How’d He Get Autism?

How did he get autism? Is it genetic? What about Josh, does he have it, too? Is his diet making it worse? Did having him vaccinated cause it? Is it true that early intervention can cure him? Did he get early intervention?

We have heard all of these questions about Brandon’s autism. From well meaning friends and family as well as from complete strangers in the community.

There is research out there that supports a strong genetic link in autism. Maybe it is genetic. There is a lot of money spent on research, studies, and testing. While I think this is worthwhile, it does not change the fact that Brandon has autism. I wish there were more funds available to help those children and adult already living with autism.

There is also much research that debunks the theory that vaccines (specifically the MMR) cause autism. If the genetic theory is ultimately proven, then the community at large will have to recognize that it isn’t the vaccines. I do not think vaccines cause autism. All three of my children were vaccinated. Only Brandon has autism.

Does diet play a part? Maybe. I know some parents have their kiddos with autism on special diets and they have told me it has helped some of the behaviors associated with autism. Do we have Brandon on a special diet? No. Do I think Brandon’s birth mom’s diet caused him to have autism? No.

When Brandon was 8 years old, he stopped eating. It happened gradually and we did not initially see what was happening. It got to the point where he would only eat Zebra Cakes, which are not the healthiest, but we didn’t know what to do.

And then Brandon stopped eating. He absolutely refused to put anything in his mouth. People told us he would eat when he got hungry enough. But he didn’t. The behaviors were becoming unmanageable. He wasn’t sleeping, which meant I wasn’t sleeping either.

After 4-5 days of this, we had to have him hospitalized. His child psychiatrist was amazing and worked hard to get his medications stabilized. He started sleeping and he slowly started eating again. When he came home, we worked with a behavioral therapist for 3 months who was finally able to get Brandon to eat a wider variety of foods. He gained weight and looked so much healthier.

Since then, Brandon has his favorites and is much better about trying new things. I hope he never gets to that point again. He can have his favorites!

Early intervention is so important in those with autism. But we have to remember that Brandon is 21. He was diagnosed when he was 18 months old. That was 19 years ago. Early intervention was in its early stages then. Yes, Brandon received some therapies and supports when he was 3 years old. But it was nothing like the early intervention kiddos receive now.

Does early intervention cure autism? No. But it can provide children and their parents with more information and support from the time of diagnosis.

Autism is a life long thing. It isn’t a disease. It isn’t contagious. And it certainly isn’t the worse thing in the world. Can it make our family life more challenging? Yes. Do we live our life around schedules and routines? Yes. Do we love Brandon with all our heart? Absolutely.

It doesn’t matter how Brandon got autism. It is here and that’s that.

ACCEPTANCE

Acceptance. What does it really mean? Do we just accept those like us? Do we accept our differences? What does it mean to a family living with autism? Brandon’s autism affects all of us. Is it always sunshine and roses? No, it isn’t. Is it always tantrums and meltdowns? No, it isn’t. There is a lot of in between. But autism is always there.

So what does acceptance mean to this autism family?

A – Accessible. We would like for things to be more accessible for our sensory needy son.

C – Caring. I believe we all need a bit more caring towards those who may act in ways that are different from the norm.

C – Collaborate. Collaborate with us, not for us.

E – Exceptional. My son is an exceptional young man, with or without autism. Get to know him…he will surprise you.

P – Progress. How can there be progress without acceptance of the issues?

T – Trust. Trust us parents that we know our child best.

A – Acknowledgment. Please acknowledge my son’s existence.

N – No Judgement. If you have questions, I will do my best to answer them. Don’t judge what you don’t understand.

C – Compassion. When you see someone struggling, show compassion and kindness. No judgement.

E – Educate. Tell others about my son. Tell others how wonderful he is. Educate others!

Everyone wants to be accepted.

Sharing Awareness

We are always looking to increase awareness about autism. This is done in many ways. We talk about autism, I share this blog, we call politicians to advocate for increased funding, and we live in our community.

We have lived in our town for over 15 years. As many others do, we frequent the same places and Brandon goes with us. We get to know employees and they get to know us, and Brandon.

One of these establishments is our local quick shop. It is locally owned (not a chain) and is close to the high school. We stop in there on a regular basis. The owners and employees are marvelous. They know Brandon is going to get three cheese sticks, a small bag of yellow chips (Lay’s brand – the package is yellow), and an orange soda.

When we walk in the store, we are greeted with hellos and a lot of “Brandon! How are you?” Brandon gives high fives and fist bumps.

This past summer was hard for Brandon (and us, too). He was aggressive and hit me many, many times, but not usually in public. Josh, Brandon, and I were at the quick shop one day, waiting in line to pay for our stuff. Brandon became angry about something. I have no idea what set him off, but he began hitting me in the head. Josh was trying to get him out of the store and I was just trying to pay for our stuff. People were staring.

One of the owners was behind the counter and simply said to everyone else, “he has autism. This is his mom and she knows what to do. Be kind.” Brandon and I both immediately calmed down. She had our back. I was so very happy for her support and understanding. And the next time we went in the store, she acted as if nothing had happened. Brandon was not treated any differently. There were still high fives and fist bumps. That is awareness.

Haircuts with Brandon were the bane of our existence for years. He hated the whole process. We would cut his hair at home with the help of several friends. It was awful for everyone involved.

As Brandon got older and stronger, I knew we had to come up with something to make this process more manageable. I spoke with the manager of the place we took our other sons. Turns out, she had a cousin with autism and was more than happy to work with us.

I took Brandon with us when his brothers would get their hair cuts. I took pictures and made a “Brandon’s Hair Cut” book for him to look at at home. We introduced him to the staff. They let him sit in the chair and touch the scissors and clippers.

We did this a couple of times and then I made the appointment. I am not gonna lie….I was nervous, apprehensive, and hopeful. The first haircut in the salon was exhausting for all of us. Brandon needed a lot of breaks and Skittles to get through it. The stylist was patient and kind and we made it!

Now, Brandon does really well with haircuts. We go to the same place. He sits in the same chair and he touches (and smells) the clippers before he lets them touch his head. There are fewer breaks needed. We always have Skittles with us to help him through. And Taco Bell after. He does great!

They say it takes a village to raise a child with autism. These folks are a part of our village and we love them. If you are out and about in your community, and you see someone struggling, be kind! It could just make someone’s day so much better.

Waffle House

How have I managed to live in St. Louis for 27 years and never eaten at a Waffle House? Today was my first time and two of my sons, Brandon and Josh, went with me.

The impending ice, snow, freezing rain stuff meant no one has school today. What should we do? Go to Waffle House. And it was a great experience.

Josh and Brandon

Brandon did not want to take his coat off and Josh clearly did not want to comb his hair this morning. 😊

I let the waitress know immediately that Brandon has autism. She was marvelous. She sat down with us and talked with Brandon directly. She asked him what he wanted and waited for him to answer, with some prompting from me.

I think Brandon likes me.
Food! And lots of it!

I had grits with my breakfast. I love grits, but my boys have never tried them. Josh declined my invite to taste them. Brandon surprised me and said yes. He took two bites, after smelling them for a good 10 seconds. He did not want any more, but HE TRIED THEM! WOO HOO!

He loves butter.

Brandon was pleased with his waffles, but wanted more butter on them. He took the butter pat thingy, grabbed the butter knife, and proceeded to put more butter on his waffle. As you can see, he likes a bit of waffle with his butter.

Everyone in the restaurant, which is quite small, were absolutely lovely. It has been a good snow day here in St. Louis.

What’s Next???

Graduation is coming. For Brandon, and Joshua, our youngest son. There will be parties. Family will visit and we will absolutely celebrate the achievements of our sons.

Then what? What happens next? Joshua will start college in the fall. We have had many discussions about this and what it will look like. What will his major be? How much will it cost? What scholarships are available? What classes will he take? Joshua is so excited and we are excited with and for him.

What happens next for Brandon? He isn’t going to college. He doesn’t have a job lined up. What is he going to do with his days after graduation? That is the burning question we have right now. We want him to be able to be with his peers and have purpose in his life.

I had a friend over last night to watch a couple episodes of The Marvelous Mrs. Maisel. If you aren’t watching this show, you should! So so funny! We got about five minutes into an episode and realized we should just shut if off and talk. She works with adults with developmental disabilities and she refused to let me wallow in any self pity. What she did do was give me some more numbers to call.

I called one of the numbers this morning. I had the pleasure of speaking with a young lady who asked a lot of questions about Brandon. What can he do? That was the focus. What CAN he do, instead of what can’t he do. It was a really good conversation and I thanked her profusely for her patience and understanding.

I didn’t realize this was a pre-screening for possible future services. When she said “the pre-screen is now complete and I will be forwarding this to your local office for follow up”, I felt so happy and grateful. The local office will be contacting me to set up an in home interview and assessment with Brandon. Honestly, I felt like I had passed a test with flying colors!

We are now on our way. We are researching different options and avenues for Brandon. As someone once told me, those options are not going to come to us. We have to find them. I am so glad I didn’t put off making that call this morning!

You Just Never Know

You never know what can happen when you meet someone who “gets it”.

Our oldest son crashed his car on ice and wants a new one. We sold the old one to a local salvage yard. My job today was to get the title and some other stuff to the salvage yard.

When I arrived, I sat with a young lady who was helping process all the information about the crashed car. While we were waiting for someone to take the plates off, we started talking about Cabela’s (which is very close to the office we were in).

I told her that my son, Brandon, has severe autism and absolutely loves Cabela’s. It is his very favorite place to go and has been for years. She shares with me that her brother has autism and is non verbal.

We talked about some of the challenges of autism and shared some funny anecdotes about our boys. She then asked what Brandon will be doing when he graduates in May. I told her that we honestly don’t know anymore. She shared that her brother attends a sheltered workshop and has transportation to/from the workshop daily.

I am truly happy her brother has those resources available to him. She said it has been a blessing for her brother and the entire family. That is what we want for our son. To know he has a future beyond hanging out with me every day. A place where he can be productive and interact with his peers.

Funds for folks with developmental disabilities have been cut. Wait lists (Brandon is on more than one wait list) are the longest they have been in years. A few years ago, we knew what to expect and had planned for that. Now, his future is a bit uncertain and that is hard for all of us.

The employee immediately told me about a local agency that helps advocate for folks with disabilities. This agency helped her with her brother and she was really, really happy with their support.

I walked in the place of business to transfer a title and get the plates back. I walked out with a phone number that may be able to help us. You just never know what is out there if you don’t share and connect.

And now, I have some calls to make. 😊

Words of Strength

Advocacy:  The act orprocess of supporting a cause or proposal.

I met with an advocate earlier this week.  She also has a son with a disability and hasinteracted with those who ultimately decide what our children’s futures willhold.  She encouraged me to use “strengthwords” to describe Brandon.  Instead offocusing on what he can not do, let’s focus on what he can do.  She asked me to describe Brandon using three strengthwords. 

Loving

Brandon is loving.  Heenjoys being around those who know him well. Brandon shows his love for others in many ways.  He doesn’t give kisses, he sniffs people’shair.  If he likes you, he will sniffyour hair more than once. 

He likes to give hugs. And he likes receiving them.  For him,I imagine it feels like a big body squeeze and it is a bit calming forhim.  Don’t we all like a good hug everynow and then to help us feel better? 

At least a dozen times a day, Brandon will ask me to givehim a kiss on the forehead.  He doesn’task his father or brothers for this, just me. He likes fist bumps and high fives from them. 

If I am upset, Brandon will sit beside me and put his headon my shoulder.  He, sometimes, willsqueeze my hands.  From his perspective,he thinks this is calming for me like it is for him.  And it usually is.  Smart kid!

Attention to Detail

Brandon is very detail oriented about certain things.  He likes to do puzzles and has several hekeeps in his room.  Most of them are onthe floor in his room.  If I move them tothe bookcase while cleaning, he will put them back on the floor.  I finally gave up and they remain on thefloor.

His room is his haven, his safe place.  Books are in the bookcase in a certainorder.  When he gets a book out to lookat, it goes back in the exact same spot. Always.  His desk has his computerand other knick knacks that do not move. If something is moved, he notices almost immediately and will movethings back to where they were. 

Sense of humor

Brandon is funny.  Hissense of humor comes out at unexpected times. The other night, he was watching the Cardinals game with Steve andI.  Jedd Gyorko was up to bat and Iyelled “Come on Gyorko”.  Brandon laughedhysterically.  I wasn’t sure why, so Isaid “Gyorko” again and Brandon laughed again.

Brandon hates overhead lights.  He always wants to kitchen light turned offand he doesn’t like the overhead light in his room.  I do not like the overhead light on in ourfamily room.  I prefer lamps.  Occasionally, when I leave the family room, Brandonwill turn on the overhead light.  When I walkback into the room and notice it, I will look at him and turn the lightoff.  And he always, always, alwayssmiles when I do.  I think he is playingwith me when he does this and it makes me laugh.

I had become a bit blind to these things.  When I started thinking about it, there areso many other word of strength that describe Brandon.  He is strong, he is courageous, he isresourceful, and he is persistent. 

I am so thankful for the advocate who made me stop and think about these things.  There is a lot my son can not do.  I am trying to focus on what he CAN do.  He makes me laugh and he shows me he loves me in so many ways.  He has so many strengths and we will celebrate those!

Advocating

I have learned something in the past 3 months.  I have to step up my advocacy game.

Brandon’s last year of school is next year.  What then?  What happens?  His teacher, therapists, and paras understand this.  They understand we have to start planning now.  Yes, we have 13 months and that seems like a long time.  However, before we know it, Brandon’s time at school will be completed.

I am having a more challenging time getting Brandon’s case manager and her team to recognize the time constraints we are under.  How do I get them to understand our concerns, our fears, and our hopes for our child?  How do I get them to listen to us?

Know your rights as parents.  Steve and I are Brandon’s legal guardians.  That was the first thing we did when he turned 18.  We also have to know what Brandon’s rights are.

Steve and I have to know what we want for Brandon.  Second, we have to make sure the case manager understands that our wishes are based on what WE think would be best for OUR son.  We have lived with him for awhile now and we really do know him best.  I have had to remind the new case manager more than once that she has only met my son one time.  She hasn’t been around him and she does not know him.

Having contact information for the case manager is important.  Brandon’s case manager was assigned at the beginning of February.  We did not get contact information until last week when I had to call the supervisor.  I didn’t even know her last name to be able to look it up.  Yes, I should have asked for that information immediately, but I was a bit shocked he was getting a new case manager.  It seemed to come out of nowhere.

I have found that knowing what the case manager is responsible for is really really critical to positive advocating.  Fortunately, I have 22 years experience and have a pretty good understanding of this.  Last week, I asked the case manager to forward me copies of some recent assessments that were completed for Brandon.  The case manager argued with me that she would not be able to do this as everything was an “internal document”.  I knew that was incorrect.  And yet she argued with me for ten minutes.  We left it with her asking her supervisor if she could do this and she would get back to me.  I received the assessments in the mail yesterday.

This case manager is also the one who has told me several times that I am “not allowed” (these were her actual words) to talk to any residential or day program providers until she tells me it is okay.  I also know this is incorrect.  I can talk to whoever I want about my son.  I wonder how many other parents she has told this who are unaware that she is 100% wrong.

I have spoken with the case manager’s direct supervisor more than once about some of these concerns.  The supervisor has not been receptive to listening to me.  I have found her and the case manager to be a bit cold and without empathy.  They have both told me that Brandon has to go the route they have decided on.  Remember….the case manager has met Brandon and I one time.  The supervisor has never met my son.  They haven’t talked with his teachers, his therapists, his paras, or his doctor.  When I suggested they do this, I was informed they know how to do their jobs.

I have reminded them that their job is to support Brandon with the direction and path HE wants to take, not the path THEY choose for him.

I have started my “Advocacy Notebook”.  I am keeping track of everything, including phone conversations.  I make note of questions I have asked and when I can expect an answer.  I do not expect anyone to get back to me immediately, but I do believe waiting 3 weeks for an answer is a bit excessive.  Remember, I had no contact information for the case manager.  The questions I asked are important.  The answers will help Steve and I know what to do and how to move forward.

When I was told I couldn’t talk to area providers, I asked for proof of that.  I wanted something in writing that says I cannot.  After her telling me the same thing three times the case manager reacted in the following way….”fine, talk to whoever you want.” 

I realize this relationship is not going well.  It is feeling a bit contentious and argumentative.  I have helped so many parents get the supports they want/need for their adult children.  Why am I finding this to be a power struggle?  Why is it so hard to get them to listen to me?  

Because I am Brandon’s mom.  And I get emotional when I feel like someone is assuming they know what is best for my child.  That’s it.  I am his mother and this is what I am suppose to be doing for my son.  Last week, I contacted an advocacy group and am meeting with our advocate early next week.  I am so hopeful this helps in communicating our expectations. 

So…send some good vibes our way!!

Being Informed

Our son, J, played soccer when he was younger.  He started when he was five and stopped after eighth grade.  There were games we wanted to see.  And we did.  We took Brandon with us to most of the games.  We were getting fresh air, Brandon could jump around all he wanted, he could make his noises and J was having fun.  Win win, right?  Not always.

Not everyone is accustomed to seeing a kiddo like Brandon.  He makes weird noises, he jumps and flaps his arms, and he tends to get too close to people.  We were at one game sitting on the sidelines in our chairs, and Brandon was sitting on a blanket.  He was being himself.  A child who was about three years old noticed Brandon and walked towards us.  He was about ten feet from us when his mother swooped in, grabbed him up, and actually said to stay away from “that kid”.  Brandon was 8 years old at the time.

I was livid.  I yelled to her that my son has autism and it certainly isn’t contagious.  She didn’t even turn around.  Then I cried.  Brandon may not be able to talk well, but he can hear.  He has feelings and those feelings can be hurt.  He also was not doing anything that was harmful to himself or others.  He was just being himself, trying to keep calm around all the people he didn’t know.  Soccer games can get quite loud…cheering, yelling, etc.  These things bother Brandon, so if he needs to jump a little to let out the anxiety, jump away.  We were outside, for heavens sake. 

I was also angry because she said that in front of her son.  Her toddler, who will learn from her.  And, in my opinion, she had just taught her child that my son is to be feared.  How dare her!!  

How do we go about raising awareness?  How do we get the message across that our children are not to be feared?  There is so much information out there about autism.  There are so many resources.  And yet, people will still say that the child having a meltdown in the grocery store just needs a good spanking. 

How do we fix this?

I hate saying this, but it is almost easier now that Brandon is grown.  A 20 year old who jumps around, makes strange noises, and who can’t communicate well is seen by others as disabled.  We do not get as many of the “looks” now as we did when he was younger.  That makes my heart hurt.  My child was seen as a “problem” when he was little and we would get the nasty stares and comments.  Now that he is older, he is seen as “disabled” and “different”, or “difficult” and we occasionally are given a look of pity.  I sometimes want shout “We don’t need your pity, we need your understanding”.

So, what can we do about this?  How can we help to change the perceptions of those who don’t see our son as a sweet, wonderful human being, who happens to have autism?

We want people to ask us questions.  We want to engage in conversations about our family.  Autism does affect our lives.  Every day.  That isn’t a bad thing.  It just is what it is.  But we are so much more than a family living with autism.  We like to laugh.  We like to watch movies.  We like to use the grill when spring finally rolls around.  We like to watch J during marching band.  We like to talk with A about his knowledge of history.  We listen to music.  We visit with family.  We have friends over to play games.  Pretty normal, right? 

Out and About

When we are out with Brandon, we talk to him.  We talk about the different foods in the grocery store, we talk about the animals at PetSmart and Cabela’s, we talk about what we are going to do next.  Yes, occasionally we have to remind him to not be so loud and to stay with us, but we talk to him.  Much the same as I talk to my friend, Jessica, when we are shopping at Michael’s.  We introduce ourselves to new neighbors and educate them on what they might see/hear from our son while he is running around the back yard.  

Like anyone else, we frequent the same local gas stations, grocery stores, and quick shops.  When the person behind us in line sees the cashier interacting with our son, it helps educate that one person.  And maybe that person goes home and says to those around him/her how we saw a person with autism at the store and how cool it was that the cashier knew him.

He has always loved animals! Look at that sweet face.
Now he is a young man and awesome!

We spread awareness and information every day about our son.  Through talking with people, posting stuff on Facebook, and answering questions friends and family may have.  Because who would not want to know my son.  He is awesome!  His behaviors can be challenging, but HE is awesome.

Five Things Brandon Taught Us

  •  There is no modesty.

Brandon is much more free than we are.  He is not ashamed, embarrassed, or bashful.  When Brandon was much younger, he hated wearing clothes.  He would strip naked at the drop of a hat.  Fortunately, that is no longer a challenge for us.  He stays clothed all day.  Except when something he wants to wear is in the hamper.  Or there is no underwear in his dresser after his shower.  He will walk out of his room and into the kitchen to request the needed item, regardless of who is visiting.  Most of our friends have now seen Brandon in his purest form.  He doesn’t care.  He just wants his underwear.  We have taught him how to wrap a towel around him after his shower.  I am not sure why, though.  He gets to his room, the towel is on the floor and his door is not shut.  And sometimes, the curtain is open.  And he simply does not care.  Brandon has taught me to not care so much about what everyone else thinks.  Just be myself.  Just like he is himself every single day.

  •  Two of Everything

Brandon loves waffles.  Not homemade waffles, but the frozen kind.  Not the Belgian style waffles.  He likes the waffles with the little squares, not the big ones.  He will not eat a waffle if it has fruit or anything else in them.  Plain waffles.  Thankfully, the brand does not seem to matter to him which makes it easier when shopping.  Brandon has always loved waffles.  He knows right where they are in every grocery store we shop at.  When he was 8-9 years old, I took him grocery shopping with me.  When we got to the waffle aisle, he started  saying he wanted 10 boxes of waffles.  I told him we could get 2 boxes.  He was not pleased and had a full blown temper tantrum in the frozen section.  Jumping, yelling, threw himself to the floor, crying.  I ignored every bit of it.  I stood there quietly while other shoppers gave me some nasty looks.  (Don’t judge what you don’t know)  After 3-4 minutes, Brandon stood up and said “two waffles”.  Yes!!  Now, when Brandon goes grocery shopping, whatever he picks out, we must get two.

  •  Public Restrooms

It was so much easier to take Brandon to a public restroom when he was little.  I could take him in the women’s restroom with me and nobody batted an eye.  Then he grew up.  I can’t as easily take him with me and there aren’t very many of the “family” restrooms out there.  If his brothers are with us, they will take him for me.  If I am by myself, I let hirm go in the men’s restroom and I stand right outside the door.  I have had more than one man open the door only to find me standing in front of it.  I usually explain what I am doing and I have never encountered someone who got testy about it.  And I talk loudly to Brandon while I am standing there…”don’t forget to wash your hands, make sure you flush”…so that he knows I am there.  Steve has another issue when he takes Brandon to a public restroom.  Brandon pulls his pants and underwear down to his ankles when using the urinal.  Being a woman, I don’t understand this at all.  Why is this a problem?  I asked Steve and he told me that no one wants to walk in and see a bare butt.  LOL!  Now, Steve just directs Brandon to the stalls and Steve feels better.  Brandon could care less.  See #1 above.

  • Cocoon Sleeping

This is, without a doubt, the one thing I simply do not understand.  When Brandon sleeps, he cocoons himself in his blanket.  Every part of him is covered, including his head.  To be honest, it use to freak me out a bit.  I have never been able to sleep with my head covered.  I feel like I am suffocating.  What if he is getting too much carbon monoxide because his breaths are not going into the air?  They are staying under that blanket.  I asked his doctor about this years ago and he laughed at me and said it was fine.  Okay.  But I still check on him to make sure the blanket is moving up and down, so I know he is breathing.

  • Sameness is Comforting

I appreciate routine.  I appreciate order.  I do tend to get a bit restless if there isn’t something different occasionally.  Brandon is a creature of habit.  He likes sameness and knowing what’s coming.  He knows that Dad reads his book with him every night before bed.  It can not be me or his brothers.  Brandon will read a book with me during the day, but never before bed, because Steve does it.  If Steve is home, but busy with work stuff at bedtime, Brandon will not let me read a book with him.  When this happens, Brandon will choose to go to bed without reading.  If Steve is traveling and not home, then maybe I get to read with him.  It’s about 50/50.  And I am okay with that.  At least he is reading!!