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.

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

Why it’s Okay to be the Not So Fun Parent

Where’s the Fun?

Parenting is not fun 100% all the time. Any parent that says this is lying. I love my kids dearly, but there are days in which this parenting thing entirely sucks. Either two or all three kids are fighting (their longtime favorite is the front seat of my car), someone is sick or injured, or if I’m really lucky, both. I even nicknamed the fighting between Julian and Lily “The Petty Olympics” because they constantly go for who can bring up the pettiest thing and get on my nerves the most.

Other days, my house is a magical place in which dinner is done on time and nobody fights. This is great.

Most of the time, I’m home with the three ring circus, as the kids are jokingly called. Even when I worked, much of the after-school childcare has been my arena. I’m permanently on call while the kids are at school if anything goes down (and it has- I’ve picked up each kid at least once). This leads me to be the enforcer. The not-so-fun parent.

Someone’s gotta do it, right?

This is not to say Matthew is not a good dad, because he is. He simply works a schedule that brings him home around 7 PM and it’s been this way for many years. Many dinners have been burnt in the process of the kids not tearing the house apart, having a meltdown, or fighting. Fighting is a common theme at my house.

Mom is a Meanie

If I had a dollar for everytime that Lily told me I am “the meanest mommy ever” I would never have to work again.

She’s 10. She has no idea what’s coming for her in the future.

It used to hurt my feelings that my kids thought I was mean and they didn’t like me…but no longer. I had a chat with my mom, the queen of mean moms. She reminded me that it’s not really my job for these kids to like me but for me to raise them to be decent people.

Good point, Mom.

Now quit buying my kids recorders.

One of our biggest challenges as parents is to do what my mom said- raise our kids to be decent people. They need to learn manners, to fight fairly, talk appropriately, and many other lessons. This may mean not being the fun parent all the time.

Sigh.

I’ve had to let the kids learn to squash their sibling fights on their own (unless things get super bad) because it got draining on all of us. Being the not so fun parent means having to enforce the rules, all the discipline stuff (big bummer), making sure your kids don’t hurt others and teaching them how the world works, especially when they mess up.

I do worry that I’m a bit too hard on the kids. When we’re out in public, I do tend to crack down a lot on their behavior before it even looks bad. One of the last times Julian had to get a haircut, he was so angry he walked out as soon as he was done. He got my evil mom glare as he walked out. I took a deep breath, apologized to the hairdresser and gave her a really nice tip. He was mad that he had to get two inches off the top, not just one.

Matthew tends to be a bit more laid back in general so someone’s got to be be a bit heavier with things. If I wasn’t, I’m pretty sure this house would be a crap show in an hour. This also fits my semi Type A personality. It’s okay to be the enforcer. Kids need structure, rules and guidance. My kids gets that from both Matthew and I. They know that I have basically zero tolerance for certain things but being kids, they will still attempt to push buttons. It’s what kids do.

The biggest payoff, not that I was looking for one, is hearing how well-mannered my kids are when they are with other people. My friend Madonna has five kids. She kept my boys overnight recently and when she brought them back, she told me “Your boys are so good! You should be proud of them. They were so nice and have good manners.”

I thanked her. I guess the not fun mom thing does pay off. She told me her kids are loud and wild no matter where they go, but she and her hubby are working on this. I figured that while my sons are less than mannered sometimes with me, I have taught them something while they have been rolling their eyes and sighing at me.

The lesson here is: your kid might be annoyed at you while you’re teaching them manners and other things but it does pay off.

If you’re the “not so fun” parent, don’t be so hard on yourself. It’s okay to be a bit harder on your kids, especially in the age of super disrespectful kids. I’ve seen videos of kids that shocked me- my mom wouldn’t have tolerated any of that for a second. Kids aren’t robots, they do have thoughts and feelings- but it is good to instill things like respect and good behavior in your kids.

Parenting is a tough job- try to make the mental load a little lighter. Try to have a bit of fun in the midst of the seriousness. I certainly do.

Pics courtesy of Pinterest

Twin Mummy and Daddy

Not Just the 3 of Us

Adjusting to a New World

Many parents, myself included, envision parenting as this wonderful adventure in which kids develop at the pace they should, play instruments and/or sports, learn to drive, go to prom and all that great stuff.

But what happens when those things are altered because of a special needs diagnosis?

Cry a little

The Big Change

Some parents find out about their child’s diagnosis before or right after birth, in cases of Spinal Bifida, Cerebral Palsy and Down’s Syndrome. I know parents of kids with these diagnoses, and it has been life changing for these families. All of them have other kids without any special needs.

The adjustment is hard. I cried my way through Lily’s evaluation for First Steps the day before her first birthday, even though I knew something was not going right. I knew she needed more help than what I could give her. That story can be found in Special Needs Round Two . When her diagnosis of global delays was given, I was even more devastated. The blame game began. It took a lot of talking with Lily’s speech therapist, Denise, to realize that it wasn’t my fault that she was developmentally delayed. We are in the process of getting Lily re-evaluated. At ten, she is still showing signs of issues that we thought she had grown out of. Cross your fingers for us- we may need it.

In Julian’s case, it’s been a tougher road. His psychiatric nurse practitioner, Ann, once said that we have adjusted wonderfully as a family to Julian’s needs. I almost hugged her. I explained to her that it has not been easy and it remains a somewhat rugged path. My question is: Why not adjust? Julian is wired differently and that’s okay. If we didn’t adjust, he would feel badly about himself and I couldn’t bear the thought of this. It would also cause so much chaos for him that he doesn’t need or deserve. It would do the same for the rest of us. Why do that?

He needs the ability to feel okay about who he is, quirks and all. We’ve enjoyed watching him grow and finally develop a sense of humor. Every kid needs that, with or without a diagnosis. In a home with medical issues, this is a necessity.

I have made many mistakes in raising Julian (and his siblings). Even after reading up, trying many different things, therapy for both of us, getting Matthew on board and lots of burnt dinners in the process, things remain interesting. Julian is now 12 and puberty is kicking in.

Learning that your child has a medical and/or physical special needs diagnosis is complex. Some parents grieve the life they feel their child “should have had”. This is a rough one for me, as I’ve never done this. I can see this happening with kids with severe medical problems. A high school friend of mine has a child with spinal bifida and she lives a full life. Instead of being devastated and staying in a hole as some might, Shelly and her kids go out and do all kinds of neat things. Ryan is eight, and she is one of the coolest kids ever. She’s a tiny fighter. Some parents, like myself, are devastated and are not sure where to go next. Some fall into the “research pattern” and find all kinds of information to know exactly what to do.

This can be a great thing- I have read up a lot on Julian’s diagnoses and it didn’t hurt to work with kids with similar issues. (It did physically hurt some days, but that’s another story. I learned a lot from that job.) Some parents, sadly, go into denial. This can be damaging to everyone involved, and I highly recommend seeing a therapist, church member, or another trusted person. If it’s your partner, this can get really bad quickly, and I definitely know the pain of where it can go. Please do what you can to change that path. Talking can help. Easing your partner into information, appointments, and other things can help. Just don’t force them, because that can make things worse.

I recommend reading up, asking questions, and getting all the help from the medical community you can. The more information you have, the more empowered you feel to help your child. Julian’s been very lucky- he has had a great team from day one, because I wouldn’t let him have anything less. I’m a proud mama shark.

Never give up

It’s okay to feel different things- don’t let anyone make you feel different. Julian was diagnosed almost seven years ago, and some days I still feel overwhelmed. As of writing this post, I’m about to battle it out with his school over his IEP because it’s currently not being followed. Some days are better than others. Some days are absolutely great, some are so bad that you want to devour a liter of Cherry Coke, a bag of salt and vinegar chips and call it a day. (Okay, maybe that’s just me. I didn’t do all of that, but I considered it.) If you’re overwhelmed, write it out. Get someone to help you sort out your feelings.

Making The Best of Things

Daily life also changes. Depending on the diagnosis, your child may need assistance with everything, or nothing at all. This can become time-consuming and require an overhaul of your routine as you knew it. Food may need to be altered due to sensory issues- I live in a house with two kids with sensory issues, and I gave up on those battles years ago. Julian won’t eat french fries if he can see the potato skins or if they aren’t super warm. Lily won’t eat anything that resembles soup, any pasta that isn’t spaghetti, mainly because it looks different. Julian actually had a meltdown once over the shape of pasta my father in law used for dinner. These changes can be irritating to make, but they are necessary for the world our kids live in. I’ve learned to look inside Julian’s mind a bit, probably because of my work, and try to see the world as he does. It can get hard, but it’s worth it. Explaining this to others can get even harder, even your partner.

Small steps

It takes time to adjust- it won’t happen overnight. It takes time to learn how your child’s machines work, or how to get the wheelchair to fit in your van. Give yourself space to make those mistakes. I completely screwed up Julian’s 12th birthday party by inviting too many people, which cause him to shut down at the end, but I’m pretty sure he still likes me. He used to get mad at me when I would hold onto him with a death grip in parking lots and large stores, but he had a bad record of eloping. It was terrifying to have to run after a very fast 5 year old, especially in a parking lot. He was seven before I let him walk more than a foot or two away from me. (I never used a leash because I hate those things.)

If you’ve got a kid who takes things literally, you have to change how you talk to them. For example, I once told Julian to drop the jar of jelly he was holding after he was told not to eat anything. I was making dinner and he didn’t need to eat so soon before.

He dropped the jar.

Major mom fail.

Thankfully, the jar was plastic. That would have been an awful mess otherwise. Matthew and I have had to re-think things before we say them, because Julian thinks differently, and so does Lily, to an extent. We are still trying to figure out her thought patterns. She doesn’t quite think on a 10-year-old level, so we have to tread carefully.

Super parent

Final Thoughts and Tips:

If you have to buy things to keep your house, kid and car safe, do it. You’ll thank yourself later.

It really does take a village. I have friends that have kids with all kinds of physical/ developmental disabilities. A few have kids with autism, and they have been so helpful when I’ve needed them.

Being a parent of a special needs kid will make you a different person. I’ve fought for Julian since day one. Lily’s issues haven’t required so much of a fight, but I would do the same for her. It makes you tougher and less likely to take people’s crap.

Breathe and find something that makes you laugh. Comedy will get you through anything.

Get a binder and organize all of your kid’s paperwork. Julian and Lily have their own binders.

You are not alone, and get help if you need it. Take time for you, because your kids need Mom at her best. If you’re tired, sad and cranky, that’s not your best.

If you have other kids, let them be involved in adjustments. It’s not easy to be the sibling of a special needs kid. My kids have been pretty good about Julian, but it can get hard for us as parents. Cameron and Lily have a post about this in The Siblings’ Turn

Allow your child to live their best life. If they can do it- let them. My friend Laura Leigh’s son, Levi, is seven. He is in a wheelchair due to Cerebral Palsy, and he is an awesome kid. He smiles for days, gives his younger sister Presley wheelchair rides and loves school. I let Julian run cross country in the fifth grade and he loved it. We have a rule that his diagnoses aren’t excuses for not behaving. He does have bad days, but he doesn’t get to say, “I’ve got autism, so I get to act like that”, “I forgot my ADHD meds, that’s why I’m like this today”.

Most of all, love and accept your child the way they are. It might sound weird that I wrote that, but it is saddening that many parents don’t. Acceptance and love matters- it’s everything.

Quotes courtesy of Pinterest

Recommended Reading: The Spark: A Mother’s Story of Nurturing Genius

Twin Mummy and Daddy
Sibling Wars

What You Won’t Do..Or So You Think (As a Parent)

This post was inspired by a Facebook comment discussion with Matthew’s cousin Alexis. We were discussing the things we never thought we would do or see as parents, but here we are… Alexis has four kids (two are hers, two are her husband’s from a previous relationship) under 8, so she stays busy. Her brother’s (now ex) girlfriend is pregnant with their first son and doesn’t quite know the adventures of parenting- she apparently thinks she will never see a blow-out.

*evil Mommy laugh* Oh, Jessica, are you in for a rude awakening. October is gonna be a very interesting month for you.

Sibling Wars

Sibling Wars

Raise your hand if you have more than one kid and you envisioned that they would never fight and get along at all times. I’ll wait.

*tick tock…tick…tock…*

Exactly. My sons are almost ready to qualify for WWE wrestling spots. Julian has a great headbutt (I know this, he almost broke my nose once). I’ve heard thuds and screams that would stop a non-seasoned mom’s heart. Me? I just make sure they’re still in one piece. It’s not like they have breakables in their room. They randomly walk up on each other and poke them.. disturbing their calm. Anyone else? It’s like they can’t live happily knowing the other is peaceful.

Lots of shade for mom

All the shade goes to mom

I did not envision the amount of snark and shade that would enter this house or my response to it. When you are sarcastic and have sarcastic/snarky kids… things get interesting.

The mini-queen of shade (because I am the reigning queen of shade in this house) is Lily. She’s not tiny but the shade is real. So are her eye rolls, door slamming skills, and stomps. The pre-teen years are here and not going anywhere.

I hear it only gets worse, so someone send me an endless supply of Cherry Coke and chocolate. Thanks. I’ve been told I am “the meanest mom ever”. “I don’t even like you”, “I never liked you anyway”, you know, all that fun stuff. But then, at the end of the day, Lily wants to hang out with me so I guess she might like me after all.

Cleaning

What’s cleaning?

When I imagined motherhood, I imagined a cleaner house than I currently have. I also didn’t imagine a daughter that is super messy. The boys team up and clean their room in less than a half hour. Lily takes days. She cries and pouts her way through it and just… no. It has taken me two hours to do it before and then I can’t move the rest of the day. We are re-doing their room this summer- the boys are getting new beds, and both the kids’ rooms are getting re-painted. This means a huge cleanout. Again, Cherry Coke please. I slightly obsess over my kitchen counters being clean (they’re gross at the moment) and the floor is never clean, but we have much more fun doing other things anyway.

When Lily goes to college, I’ll be 43. Unless my RA has progressed terribly, I will still have the energy to clean the house. If it has, I’ll hire someone and be done with it. Until then? I can forget a spotless house. I attempted this when the kids were smaller and nobody was happy. These days, well, the kids help and this is good.

Coats

Arguing about coats

Fall and winter are great around Kentucky until you mention jackets and coats. Ugh. I have to almost shove the boys into them. Lily ends up looking like Ricky from “A Christmas Story” from October-March. Julian hates bulky coats because of his sensory issues and Cameron loves the cold like Matthew so you can see the issues I face. Both boys end up with polar fleece jackets. I can forget gloves unless it snows but luckily they like hats. Cameron lived in a Seahawks toboggan for two winters.

Getting them to wear jackets is a process. I have to tell them what the temperature is in the morning and what it probably will be when they get home because otherwise they will take their jackets off. I’m not kidding. Cameron took off his jacket on the bus one day and proceeded to try to walk home when it was 35 degrees out. I stopped that idea as soon as I saw him. I never thought I would argue with a kid over wearing coats and weather, but every fall and winter, here we are.

A friend in Maryland has the same issue. Ironically, she also has a Cameron.

Me? I bundle up as soon as it hits 40 degrees. I hate cold weather.

Priorities

Kids change your priorities

I never saw myself as the helicopter mom, because I just don’t have it in me for all that. I figured I’d be watchful but not too overbearing.

Then I had three kids.

Like every other parent on the planet, I have two ears, eyes and hands.

I used to intervene with the kids’ battles, but.. jeez, they’re pre-teens and it’s called problem solving. They learn this at school and can apply it in real life at home. It drains my brain and patience. Kim Bongiorno knows my life. Now, I’m just like, “Y’all have about three minutes to figure this out, because I’m not listening to it all day.”

Who wants to hear kids fighting all day? I most certainly do not. My kids are too loud for all that and I’ve only got so many migraine meds.

Parenting will make you do a LOT of things that you don’t envision before. Some are hilarious, some aren’t. May the parenting force be with all of us for the rest of summer vacation.

Pics are courtesy of Pinterest

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