Happy Mother's Day

One thing about parenting an Autistic person that no one tells you about is all the holidays you will miss. I never had my son wake up at the crack of dawn thrilled to open his Christmas gifts. Or hear the crinkle of cellophane as the Easter Bunny creeps into his room with a massive basket. It's not that we didn't do lavish gifts that an only child experiences. It's that he didn't notice and didn't care that much about it.

My sweet boy. 
I knew something was "different" about him even at this age. 

When he was little, Daddy took over the job of making him do my card and a gift for Mother's Day. But now that he's 32 that's gone with the wind. Don't get me wrong. My husband still treats me like a QUEEN every day and especially on Mother's Day. Because he knows that's something I'll never get from our son. Not for a single day. Not my birthday, not Mother's Day. My mother also always gets me a Mother's Day gift because she knows I'm a good mom and that my son won't do anything to mark the day.

 

 He still is this brave. 
I am proud of him every day. 
Well... almost every day.
 

There will be no "taken out to lunch" by my son. No flowers. No card. Maybe he'll remember and I'll get a text saying "Happy Mother's Day." But that's if I'm lucky. 

My sweet mom and amazing husband do their best to fill in the gap, but it's still a loss that I feel every year. It's one of the glaring moments that shine a light on the challenges of being Autistic. I honestly feel worse for him than I do myself. He's missing out. Missing out on the closeness that other's take for granted. It's just him. Alone. In his own world.

When he was little I once told him that I constantly feel like I'm holding onto a rope that's tied around his waist and I'm pulling him back to the "real world" for fear that if I let go he will completely slip into his own dimension in his head. He agreed that that's exactly what it felt like for him too.

 

Monterey is still his favorite place. 
We need to plan a trip and go soon.

His novels actually explore that theme very well.

But again, it's all about him. 

You share a life when you have a child. Not to share that life, but to still have them physically there is both odd and upsetting. I do a good job of trying to always see things through his eyes. But once in a while that is hard to do. Like on special holidays.

Now that he's an adult I never expect him to participate in family events. I let him know what we're doing and make the offer. But usually it's too crowded, loud and busy for him. Even with headphones and his laptop with him. I get it. Again, from his point of view. But as a mother, of course I would love to have my son there. I'm proud of him. He's an amazing person. I wish more people knew just how amazing he is.

But I'm the one holding the rope. In reality it's always been just him and me. And I'm sure it will be that way until the day I'm no longer here. 

Invisible Disabilities and Their Lessons

My son has a form of high functioning Autism. Being his mother has prepared me well for living with a chronic, systemic illness. His disability was also very invisible to most people. I learned fast to educate myself as much as I could about his disorder, his needs, his medical appointments and specialist appointments, his therapies and how to help him overcome his challenges by leaning on and building his strengths. All of those skills are completely transferable to my situation (and any chronic illness condition really.)

My son is now 24 and is a wonderful advocate for himself. Here's some things being his mom has taught me that's relevant to dealing with any chronic condition:

1. Document EVERYTHING! Keep your own records and keep copies of anything important. I have my own binder where I keep research studies that apply to my health, important test results, handouts doctors give me and referrals from my health insurance.
2. You won't know if you don't ask. I never assume that I won't be able to have something unless I ask. I got my son excellent occupational therapy when he needed it and now I'm in the process of doing the same for myself.
3. Work around your disability. There are some things that are still hard for my son like tying his shoes or riding a bike. He wears slip on shoes and loves to walk everywhere. I'm no different. Carrying heavy bags is hard for me, so I'm more and more getting big bags with wheels that I can push or pull instead of carry.
4. Be organized about your medication. A weekly pill box (the kind with the days of the week on it) is all I need right now. But in the past I've used alarms, individually labeled dose bags and other tools to remember to take my medication. My son also has a system that works for him. It's all about finding a routine that works for you and sticking with it. What works for him is a tray that he keeps his keys and wallet on next to his pills. Then before he leaves every morning he takes them.
5. If someone tells you "no" ask "why?" I don't take no for an answer and need to hear the logic behind the "no." Sometimes I can even change their mind.
6. Don't be embarrassed of your disability or shy away from advocating for yourself. My son is brave, amazing and will talk very openly about having Autism. He disclosed to his employer during the interview and got the job anyway. It was something we talked about before hand and he felt it was important to be transparent because it's such a big part of who he is. With an invisible challenge there's a pull to hide your needs and not disclose. My son inspires me to advocate for myself instead.
7. Educate yourself as much as you can. Knowing all the language about Autism (words like "stimming," PDD-NOS, DSM, comorbid...) was very important when talking to professionals who could help us. It's a shared language that made them take us seriously and quickly communicated what we needed. Now I'm doing that for myself with RA. I could say "I'm having tingling in my arms and legs" or I could say "I have stocking-glove pattern neuropathy." Both basically mean the same thing, but the second is in a language my neurologist will understand and respond to.
8. Find good friends. If someone didn't want to be his friend or wasn't interested in him, my son couldn't have cared less. He moved on till he found people who did. Subsequently he has a very large social life and some truly wonderful friends. Many have been there for him for years and years. I on the other hand tended to draw people who would just take and take from me. Over time I just didn't have the spoons for that kind of a relationship anymore and I moved on.
9. Always think the best of people. My son is incredibly kind and is always there to help other people. He's told me some amazing stories of seemingly small things he's done at work (like comforting someone whose having a bad day.) He has a gift (like his father) of seeing the good in people and brining that out in others. I tend to be much less trusting and keep more to myself. It's something I'd like to change though.
10. Give things a try. My son trusts his doctors and always at least tries what they suggest. I on the other hand sometimes feel like I know better and am hesitant to trust my doctors. I'm trying to let other medical professionals in and allow them to help me, but it doesn't come easy to me.