Thirteen Years of Adventure

Three kids provide a lot of memories.

My middle child and youngest son, Julian, is thirteen today. That makes two teen boys..yikes.

He’s taller than me, his voice has changed and eighth grade is coming fast. But yet, he’s still funny, curious and so smart.

As a baby, Julian was so chill that we called him “the Buddha baby”. He grew and so did his heart. His hugs practically choked you if he hugged you around the neck and he gave the best kisses.

Little Guy, Big Changes

Thanks to the onset of autism and ADHD, I don’t remember the last time he hugged me. I won’t lie, I miss his hugs. He wouldn’t hug me or anyone else if you paid him…well, maybe. Depends on the amount. He knows that if he needs a hug, I will always have one for him.

Four wheel pic

Raising Julian has taught me so much about myself, as a special needs child will do. I’ve read books, sat through evaluations and agonized over medications. I’ve cried so hard my eyes swelled from fighting with Matthew over what to do.

We have had great victories, like Julian finally trying new foods, graduating fifth grade, and him making friends. That was a huge one. I literally felt relief all over my body the first time I dropped him off at a friend’s house. He’s tried things that he was scared of, which is big.

Julian is a third of my heart, one of the best things that will ever happen to me. The years have a way of flying by and I have no idea where they went.

Baseball pic

He’s into video games, his bike and watching YouTube. Prank videos are his jam. It fits his personality, because he loves to joke and pull pranks on people. His day is made if he scares someone. Halloween is one if his favorite days of the year, but he doesn’t care about a costume.

Here we go into thirteen…I hope we both come out in one piece!

How did you adjust to teens?

More posts about Julian:

Livng With an Energizer Bunny

My Fearless Leader

A Morning Walk for Autism

Living with an Energizer Bunny

Autism.

If you have a child with autism and/or ADHD, you may understand why I gave this post the title it has.

Whew!!

I’ve often joked about bottling Julian’s energy and selling it, but if I really did, I’d be a wealthy woman. It’s more than what you can find in a can of Monster. (He’s not allowed to have those or any other caffeine, because, honestly, he doesn’t need the boost.)

Like most kids with his diagnoses, Julian wakes up early, school or not, and is ready for the day. The rest of us are a bit slower to get up. He’s learned not to bother anyone, so he usually watches TV or grabs breakfast.

“Just because you’re up doesn’t mean the rest of us have to be.”- me to Julian one morning after he woke me up far too early and I was NOT happy. This has become a rule.

Thanks to his medication, he’s not running all over the place or getting into a ton of trouble. He’s almost 13, so that helps. Julian’s definitely full of energy and is up for a lot of things- you just have to ask him.

I do wonder, however, how he just.keeps.going.

I could NEVER.

I’m done for the day by 8, earlier if it’s been a busy day..RA fatigue for the win. Even with thyroid meds that are very well managed and RA meds that work wonderfully, I still don’t have half the energy this kid has.

I do admire his curiosity and ability to get into interesting situations. I just need him to slow down a bit.

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“>bloggy moms July 2019 blog hop

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 Truth About Shutdowns and Meltdowns

There are many parts of parenting that we would rather not have happen- stomach bugs, dentist appointments, braces.. the list can go on for a while.

If you’re a parent of a child (or children) with ASD and/or ADHD, a couple of things on that list probably includes shutdowns and/or meltdowns. Neither are fun and we would do just about anything to wipe them off the map. I know I would. Julian’s had both and there’s nothing fun about them.

Let’s take a look..

A shutdown is when the following things occur with your child:

  • may not move, blink or speak
  • may appear as avoidant, escaping or ignoring to others that may not understand what is going on
  • may find a dark, quiet space to get away
  • curl into a ball or fetal position

Why do these occur?

  • Extreme stress
  • Sensory overload (noise, visual are usually the biggest trigger)
  • Frustration

A meltdown is when the following things occur with your child:

  • potentially dangerous and/or aggressive behavior (kicking, biting, screaming, yelling, throwing, etc. Julian almost broke my nose during one when he was smaller) Self- injury is also possible.
  • Bolting
  • Destroying property

These can be stopped, or at least lessened, if you learn your child’s triggers. For example, Julian hates Bath and Body Works because of the many different scents. I avoid taking him in there if I can. If I absolutely have to take him, I am in and out within minutes. We went to the outlet in Daytona Beach, and we were out as soon as he said, “Mom, we need to go, right now.” That’s his code phrase for “I’m done and we need to go.” I already knew what I wanted. This comes from years of knowing my son, plus he had a massive meltdown when he was younger in the middle of our local store.

It may take a few incidents and some tears but learning your child’s triggers is the best thing you can do for everyone. My personal motto for this is “Know your kid”. Your child’s triggers may change as they grow, but some may stay the same.

The reasons for meltdowns are pretty similar to shutdowns. It depends on the kid and situation. Julian is more likely to have a shutdown than a meltdown these days, but I wish he didn’t have either one. He still has bursts of anger, but he’s 12 and there’s a thing called testosterone. Public meltdowns are the worst, and any parent that’s had to deal with that knows that awful feeling. Everyone in the area is staring at you and your child, you just want to go, and all you really want is your child to calm down.

From a parenting perspective, watching your child go through either is heartbreaking. I spent many days crying because I couldn’t stand to watch Julian throwing things, screaming and scaring his siblings. I was relieved when he finally stopped having meltdowns. It hurts my heart when he has shutdowns because I can’t reach him. I have to wait for him to speak- he’s a quiet kid and expressing feelings isn’t easy. I try to put myself inside his brain and remember he lives in a different world than the rest of us.

What Can You Do?

If your child is having a meltdown:

  • Assess the situation. Is everyone safe? Is there anything you need to move to make the area safer? If so, move toys and other objects out of the way.
  • Move other people out of the room that don’t need to be there. This is the most important thing. If your child self-injures, make sure they can’t hurt themselves. If your child is becoming truly dangerous to themselves or others, please take them to the closest emergency room or call 911.
  • Don’t try to reason with a child that is verbal if they are screaming or yelling at you- they are well past that point. If you want to try to talk to them, you may want to wait until they are calm.
  • Remain calm. This is very important. Things can get a lot worse if you become agitated. Your child needs you to remain calm.
  • Limit communication. Your child has enough going on in their mind.
  • Give your child time to recover. Meltdowns are exhausting. They can talk later.

If your child has shut down:

  • Give them the space and quiet they need, as long as they are safe. They may or may not respond to anyone or anything until they are ready, and this may take some time.
  • Don’t rush them, this may make the situation worse.
  • Give them any sensory supports they may need.
  • If they want to talk afterwards, let them talk.

These can be difficult moments, no matter when or where they occur. It’s our job as parents to understand and try our best to guide and love our kids through whatever they bring us.

Pics courtesy of Unsplash

Information courtesy of

My Asperger’s Child

Bristol Autism Support

Psychology Today

The Autism Analyst

Twin Mummy and Daddy

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