs. No action songs.
Everything was easily explained away as a boy-thing, or a twin-thing, or an identical-twin thing.
We tried not to worry.
Friday, they had their first visit with Early Intervention. I wanted to get their speech back on track as soon as possible. Language delays were our number one concern. Of course, in the back of our mind, we’d thought about autism, but we weren’t going there unless we had to. It’s too difficult.
After thirty minutes of watching the boys “play,” and watching their interactions with me, the Early Childhood Development teacher and the Speech Pathologist, there was an early diagnosis of sorts. They weren’t as concerned with the language as they were all of the other things: they didn’t really play with their toys, they didn’t really interact with, well, anyone in the room.
Early Intervention wanted to proceed with autism evaluations.
The next thirty minutes involved me, sitting on a chair nursing my four-month old. Trying to not to break into an ugly cry, trying to keep it together and sound somewhat intelligent until I could get all of these people who just brought my whole world crashing down, out my door.
I don’t know where to begin. Too much has happened in my life, it even seems unreal to me at times. My coping mechanisms are different than most people because I have Dissociative Identity Disorder, or DID for short. I will try to be as clear as I can about the events while protecting myself from the grief.
The first trauma – I was sexually abused by an older brother from ages of 5 until 9. That is when my DID began. When I was 9 years old, my mom committed suicide. Her suicide had 2 lasting effects on my life- 1st, it sent my abuser away to live in another state and 2nd, it formed a wall inside of me that will always and forever prevent me from taking my own life.
My twin brother and I went to live with our paternal grandparents. It was not always easy there. I don’t think or believe the same as the rest of my relatives, so while not exactly worthy of outright hate, I was not worthy of unconditional love either. I tried to earn love and respect by getting good grades in school, but that only seemed to alienate me further. My grandparents were hard working farmers and completely illiterate. I would keep my mouth shut, so my “book learnin” wasn’t quite so obvious.
It wasn’t that they didn’t care, I think they just didn’t know how to respond to me. They felt uncomfortable with me. I loved them anyway.
My dad was a truck driver. He drove “cross country,” so he wasn’t home much. Once, he was gone for 2 years. I used to sit on Grandma’s front porch and wait for him, hope in my heart for the slim chance of him coming home. When he did arrive, he would flood my twin brother with gifts and stories. I would get a hug and a pat on the head. I wanted to sit on his lap, to hear the stories, to ride in the “big rig” with him like my twin. I still don’t understand how being a girl made me unequal. I needed him to love me the way he loved my brother, but that would never be the case.
After I was married, he came to my house looking for my twin. He had not yet met my newborn son. I begged him to come in. I would make coffee, we could wait together for my brother to come home. He stood at the door and said he would come back when my brother was home. I shut the door, slid down to the floor and cried. Why was I so unlovable? Why was I not worth an hour of his time? After that, I decided that I was done begging for his attention. I had my own issues to worry about.
My husband was abusive. I left him when my son was 6 yrs old. I moved in with someone I met online, a terrible decision because he was not good for me or my son. I left him too, and quickly found myself living in my dad’s basement.
I went to college, earned all A’s and a degree, and met a wonderful man. He does not abuse me in any way, and I finally felt loved for the first time ever.
My son was 15 by then. He had undiagnosed autism and an IQ of only 72, but we tried so very hard to create a safe and loving home for him. Sometimes it was really difficult, he was rebellious towards my boyfriend, never wanting to listen to him. I cringed every time I heard him say, “You’re not my dad.” We worked to try to make things better.
When my son was 19 years old, he came home from school one day and told me he had met a wonderful girl and wanted to date her. The problem was she was only 14. Her parents were divorced. I spoke with her mom, and she was alright with the situation. I never heard from the girl’s father, figuring I would get the chance at some point because he welcomed my son over to his place once or twice.
It was early morning on a Friday. I went to check on my son. There was no answer when I knocked on his door. I open his door a crack. It smelled like old socks because he never cleans it, but he was not in bed. His backpack was gone. I figured he must have gotten himself off to the school bus by himself, unusual, but I was happy about it. I spent the day dreaming of the wedding I hoped to be planning with my boyfriend soon.
When my boyfriend arrived home, I realized that my son was not home from school yet. I told myself he was probably at his girlfriend’s house having dinner, so I had my boyfriend call over there. At first, my boyfriend was silent, then he stood up and turned on the TV. There on the news, was a picture of my son and his girlfriend. The caption on the picture said, “Man, 19, kills 14 year old girlfriend’s father.”
In that moment, I lost everything that I had ever held dear, my hopes and dreams gone, blasted away in pain, regret and remorse. What did I do wrong? How could I not know that was going to happen? I blame myself every single day …if only I knew what was happening, if only I would have done things differently …if only …IF FUCKING ONLY!!
That was 8 months ago. I have not been able to touch my only child. He does not emote very well, never has. He will go to trial in the spring. The best I can even hope for is that they will put him into a mental institution instead of a prison …but how likely is that? I don’t know. I know if you are capable of doing something like that, you need to be kept away from society. He had never been violent before, and has not been violent since. He waited for the police, admitted his guilt. He cooperated and did not flee.
My son was nearly strangled to death already. It is a painful reality that he will not do well with the rest of the prison population. He cannot read people’s emotions, and does not understand when someone is being sarcastic. His mental age is 14, and he is easy to manipulate.
My boyfriend is still with me, thankfully. My twin still talks to me, but my dad and grandparents passed away before all this happened. The rest of my family speaks ill of me because of my “different” ways of thinking. My community hates me because I am the mother of a murderer. I feel completely and utterly alone.
I am not suicidal, I won’t take that road, even after all of this, but I am not actively living now either. So, where does that leave me? I don’t know, but I don’t like it.
A couple of weeks ago, we finally got an official diagnosis for Alana, one of my twins. The doctor confirmed our suspicions. She definitely has Asperger Syndrome. According to the doctor, there are changes in the works in the medical community to eliminate the separation between Asperger’s Syndrome and Autism by referring to them all as Autism Spectrum Disorders. That’s just a dressed-up way of saying our family has yet another mountain to climb.
I guess the formal diagnosis shouldn’t really change much in our lives. We’ve suspected for several months and we’ve already taken steps to try to help her. We’ve eliminated red dye from her diet, learned to remove her from situations at the first sign of sensory overload, and tried different coping methods to work through the inevitable meltdowns.
But somehow, having the words written that will forever label her…well, it does change things.
Last night, I went through my nightly routine of teeth-brushing and face-washing, and then I checked on the kids. They are five and two, and I still can’t go to sleep without checking on them, making sure they’re breathing, and saying a little prayer over each of them.
I got to Alana’s bed last. I sat there on the edge to watch her sleep for a minute and give her a kiss. As I looked at her, the reality of her diagnosis hit me.
Sure, we expected it. And just like I do with my health issues (RA and Fibro), I’m constantly doing research, trying to find tips and tricks for handling this. I’ve thrown myself completely into figuring out what’s going on in her brilliant mind and helping her through her struggles. But I don’t think I’ve let my heart in on the process. And last night it learned what was happening and screamed in protest.
“THIS IS NOT THE WAY IT’S SUPPOSED TO BE FOR HER!”
She’s not supposed to have to struggle to make friends. She’s not supposed to get so anxious over a picture she’s drawing that she starts crying because she messed up and thinks other people won’t like it. She’s not supposed to have a compulsion that makes her chew the skin on her fingers until they bleed. This should NOT be happening to my child!
There are so many things that are much worse than ASD. I know that and I thank God every day for the health of all my children. But I think every parent can understand that I had a vision of how things are supposed to turn out for my kids. They’re all going to grow up and have plenty of friends, go to college, have a great career, get married to their soul mates, have beautiful healthy babies, etc. And while I know that they will ultimately forge their own destinies, I guess the common thread in what is supposed to happen is an absence of pain.
Pain is part of life.
There’s no question about that. As much as we want to protect our children from it, it’s going to happen. Our job is to be there and help them through it. And while I watched her sleep, I realized that she’s likely to be dealt much more than her fair share of pain. There seems to be new stories every day about children with autism being abused or bullied. The last few months that Alana was in daycare proved that it starts early. The four-year olds didn’t understand her anxiety and meltdowns so they would pick on her about it. It brought me to tears.
As much as I worry about her in social situations as she grows up, I am constantly amazed at the gift that Asperger Syndrome has given her. We always knew she was very smart. As I home-school her, though, I’m seeing evidence every day of just how different Alana is by comparison.
For instance, a few weeks ago, she got her Hooked on Phonics Kindergarten Level 1 book and started reading it to me. She sat for an hour and a half straight going through the last seven lessons in the book. No DVDs, just her. I feel like I’m not even needed now when we work on reading. We’ve completed one-quarter of Kindergarten and she’s reading every one syllable word she comes across.
Beyond scholastics, she understands things on a deeper level than even I do sometimes. Since our last appointment with her doctor, she and I have talked a little bit about what makes her “different” than most other kids. I told her that the symbol for Autism is a puzzle piece because we still don’t know much about it and we’re trying to fit the pieces together.
A few days later, she brought me a piece of paper with a few colored pieces glued on randomly. She said, “Mommy, this is your puzzle. Every day when we figure out something else about me you can glue on another piece until we have it all put together.” Just one of the many things that surprise me coming from a five-year old.
I admit, I had a rather weak moment last night, sitting there on Alana’s bed.
I try hard to be positive and look for the bright points. But sometimes the worry, the pain, the fear all break through and dark clouds roll in. Then, Alexis giggles while she wrinkles her cute little nose, or Avery tells a 2-year old version of a knock-knock joke, or Alana says something really profound.
Then the light comes back, reminding me of just how blessed I am and how much I have to be thankful for.
This is adapted from something I posted June 18, 2010: Autistic Pride Day. I’m bringing it over here because I’m thinking that if you or a loved one is newly diagnosed with Asperger Syndrome, you might not want to hear any more doom and gloom. You can find plenty of that in the many wonderful, helpful, but somewhat depressing textbooky tomes that are available at your local library. Asperger is challenging, yes. But it is also kind of awesome.
Autistic Pride Day. I know what you’re thinking: Didn’t I just see a bunch of copied-and-pasted status updates on Facebook about that a few months ago? Nope. That was World Autistic Awareness Day, which is April 2 every year. World Autistic Awareness Day is about letting you know that autism exists. Autistic Pride Day is about letting you, the neuro-typical person (or “NT” to us hipsters) know that autism can be kind of awesome.
There is a whole world of autistic pride and politics that I’m just learning about. (The most helpful piece of advice I can give you is that getting worked up about the politics of autism does not help the newly-diagnosed person one bit.) Autistic Pride Day is promoted by Aspies for Freedom, an organization that pushes not just for autism awareness, but awareness that autism has both advantages and disadvantages.
Let me just say this: I’m pretty sure the people at Aspies for Freedom are talking about people with fairly high-functioning Asperger’s Syndrome. If you’re the mom of a severely autistic child who’s still nonverbal at age 6 and never smiles at you, you’re probably ready to tell the nice people at Aspies for Freedom that neurodiversity can suck it.
Little Dude is more along the lines of the high-functioning Asperger’s. And I can certainly say there are distinct advantages and disadvantages to our situation.
In the spirit of Autistic Pride Day, here is my Top Ten List of Asperger Syndrome Advantages and Disadvantages.
Disadvantage #10 Little Dude eats the same thing, every day.
Advantage #10 Meal-planning is a snap.
Disadvantage #9 All Legos, all the time.
Advantage #9 May grow up to be the next Frank Lloyd Wright.
Disadvantage #8 Obsessive-compulsive behavior means we can’t leave the room unless the television and the power strip are turned off.
Advantage #8 Asperger’s Syndrome is the new “green.”
Disadvantage #7 Makes odd, surprising noises.
Advantage #7 Maybe other kids will think he’s beat-boxing.
Disadvantage #6 Despite having advanced vocabulary, Little Dude’s speech is sometimes very unclear.
Advantage #6 Woman behind me in check-out line doesn’t realize Little Dude is talking about testicles.
Disadvantage #5 Does not make eye contact with friendly pediatric nurse.
Advantage #5 Does not make eye contact with anyone at Walmart.
Disadvantage #4 “Motor-planning deficit” means he struggles to take off his own shoes.
Advantage #4 “Unusually intense, narrow area of interest” means he can beat adults at Wii Lego Star Wars.
Disadvantage #3 Talks incessantly about Legos, Star Wars, and Lego Star Wars.
Advantage #3 No longer talking about Dora.
Disadvantage #2 Sometimes says insensitive or inappropriate things.
Advantage #2 These things are hilarious.
Disadvantage #1Random muttonheads Concerned strangers ask me if I think he’ll be ready to potty-train sometime soon, why is he flapping his hands, and oh, you mean he’s like Rain Man?
When you are in pain, part of you wants to shut yourself off from the world in your own discord, but there is another part of you that wants to take that pain and hand it to others – the gift of misery. In doing that, you hope that someone will see and understand what you feel; that may never happen, but it’s a chance we all want to take.
I lost my dad on July 1st of this year. The loss of a parent is devastating, full of sadness, guilt, reparations, and so on. But it is so much more…and this is my story.
My mother and father were married when I was six years old. My biological father was 5-years gone (out for milk? gone for bread? Nope. Just a loser leaving his wife and kids, it seems). So, my step-dad (and, moving forward, this will be the only occurrence in which you will see this word, because it is woefully incorrect) became my Dad. And we were instant soul-mates. My mother and my sister were always so close and so tight; when my mom and dad married, it felt like I had someone of my own.
Growing up, it was ever apparent that we had common interests and personalities. Out of seven kids, I was the baby and the proclaimed “weirdo” of the bunch. I took (take) so much heat for being “different” and “sensitive,” but my dad was always there, wanting to know about my life and wanting to know about the things that made me happy. My teenage years weren’t angsty – they were filled with friends, activities, and a parent who was there for every stupid teen-aged emotion I went through.
My adult years were tougher. I was in an unhappy marriage for many years and my first child was diagnosed with autism. I can’t begin to tell you what a blessing having my dad as my companion through all of this was. I didn’t have a husband that wanted to go to doctor appointments with me and my son (he could’ve given three shits less), but I had a Dad who wanted to be there. He wanted to learn with me. He wanted to help. He gave me time, love, understanding and peace.
And he was ALWAYS there.
And, now? I’m 35. At an age where I should be helping him in return for everything he gave to me, he’s gone. And I mean GONE. I can’t take comfort that he is “looking down on me” or “always with me” because I don’t FEEL it and I sure as fuck don’t SEE it. I feel angry. I feel alone. I have to accept the fact that the best friend that I (and my two children) ever had is never to be seen or heard from on this Earth again.
I have to look at my mom. My mother, who after so many years, is alone. I should be there for her, and GOD KNOWS I do try, but all that really does is make the absence of such sunshine that much more pronounced.
Two weeks after we buried my dad, I remarried. Two weeks after that, I was off to Europe for the trip of a lifetime. I have a beautiful family and a lovely home – but the emptiness I feel sometimes overshadows everything. How do you get through it? How does every memory that gets jogged at random times during the day not absolutely break your heart?
I miss my dad so much more than I can ever adequately describe.
