The Deeper Thoughts of A Special Needs Mom

I’ve talked about Julian, and to a smaller extent, Lily, a lot. If you’ve missed Lily’s story, you can catch up in these stories:

Special Needs Round Two

Thoughts on a Second Diagnosis

It’s a lot to deal with. I didn’t wake up one day and wish for not one, but two kids with special needs plus a third with a heart condition. I promise you, I didn’t.

Cameron’s SVT is pretty much manageable, but it’s still super scary when your kid texts you at school because his heart feels funny and you’re a half-hour away trying to watch “The Act” with a friend. (I recommend that show if you’re ready to throw things at your TV.)

I’ve heard pretty much everything since I even had a thought that things weren’t 100% okay with Julian when he was somewhere around four years old. Lily was about a year when I noticed things were less than perfect with her development.

One of Matthew’s aunts hinted that having her three weeks early plus my heavy activity while I was pregnant with her might have led to her not doing what she should.

I almost punched her. Matthew grabbed our coats and we went for the door. Mama Bear was ready to roar.

Not long afterward, Lily was evaluated and of course, I didn’t do a single thing to cause her delays. She was born three weeks early, but that’s not early enough to cause the severe global delays she had. His aunt can go have several seats because Lily has since kicked her brothers’ butts in grades and speaks wonderfully. Two years of speech therapy will do that for you.

When you have a kid that consistently has meltdowns, tears your house apart, runs off in public and does other things that make people go “hmmm”, you’re going to hear a lot of different opinions. I heard almost everything before and after Julian’s diagnosis, even after I put him on meds, even from Matthew, which contributed to our marriage falling apart.

Sad

The Battle In My Mind

I heard a lot internally, also. This is the stuff that will rip you into shreds. It ripped me in half. I read books. I cried. I yelled. (I’m still working on this one, because, well, I’m not perfect.)

I talked to my mom, who understands Julian on a level that I am not sure I ever will. She says she was like him as a kid but didn’t have a mom that tried to understand her like I do Julian. Even though I worked with kids that were like him but bigger, I still didn’t get it. I was lost. So was he. I kept hearing these thoughts:

“You’re a terrible mom.”

You can’t handle Julian and Lily.”

The house is a mess and so are these kids.”

“You’re not good enough”

No wonder I was depressed, and Matthew wasn’t helping. I was trying to help Julian on my own. Lily had therapists left and right, and she did great in First Steps, but I was entirely on my own with Julian. I had some moral support on the bad days from friends and my mom, but I stopped going to Matthew because I knew I wouldn’t get it.

Julian finally got diagnosed in late 2011 and his evaluation was one of the best parenting decisions I’ve ever made. The story of that can be found in Looking at the Bright Side

Getting him on medication is a decision that I do not regret and to this day, I’m glad that I did. Some kids with severe ADHD can function well without meds and that’s great, but as of now, it just isn’t a possibility.

Maybe when Julian gets older, we can revisit meds, but for right now, I’m not willing to take him off. Clonidine is a great medication for impulse control and sleep- he has not been a great sleeper since he was a toddler, and whew, he needed something for impulse control.

Hearing From the Outside World

In the almost eight years since his diagnoses, I’ve heard so much, positive and negative about them. At this point, I’ve probably heard everything, so I no longer care. These are just a few that stick out:

“I’m sorry”- well, I’m not. I am not sorry that my son has an awesome brain that not a lot of us can understand. I would not change him, but I would change his struggles.

I couldn’t do it“- it’s not as hard as you think. Some people really are not meant to parent kids with special needs. If you watch the news, you can see this. Being the mom to two kids with special needs is hard.

It’s really hard when both have a rough day and all I want to do is cry. Instead, I just do my best and everyone goes to bed early. I have a support system that now includes Matthew, my mom, and great friends.

“He doesn’t look autistic”- this makes me want to punch people. First of all, there isn’t a “look” that people with autism have. They look like everyone else. Second, I’ve put years of hard work, money and my marriage on the line (right down to divorce papers) to make sure he is happy, medicated and has skills to live the best life he possibly can. Why wouldn’t I?

“Does he really need the meds?” This one was from my mother in law. She wouldn’t give him his meds on sleepovers but yet complained that Julian wouldn’t sleep. Matthew and I told her either stop complaining or give him his meds- guess who sleeps great now?

I don’t explain anymore to people why I decided on meds, I simply ask them if they want to come to my house on a day in which he hasn’t had meds in two days. (This is not a thing, by the way.)

“How do you do it?” This is annoying. I parent just like everyone else- I get out of bed and hope for the best. Honestly. Pepsi helps. Staying sober is a huge thing. When I was working with kids with developmental disabilities, I will admit, that was rough.

I would come home from a full day, sometimes 12 hours, then have to deal with Julian. (Lily was much easier.) I was mentally and physically drained a lot, and I almost asked to not go to those units, but I loved the work. I eventually transferred to one of those units about a year after Julian’s diagnoses.

At this point, I keep a consistent routine, both kids in their therapies, Julian’s medications consistent and just keep moving. Three kids is a bit of a circus without special needs, but having two with ADD, ADHD and autism is a whole different game.

It requires patience and empathy that I didn’t think I possessed, but here I am. Some days entirely suck, but then, I am dealing with two teens and a preteen.

“ADHD is not really a thing.” Okay then, please come clean Lily’s room, because she cannot without a list explicitly telling her what to do. I also have to take her tablet. She gets distracted so easily that I have to constantly check on her, which annoys her but the job gets done, right? Plus, come wake her up for school. No other explanation needed.

I’m already trying to figure out her morning routine for middle school because it will have be a lot different from the elementary school one.

If you want to experience it from Julian’s perspective, try being super smart, but bored as hell after you finish your work at school, even when the teacher offers you more stuff. Try being hyperfocused on things but not being able to finish them because you, like your sister, get distracted easily.

As a five-year-old, try running off in a parking lot after a bird and not realizing there are cars that can back out at any minute and hit you because all you want is that bird. Oh, and throw in autism. It’s a lot. I don’t know how Julian does it. He prefers to stay at home but will go out if there’s not a lot of people involved.

This stuff happens, everyone. I had to chase Julian through parking lots more than once because he darted off. He’s always been a fast runner. Luckily, he’s stopped this. Whew.

Even with meds, he struggles. They don’t cure ADHD, but they definitely help. I wasn’t looking for a cure- just something to help him not be so aggressive, impulsive, calm enough to sit and learn, and most importantly, sleep. As the years have passed, Julian has calmed down quite a bit, which is a bit of a relief.

Flower

A Few Kind Words

If you’re reading this and you’re not the parent of a special needs kid, please take this as what not to say to someone who is. There are other things you can say that are so much nicer, like:

  • “How is your child doing?”
  • “Is there anything I need to know or learn about your child’s diagnosis?”
  • “Let me know if you need to vent/get out/anything else” (this is so freaking important and believe me, we need this)
  • “You can do this.”
  • “How can we include your child?”
  • “Neat accessories”.. if they have them

These are just a few suggestions. I’ve had parents ask how they can accommodate Julian over the years on playdates and parties and I have appreciated this so much. My father in law has indulged his love for destroying things by bringing him things from his old workplace to take apart.

I’m just a mom, trying to get through parenting. It’s a weird world out there.

What annoying things have you heard while parenting? It doesn’t have to be special needs related, because every parent has heard something annoying. Feel free to share.

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