State of Autism at Our House 2021

 In honor of Autism Month, I thought I would share the state of Autism at our house. Well I didn't quite make it for the month of April so the first day of  May will have to do. I live with a 22 year old High Functioning Autistic person. 

He works 10 hours a week at a local brewery doing janitorial work. He has a job coach who he really likes and basically just checks in on him a couple times a week. I can't say enough nice things about his coach and where he works. This is a good fit for him. 

He takes 1 class a quarter at the local technical college. He took fall off  from school. Doing all the work online was actually stressing him out along with Covid.  When he did make it back for winter quarter, he did okay- excellent in the grade department. He always does excellent in the grade department. All the school work including the group work was online. It was a big stretch for him.  He has a lot of school related trauma. He hadn't done group work since middle school so we had a lot of chats why it would be different in college.  I really liked this article about transitioning to adulthood and why college might not be a good choice for those on the spectrum and the qualities they need to be able to succeed. Preparing for the transition to adulthood part 1 There is a lot food for thought in there. 

There are still some behavior challenges. He gets easily frustrated especially with video games and online college work. He often misreads social cues and relies on others to clue him in. I spend a lot of time discussing other peoples behavior. It took me a number of years to realize how much anxiety my son has.  His anxiety looks a lot like anger too.  It is nothing like it was years ago. Thank goodness for medication and behavior management. 

He lives at home which is good for him. He pays rent. He purchases all his food. He still can't manage the stove and knives are a bit scary for him. He is however excellent at the air fryer. I prepare his breakfast and dinner. 

He doesn't drive and uses public transport. That is great but the public transport adds about 4 hours to his 2 hour work day. By car, he works about 20 minutes from home. This is a challenge that social service people like to gloss over.  As his Mom, I take him to the bus hub so his commute to and from work is not as bad. Social Services always say, "well he has access to public transportation." That is all well in good if it doesn't eat up your whole day.

One thing I can say about my son in the words of a preschool friend "He is the one with the big heart". I don't know what the future holds exactly for my son.  One of his best qualities is that he persists even when others feel he is not capable. I hope that serves him well. 

Parenting Neuro Diverse Adults

 I want to preface all this including the title which was a struggle. A friend reached out to me a long time ago and we started a discussion about adults that are neuro diverse especially as it relates to being employed and not living with Mom and Dad.  Hey Mom and Dad aren't going to be around forever. These are questions I ask myself  a lot as I have a high functioning autistic adult who lives with me. As you will see below, I clearly don't have the answers myself. These are just a few of things I have discovered in my quest for my son to be more independent of me.

Specifically the population I am talking about are higher functioning autistic adults often with co existing conditions . These adults live on the edge of receiving social services and are often because of their higher functioning in several areas less likely to seek social services or qualify for social services unless in a crisis situation. Generally most of these people can complete the majority of their activities of daily living without assistance (ADL's). It usually the behavior/mental health component that the majority of these people need assistance with.

Parents, partners, and relatives are often unpaid caregivers, crisis counselors, social workers for these neurodiverse people. Because they are adults they can live their life anyway they want including unsafely. However, as a parent to an adult who lives in my house I have rules how you live your life in my house. 

I think this situation where the quote, "Begin with the end mind" is really important. My son is going to have to eventually live without me so lets do everything we can to make that a successful outcome. 

Guardianship/Supported Decision Making/Estate Planning

I am not my son's guardian so that literally means he can make any decision that he wants without my consent. You know what my son isn't good at  - talking on the phone, filling out forms, waiting in line, bureaucracy of any kind, and talking about himself. So we are doing a version of Supported Decision a fancy phrase for he allows me to do these tasks for him BUT only at his direction. We have discussed this and these are things he allows me help him do. I have all the power of attorney's. This has made both of our lives easier. Those things I listed are all things that make his anxiety go over the top.  My son is totally capable of managing his money and he is learning to be a better advocate for himself.  He just doesn't know how to navigate or begin to navigate certain situations.  This is a role I could see my younger son taking over for him or even a supportive partner. 

Supported Decision Making - good place to start at informing families

Supported Decision Making Agreement

Housing

Over 2 years ago, I attended all kinds of housing meetings. Affordable housing is a hot button issue where I live. My son would like to live on his own. He currently pays me rent. My husband doesn't believe he could live on his own. I think he could with the right kind of roommate or situation.  

Partners 4 Housing - is a Washington company that offers roommate matching service for disabled people. I have heard the owner speak many times. I think this could be viable option for many. They are now nationwide. It is pricey but worth the cost especially in looking for a long term living situation with a vulnerable population that has limited options.

Community Homes, Inc -Is also a good resource. They have 7 adult homes in the Bothell/Redmond area and frequently offer classes on housing resources

This is probably the most needed and where most of these neurodiverse people are going to need to access social services in some shape or form. Whether it be section 8 housing, housing vouchers etc. It is a system that is very hard to navigate with very limited housing options. The best advice I have received about housing is don't be looking for it in a crisis situation. Housing wait lists are long like years long. 

Employment

My son went through the transition program at his local high school. That was the launching pad he needed. I know that not all transition programs are good but ours was exceptional and it was for higher functioning people. He also received services through DVR. Of all the social service agencies, I thought DVR was perhaps the most helpful to him. He received job coaching which included helping find a job. I actually think all high schoolers and recent grads could use some job coaching. The number one thing my son lacked was what they called the soft skills. He could do the work but he lacked the interpersonal skills and the knowledge of where to begin to look for a job. These things can be taught. I think DVR (Department of Vocational Rehab) when it is a funded agency does a good job of connecting and coaching people to get jobs. Goodwill also has some training programs. My son did several of those. It was very helpful. I don't know if they are doing these classes during Covid.

Secondly I want to say that most autistic people are not employed. My son does work but it is not a living wage job in that he only works 10 hours a week. He does work that you typically see disable people do - janitorial. Not to put that type work down at all but that seems to be the only type of work available to disabled people. Despite all the feel good news stories of disabled people working at big tech companies etc that is the exception not the rule. Oh how my son would LOVE to do that kind of work. However, my son does enjoy his work and the place he works is awesome and accommodating. Over and over I have heard that meaningful work is important and I have to say that is true to my son. He wants to go to work and be productive. 

So what do you do in the time of covid and you have a young adult who needs to work. You look for opportunities to volunteer. It is easier for disable people to get a job if they are a known quantity. Having good references is really important and often time volunteering can give you connections. My son did several internships and it was helpful to figure out what he really could do. All of his internships resulted in references. 

Places are still hiring. Perhaps look for jobs that take anyone/ low entry jobs.

example - We live in agriculture area and during the summer kids/adults work at the berry processing plant or in the fields picking berries. They basically hire anyone. 

microbusinesses - This is a new term I have been hearing and I would like to explore this more with my son.

Goodwill/Job Corp/Conservation Corp are options as well. I heard conservation corp is a good place for neurodiverse people. Yes they are operating during Covid.

How Covid has impacted intellectually disadvantaged workers

In Context 

I feel like I need to be completely transparent. My son receives lots of services. He has a job coach for his job. Social Services can be hard to obtain and easily taken away.  Depending on having these long term is foolish in my opinion. In Washington state because of lack of taxable income many supports or waivers through the DDA probably will be going away. The cuts could be so deep that they effect those in group homes. Having some contingency plans is important (Arc of King County - Deep Cuts to Medicaid Long Term Supports) Though I heard they aren't going to be quite as deep as predicted. Lastly, supports (government supports) are not given you need to request them so if you don't know what to request that is a problem. Sometimes my best sources of information has been other parents so it is good to belong to support groups. I also have found the ARC to be a great resource. 

Autism Awareness Month Linky's

April is National Autism Awareness Month.  I thought I would share some links about some current topics in the Autism World.

Ryan O'Connel Came Out of the Disability Closet, Now He is Changing the Conversation - Ryan is the creator/writer of the Netflix series "Special" 

Anthony Hopkins and the Suffering Caused by Unrecognized Aspergers Condition

Miami International Airport Opens Multi Sensory Room for Children with Autism

Dell hiring program aims to create opportunity for adults with autism

Autism Awareness Month

I spend a lot of time waiting for the bus at the transit center. My older son takes a bus to and from work. It takes a little over an hour each way for a 3 hour job that he does 4 days a week.  I am so incredibly proud of him.  He spent over a year consistently applying and interviewing for a paying job. We are talking hundred's of applications and a handful of interviews. This is his first paying job.  What does this have to do with Autism Awareness Month?  My son is on the autism spectrum.  He spreads awareness everywhere he goes.  He could use some more acceptance. Acceptance is an action and not passive tolerance. Acceptance means making the world a better more inclusive place. Oh couldn't the world use that for everyone? I wait at the transit center sometimes to remove the barrier of a long ride home. Happy Autism Acceptance month

Madgascar 3

#1 Son

My oldest has been wanting to go to this movie for a long time.  I promised at a surprising easy dentist appointment with 2 fillings and 4 sealants that I would take him.  Movies are hard for him so I figured it must be something he really wanted to see to endure the dentist.  Movies are sensory overload for him. We have walked out of so many movies because he just becomes overwhelmed.  I was pleased to say he stayed for the whole movie.  He did talk a lot during the movie.  We were lucky that the movie theatre was pretty empty.  There were probably 12 people including us.  It was really a good movie.  My son kept saying, "This is awesome."  He was really impressed with the villain and we saw the movie on Saturday and he is still talking about it. There is a theatre about 30 minutes away that offers Sensory Friendly Movie Screenings.  The lights aren't turned out and talking is expected.  You even can bring your own gluten free snacks.  I hope to check that out soon.

end of 8th grade

Today is my son's last day of 8th grade.  Middle School has been rocky.  There were a few bright spots.  I received this email last year from my son's teacher.  I need to hold on to the positive.When you have a child who is different or has issues, you don't really receive much positive feedback. I had  one year that the only feedback I received was a behavior notebook with negative behaviors. Talk about feeling like a horrible parent and asking yourself every day why do I bother to send him. I have to say that at middle school and all the various behavior programs my son has been in, I consider these teachers awesome and amazing. I just wanted to share this positive email I received. Here is a portion of the email:

Heather,

C had such a great math class today.  He brought me to tears. After some math bingo with integers, Mr F started on his " number 9" speech. He tells them that no one is a perfect 10, but they are all a 9. He then moved into talking about his childhood, suffering from severe skin disease, and being put down by kids, picked last for baseball, etc. Some students wrote positive messages on the whiteboard/chalkboard, and C asked if he could erase a portion of the board and write a positive message. C wrote this, " Strength is not judged by your weight but by your heart." I don't know if he made that up or it was a quote that he's heard before. Additionally, he noticed he'd spelled weight incorrectly and corrected it. Mr F was in awe at the heartfelt message. The next part is what is so awesome: C then asked if he could move up front, sit in Mr F's stool, and tell everyone something. It was such "C" moment. I'll paraphrase what he said as I don't remember all the exact words. He said that none of us knows what we'll be in the future, but we are important and someone special. He explained that when he was at a certain school, he was made fun of, called names, and felt bad about himself but that it's improved since then. All the kids were in awe, as were Mr F and I.  .........Then Cody sat down and asked to sharpen his pencil. All in a day's work for C.

I don't know what the future holds for this child.  We just keep plugging along. We are about better living through adversity.

Lost in Transition

It isn't the mountain ahead that wears you out-

it's the grain of sand in your shoe.

We have been waiting to go to our transition meeting with the school for our #1 Son for high school. We had a meeting. I don't know if it was a true transition meeting.  It was more like take this option and only this option. It is a extremely restrictive option.  I chafe at this even though I know this is perhaps the best option. The school acts like they have handed my son this very golden ticket to this very restrictive school (invitation only).  I get skeptical when people describe the physical location instead on what happens inside. Seriously, the school is in a very pretty spot but that didn't need to be emphasized to me as many times. I get it. I worry about what he has to give up and I realize he already given up so much. I just worry.  This kind of parenting isn't for sissies. This 8th grade year has been rocky both socially and emotionally.  Puberty and Aspergers isn't a really good combo.

The options are limited. It is frustrating to say the least. I know this Asperger's mountain I have to climb with my son but the grains of sand are more like pebbles.  I feel like I have so much sand in my shoe that it weighs as much as a cement block. We are trudging along here. I know I am not alone .  They estimate 1 in 88 kids have some type of Autism.  These sand/pebbles have just toughened me up.  I hope it has made me wiser about the hard choices I have to make for my son and ultimately my family.

I hate there seems to be some kind of code of silence that parents with behavior problems have to keep.  Yeah, I am the parent with one of those kids. This is hard stuff and maintaining the silence doesn't help anyone least of all my kid. I am the first to admit I don't get my kid. Though there are moments I totally get it.  I totally get what led to his perception of the situation and the resulting behavior.  I wish I could stop the bad behavior. This post by Outrunning the Storm describes the voices or the scripts running in my head perfectly everytime my kid messes up.

There could be a lot more honesty from the school district on what options are available for kids like my kid.  I am left feeling like if we had only done this earlier.  Why now? It seems like a child has to fail before alternatives happen.  Then it is a crisis situation.  Delayed intervention doesn't help anyone and costs us all.

Today I go visit the school that our district wants to place him. I want it to be what it is touted to be. I don't want to be disappointed once again.  I want it to be a successful place for my kid. I want to trust so badly but my trust of the system has been broken. I don't want it to be another rock in my shoe.  I don't want my kid to be lost in this transition.
  

The Elephant in the Room

I am Poem

Happy,bright, funny, silly.

Related to Charlie, who is silly and a really funny klutz;

Mom who gives me good meals and great hugs; Dad, who really cares for me.

Who enjoys Teddy bears, swinging and playing games on the computer.

Who feels happy with stuffed animals, silly at home, and great when hugging.

Who needs Teddy bears, lots of love, and many warm hugs.

Who gives happiness to people playing games with him, gives frustration to his little brother, and gives happiness to most of the other people around him.

Who fears getting lost, getting beat up, and having his underwear hoisted up a flagpole.

Who wants to write an adventure novel, to see Rascal Flatts, and to travel around the world.

Who dislikes bullies, cheesy movies, and mean dogs.

Who sees other people as smart, silly and serious.

Who lived in California and Washington.

by #1 Son

My son finally completed his evaluation with Children's in late August for Aspergers. I struggled about whether to post this. I want to protect my son and I now realize that Asperger's makes him more than less. So, I want to share this part. (What's in a label?)

It took us a FULL year to jump through all the hoops and receive a diagnosis . That is entirely to long to ruminate on things. The verdict is HFA - High Functioning Autism. In most circles I believe HFA and Asperger's are used interchangeably.  It was not surprising to us the parents this ended up being the diagnosis.  IT is disheartening that it took so long for us to get to the experts. I really want to say I am totally fine with the diagnosis. I am not but that is my problem not my child's.  I find myself dwelling on all the missed opportunities or all the times I have been judged as a bad parent. (there have been so many times) We have Experts where were they when my child was struggling?  Why didn't they see this earlier?  Hey, my Kid is 13 years old where was his early intervention? Maybe I just need a moment to feel bad about this specifically how my son was treated by the school system and the judgement and hopelessness I felt.

If anything was reinforced for me in talking to the experts,we have been doing a fine job with very very limited resources and support. All in all, the label doesn't change the behaviors we have to work on though it does go a long way to explaining some of them..  This is probably not going to get my child or us parents any additional support. This isn't the golden ticket. It is really hard seeing it written down.  The reality is overwhelming. I fight against the urge to label behaviors anxiety, asperger, ADHD. The behavior is what it is. I can't get caught in the web of the labels.

This is the kind of stuff that keeps you up at night. So welcome to the elephant in the room.  Since you are here to stay, we will embrace you and your reality. My son has found his tribe and won't be voted off the island.

Here are a couple of articles/ blog post that are really resonating with me.
Austism : Putting Ezra First
Drinking the Skool Aid
Beyond the Broom Closet