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

Preschoolers and Preteens: How Are They Alike?

I’ve had a lot of time to reflect on how child development works- I learned a lot about it while in college- I got a crash course twice in infant development. I even took Cameron to class once for this and of course, he had the beginning of strep. Everyone loved him anyway, because he was an adorable baby, just a little cranky.

Sleep: How does this work?

Cameron was a terrible sleeper when he was younger- we had to drive him around at night. He was the kid that made me debate if I wanted more. Apparently, he is now catching up on all the naps he refused to take as a toddler. Much like a preschooler who stopped taking naps, he’s a bit cranky later in the day. He takes a nap just about everyday around 4 and if he doesn’t get it, he complains about not getting his sleep. I giggle because he has no clue of the sleep Matthew and I missed out on trying to get him to sleep.

Sleeping Cameron

Not even to Natural Bridge and Cameron needed a nap..

Good thing he’s so cute while he sleeps, right? The other two are great sleepers- Lily still tells us she’s going to bed and once she’s in bed, there is no waking her up.

Food: The eternal struggle

I’ve touched on picky eaters before in Parenting Pet Peeves. Lily and Julian have been picky eaters since they were small. Both had sensory issues, which creates its own chaos. Lily has since gotten past this, but Julian’s, of course, are permanent. He won’t eat french fries that have potato skins on them, people. That’s where we are right now. I’ve met and worked with a lot of preschoolers that won’t eat a lot of things for many reasons but this one is up there on the wildest things I’ve heard.

We have learned to pick our battles, split Julian’s fries among the rest of us, or try not to get him fries at all and move on. It’s not worth the fight. Preschoolers love to fight their parents on food-related things, and it can get exhausting.

Growing Way Too Fast

This one bugs me the most. When did Lily need a bra? When did Cameron and Julian graduate elementary school? Cameron’s about five minutes from finishing seventh grade. Preschoolers tend to do this before we can blink. I barely remember my kids finishing preschool because it went by so fast, between Julian’s broken arm and other assorted injuries, Lily being the cutest thing in her class and Cameron going off to elementary school. It was a blur. Preschoolers sing songs and make stuff when they graduate, probably to make it a little easier on us.

Cameron's 5th grade graduation

Cameron’s 5th grade graduation

You notice he’s almost as tall as me in the pic, right? Fast forward two years and he is taller than me. Ugh.

They Love Animals

This house is an animal friendly house. So far, pet-wise, we have had a handful of turtles, three mini-hamsters, one dog (Tiger), a rabbit (Bugs), and the very spoiled Tails and Miss Purr. They also love going to zoos and seeing other animals. Cameron wants a koala or a panda, Lily loves jellyfish and snow leopards, and Julian likes almost anything but penguins, because they stink. Every preschooler I have ever met loves animals. They may not like petting them but they definitely like animals.

There is a nearby free petting zoo and we go quite a bit when the weather is good.

Lily’s 9th birthday party was at a local animal shelter and everyone loved it. We got to play with cats, and that was the highlight of the party.

Lily's 9th birthday party

Lily petting a cat at her birthday party- a blast

Exploring is a MUST

My kids, for the most part, love to get into things. Julian is usually the kid that is most likely to get into something he shouldn’t be. His cousin, Chase, used to tell him, “Don’t do it, Julian. Your mom is gonna be so mad.” Chase is a pretty cautious kid, and he was usually right when he said that. I think he stopped saying it because he realized it wasn’t going to stop him, so he just waited to see what was going to happen next.

Matthew and I took the kids to Natural Bridge a few years ago and we loved it. Lily hated the walk up and complained the whole way. The boys loved it.

Natural Bridge

Cameron climbing out of a small cave he found at Natural Bridge.

Preschoolers get into everything they can and squeeze all the fun they can into a day- same thing about ten years later. My kids have all the fun they can, as they should, because adulthood comes far too quickly and then you have to pay bills. Yuck.

They scare the hell out of you.

This award goes to my boys. Cameron wins for his heart condition, because SVT (you can find info here) is scary. He just got off a month-long monitoring for this and we are thrilled no issues were found. The scariest day I’ve ever had as a mom was the day we found out about the SVT in 2015. He passed out at school after playing basketball and an ambulance was called. The school staff thought he’d had a heatstroke (it was early June) but once he was at the hospital, it was quickly seen that it was not that but something else. After a second major episode in March 2018, he had to have a small procedure to stop these issues, and it was successful.

Before Julian’s ADHD and autism diagnosis, he broke his left arm, right foot, had a concussion, and cut a finger with garden clippers. He did all of this before he was four. He has since calmed down, thanks to a diagnosis and meds, but has still had a few injuries-nothing terrible.

Kids of all ages will scare you, sometimes starting with the day they are born. Preschoolers are interesting little people. They have no fear, will try almost anything and just don’t care. This ends badly, especially when they take a flying leap off a bunk bed, which is what resulted in Julian’s broken arm. That ended in resetting his left arm.

They will steal your heart.

When you aren’t settling fights, wondering when the fidget spinner fad will end (it’s still a thing at my house), or doing one of the other many things you do to keep your kids in one piece, your kids will manage to steal your heart. It happens. I think it’s normal?

Twin Mummy and Daddy
Bringing up Georgia