Some Weekend Fun

Brandon has always loved the movie “Toy Story”. When he was younger, he watched it over and over and over. He even figured out how to order 3 digital copies and a couple DVDs that were delivered to our house before we caught on.

Apparently, there is now a Toy Story 4. I had no idea, but we found it and are now watching it. And who doesn’t love Tom Hanks. I love the theme song…You’ve Got a Friend in Me. As I was singing along, Brandon was saying “no thank you, mom” and covering his face. I guess he doesn’t like my singing.

Not wanting me to sing.

Watching intently.

I have talked about Brandon making his own cheese in a bowl. He can also make himself popcorn. I am so thankful for the popcorn button on the microwave. Burnt popcorn smells worse than burnt cheese.

He does love his popcorn. Please pardon the messy stuff in the background. Laundry is never ending in a house with 5 people.

Happy Leap Year Day!

All is Well

After a rocky start to the day, Brandon settled down and was able to focus on something other than Cabelas. We are back to talking about it every 30 minutes. Whew!

Brandon loves going out with Steve. Today, they went to Vintage Vinyl (Steve found some Pink Floyd albums). I stayed home and watched a movie with my friend Rick. And we ate some gooey butter cake.

Out with Dad

Steve said Brandon did well at Vintage Vinyl. They then went to a friend’s house. Brandon used their swing and was ready to come home in about 7 minutes, per Steve.

When he and Steve got home, he asked me about Cabelas, had some red kool aid, went to his room and went to sleep.

This morning may have had something to do with him being tired.

Getting him out of the house was helpful. When Brandon starts obsessing, he generally targets me. Being apart helps us both reset. I think my sweet hubby knew that was needed today.

We are now a week out from the ER visit and his eye is healing well. He has had a busy week. Lots of new things and different people. Stitches, TB test, and a snow day.

The eyebrow is doing well. Look at those curls!

He was crabby for about three hours this morning.

There are times when we just need to be able to be crabby. And then we move on.

Home Town Visit

What a wonderful day we had today. Steve, Brandon, and I went to my home town. We visited with my brother and his wife. My brother and I visited with our parents. We got the promised pink cookies.

The last time we visited my brother was right after Christmas. His three children and their spouses were there with all their kiddos. It was loud, it was hectic, and it was wonderful. I loved seeing my nieces and nephews and all the little ones (and the ones who are young adults now). I love my family!

Brandon loves all these people, too, but that day was a lot for him. He found a spare bedroom and loved the quietness of it.

Today, it was just my brother and sister in law. Brandon knows where the computer is and watched Toy Story. He knows where they keep the red soda (Coke) and helped himself. He remembered to shut the door when he went to the bathroom. He sat with my sister in law and listened to his iPod. He sniffed both of them more than once.

Mary Jane and Brandon…of course he sniffed her. 😊

He ate his hot dogs and fries from the Dixie BBQ. He had a pink cookie and a brownie from Davis Pastry. And when we stopped in Davis’, I saw a friend I have known my whole life. I think Brandon liked her.

Now to get ready for tomorrow’s Super Bowl….go Cheeps!!!

Because That’s What Brothers Do

This is the day our family started. Alex was 7, Brandon was 6, and Joshua was 3. Like most blended families, we were certain everything would be smooth sailing.

I adopted Brandon and Josh In 2006. Steve adopted Alex the same day. Brandon and Josh’s mom passed away prior to Steve and I meeting. Her parents and sister are still active in our family life and we love that they are a part of our autism community. We wouldn’t have it any other way.

Now we are a family and we just knew how seamlessly we would be able to work autism into our daily lives. We really were naive back in the day. But we do it. Because we love all of our boys, even though one seems to need more time and attention.

Steve and I always agreed that it is not Alex and Josh’s responsibility to take care of Brandon and his many communication and sensory needs.

We still went to soccer games, t ball games, football games, band concerts, movies, parks, etc. Sometimes Brandon went with us. Other times, friends would stay with Brandon in our home. Grandparents would step in and let us go out while they would keep Brandon. Occasionally, Steve or I would need to stay home. We did our best. Isn’t that what most families do, with or without autism?

Brandon will always need someone looking out for him. He will always need help and support when making decisions. How would Alex and Josh feel about being responsible for their brother if something were to happen to Steve and I? As we get older, we think about this more and more.

Last night, Steve and I were talking about today’s day program visit. (By the way, it went really, really well.) Steve needed to be at work, so I asked Alex if he wanted to go with me.

He didn’t hesitate…yes. He also said that he wants to learn more about “the Brandon stuff”. I don’t think he is ready for the big binders of stuff I have, but he WANTS to learn.

We talked about what life will look like for Brandon when Steve and I aren’t here. Nobody likes those conversations, but it is a reality we have to deal with. Alex let us know, in no uncertain terms, that he and Josh will always be there for Brandon. I think the exact phrase was “we will always have his back” and we know he means it. Josh had entered the room by this time. We filled him in on the conversation and he said the exact same thing.

I remembered all the times they were there for their brother. School programs, staying with him so I could go to the grocery store by myself, sitting down and doing a puzzle with him, fist bumps and high fives, squeezes, and of course they let him smell them. They know Brandon as well as we do.

Why would they do this? Because, as I was told, that’s what brothers do.

I Love Shane

Shane is in my house. Man, I have missed him. His voice is the same. He is in my kitchen talking to mom, dad, and Suzanne.

I need to smell him. I must smell him. I don’t care if he is busy, I MUST smell him. I bury my head in his hair, close my eyes, and breathe deeply. He is still talking, but I don’t hear it. I just want to smell him. I take another deep breath and the aroma takes over. He smells like the trees in the park. Like the real Christmas tree we had one time. It’s an earthy smell. He smells like Shane. When I open my eyes, Shane is looking right at me and smiling. He has a nice smile. I lay my head on his shoulder and feel calm.

Everyone is watching football. The Cheeps are playing. They are my favorite team. They have red and yellow uniforms. I like the bright colors, because I can see them really well on the TV. That’s one of the reasons I like Mario Kart so much. The bright colors. The Titans have blue uniforms. The Titans are boring. Go go go Cheeps!

I really want to sit by Shane. But dad is sitting with him on the little couch. Ugh. Why don’t they understand that I want to sit by him? How can I make this work? I am going to make it happen. I walk to the little couch and squish myself between them. Woo Hoo! I am sitting by Shane. And dad got up and moved to a chair. It’s a win for me!

Why in the world is Shane now touching my iPod? He says he just wants to see what song I am listening to. NO! He can’t have it. No no no. He finally gives it back. Or I may have taken it from him. Who cares, I have it back. My iPod is mine and I don’t want to share it. Seriously, he should get his own iPod.

I put my hand against Shane’s beard. The stubbly feel of his beard feels good on the back of my hand, like when mom runs her fingernails on my back. And now he is touching my hand, but not hard enough. I want him to squeeze my hand. I press my hand into his cheek, but he still doesn’t get it. Mom tells him to squeeze and he does. The pressure of my fingers being squished together feels so good. I feel calmer. Everyone should have their hand squeezed.

There is a lot going on in the house. Everyone is talking and it is overwhelming in my head. And my body.

Maybe I can get him to squeeze my feet, too. I put my feet in Shane’s lap and now he is looking at me. Squeeze, man, squeeze. Maybe if I bounce my foot in his lap, he will get it. He got it! And now I have feet squeezes, too. Life doesn’t get much better than this.

The Cheeps are winning. Everyone is so loud about it. Why are they yelling? Are they mad? Nope, everyone is smiling and happy. I turn my iPod up to drown all of them out. With my headphones on, I can listen to the music as loud as I want. I only want to hear the song and for Shane to keep giving me squeezes.

Deck the Halls is one of the best songs ever. I love this song. I listen to it over and over and over. It makes me happy, especially the fa la la la la part. And if I play it loud enough, the outside noises go away. I just want to escape into the music. And I can still see the Cheeps on the TV.

I am so glad Shane came over. I love him.

And the Cheeps won!

Signed: Brandon’s Voice (aka Mom)

A Few Thoughts from Steve

My husband, Steve, wrote this a few years ago. Steve is a wonderful father to all three of our boys and I felt this needs to be shared. Enjoy!

Yep, this is going to be a long post, but I felt the need to share a bit more about Autism. You may have heard the phrase “God only gives special children to special people.” Nope, he simply blesses us with children, period. Sure it’s hard, but considering parents of kids with special needs to be ‘saints’ overestimates us and underestimates our children. We’re not “excellent” parents, we do what we have to do.

In our case, Brandon deserves the admiration. He’s a cheerful, loving, quirky, smart kid who is lot of fun to be around. His autism is secondary to the fact that he’s an amazing person, he’s a person with autism, not an autistic person. Parenting him isn’t some magnanimous act we do out of the goodness of our hearts, he’s our child. We feel the same about Brandon as his two brothers, we’re every bit as lucky to have all of them as kids as they are to have us as parents.

In the past I’ve mostly posted about Autism as a negative thing, about how much it affects what I *can’t* do in my life. There’s so much more to him and to our family life than that, and I feel I’ve done my son a disservice by focusing on that in the past.

Right now I want to share what’s awesome about Brandon and all the things he’s taught me, my wife, and his brothers.

1. His True Happiness. His sheer joy of life makes me smile every day. Yes, his exuberance can be frustrating because of the constant self-stimulatory behavior with the noise, hand clapping, laughing, and jumping, but it’s hard to deny the happiness behind it. He makes me smile much more than he makes me frown. He also loves “kisses”, which are actually him simply leaning over and sniffing your hair.

2. His True Love and acceptance. The fact that he still loves hugs always makes me smile. He can feel the energy we all carry with us. If we are worried, stressed, or concerned, he knows that. He also knows that he’s truly and deeply loved and accepted. It allows him to be who he is with abandon and to freely explore who he is and feel confident in who he is. Love and acceptance allow us all to flourish into who we genuinely are. He always reminds me of that.

3. He shows us that the Little things matter. His success is my success, and I appreciate the little things much more than I would have without him. Being a good parent has little to do with the material things we can give our kids or the things our children accomplish. Our presence, our care, and our love are our real gifts. Growing up knowing that your parents are there for you in a genuine, connected way is a huge gift to and it allows them to feel whole, accepted, and loved. This is success as a parent and it’s what I try to give him. In his own way, Brandon always makes me feel connected. Seeing him participate and sing along in his Christmas musicals in grade school always made me tear up, it was so difficult for him to do it, and so rewarding to see him accomplish one of his group performances.

4. He’s given us an unexpected journey. When we encounter the unexpected in life, it’s easy to react with resistance. “This isn’t what I planned or expected. This isn’t how it’s supposed to go,” you might think (or at least I did). But meeting life with this kind of resistance makes the journey much more difficult. Think about how it feels when someone or something resists you. It often causes you to unconsciously put your guard up in response. On the other hand, when you’re met with acceptance, you bring a different energy to the situation. I’ve learned to react much more positively to things in life in general because of Brandon, and I’m a better person because of it.

5. He’s shown us that perfection is not a worthy goal for anyone. Striving toward perfection is a sure way to make sure you’re disappointed in the end. It’s great to have goals, intentions, and aspirations; but demanding faultlessness of anyone makes reality into the enemy. If I want Brandon to accept himself for who he is, it’s a good idea to start by showing him that I accept myself for who I am, despite my faults. He’s shown me that imperfection can be perfect.

6. He’s shown us that we all have special needs. Each one of us is an individual with strengths and weaknesses, as well as unique gifts we are here to share. Brandon has shown me that in so many ways. He’s won several blue ribbons in the special olympics, he’s a great runner, and it’s something I’ll never do. If we can embrace our needs and those of others without fear, we can meet life in a more powerful way.

7. His idiosyncrasies and his personality are heartwarming. Instead of saying Thank you, he says “Thank you, say you’re welcome”. At the grocery store, he isn’t happy unless we buy at least two of his favorite items, one won’t do. He’s so willing to help, he’ll put his laundry away, take out the trash, clean up after himself, and loves doing it. He doesn’t complain, he just likes to help. Despite his communication difficulties, he reads simple books with surprising proficiency. He never complains about tagging along for events that are not about him, like sports and band events for his brothers. He loves music, and his diversity of what he likes is impressive. For all his challenges, he’s incredibly well rounded with diverse interests.

Above all, Brandon’s shown me that it’s possible to learn a great deal from your own child, and gain a different perspective on what’s real and what really matters. He’s changed me and made me a better person in so many ways. Thank you, God, for blessing me and my family with someone as perfect as him.

Brandon’s Letter

Dear Papa,

I miss you so much. You let me have as many zebra cakes, cookies, and chips as I wanted. I loved to sniff your hair. Mom says that’s how I give kisses. I can’t make my lips do that thing you all do. Mom and dad told me you died. They said you were really sick and that you aren’t sick anymore. And that I have to look at pictures of you. Mom and dad have pictures of you in the other room.

I hope you know how much I love you. I don’t know why I don’t tell people that. I just don’t. But I do love you.

I still like to play Mario Kart. Dad put it in my room. He said they wanted to watch TV sometimes and that I was taking over the TV too much. I sit on my bed when I play it.

What does where you live look like? We never go to your house anymore. Did you move? Mom and dad said you moved to heaven. Where is that? Is it nice? Is there a Cabela’s there? You and grandma took me to Cabela’s. I go with mom, dad, and Lorie now.

I love the animals at Cabela’s. Did you know that not all animals have black noses? I love the animals.

Lorie takes me to Taco Bell, too. I love Taco Bell. Are there Taco Bell’s in heaven. I hope so, so you can have some, too.

I miss Grandma, Max, and Bubba fat cat, too. Grandma has visited, but she left Bubba at her new house. She is visiting again soon and I can’t wait to see her. She said Max died. Is he with you in heaven? I hope so because Max really liked you.

I love you Papa.

From, Brandon

Finding Time for Me

I have thought a lot about the above meme. Being an autism parent is my life. It is what I do daily. I schedule. I make calls. I sign papers. I make sure medicine is sent to school (and lunch money). My husband, Steve, absolutely helps. But being a stay at home mom does mean that most of these things are my responsibility.

The more I thought about the meme, the more I questioned “is that all I am?” Is being an autism mom what defines me? Of course it defines me, but only part of me.

I have been feeling very overwhelmed about what happens when Brandon graduates in May. What is going to happen? We will be able access the services he needs? What about the therapies he currently gets at school that will stop the day he graduates?

I was talking about some of this yesterday with a friend. He asked me…”what do you do for yourself?” I burst into tears and told him I don’t. There are days when it is hard for me to get off the couch. My house gets cluttered (which I hate), but I can’t seem to find the energy to do anything about it. It all just seems so monotonous.

So….what do I do about that. My friend encouraged me to make daily goals. Small goals. Yesterday’s goals included finally getting all the Christmas decorations down and put away and then cleaning up from that mess. My family room feels so much bigger now. And cleaner. And that made me happy.

But what about me? What do I like to do that I haven’t made time for? Reading. I love to read, but don’t seem to be able to find time. That is changing. It’s part of my New Year’s resolution. I read yesterday. More than a couple of pages and not something on the internet. An actual book. I read for about 30 minutes and was completely immersed in my book. It felt good.

Playing the piano. I have played since I was six years old. I have the piano that was in the house I was raised in. It is in my living room. And it just sits there collecting dust, and books, and mail. It is now cleaned off and I am starting to play again. One of my goals for today is to play for 15 minutes. It is just for me.

My friend helped me realize that in order for me to be a better parent, wife, person, I have to not rely on others to make me feel worthwhile. That is my job. I am responsible for me first. If I am not well, that is projected and can negatively impact those around me, including Brandon.

2019 was hard. I am committed to improving myself so I can be a better parent, wife, and friend in 2020.

And now, I need to go play the piano.

Finding the Balance

Finding balance for my family has always been important to us.  How have we done this over the years?  There are times I feel like we have failed miserably and there are other times I feel like I totally rocked it.

When our boys were younger, Grandpa and Grandma would keep Brandon overnight for us at least twice per month.  While Brandon was enjoying having them all to himself, we enjoyed nights out with A and J.  We went to the movies, we would go out to eat, and sometimes we just stayed home and played games.

We have always tried our best to do things with each child separate from their siblings.  Steve and our other sons go fishing.  Steve and J like to go to the computer store.  When our oldest son was younger, he and I would go to the movies.  We saw all the Harry Potter movies together and I read all the books to make him happy.

As they have all gotten older, it has been a bit more challenging.  A and J have activities with their friends.  J has marching band and concert band.  A has a job and friends he enjoys spending time with.  Those moments of connecting with them are harder to find as they have grown.

A and I talk late at night sometimes as we are both night owls.  J will occasionally go with me to the store and we get that time to talk about what is going on.  Steve, A, and J like to talk about video games and computer stuff that I don’t understand and Steve always tries to make time for those conversations. 

Having these spontaneous conversations in our home is hard sometimes.  Brandon interrupts conversations if he has something to say and is not the best at waiting his turn.  In response, his brothers are sometimes fairly vocal about their displeasure with Brandon “trying to get all the attention”. 

Brandon goes to camp every summer.  We drop him off on a Sunday afternoon and we pick him up on Friday evening.  He has done this for years and loves going to camp.  In past years, me, Steve, and A and J have taken trips together.  I love these memories we have of our trips.  And Brandon loves going to camp.  He starts talking about it as soon as school is over for the year.

Steve and I have struggled occasionally trying to find time for he and I.  Going out to dinner by ourselves does not happen as much as I would like.  We have friends who will stay with Brandon for us, but sometimes, we want to go to dinner with those friends.  What do we do?  We don’t go out to dinner with our friends, but we do invite them over for a game night.  Occasionally, we ask Brandon’s brothers to stay with him.  Sometimes, they agree to stay with him and other times they don’t want to for whatever reason.  We are okay with that.

Steve and I agree that it is not A and J’s responsibility to take care of Brandon.  We have tried to ensure they get to do the things they want, even if we can’t always attend.  Our oldest son played football and soccer when he was younger.  The youngest played soccer and is now in marching band.  We do our best to support their interests while balancing Brandon’s needs.

Sometimes we have to miss a concert because our friends are busy.  We have had to miss sporting events because Brandon’s behavior on those days let us know that he needed to stay home.  We will often split the time.  I will stay home with Brandon while Steve goes to the band concert.  Or Steve will stay home while I go to the awards ceremony.  We would both love to be at these things together, but that just isn’t always possible.

Finding the balance….we are always working on it.  And I suppose we always will. 40020004

Am I a Helicopter Parent?

Per Wikipedia, the definition of a helicopter parent is as follows:  a parent who pays extremely close attention to a child’s experiences and problems, particularly at educational institutions. 

I have been called a helicopter parent more than once by friends and by a family member.  It certainly wasn’t said in a positive, nurturing way.  These people used the term “helicopter parent” as a derogatory term. 

A few years ago, Steve and I had been out and a family member was staying with Brandon.  When we got home, I asked questions about Brandon’s behavior.  Was he good?  Did he eat?  What did he eat?  Did he go to sleep well or did it take a while?  The family member was laughing at me and told me that I needed to stop.  And then he got quite serious and told me that if I wanted Brandon to succeed, I needed to stop being a helicopter parent.

My answer to that person was “you bet your sweet patootie I am a helicopter parent”.  What that person failed to understand (and would not listen to my husband and I) was that the questions we were asking were important.  Why?  Because we said so!  We also needed to know how his behavior was, because at the time, we were tracking it for the behavior therapist.  The family member knew this, but didn’t seem to care.

I have to be a helicopter mom.  Brandon cannot tell me if something happened at school.  He can’t tell me if someone is mistreating him.  He can’t tell me if someone visiting our home is making him do things we don’t agree with.  I always know were Brandon is.  I always know who he is with.  If I don’t make things happen for Brandon, who will? 

I make the doctor’s appointments, I schedule the meetings with the school and the regional office, I work with the respite worker on when she is coming to our house, I make sure the medicine is given on time and that the school has enough.  I make the phone calls to advocacy centers and to governmental offices. 

Sometimes it is more important to discover what one cannot do, that what one can. –Lin Yutang

This quote hit me like a ton of bricks.  I am trying to find the balance now that he is a bit older.  I am learning to trust that Brandon will be okay with others.

His support worker, Kelly, had an observation the other day.  She was working with Brandon on a puzzle and he kept getting up and jumping and then approaching me.  Kelly told me that Brandon seems to always be looking for me to acknowledge him.  That was an eye opening statement for me.  She is right and bless her for telling me!

So what do I do about that?  I have started leaving the house when Kelly is working with Brandon.  I will go in our back yard or to a store.  Occasionally, I just drive around for 30 minutes.  I was sitting in the back yard the other day with my nephew drinking some coffee.  I could hear Brandon doing his angry jumping and I started to stand up and go in.  And then I stopped.  Let Kelly handle it.  She is more than capable of dealing with this and I have to stop running to interfere.

When we went to the soccer game with my niece a couple of weeks ago, Brandon was in my face saying “Mario Kart”.  My niece (who I was sitting next to) told me to get up and she then told Brandon to sit next to her.  I did as I was told and listened to their conversation.  There were a couple of times I wanted to jump in and interpret what Brandon was saying for my niece, but I stopped myself.  And I listened.  Of course, my niece did fine and Brandon did fine and it all was fine.

This past weekend, we went to the same niece’s house for Easter fun and egg hunting with the little ones.  Brandon has been to her house before.  He has been around all the family that was there.  Before we went, I told Steve that I was going to try and not hover over him.  These people are family and I trust them.  And it went well. 

At one point, I had no idea where he was.  I asked my great niece (who is 4) if she had seen Brandon.  She told me he went outside.  I asked which door did he go out.  She said the garage door.  I jumped up, frantic, since the garage door leads to the front yard, which isn’t fenced.  I yelled for Steve that Brandon was in the front yard.  Steve, very calmly, said “he is sitting on the back porch.  I can see him from here”.  Whew!!  What did I learn….question the adults in the room, not the 4 year old.  LOL!!  What did I do?  I sat back down and continued playing with my great niece.

I also learned that the adults in the room had Brandon’s back.  They all knew where he was.  They knew he was safe.

So I am learning when to back off and when to step up.  Brandon is 20 years old.  He doesn’t always need me to help him or to interpret for him.  I have to let him make those family connections on his own.  And he is.  And I love that.  If they have questions, they will ask me. 

I also know that Brandon’s last year of school is next year.  I will absolutely be a helicopter parent so that he gets the services and supports he needs when he is done with school.  I will continue to speak with the regional office on a regular basis.  I will continue to talk with his teacher.  I will continue to make all his appointments and will schedule all the meetings.  And I will continue to fight for his rights as he becomes an adult.

I am trying to find the balance.  I don’t always succeed, but I am trying.