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.

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