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Full Circle

March 6, 2020 / Kathleen Williams / 5 comments

Strap in, Ladies and Gentlemen…it’s going to be a heck of a ride.

In my very first post on this blog, I tentatively put out there my impossible dream of one day finding a house for CJ…somewhere he could live as independently as possible, and build a life that would last even after I’m gone.

April 2, 2013 – I posted my impossible dream.

February 29, 2020 – CJ moved into his new house.

Seven years. Seven years of mainstreaming and therapy and football and registering for the Selective Service, being prom king, becoming his own avatar, graduating from high school, getting a job, entering the Inspire day program, being interviewed on Fox News, and going to “college.” Seven years of carving out a path for my son without being sure where we were going.

Almost a year ago, I found out that Inspire might be setting up a group home. It wasn’t a sure thing, even though it looked promising. The county had a house that had been used as a group home prior, and was willing to lease it to Inspire at a small cost. The house was 2 miles away from our home. It was the right size, the right location, the right organization and the right timing.

Suddenly, I and several other parents has our laser sights set on that house.

We, along with the Inspire representatives, marched down to the county commission meeting, where it would be decided if we would receive the lease on the house. Oh, how we wanted that lease. We all got up and spoke. We explained. We laid it out. We held up photos. We teared up. I, who normally love public speaking, was shaking and streaming tears as we tried to make the commissioners see what a difference this house would make for our families.

The commission listened. When they could finally get a word in, they told us we were waaaay over selling ourselves – they had us on the docket to approve. YES! We got the lease and left the building triumphant.

The house had already been remodeled. It was nearly move-in ready. But the first step was to start an application list for people interested in living in the house. CJ was one of the first people on the list.

The end?

Not quite….

We applied for funding with the state. That application process takes weeks, at best. Meanwhile, the house was completely finished. There was an open house for the public. We picked out CJ’s room. And we’re waiting and waiting…on pins and needles for the state to answer us.

They finally answer.

Funding is denied.

It seems that CJ has done so well assimilating, that the state feels he really doesn’t qualify for needing an independent home. Because we’ve been successful in integrating him into the community, he doesn’t qualify to join the community.

We are devastated. The logic is terrible. We are now right back to looking down the barrel of a half life for CJ, trapped with his parents in a house until they age and die, and then the prospect of an institution in his middle age.

What’s it all been for? How could this even be possible?

There is an appeals process. But how do I even try, one more time, to fight the fight to stand up for my son? What would make a difference? My congressman? Members of the community who know CJ? His doctors? A lawyer? My coordinator suggested starting by resubmitting the paperwork with some additional information about how CJ cannot safely be alone. Fortunately, I know just the person…a person who knows CJ better than most and who is an expert in her academic field of special education. One magnificent letter from this amazing person combined with a reapplication, and we resubmitted.

Meanwhile, the house is filling up. The rooms get filled one by one. The room we picked out gets taken. And then there was one….one room left. Still no answer from the state. My level of anxiety was off the charts. I aged five years.

And then it came. The phone call we have been waiting 24 years for. The funding came through. He can move out. He can move in. And he got the last single room in the house.

In the end, the impossible was kind of ordinary. The room was already furnished so we just moved in clothes and a TV. It took longer to get the TV set up than to move everything else in. It took so long that CJ finally told us to “get out”. I politely asked if he would like me to remain and finish setting up the TV or get out. He graciously said, “You can do it”.

Thank you, son.

As we drove away, I expected waves of emotions and some sadness. Instead, I felt nothing but relief and happiness. He was perfectly happy there.

When he’s OK, I’m OK.

I get text updates and/or phone calls everyday from someone at the house. He is happy. He is eating what everyone else is eating. He sat perfectly still while they shaved him. He even got a haircut without me there.

I tried calling him yesterday, but he had a visitor. The baseball coach from the high school had come by to visit, so he couldn’t talk. He was too busy to talk to his mother.

Awesome!

He will yell “Hi!” and “I love you!” back at me, but he has much more interesting things to do.

And so this chapter comes to an end. And I know this is just the beginning of a new chapter. Oh, what a chapter it’s going to be!

Category: Amazed & Awed, Bound & Determined, CJ's House, Happy To Be Here /

Gimme Shelter

May 13, 2018 / Kathleen Williams / 5 comments

I’ve always said that I want the same things for CJ as I do for my daughter…to have a happy, well-adjusted transition from childhood to being an adult, to find something meaningful to do with their lives, and to find their own relationships in the community. In other words, to grow up, get a job and move out of my house. I’ve never confused motherhood with martyrhood.
And so far, CJ is 2.2 for 3. He’s grown up, he spends 8 weeks a year during the summer in assisted living without me and he’s got not just one job. He’s got two.He’s a true millennial.

Two days a week, he works in the cafeteria at his old high school. He loves it and they love him. He’ll probably still be working there after I’m
long gone. And he’s making $9.31 per hour! A respectable wage.
He also attends a sheltered workshop three days a week. The “sheltered” part is that it’s a place where persons with disabilities can go to be safe while learning job skills and to join in useful work. Work that has value, like stuffing envelopes, placing items into packages and other repetitive tasks that companies need done and are willing to pay for.

The “workshop” part is the part where they do the work and get paid. At first glance, it’s all felt very Victorian…very Charles Dickens. The people working at the workshop do get paid. They get paid sub-minimum wage. This kind of defeats the point of “minimum,” one could argue, and there are people out there who do. CJ started his job at fifty cents an hour. I had to sign a
paper stating that I understood he would be paid less than minimum wage. There are specific legal channels that organizations go through to be allowed to pay sub-minimum. I was upset about it and still am not happy with the whole idea. But….It was that or both CJ and me facing the prospect of five days a week at home together with nothing but endless TV and trips to Walmart and Aldi’s with mom. I did the math a few times and realized that I’d actually be subsidizing him working at the workshop facility. I also realized
I was willing to pay, for both our sakes. So off CJ went to the workshop. He absolutely loves it. He loves the people who work there and the other clients. He’s taking a class that practices interviewing skills, math skills and independent living skills. It all makes the part where I’m paying for him to work worth it.

And he’s riding the bus by himself to get there. He uses
tickets, which I began by carefully clipping together with a post-it note, stating which day and which trip each one is for. The first day, I carefully extracted that day’s tickets, and gave them to him, making absolutely sure he understood. The second day, he got out his own tickets, went outside an hour early to wait for the bus, and told me to “go away,” when I pointed this out.
When asked whether he liked riding the bus or being with me more, he firmly said, “The bus. It’s better than being with you.”
He couldn’t see me doing my happy dance behind my closed front door when I went back inside.

Three days a week, CJ is at the sheltered workshop. He recently had his first job review. He was evaluated by how quickly and efficiently he could complete at task compared to an
average, typical person. He then received a raise to $1.10 per hour. That’s a 120% salary increase. I don’t know about you, but I’ve never gotten that kind of job review in my life.

They make a big deal about paychecks at the workshop and he’s always so excited when he
gets one, reflecting his salary. He comes home and waves it around and tells us all how much
money he’s made. Mind you, he’s making $9.31 at the cafeteria, but he couldn’t care less. It’s that less-than- $20 per two weeks that’s got him stoked. His dad keeps telling CJ that he owes us all a meal at McDonalds.

I still don’t like the idea of people with disabilities being paid less for the same work that a typical adult could do for minimum wage. The work is worth a certain value, no matter who is doing it. It’s a complicated issue with some valid arguments on both sides, and there is a movement to stop sheltered workshops and other organizations from being allowed to pay less than minimum wage. But for right now, it’s making CJ very, very happy, which means, for the first time in a long time, I am feeling some happiness about his future as well. He loves his life. He has friends to talk to. In fact, when I got his initial evaluation with what they want him to learn, the only comment on the sheet was that he distracts others with his “chatter”. I couldn’t stop laughing.

I look back at where I was 9 months ago, and I’m astonished at how far we’ve come from that dark place where we were locked together, 24/7. Now, some days, I almost don’t know what to do with myself while CJ is out at work or at the mall and movies with friends.

It’s a problem I absolutely love to have.

Category: Amazed & Awed, Bound & Determined, Happy To Be Here /

New Normal

December 10, 2017 / Kathleen Williams / One comment

It’s been five months since my post. Five months. Long enough in real time. Light years in CJ time. We are a million light years from graduation, and nobody gave me a map from there to here. CJ graduated from high school in May. Seven years of high school and at the age of 21, CJ graduated. I have never been so terrified in my life. He walked out on the commencement stage to the call of “Christopher Williams.” Who? You could have heard a pin drop. Nobody knew who that was. Then the crowd saw CJ step out on the stage, and it was pandemonium. They clapped. They cheered. They jumped to their feet. “CJ! CJ! CJ!” He walked across the platform as a celebrity. He hugged everybody and everybody hugged him. He reveled in it.

And then we came home. I could feel the void looming. The emptiness of the days coming.

We shoved it back for bit while CJ went off to summer “college” at the ARC Jacksonville LIFE program. For 8 wonderful weeks, we all pretended that life was going on as usual. CJ loved his time there, growing, living in student apartments, and living the college life without classes.

And then it was over. Life as we’d known it for 22 years was over. And there was nothing waiting, no people, no activities, no bus, no purpose, no place in the world for CJ, except to sit in front of the TV and stare the next sixty years in the face.

School started again in August, and CJ didn’t go. Instead, he and I stayed at home with our new normal. Me being me, I like a good schedule. Sitting at home isn’t an option. So, CJ found himself out and about with his mom doing the shopping , going to the gym, and lunch with mom’s friends. Worst of all has been going to work with Mom. None of these things should ever happen to a 22 year old, but this was turning out to be CJ’s life.

Our options are limited. He can’t stay alone. He can’t live alone. He could go to a day program where he’d sit for hours doing arts and crafts. He could sit home and watch TV all day.

Not good enough. Not for me. Not for him. His world had shrunk to a shadow of what it was before. And the only one who could put it back together again was me.

He needed to get a job, I decided. How, I had no idea, but he needs a busy world full of typical people. Anything less is a waste.

But how?

Challenge #1: Money. Not too little. Too much. If CJ makes more than $85 per month, his SSI benefits are reduced fifty cents on the dollar. Yes. I need to find a job that makes almost no money. Because, if he has more than $2000 in his bank account, he loses his benefits entirely. Good luck, me!

Challenge #2: Working with a job agency. I discovered the Vocational Rehabilitation government program which helps people with disabilities prepare for job searches and find jobs. We were passed off to an independent contractor, who only gets paid if CJ finds a job. Great. So, CJ now has to learn how to present himself for a job interview.

He takes it very seriously. He has a “uniform” that consists of black pants and socks, black shoes and a green polo shirt. It doesn’t matter if the job interview is at 2 pm, CJ is up at 6 AM, dressed and ready to go. It all makes me want to cry.

He tries so hard, going to training sessions, watching videos on how to act and answer questions. I know it must seem so strange and bewildering to him, but he never stops trying to make the grade. Meanwhile, I make phone calls, send emails, go to meeting and arrange more interviews.

Could he stock shelves at the food pantry? Take in donations? Do laundry at the hospital? Volunteer at the high school? Anything. I’d take anything to keep him out of arts and crafts for the next forty years.

Weeks went by. Months.

And then I got the call….

Category: Bound & Determined, Dazed & Confused, Frustrated & Irritated, Scared to Death /

Destination Unknown

June 16, 2017 / Kathleen Williams / No comments

I thought I was going to be anxious and upset. I have no plan. I don’t have a check list. Nothing is organized and I don’t know what the next steps are supposed to be. I realize that we are never going to be as supported and connected to the community again, and that should leave me feeling terrified.

But I’m not. I’m actually ridiculously calm.

We have some options, which I’ll talk more about in a future post. It’s not hopeless. We’re going to be okay. I don’t know what’s going to happen yet, but somehow, maybe for the first time in my life, that’s okay.

The Graduate

I’m not sure yet how much CJ has grasped that things are forever changed now. That he won’t be going back to high school in the fall. That his place in the world is different now. Everywhere he’s ever gone, he’s always been loved and adored. Will that continue? What if it doesn’t? How much harder is it going to be for CJ, outside of the protective envelope we’ve spent so much time building and nurturing?

I don’t know.

Right after graduation, CJ was off to 8 weeks of “college” at the ARC in Jacksonville Summer LIFE program. So for him, it’s still business as usual. Just a summer vacation before life goes back to normal.

A normal that’s not there any more.

Category: Bound & Determined /

How to Get Into College

March 2, 2016 / Kathleen Williams / 6 comments

I have many friends with kids near CJ’s age. They are in college, applying to college or even just graduated. I have spent many hours talking about requirements, distances from home and especially, money. I have spent even more hours talking to moms and dads of special needs kids about our options. There aren’t many. The State of FL alone has 12 state colleges, 28 community colleges and 33 private colleges. What are the options for young adults that can’t go to a typical college setting? There really aren’t many. There is a big difference between going to college as you and I would, going to a trade school or getting a job and what it would look like for CJ.

Homes and Communities

But first things first. First, we need to find a place that CJ can live as independently as possible as HE can live. How independent does he have to be? What does he need to master before he can move in?

There are residential facilities more similar to a retirement community where there is some level of supervision. These are more like somewhere that you would expect to visit your grandparents. They can have a home or apartment with room mates or even their own place. They can offer meals and recreational activities or be completely independent. They will often offer transportation. The idea is to live as independently as possible.

Right now, I am focusing on two prospects. Both require CJ to be more independent that he is now and both are still in development. I have not toured either of the facilities. I do have a target January 2018.

I have a friend whose son moved to a “Group Home” under unpleasant circumstances for the safety of all involved. It was not what she had planned. She had dreamed and planned of a home or community atmosphere where he could live a full life. Things did not work out that way. Currently, in the State of Florida, the only way you move to a group home is “Life or Death” situations. I have actually said those words to the “powers that be” and been told “yes.” Yes? Seriously? That’s the best we can do? Basically, the person must be a danger to themselves or others. There must be no one able to care for them. (unwilling does not count) You can’t drop these kids off at a fire station. I had one friend ask seriously in desperation what would happen if she left her son at a hospital and she was told they would “pursue her for abandonment”.

My friend’s son was actually doing well. They had talked of him “going to college” for years. His older siblings had gone to college and moved out. It was what you did in their family. He was just the last to do it. He had the care he needed and was doing well. The interesting thing is that everyone I have talked to whose child has moved out has said that they are doing better outside the home as they are able to have their needs met. The families are happier as they are able to reconnect their marriages, friendships and families. They almost all, however, felt guilty. I had one mom tell me the house wasn’t up to her standards of cleanliness. All of a sudden it hit me. It’s not up to your standards. It’s not going to be. It’s not supposed to be. I looked at her and asked what she thought his living conditions would have been like in a dorm or worse, a frat house. Have any of you been in a frat house?

So, what will it look like for CJ? That is what keeps me up at night.

Tours

I took CJ with me when a group went to look at a property for a possible community. It had been a sort of boys camp prior. It was abandoned, but had buildings on it. He was VERY irritated with me that he was there. I finally asked if he would like to go to move there and live with his friends. It looked like a camp and he loves camp. I just wanted him to shut up. As he continued to run his mouth, I started to have fantasies about him living at a long term “camp” where he was safe and having a great time, but NOT making me crazy. I told him he could “Go to College”. “Oh, OK. That would be good.” Nothing came of any of it as the property was not usable. I forgot about it.

When school was starting back up in the fall we kept running into kids who were getting ready to start college or were staying local. One day we were driving and he asked out of the blue, “When am I going to ‘college’?” I was caught off guard. I would have just answered, “you aren’t going to college”, but there was something to this question. He stated it very clearly. He wanted to know. I probed further. “What college?” CJ-“That place where you took me with the buildings”. Me-???? Light bulb moment. “College”. “COLLEGE!”

He wants to go to “college.” He wants to move out. He wants to live with his friends. He wants his own life. He is 20 years old. What did you want when you were 20? I was at college and dating my now husband. I was certainly NOT living at home with my mom. You’re welcome Mom!!!
Now………How to make it happen?

Colleges

There are programs at colleges for persons with intellectual and developmental disabilities.

UCF has a program for adults with Intellectual and Developmental Disabilities http://ies.sdes.ucf.edu/

UNF has a program http://www.arcjacksonville.org/college-experience-oct/

Marino Campus in Fort Lauderdale has another program http://marinocampus.org/

I have met people involved in all these programs. They are all amazing. They all give individuals with intellectual or developmental disabilities a chance to further their education. These programs are not designed to get a regular degree. Some individuals with special needs can attend colleges with or without accommodations and can complete degrees. There are persons with all different disabilities including autism with degrees even Ph.D.’s. These programs are not for those people. These programs are designed to be more of an assistance as a transition. They all give individuals a chance to move out and be with their peers. They are all “college” programs. They live in an environment where they are more like a dorm situation with organized activities and classes away from home and yet not completely independent. I have not heard one negative thing about any of them except the normal monetary concern about college. Here’s the problem for me. It will cost as much to send CJ to “college” as my daughter and we can’t do that. We certainly can’t do it indefinitely. I know people who were on a 5 year plan. If you get a master’s, you might be able to add two more years. Even with a Ph.D., you better be done in less than ten years. Ph.D. CJ is not likely and I need a permanent solution.

There are summer programs for adults like CJ. There is one offered through an assisted living facility in Jacksonville that is 4 weeks. It is on a college campus and is a sort of cross over that lets individuals try the program to see if they would like to attend the college or would like to move into the residential location. I look into the details and I was crushed. He has to be able to take his own medication. He has never taken his own meds, and I have always know he never would. We are out. I cried. It just feels like every time we think a door is opening, it feels like someone slams it in our faces.

Changes

BUT. Yes, but. Over the holidays he started shaving himself with a razor. A real razor. I have no idea why he decided to. He nicked himself pretty good. My first reaction was to panic and yell at him and tell him he shouldn’t be doing that, etc. Some how I managed to think before I spoke. (The magnitude of that is more than you know.) I realized that I have hacked my legs up with a razor more than once. I mention to a few men what happened and every one of them shrugs and tells me that he still has days when he cuts his face up.

Maybe I needed to reevaluate this whole situation. Several different people told me about medications options. You can order medications in packets by doses, so instead of bottles of medications, you get packets with the right combination of medications for the time of day. Some facilities will actually hand the medications to residents. They just have to actually take them independently.

Maybe I jumped the gun here. I call to find out what the facility will and won’t do. I spoke with a very professional young woman who put me on hold twice to get clarification. Answer: They can’t physically do anything. They can’t hand him anything. They can’t tell him which packet to take or not take. He must do everything independently. I had to hang up. I was so disappointed. Now, I was really crushed. There was nothing more I can do. He does have limitations, no matter what I want to tell myself or what others want to tell me. He can’t do this.

I emailed a friend as I couldn’t even talk. She emailed right back. She wasn’t buying it. CJ has surprised us again and again. She said we just need time and a plan. There are all sorts of aids. She sent me several links for ways to package medication for seniors and others. I started to feel some hope as I started looking. You can make your own blister packs with the dosages. They even sell machines that lock that will dispense the correct dosage on the correct day at the correct time. It will even sound an alarm and/or flash a light. Who knew?

Hope crept back in. I started to get excited again. (tentatively) How long did we have? A Plan. A Plan. All I need is a plan. I can conquer the world with the right plan.

I order the simplest option, small zip lock bags with a write on label. I fill them with each dose and use a different color marker for AM, 3 PM and Bedtime. I wrote in the days and separate them in a plastic container.

I had CJ come in and started with giving him the packets. He got irritated, and I got worried. Maybe he can’t do this. And then tells me it is “not his job”. Now, I’m irritated….and hopeful once again. Step up, Boy!

As I watched, he took the crusher, crushed the pills and took the medicine.

?????

It’s that easy? All this time and worry and it’s that easy?

Well…..yes and no. We still have some fine tuning to do. He got upset with me one day because there was no Tuesday. There was an extra Thursday packet, but no Tuesday packet. He simply couldn’t take Thursday on Tuesday.

I can work with this.

I made a chart that is color coded to match the markers on the bags. I laminated it and got a green (of course) dry erase marker to check off each dose. I do love a good chart and laminator.

He tells me regularly that it is “not my job”. I tell him each time that he has to do it if he wants to go to college. Do you want to go to college? Yes. Then do your own medicine. Oh. That’s different.

He still needs to be prompted. He still isn’t opening the one capsule he needs to I still keep hoping that he will just wake up one day and swallow his pills. That would make the biggest difference. He routinely swallows huge wads of food. When it comes to pills, however, he is like the dog that coughs up the pill no matter what.

I can still work with this.

The biggest lesson here is that I need to remember that no one knows what he can and can’t do. We can only move forward and try everything. I have to continue to remind myself that it doesn’t have to look like it looked for me or will look for my daughter. We can’t keep underestimating CJ. His future holds amazing possibilities and the options are growing.

Category: Bound & Determined, Frustrated & Irritated, Scared to Death, Uncategorized /

Sweet Summer Time?

July 20, 2015 / Kathleen Williams / No comments

Sweet Summertime

Summertime. After the busy school year, you just dream of sleeping in. Lazy days. Trips to the beach. We have Sea World and Aquatica (Sea World’s Water Park) passes. They have special summer concerts and night time shows. It is really fun to go at night when everyone is leaving. We don’t have a pool, but lots of our friends do. I even dream of just binge watching some TV.

Elizabeth

What does it look like for my daughter? Sleepovers until I say no. Party after party. BBQ’s. Camps. Volunteering at church for VBS. She is gone more than she is home. My job is being a taxi service as much as she can talk me into it. Her summer is like the summers you can only imagine. The only way her summer could get any better is if we actually lived at the beach or had a pool.

What does it look like for CJ? No Sea World. He hates crowds and will get so over whelmed that he will melt down and take you down with him. He doesn’t do sleepovers. He certainly doesn’t want to sleep at your house unless he is out of town and has no option. He definitely does NOT want you to sleep at his and absolutely positively NOT in HIS room. We call it “The Forbidden Zone”.

People with autism just don’t have regular “friendships” like my daughter does. They might like each other and even tolerate doing things together, but they do not “spend time together” the same way. A friend recently said that it makes her sad that her son has no friends to spend time with. At graduation this year, all the kids were so excited and so happy CJ had come to see them. They were taking photos with him and signing yearbooks. They stood in front of him and invited each other to come over for open houses and parties that night or that weekend. They are great kids. Not one invited CJ to so much as stop by. Were they horrible people? No. Were they trying to exclude him? No. It just never occurs to anyone to include him with their other friends. I don’t think he notices, but I do. Every time it starts to look “normal” or as normal as we can get, then it doesn’t.

One of the highlights for CJ this summer was volunteering at VBS. I had told them if they could come up with something for him to do, I would volunteer as my daughter was volunteering. No pressure. It was fine with me either way. I made that clear. I got a phone call days before it started with an apology that he hadn’t gotten back to me sooner. Me….not a problem. I had told him no pressure. Then the shock….they had a job for him. Me…???????!!!???? What is he going to do? Security. Me…….. Security? He will be helping the guy doing security. They will walk around and make sure no kids are escaping, get bandages if needed and just be a presence. No mention of my job. I don’t even care. I’ll do anything. CJ has a job. I do make it very clear that if for any reason it doesn’t work, we can stop at any time. If the security guy just doesn’t want him to do it, let me know. No hard feelings. We go to the volunteer meeting. They hand out shirts and jobs. My name is never called. I ask. I have not been assigned a job. No problem. I’ll show up and pitch in where needed. This way I can take CJ and leave if things go down hill. We are there no more than 15 minutes the first day when both my children ask me to leave. I make sure everyone has my number just in case. The other moms look at me like I’m crazy for sticking around and tell me to run for it! I do. I get my house clean, run errands, meet a friend for breakfast and even get my hair cut. What a gift! CJ loves it. LOVES IT! He tells everyone he talks to that he has a job. A job? He is “working security”. Everyone has the same confused reaction. Security? Yes. At VBS at his church. I got more calls than I can remember in a long time. CJ said he has a job working security at VBS? Me…yes he does. He is still talking about doing it again even if he has to wait until next summer. Did I mention before that I LOVE MY CHURCH!

Probably the biggest highlight of the summer for CJ is CAMP! It is a sleepover camp. The first time he went I was a wreck. Not too much of a wreck to take off for the beach, but still nervous. He is so excited that he keeps asking me insane questions over and over. When does he leave? What cabin is he sleeping in? How would I know? We talk about all the activities. What are his favorite things to do? Swim. Games. Seeing friends. He can’t wait to see “his girl”. Who is “your girl”? He doesn’t know yet. He will have to see who is there. I asked about this. They told me that each time he goes to camp he picks a girl and then stalks her all weekend. She is usually a typical buddy. They always tell her that he is harmless and he doesn’t come within 10 yards of her, so no big concern. Days ahead of time, he wants to pack. OK. Get your bag and bring me some clothes. He brings his duffle bag he uses for camp filled with every pair of underwear in his drawer and a bathing suit. Well…. You might just need a few more things. He goes and has a great time!

He does two more camps this summer. Both are day camps. One is Camp Shriver. It is part of Special Olympics. It is FREE! Did you read that right? FREE! They use a local high school where they have use of the gym and pool. He swims every day and loves every second of it. He comes home and tells me about who he saw and who he likes. He also tells me about who he hopes won’t be there or won’t be in his group the next week. Some things are just the same for typical and special needs kids. There are just some people we like more than others.

How do we get here?

You know how you plan your summer and summer vacations? You figure out a budget, pick locations, find rentals or hotels, decide on camps and other activities. If you are my daughter, the biggest obstacles are time and money. If we had the money, she would be at camps one more awesome than the next until it was time for school to start. She would have nothing but parties and fun with friends.

If you have a special needs child, it looks very different. First, you have to find possibilities. What camps are even available? Day camps or sleep over camps? What are the costs? Where do you want to go on vacation? What options are there for rentals? What can your child tolerate?

When considering a camp, first you have to find out if they will take your child. I have been extensively interviewed. Some camps require a face to face visit before accepting your child. The child is the other problem After the age of 22, most camps won’t take them. The problem here is that unlike most 22 year olds, they still can’t stay alone. Can your child sleep away from home? Will the camp provide the needed supervision? Will the camp give your child medication? Will your child be kicked out?

How do you get information? Like anything with special needs kids, it is mostly from other parents. People post on Facebook, email, call and even text. There are web sites and suggestions from schools. We are talking desperate here. I saw one post that said “Does anyone know of a sleep away camp that won’t throw my son out?”. She was serious. One mom posted to pray that her son made it through the week this time. I talked to parents who had been thrown out of camps before the summer was half over. I ran into a mom about half way through the summer who has three boys with autism. Yes, you read that right. Three. She was asking, like we all do, what we were doing this summer. The question is not just polite courtesy like it would be with my daughter. It was quiet desperation as she explained they weren’t eligible for one camp and she had heard of one that we were going to and that she HAD to find something else to get through the rest of the summer.

I have been talking to friends all summer whose kids are making them nuts. Their kids are fighting. Their kids are bored. I understand. I really do. I also can give you a list of parents who would kill for those complaints.

The future

What happens now? What does the future hold? As our children turn 22 and “age out” of schools and programs, what happens to them? What happens to our other kids? What happens to our families? Right now, I don’t know. I have hopes and dreams like everyone else. There are more options every year. A summer job would be great. As he gets older, I would love for him to get some job experience. I would love for some different camp type options. When typical kids get older, they often work at the same camps they went to as kids. They have started having some of the special needs kids volunteer at the camp CJ attends overnight. If he could work at a camp for even a few weeks, it would be great. I do know one thing. As the population of people with special needs over the age of 22 increases, the need for something for them to do increases exponentially. CJ for one WANTS a job. After all, he does have experience working security.

Category: Bound & Determined, Frustrated & Irritated, Uncategorized /

Freak Out

February 2, 2015 / Kathleen Williams / No comments

It’s been a couple of months since I posted. Feels like about three weeks.

CJ had his fifteen minutes of fame and got quite used to his new normal of The Entire World Has Gone Green Just For Me. A month after all the excitement, the “winning” touchdown, the TV cameras, and people wearing green body paint in the bleachers…well…all I can say is, thank goodness Christmas came right up on the backside of it all, because nothing less than Christmas could keep CJ’s enthusiasm for his own life up as high as it’s been.

I love everything about Christmas. Love the decorating. Love the baking. Love the making gifts, the holiday shows, the lights. CJ loves parts of it. It’s overwhelming and overstimulating…but he absolutely demands we produce a Christmas tree and outside lights. It’s mandatory. He also insists on knowing when everyone one else is going to decorate their trees and houses, and waits impatiently for them to get to it. Of course, just as soon as we get everything up and lit, he starts wanting to know when we’re going to take it all down. It’s a fine line, timing it right so he doesn’t build up too much of a head of anxiety on either side.

He also loves giving Christmas gifts to everyone. As he’s never been voluntarily holiday shopping in his life, this means he is actually volunteering and offering step up for anything that needs to be made or done.

The fact that he is actually volunteering me to bake and knit and craft is completely beside his point. He’s one jingle hat short of Santa CJ and I am his elf. And now that his social life and contact list have blown up in the wake of all football excitement, my normal short list of teachers and neighbors turned into 30 containers of Christmas cookies plus extra for the coaches’ office.

I’m gonna need a bigger oven.

Along with the tinsel and lights and cookies came a phone call from my doctor. I’ve had a place on my liver for about a year now that was concerning, and after a new round of internal close-ups (bad lighting, no makeup), while he thought it was benign, he decided it had to come out.

Well. Merry Christmas to me.

At that point, everything became a blur. Anyone who knows me knows that I am Douglas MacArthur, Genghis Khan and Judge Judy, rolled into one organizing, do-not-get-in-my-way-when-I’m-on-a-mission-or-I-will-roll-over-you-with-my-minivan Commander In Chief. Suddenly, December 25 was just a stopping point on the way to mid-January, when I would have to actually set foot inside a hospital for the first surgery of my life.

Just for some perspective, I would rather give CJ a haircut and shave every day for the rest of my life than spend two hours getting hooked up and prepped for…anything.

So while my oven was turning out dozens of cookies, I began making lists. Lots and lots of lists. It gives me the illusion of actually having control. Especially when I laminate the lists and I can see at least one over every major appliance and from any angle where I stand inside the house. With lists, even if I didn’t make it through the surgery, I would still be there, telling everyone where to go and what to do and how to do it.

Meanwhile, Life, with a Capital L, kept on coming.

CJ got a letter, a cap and a signed ball from a Kansas City Chiefs player (that was a jaw dropper, and one of the nicest letters I’ve ever read). Then he was awarded his football letter along with the rest of the team (didn’t see that one coming and another jaw dropper). Then, and I am not making this up in a post operative fantasy, CJ was voted MVP by the entire team. After I picked my jaw up off the floor yet again, I let the coach know I was concerned that a very deserving player on the team had missed out on the honor and I wasn’t quite sure what to do. The coach, a man after my own organized heart, did a recount and realized that the second place player had voted for CJ too. The whole team had decided.

I suppose it’s true that he did play in the only game they won this year. We’ll take it.

CJ now moves the MVP trophy from his bed to his table in the living room to the floor in his bedroom, depending on wherever he is at the moment. He holds it while watching “his” press coverage saved on our DVR. He would sleep with it if he could figure out how.

I took Elizabeth with me to visit my sister in North Carolina. I had seen snow once, but I never got to see it actually fall before. My husband stayed home in Florida with CJ and we actually got to fly instead of road tripping with CJ. I love my son, but it was crazy how unstressed I was. There was a six hour flight delay and three hours sitting in the airport, and I just kept smiling and smiling until nobody wanted the seat next to me.

OH! I forgot to mention that CJ had his first date!! He took his Best Buddy to Steak N Shake. Of course, this means that I had a first date too, as I went along. I discretely sat at another table, far enough away not to cramp his CJ style, but near enough to hear now and then. And take a few photos. Poor CJ.

Mind you, his Buddy is drop dead gorgeous. She won a scholarship pageant, plays basketball and has interviewed with Harvard and Yale. She’s is bilingual, and is even more beautiful in the inside than the outside. She told me later that CJ talked to her that night more than he ever has. She told me that he told her all about how Elizabeth and I spent New Years at the beach.

Beach. Snow. Close enough.

Aim high, CJ. Aim high.

Mercifully, school started back up, which gave me the time I so desperately needed to start really freaking about over my upcoming surgery. Even ignoring my fear and loathing of hospitals and needles of any kind, there was still the fact that someone was going to carve on me, and me and a piece of my liver were going to part company. And somehow, some way, the world was going to have to struggle on without me for at least a week.

This is exactly what OCD freak mode is for.

I typed. I washed. I shopped. I scheduled. I worked up directions for the oven, the washer, how to clean the floors, work the locks on the fridge and pantry, how to clean the bathrooms, use the microwave, use the internet and shop for food. I stocked up on chicken nuggets and pretzels. I emailed teachers. I printed labels. I made an entire notebook, and if it wasn’t in the notebook, it was laminated.

I was in my element…in my glory. I eventually realized what I was doing was what is second nature to me now: making sure that everything in CJ’s life was as close to unchanged and normal as possible. If he knows what to expect and what to do, then he can deal, which means everyone else can deal too. Surgery, smurgery. I was preparing to delegate my role as Supreme Commander of the life of an person with autism, and Eisenhower on D-Day couldn’t have done any better.

And, thankfully, everything turned out fine. All results came back negative, no one starved and the house didn’t burn down. We couldn’t have asked for better, kinder support from friends, family, neighbors and our church. I have had more offers of help than I could ever accept. I have to admit, it’s nice to be needed. But it’s also good to know that my family can step up when they need to.

Turns out, all this is cramping CJ’s style though. He needs me to get back to normal as soon as possible so he can go on a second date.

Category: Bound & Determined /

Lockdown

January 31, 2014 / Kathleen Williams / 2 comments

Yes, Justine. There really are locks.

As my friend sat, staring at me a bit blankly across the table at lunch today, I had another of those little realizations that pepper your world when autism comes to stay at your place. Yeah, we all know that your normal is not my normal. That’s a given, and I get that I’m the one that’s fallen down the rabbit hole. After a while, things just seem normal to me that would send most people looking for the “Wake Up!” bottle. But I also realized that sharing rooms with autism has made me literal. Very, very literal.

I had made a comment about the locks on my cabinets. Justine looked astonished. She said, “You mean you have actual locks…on your cabinets?”

Uh, yeah. What I said. Now, Justine has known us since before CJ was born. She is a regular reader of this blog. She’s as “in” in terms of understanding as anyone else in my circle. But all this time, when she heard me say “I locked the food up,” she thought I meant that I put it away. You know. On the shelf. In the pantry. Like a normal person.

“No,” said I. “I have bike locks on the cabinet and refrigerator.”

What was really weird was that at the same time I was acknowledging inside my head that having locks like that was strange, I was also thinking of several other people I could name off the top of my head that I know who also have locks at their houses.

The rabbit hole can hold a surprisingly large amount of people.

All this, of course, leads to the next question.

Why??

Well…

One of the many, many effects of autism is that it can screw with a person’s appetite and digestion. And not necessarily together. A person can be terribly hungry all the time, but have trouble digesting and processing food. Or a person can have little or no interest in eating but digest just fine when they actually do eat. Or any combination or degree of the above.

In our house, autism is HUNGRY. All the time.

When CJ was little, I would get his snacks for him as you would expect. He asked. I gave or withheld as appropriate. Good mommy. As he got older, he was able to get more and more things for himself. I thought, “Independence!” and also a break for Mom. What an excellent job I was doing! Until the day that I bought and put the groceries away, and returned an hour later to discover there was no proof I had ever even left the house. Everything snackable and openable without a tool was gone. I suddenly realized that “self-serve” wasn’t necessarily in anyone’s best interest here because it didn’t come with an “off” button. Despite my best lectures and hair pulling (mine, not his), my groceries kept disappearing, along with my food budget for the week and dinner for the rest of my family. Now we were hungry too.

I started to get creative.

At first I would just put things up higher up in another cabinet. Inconsiderately, CJ grew. I started putting the snacks in my room in the closet. Mom’s room was off limits.

Not.

Then I started keeping our food in the trunk of my car. Guess who found the keys to the car?

I have a secretary desk in my room that locks. I shoved the food in there. He broke the lock and forced it open.

Of course, it was never HIM…no no…when the snacks were all gone. He would tell me this standing in the middle of a trail of crumbs on the floor leading to his room with more evidence around his mouth for added emphasis.

We have an old coat closet, between the garage door and the bedroom that has been converted into a pantry. It’s a double door arrangement with two handles. The goal was food in, CJ out. We tried a child lock, but he could work that. So now we have a bike lock wrapped around the handles. If CJ figures out how to crack this one open, no bike or bag of chips in the neighborhood will be safe.

With the pantry problem solved, the refrigerator remained, a cold, vertical, well-lit buffet for the 3 am snacker with no off switch.

No. Just…no.

We went shopping. The big requirement for a new refrigerator was having handles that would work with a bike lock. Try explaining that to the salesperson on the floor at the big box store.

If the locks are not tight enough, you can pull the doors open a crack and reach an arm in. If your arm is long enough, you can reach snacks way in the back. Guess who has really long arms? The only problem is that the opening is big enough to get your arm in…but not big enough to get it back out again with your ill-gotten snack booty.

One day, secure in the knowledge that my hunting and gathering were protected by the best that Kryptonite and Masterlock had to offer, I drifted off into an afternoon nap. Not long after, I awakened to screams of terror and pain. Clearly, there was a fire with traumatic burns or an partial amputation or a collapsed wall with crush injuries in the next room. Nothing else could possibly have provoked the roaring din coming through my bedroom wall. I heroically rushed in to save whatever was left of the house and/or my son…to see what had happened.

Nothing had happened. He had cracked the fridge door and put his arm inside to pilfer a goodie and he was stuck. He was stuck because he refused to let go of the lemonade container or the snack in his hand. Yes.

This has happened more than once.

The doors to the pantry are hollow. Hollow doors do not hold handles well when a great deal of force is applied…and I assure you, a great deal of force has been applied. After all, there are Cheetoes or pretzels or “insert your favorite snack here” on the other side of the door. This has led to many, many, many repairs to the doors. We now have long screws that go all the way through the door with bolts to hold it all on. My husband is convinced we will never be able to sell the house now, because it would be too hard to explain.

Everyone except CJ knows to lock the cabinet when done. It is funny that I will go to open it even when he is not here and one of us will have locked it out of habit. We have the combinations written down and CJ knows where they are. He will helpfully tell the respite worker where they are when she visits. Luckily for me and my grocery budget, he hasn’t figured out how to work them.

Yet….

Category: Bound & Determined /

Holiday Overload

November 19, 2013 / Kathleen Williams / No comments

One week from Thanksgiving. One week and one day before Black Friday bleeds into Brown Thursday (stores open at 6 pm!). It’s time to bake the bird and then start hauling out the tinsel and garland and strings of lights. Time to dust off bad holiday sweaters, 18 different versions of “Silent Night” on 18 different holiday albums, and family traditions while counting the number of shopping days left. Time to panic about how little time is left to get it all done. Time to bounce between looking forward to so much of it all while wondering at the same time when it will finally be over.

Really not that different from CJ’s point of view, that last part there. He has a special relationship with the holiday season, sort of like when Dumbo had a special relationship with that bottle of champagne and got pink elephants. For us, Christmas is a combination of stress and joy. For CJ, it’s an annual ticket to a roller coaster of sensory overload.

We’ve learned so much over the years…survival techniques that give CJ a fighting chance to enjoy some of the holidays without being buried in stress and confusion. Not everyone around us understands or approves…after all, our traditions are not all “traditional.” Autism can color our family’s red and green another shade entirely at times, and looking at it from the outside in, one might be tempted to write us off as spoiled or frustrated or inept or unpolished or undignified.

So, as CJ’s advocate, translator and shield, I’ve developed my own little holiday tradition. To friends and family each year, I send out a letter from The Other Side. It’s one that’s been posted on sites all over the Internet. I have no idea who wrote it originally, so I can’t give credit, which is a shame, because it’s worth crediting. The letter was an eye opener to me the first time I read it, even though I’m in the thick of things and you’d think I’d get this by osmosis by now. It’s a timely reminder as we go about our business that the holidays are not just a time of giving and receiving, they’re also a time for a little extra patience and understanding.

*************************************************************

Dear Family and Friends:

I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which make it difficult for me to adapt to my surroundings.

Thanksgiving & Christmas are some of the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort.

Sometimes I may seem rude and abrupt, but it is only that because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by okay. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard. When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you-I am not. Rather, I am hearing everything and not knowing what is most important to respond to.

Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.

If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people–I just have to get up and move about. Please don’t hold up your meal for me–go on without me, and my parents will handle the situation the best way they know how. Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky-I literally cannot eat certain foods as my sensory system and/or oral motor coordination is impaired.

Don’t be disappointed if Mom hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things–just please be patient with me, and understanding of how I have to cope.

Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown-ups call it “self regulation,” or “stimming’. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this “perseverating” which is kind-a-like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.

Please be respectful to my Mom and Dad if they let me “stim” for a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents’ feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.

Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. I am a unique person–an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you’ll try to view the world through my eyes!

**********************************************

This letter has changed our lives over the years. I hope it will make your holidays just a little smoother as you hit the stores and parties.

Category: Bound & Determined /

Autism Fact or Fiction?

September 7, 2013 / Kathleen Williams / No comments

When CJ goes out in public, his behavior makes it apparent pretty quickly that he’s dealing from a different deck than you or I would, particularly in social situations. Autism brings its own pack of cards to the table, and no one has any choice but to deal…including CJ.

Like every family, we need food and toilet paper and sunscreen and laundry soap and school supplies and hardware and clothes and the latest Air Bud DVD’s. However, unlike most families, any trip we make into the outside world always offers the possibility of becoming a public curiosity, if not a public spectacle. Some people ignore us. Some people deliberately, conspicuously ignore us. Some make lots of room. Some smile and walk on. And some stare.

One day when I was in a flippant mood, I asked a cop where the law stood on autism and its potential to create socially weird situations. Her reply was that no one can do anything about strange, as it’s not illegal. I found that a bit comforting, as I am sometimes strange myself.

As CJ has matured into an adult, I think we may be becoming more peculiar to the unaware eye. Most people, by now, are able to see a child and see some of the behaviors that autism can cause, and can put two and two together. I don’t think very many people have even considered the idea of an adult with autism. When CJ and I walk through a store together, it can take fellow shoppers longer to put that two and two together, because the back support of dozens of magazine articles read and news segments watched which cover adults with autism just isn’t there…yet. Meanwhile, a whole bag of other explanations can occur to people which can make them intensely uneasy.

And I will tell you, up front, that as a mom in this situation, I have learned to pretty much just ignore it all. The social worry will eat you alive if you don’t shut it down. As long as CJ isn’t misbehaving within the bounds of reasonable social tolerance, I can’t let myself care about all the small individual social crises we may be causing as we push our cart through Target.

Unless…

Every so often, someone will surprise me and just ask me questions about CJ and autism. While it can be annoying while I’m trying to hunt and gather for my tribe, I appreciate that most of these questions are well-meant and innocent. And I really do try to answer the best I can. I’ve become something of an expert at sorting out the sincere from the mere social curiosity. Some people don’t really want answers…they just want to gloss over the awkwardness and move on without feeling bad. Some questions just make me laugh or roll my eyes. Fact and fiction can get blurred in a hurry when all you bring to the situation is “that Temple Grandin movie” and a vague memory of Tom Cruise and Dustin Hoffman coming down the escalator in “Rain Man.”

I think that many people assume that autism is CJ and CJ is his autism. They see autism as something that completely separates the person from anything ordinary and changes everything so radically, there’s not much left for the average person to relate to.

Not so.

Fact—CJ is 18 years old. Autism or no, here we are.

Fact—CJ loves sports. LOVES them. Why? I don’t know. He always has. Why does any teenager love sports? He was never interested in cars, trucks or Legos. He would rather bounce a basketball or toss the football around, or watch someone else do it on TV. Meanwhile, my friend has a typical son who is obsessed with Legos. LOVES them. Why? He likes them. And no one questions him.

Fact—CJ likes the color green. Why? I don’t know this either. I like red. Given a choice, I will always choose red. In fact, it’s so pervasive, it’s a family joke. CJ doesn’t prefer green just because he has autism. He likes green because he likes green.

Fact—CJ is funny, personable and well-liked by his peers. Why? Because he has a sense of humor, enjoys some interactions with people, and usually has a great attitude. I would like to say that it is because he inherited from me, but who knows?

No…yeah…I’m going to claim that one. He inherited that from me.

Fact—CJ is autistic. It is a diagnosis. It is a condition. It is NOT who he is.

Fiction—all autistic people have a special skill. Something that somehow counterbalances the “cost” of the autism. Like a gift for numbers or dates or musical talent. NOT true. There are only a small percentage of autistic people who are savants. Most people with autism are just that…ordinary people with autism.

Fiction—Autistic people are, by definition of the condition, mentally challenged (or my all-time favorite, “retarded”. Yep. I went there with the “r” word). CJ has multiple tests measuring his IQ within normal range. Just because he doesn’t use his brain power the same way you or I do, don’t underestimate him.

For example, his sense of time is both unique and remarkable. First of all, don’t tell him you are going to do something unless you mean you will do it NOW or soon! The future is any point from from now forward until he’s tired of waiting. “Yesterday” is any time from a moment ago until his first dim memory of anything that might make his point right now.

Also, he remembers EVERYTHING! Memories may not be in a logical pattern for our convenience, but they are in there, fresh as the day they happened. He will occasionally bring up things that happened years ago. I am talking 10-14 years ago. Usually out of context…or so I think at first. When I finally figure out what on earth he is talking about, I realize what he’s recalling was generally not one of my finer moments. And I realize what I have is a teenager with a steel trap memory throwing my past parental missteps back in my face.

How just plain ordinary is that?

Fiction—People with autism who are non-verbal can’t understand what is going on around them. NOT true. They are very aware and will often react to their surroundings and what is going on and being said. So when you approach that mom pushing the cart in Target with a question, keep in mind that you have a larger audience than you may think. You can insult, hurt or frustrate a person with autism, just like you could any person overhearing what you say. You can also compliment, empower, and lift the self esteem of both that mother and her child by the words you choose and the way you ask your questions.

CJ is first and foremost a person with his own interests, likes and dislikes. He also has a condition called autism that causes both him and us difficulties in his day-to-day life and classifies him as “disabled”. He is my son, a brother, grandson and friend to many who see way beyond the label. Autism has not destroyed or damaged his personality, although it may make it harder for him to express it at times. It’s all still in there…a bright light filtered through an autistic sieve, bursting out in all kinds of colors and angles and occasional glares.

See you at Target.

Category: Bound & Determined /

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