Giving My Autistic Son a Voice = More Peace for Him.. and Me

Lee 'on the go' enjoying a ride with us

We had a great first visit with Lee at his new home on Saturday. He'd been at the new home (Intermediate Care Facility) for just five days, but it felt like we hadn't seen him in weeks. We took him for a ride, and got him his favorite treat at a drive-thru: a strawberry milkshake. He seemed calm and mellow, and when we first walked into the house he lit up with a look of surprise and huge smiles. How I miss his contagious smiles every day!

I've had a hard time adjusting (putting it mildly). I expected it to be incredibly difficult, but I didn't know it would come in huge waves that feel like they could swallow me up completely, and show up at such unexpected times. Letting go of wanting to nurture and pamper him, pick out his clothes every day, make sure he gets his snacks and hydration, appropriate toileting, bathing, comforting upsets, etc.. only a mother knows how to do those things, right? He's non-verbal, but at one point one of the caregivers told me he started yelling "Ma-Ma!! Ma-Ma!! Ma-Ma!!" over and over. I hadn't heard him yell that for years, and when he did it was under extreme states of frustration. It was unbearable to me to know this, and that night I couldn't sleep more than five hours because I kept hearing him in my head, yelling for me. The self-torment I go through! I'm realizing grief and loss is affected greatly by where we place our thoughts in each moment. I've been focusing on keeping my thoughts on things I do have control over, and remembering how good it is that Lee is in a place where he can receive care around the clock. No guilt, no worries.. just moving forward. Easier said than done, but I'll get there. I'm being gentle with myself and not expecting a lot in the beginning, and despite how painful it gets, I never lose my sense of deep gratitude. If anything, I'm feeling a deep awe for how incredible life is and how perfectly everything has fallen into place.

I spent this morning putting together a list of 10 things Lee would want people in the home to know about him if he could speak. Hoping it eases my maternal worries a bit, and will give Lee a voice when people read it on his wall. Years ago I worked in homes for developmentally disabled adults, and a list like this would have been greatly appreciated from residents' families.


                                                              LEE
                          10 Things I Want Caregivers to Know About Me
1) I don’t speak, and use a few signs, but I have very good receptive language; this means I understand what you say. Sometimes I shut it out because I get overstimulated, but please speak to me about plans for the day, and tell me things you think I might be interested in knowing- I will do better. Note: Sometimes if you sing to me instead of speaking, I enjoy it a lot. I love to hear music & singing!

2) I have a very high metabolism and need a lot of calories & water. Grazing on snacks is good for me, and you have to prompt me to drink water throughout the day. You will notice I am in a much better mood when I get my snacks and drinks between meals. Top favorite foods: Pickles, Potato Chips, Raw Vegetables (especially red & green peppers & onions), Cookies & Pizza.
Note: Red Meat & Pork tend to constipate me, and I wasn’t raised eating them.    

3) I love watching my favorite movies. I have an iPad with instructions in my top drawer if you don’t know how to help me use it. *I’m unable to navigate it all by myself, but I prefer choosing my own movies* I also have a back-up portable TV & DVD player, and a DVD collection in that same drawer. PLEASE call my mom or dad if you have trouble with devices: ph#_______________

4) I enjoy music a lot. Instead of movies, I enjoy a break with music. I have a collection of my favorite music CDs in my top bedroom drawer. My top favorites are Enya, Beatles, and Disney soundtracks.

5) I prefer deep pressure, especially scalp massages. I also enjoy giving high fives. If you sit or stand too close to me, I may not like it, but I really crave and enjoy being around other people. I like to observe others, and sometimes I find people to be very entertaining and funny; I have a good sense of humor, and sometimes you won’t know what I’m laughing at. Feel free to join me!

6) I love water. Warm showers help to calm me down, and swimming is one of my favorite activities. *If I get morning showers, it wakes me up and makes me feel better for that day* If you take me swimming, make sure it’s not too long (30-45 min) because I drink the water.

7) If I’m upset and yelling it’s nothing personal. It’s usually because I feel out of control in the moment. I don’t stay upset for long, but I get upset almost daily because I can’t speak my wants and needs. If you can figure out what’s wrong, please help. Otherwise, I need space to cool off.

8) I can usually stay dry in my pull-up if I’m taken regularly to the bathroom (every 60-90 min). I like staying clean and dry, and feel good about myself when I use the toilet. Please take me often because *I won’t usually initiate going to the bathroom.*    

9) I’m an ‘on the go’ person. I don’t like staying in the same place for very long. I switch rooms, and like to switch activities and take walks outside in the sun. I also love car rides, and could ride for days. Please give me easy access to the outdoors (in a safe, enclosed area because I will run away) or take me on outings. I always have a better day with more variety.

10) I have a lot of strengths: I’m as gentle as can be, have a contagious smile, a great sense of humor, good taste in music, I’m a super swimmer, am highly adaptable, like a healthy diet, am adventurous and curious, love sightseeing, I like to try new foods, and really enjoy people.