My Fearless Leader

There’s a common saying in the autism parenting community that I love: “Autism is a journey I never planned but I sure do love my tour guide.”

In honor of Autism Awareness Month, this post is for Julian. He is now 12, almost as tall as me, and is still my lookalike. Most of all, he is what his psychiatric nurse practitioner calls “well-loved”.

Firetruck pic

In a firetruck at the 2018 FEAT Autism Walk

Back to the Beginning

When he was five, I had no idea what we were in for. I just knew that he needed me and more help than I could give him. I doubted myself so much because even with all of my knowledge and work, I still couldn’t manage him.

I dreaded going out in public because it was a risk- he was a runner. What if he ran off? What if he had a meltdown? His meltdowns were loud and lasted at least a half hour. I made my trips as short as possible. I went out alone when I could so I didn’t have to worry about chasing a very fast kid.

School was a tougher topic. He struggled to sit through kindergarten and didn’t like his teacher but loved her assistant. Even after his ADHD and autism diagnosis and medication, he continued to stay away from his peers. He remained quiet, barely speaking to anyone. Julian was in his own world, both at home and at school.

It turns out that’s a personality trait- he is my quietest child. He won’t talk to people he doesn’t know and needs prompting sometimes to speak to those he does. Eye contact is non-existent and I don’t force it. As long as I see that he’s looking at my face, I know he is listening.

The Road to Now

Julian has spent a lot of his childhood in therapy. He started with a social worker in 2013, a psychiatrist, who recommended group therapy while he was in third grade, and now he sees Ann, his nurse practitioner, once a month.

Group therapy helped more than anything else. I had to pay out of pocket for it because insurance wouldn’t cover it.

I didn’t care.

It was worth every penny. He learned skills that he can use for the rest of his life- sharing, talking about himself in a group, handling challenging emotions, and other topics.

Julian struggles with empathy, even after that was a theme in the group. We work on this a lot. He may say something that hurts another person’s feelings but doesn’t get why.

I explain to him why what he said was not so nice and that he needs to think things out a bit more before speaking (hilarious for me to say that because I am the wrong parent for this) and apologize. Sometimes this works, sometimes I lose him.

Julian also developed a sense of humor. For a while, we weren’t sure if he had one. He didn’t get sarcasm and was so serious. I had to explain jokes to him.

He has been fearless pretty much since he could walk. There have been incidents that resulted in broken bones, staples, stitches and other assorted injuries. None of these things stopped him. As he’s gotten a little older, he has learned to hesitate a little, but he’s still the first to get into something.

Birthday pic

Eating his 4th birthday cake with a cast

Humor finally hit him and I was thrilled. His humor is dry but we appreciate it. Sarcasm is still not a thing for him but it’s not for everyone.

Julian thinks in incredibly concrete ways. He eats certain foods (pretzels are life) in a certain way. He thinks things should happen in a particular order and doesn’t always get why it doesn’t happen like he thinks it should.

However, he’s very smart. Seventh grade has gone well- his IEP focuses on his handwriting (it needs improvement) along with other goals. His grades are good and his best subjects are math and science. He’s always been talented in those subjects.

In many ways, Julian is like most 12-year-olds- he loves playing on his Xbox 360 and riding his bike. He thinks the prank videos on YouTube are the funniest things he’s ever seen. There are just a few quirks involved.

I’m Not an Expert

I read a lot about autism. I worked with kids all over the spectrum for almost five years. I’ve been injured in the process but loved the work. It truly changes you and how you see the world.

Still, I am not an expert. I do not know what it is like to be Julian. I do not know what it is like to be in the lunchroom full of noisy kids and have to block it out so you can eat and try to talk to your friends. I do not know what it feels like to be super bored for a minute or two in class but yet, it feels like forever.

I do, however, know the feeling of wanting to hug a wonderful child who won’t let me because he hates the feeling. I know exactly how it feels to watch your child yell loudly over the shape of pasta because it’s not the right one. This has happened, but not in years.

I’ve often wanted to take a trip inside Julian’s mind, but I know this is impossible. Since I can’t, I try hard to remember where he is and help him through his needs. We don’t let him have everything he wants, because that simply isn’t how the world works. We do, however, make accommodations when we can.

Julian has been an adventure to raise. The road has been a bit bumpy but I will stay with him forever.

Therapy pic

Yay! He finished therapy (2015)

If you are the parent/caregiver of a special needs child, how has the path been for you? Please share in the comments.

Looking Into the Future- Autism in Adulthood

I think a lot. My kids give me plenty of topics to ponder: dating, clothes, impending puberty. One topic will remain on my mind for a very long time- how will having autism affect Julian as an adult? Will he need help with managing daily life, or will he be able to do everything on his own? He’s not great yet at self-advocacy, so how will this affect him when he needs his ADHD medications adjusted? Will he find someone that loves him?

Sometimes these thoughts keep me up at night. I have to remind myself that we can only move so fast in life and that right now, I am just trying to get Julian through the 7th grade. He’s currently fine on his meds and otherwise, has friends and is growing- he is finally over 5 feet tall. I think he will be as tall as me soon. (I am 5’2″, but to him, this is EVERYTHING)

Bird nest

Letting Go of Your Baby Bird

Watching our kids grow up and move into their own lives is hard. My mom actually cried when I moved out. I often joke about being delighted when the kids are gone, but I will most likely be a sobbing mess when those days come. In Julian’s case, I have the feeling that I will be happy, but a new set of worries will begin. I won’t be able to help him as much as I can now. I am trying to teach him to speak up for himself in all aspects. He’s quiet and I worry that may hold him back or cause issues.

What about college? Julian has decided that he doesn’t want to go to college (see My Kids and College) and this is okay. For those whose kids want to go to college, remember that this is a time of growth and transition for everyone. Your child is about to be around a lot more people than they were around in high school, which equals more noise, smells, etc. This in itself can be an issue. The buildings are bigger, brighter, and further apart. This is something else to get used to.

College schedules are different. Making friends in college can be either difficult or easy, depending on your personality. In this case, it may be a bit more complicated. You, as a parent, may have to resist the urge to monitor their every step and wait for them to tell you everything they did in class, whether they are at a nearby community college or a thousand miles away.

However, some kids with autism struggle in college, mainly with organization. The extra free time can be an issue because they aren’t always sure how to maintain a routine. It can be hard just to get through the day- class, eating, homework and other essentials. It can be just as difficult to read social cues, as it was when they were children, and/or know what’s expected of them.

Most young adults age out of supports at age 22 (at the oldest), which means IEP, 504 plans, etc, are gone. There’s nothing to replace them. Transition planning usually starts around age 14 (depending on the state- Kentucky, for example, does start at 14- Julian will be a freshman). This is the time in which parents and teachers start planning for when the supports run out. The adjustment is still a big one.

The best idea for those who want to go to college with autism is to tap into organizational tools. This may consist of a planner, alarm clock, and most of all, be able to ask for support. Ask your college advisor for extra supports on campus- a group may be available, or other resources. Some of this information can be found on Child Mind

Autism Speaks provides a Transition Tool Kit for families. It can help you take the steps you need to ensure a smoother move into adulthood for you and your family.

Boy walking

Decisions, Decisions

College isn’t an option for every child with autism. There are other options. Day programs for young adults are becoming more common and popular- they enable the young adult to get out and participate in the community and go home at night. Participants also learn life skills.

Payments are either covered through a waiver, insurance, a combination of both, self-pay, or other options. I highly recommend looking at different places and comparing before choosing one, and of course, taking a tour. These are usually an option no matter where your child is on the spectrum, but all programs are different.

Another option is hiring part or full-time caregivers. I have been a caregiver (more often called Direct Care Providers) and honestly, it was a lot of fun. I worked with a 13- year- old boy that lived about 5 minutes from me. He was a blast to work with and always kept me laughing.

The caregivers can come in your home, meet you and your child in the community, pretty much wherever you need them to. They can help your child learn skills like money management, social skills, life skills and a lot more. I used to take one client to lunch at least twice a week to work on both money and social skills.

A third option is a group home setting. Again, I recommend looking around and considering what you can afford and what you can get covered. This can create a sense of community for your child- everyone needs that in some form. In most of these settings, they are asked to complete chores, go on outings (fun times!) and have other things provided for them. This information is also from Child Mind

What is Love?

Everyone feels love- even those on the spectrum. I’ve never been able to grasp the idea that people who aren’t able to speak cannot feel love. Just because they can’t talk doesn’t mean they can’t express how they feel.

They still think and feel, they are just unable to vocalize it. One of my favorite kids was completely non-verbal but she would squeeze your arms to say “hello”, “goodbye” and to show she was happy.

Relationships can be a bit hard to manage while on the spectrum. Cues are hard to read and many hate small talk, the kind you would have on a first date. It can be hard to enjoy yourself in a loud, noisy place when you are overwhelmed.

It can be even harder to explain that you have autism because of the myths and stereotypes. Even touching, like holding hands, can be difficult. Some people think that those on the spectrum resemble robots because they don’t show how they feel when it can be the opposite.

Most want a romantic relationship, but it is difficult because they don’t know how. Relationships while on the spectrum can be successful with an understanding partner and a bit of work. You can find this information at The Atlantic

In Julian’s case, he hates hugs, so I am not sure how he will react to a girl hugging him. I’ve explained to him that if a girl hugs him and he gets angry, it’s going to hurt her feelings. I suggested that maybe he should step away and tell her that he doesn’t like hugs, that he would like a shoulder squeeze. He looked at me like I had six heads, so I’m not sure if it sunk in.

Man working on car

Making Some Money

Working is an adventure and autism can sometimes throw a small speed bump into the process.

Finding a Job can help your child get on the path to finding a job that they can enjoy. There is a video on the page that is helpful.

There are issues that some run into while being employed. Two of the largest issues that workers on the spectrum face are the settings of the job itself (bright lights, noise, etc) and workplace bullying. Those can cause a lot of frustration, stress and even anxiety and depression. They can also cause the worker to leave their job unexpectedly.

Discrimination in the workplace is an issue and some have been fired as soon as they disclose that they have ASD. This is not only wrong, but it is also illegal. It’s usually tied in with complaints from co-workers and/or others, habits being seen the wrong way, or other workplace issues. This information can be read in more depth at The Art of Autism

The transition to adulthood is not an easy move for anyone involved- parents or kids. When ASD is involved, it doesn’t mean that the transition is impossible.

It means that we have to balance the need for letting go and still being nearby in case our child needs help. Maybe one night I will be able to shut these worries off and sleep. Maybe not? I’ll see in a few years.

Pics courtesy of Unsplash

Book Review: “The Warner Boys: Our Family’s Story of Autism and Hope”

This month’s book review is early, but thanks to the holidays and other events, this should have been done long ago. My apologies to Sabrina, the publicist for the Warners. I forgot to mention this to her, but I’m a Seahawks fan. #GoHawks!

Curt Warner is a former Seahawks running back who met his wife, Ana, while out shopping. Ana is from Brazil and was working to make ends meet after moving back from her home country. They quickly fell in love, got married and started a family.

After the devastating loss of their first son, Ryan, Ana and Curt welcomed another son, Jonathan, then twins, Austin and Christian. Later, they adopted a daughter, Isabella.

The boys began to show signs of autism as early as toddlerhood but were not officially diagnosed until elementary school.

It’s extremely difficult to hear that sort of diagnosis, so it is not surprising that Curt and Ana were devastated. They dealt with their sons’ autism differently.

Ana was able to stay at home while Curt worked and immersed herself in trying for a cure. When that wasn’t a possibility, she tried for perfection. This led to a crippling depression that made her suicidal at one point.

Austin and Christian faced struggles that many kids with autism do- lack of danger awareness, obsessions (Disney movies), issues in school and diet issues.

Jonathan, their older brother, is also featured in the book. I liked this- siblings of children of special needs should also have a voice. Sometimes they intentionally get left out.

Ana and Curt tell their story alternately, with a lot of heart and description. Their sons went through good and bad times, like many other children. The good thing is, they never lost hope in them. Austin and Christian will be taken care of their whole lives and for that, they are very lucky young men.

Any parent that needs a word of encouragement through a rough patch can get just that from this novel.

This is my Review of the Month for the review collection on LovelyAudiobooks.info

Thoughts on A Second Diagnosis

I discussed our issues with Lily in Adjusting to A New World and Special Needs Round Two.

The results are back and I wasn’t far off in my thoughts- she has ADHD, the inattentive type. I was so concerned about an autism diagnosis that I barely looked at information on ADHD in girls. The diagnosis itself isn’t a shock, but my thoughts on it are a lot different than I expected.

I usually don’t use my blog to get so personal but in this case, I figured people wanted updates.

Ann, the same psychiatric nurse practitioner that sees Julian, did the evaluation. She told me that it isn’t uncommon for siblings to have ADHD, autism and other neurological disorders.

This makes sense- I met quite a few sets of siblings at the mental health facility I worked at. I also know a couple of sets of siblings in which ADHD or autism is involved. For example, Josh has four kids, two of which are on the spectrum. I do not know how he and his wife, Emily, function on a daily basis. Another friend, Lauren, has two sons with ADHD and one of them is also on the spectrum.

Girls with ADHD

So here I am, with not one, but two kids with ADHD. I will be honest here- I would have cried had she been on the spectrum. Handling Julian has not been easy. There have been massive meltdowns and shutdowns and times I just couldn’t reach him no matter what I tried.

It is good that I have some direction now- there is so much we can do to make her life a bit easier. We have made a lot of adjustments for Julian over the years so it’s not a second thought to do the same for Lily. Benny, her therapist, has returned from a 3-month position in Germany so that should be a good place to start.

Lily isn’t a fan of meds when she’s sick, so we are holding off for now. This kid makes all As and Bs even with attention issues. She’s not aggressive or having other issues that require meds immediately so she may not end up on them at all.

I told her to talk to Julian if she wants an idea of what it is like to take meds for ADHD because I am entirely clueless about how those medications make you feel. He has been medicated since shortly after his diagnosis. They have helped greatly and I do not regret that decision. As my mom once said, “We got Julian back.” Meds don’t fix everything, but they certainly help.

I’m feeling a bit overwhelmed. I’m used to that feeling. I wonder if I can really handle this- I have that thought on an almost daily basis. I know I have support, but that thought creeps up a lot more than I would like.

I am, however, glad that I was able to get Lily this evaluation and the therapy she needs. I know not every kid is this fortunate. I have some reading to do and some changes to make. Wish us luck, because we will need it.

Pic courtesy of Pinterest

The Giving Season: Teaching Your Child Empathy

Our children learn a lot from us- how to treat others is one of those lessons. During this time of the year, we remind our children to give back and care about others.

Most kids are pretty good at showing empathy- the ability to understand what it’s like to walk in someone else’s shoes. Some kids need a little extra help in this department, and that’s okay.

Kids on the autism spectrum and those that have other special needs may need help with this. For example, Julian has had serious issues learning empathy and we work on it almost daily.

Empathy is important for a child’s well-being because it helps build happy and healthy relationships. It can also help prevent bullying and other destructive behaviors/relationships.

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Working Towards Empathetic Kids

How can we teach our kids to be more empathetic?

  • By being more empathetic ourselves. This means tuning in to what each of our kids needs, physically and emotionally. It also means cherishing their individual personalities and loving your kids as they are, not what you may want them to be. This also means being showing empathy to others, because our kids watch what we do. They watch how we interact with others in public, our friends and other family members.
  • Make caring for others a priority. This can vary among families, but many families value taking care of family whenever needed however possible. For example, my kids know that my mom has mobility issues because of her knee replacements, so they help her walk down our very steep driveway. They have watched Matthew help his mom’s family numerous time because he’s great with cars and home projects. I try to help my friends as much as possible and the kids have also seen this.
  • Provide opportunities for kids to show empathy. We have done role-playing games with Julian as part of therapy. Over time, those have sunk in a bit, and so has discussing real-life issues in sessions. If you have a kid on the spectrum, you can imagine how difficult this lesson can be to teach. It is starting to get slightly easier. We discuss school and news issues because we are a pretty diverse family and this has created some very interesting discussions. When we took in Miss Purr and Tiger, those were two great times to display empathy, because rescue pets require that. My kids fell in love with both animals instantly. When Tiger’s tumor ruptured, Julian may have been the saddest person in the house. He insisted on sleeping with him the last night before he was put to sleep. When I woke him up for school, he was holding Tiger’s paw. The kids were genuinely worried about Tiger and devastated when he was gone.
  • Teach your child to identify their feelings and how to cope with negative feelings. Kids need to know how to identify how they feel so that they can deal with it. They need to be able to express themselves- it can be confusing to not know how to describe how you feel. It can feel worse to not know how to cope with negative feelings. Let your child know what ways are and are not acceptable to deal with those feelings so that when they are angry, sad or feeling other ways, they don’t have to wonder how they can cope.
  • Ask “How would you feel?” This may sound simple, but it can be effective. I have done this often and it will make a child think a bit deeper than you may think. Let the child pause and reflect for a few minutes (if needed). They may not know how they would feel at first and need the extra time. Maybe they haven’t thought about it before.

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Teaching empathy may take some time, the earlier you start, the better. Have a great holiday season with your family!

How do you encourage your children to care about others? Do you have a favorite story about your child being empathetic to another child? Share if you do!

Information courtesy of Very Well Family

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Pics courtesy of Unsplash

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