Back to the Beginning

Life has a way of pulling us forward and then yanking us back.

Right now, I’m being yanked.

If you need the back story to Lily’s issues, please read

The Things I Forget

Special Needs Round Two

Thoughts on a Second Diagnosis

So Many Late Night Thoughts

Lily’s pediatrician referred us to a dietician and a pediatric endocrinologist. We saw both in one day, which I don’t recommend. It’s physically and mentally draining.

A few highlights:

  • She doesn’t have any major thyroid issues. Meds may be needed in the future but not today.
  • Her pituitary gland is working fine.
  • No autoimmune issues. I’d be crushed if she did because it would be directly from me.
  • However, she’s sitting on the borderline of type two diabetes. Diabetes runs on both my and Matthew’s sides of the family. Her A1c has dropped, and it wasn’t that high, to begin with, but it would be good to work on this.
  • I turned in the OT paperwork and her dietician is signing her up for a cooking class in the spring.

Isn’t that a LOT to absorb in a few hours?

I didn’t sleep well last night at all (these appointments were on 11/12, two days before this post went up) and as Macklemore once said: “I gotta get this on the page”. For him, it means writing out a rap, I’m writing out my feelings via this blog.

I tried to relax by watching some TV and hanging out with Miss Purr, and that helped. I thought all the stress was gone and then I tried to go to sleep.

Nope. I don’t know what time I fell asleep but it was well after I got in bed around 9 PM.

It probably should have been a melatonin night.

How did she gain so much weight and I didn’t realize it? Jeez, I thought I paid more attention.

Developmental delays are forever.

You’re a crap mom for not starting the changes sooner.

How did you ignore Lily but go so hard for Julian and Cameron?

Do I even want to talk to Matthew about this? I can’t go through what went down in the beginning with Julian again. I’d walk first.

(For the record, I did tell him everything but not because I wanted to.)

These are just a few thoughts.

Trying to Not Feel Sorry for Me

I try to keep a positive outlook on life, even when I’m stressed to the max and/or angry at myself.

This gets really difficult when my brain attacks me. I already struggle with severe anxiety. It kicks into full gear when I have so much to think about.

I don’t sleep, I have a hard time relaxing. I usually don’t talk about it even though I fully know I should. The words are hard to get out of.

I try to remember that we are already making changes. Things don’t get easier overnight. It would be great but that’s not how life works.

I remind myself that Lily doesn’t have any major issues, the ones I feared. This is great.

There are three of these kids and one of me. I’m doing the best I can. I’m just not trying to do anything to make things worse for her. I guess that would mean not doing what the endocrinologist and dietician recommend.

I don’t know how I even thought that she would grow out of her delays. I guess it was wishful thinking. I’ve since realized that I was wrong and so I have to adjust my brain.

Let’s Go Back A Few Years

Julian was diagnosed in 2011 and it changed our lives.

I don’t think I forgot about Lily, but I feel guilty now for letting her fade a bit into the background. Does that make me a bad mom? Probably. Maybe not?

I’m not sure at this point.

As for talking with Matthew, that was non-existent for about three years after Julian’s diagnosis. He wouldn’t listen. He questioned my abilities as a mom, which stuck in my mind permanently.

It’s probably why all Matthew gets is facts, not an ounce of emotion. Even after therapy, I’ve had a hard time wanting to open up to him.

*sigh*

He finally got the idea because he wasn’t left with any other choices. I think that stayed with him because so far, nothing bad has happened.

I just know that I feel the same crushing guilt that I did in 2011.

I didn’t feel so much guilt about Cameron’s heart issues because we had no idea until his first episode. I do, however, feel bad for his migraines. That’s entirely from my genetics.

What’s The Plan?

Obviously, I’m going to follow the recommendations whether Lily is a fan or not.

I’m trying to keep perspective. Lily might need to drop some weight and get more active but there’s a student in my preschool class who might lose her eye due to a tumor.

This kid is barely three.

I will bawl if she does lose her eye.

The lesson?

There’s always someone who has worse issues. Lily’s are fixable. My student’s aren’t.

What else? Try to remember that I’m not as horrible as a mom as I tell myself I am and try my hardest to be patient with Lily.

Thanks for coming to my Ted Talk.

The Path to Middle and High School: Is Your Child Prepared?

As of the date of this post, August 1, there are 13 days left before my kids go back to school.

I could not be more thrilled.

No, really. I am. I love these kids, but they’ve got to GO.

We have had a lot of fun over the summer and it’s probably my last as a stay at home mom because our family schedule finally allows me to go back to work. This is good.

Are my kids prepared to go to middle and high school?

Let’s discuss.

Cameron is going into his freshman year of high school. We will skip the fact that he is attending the same high school that Matthew and I attended, met and graduated from in 2001 (do the math, it hurts my brain to do it for you). Julian is going into the 8th grade, which means he can start going to his IEP meetings if he is so inclined. Lily is starting 6th grade.

That’s a lot.

Step

Lots of Changes for a Kid Brain

Middle and high school are a bit different from when we were there, depending on where and how old you are while reading this. Even if you are in your early 30’s, it’s still a different planet. The boys and I discussed drugs over the summer, and for some reason, I was not entirely shocked to know that Cameron could find marijuana if he was in search of it. (He isn’t, but if he were, it’s not hard to find.) Maybe it’s because of my previous work, the fact we do live in the suburbs of a large city, or possibly both. I’m not sure.

Let’s just say we had another chat about the dangers of drugs, alcohol, and in Cameron’s case, energy drinks. Thanks to his heart condition, he can’t drink those and/or much of anything with caffeine in it. None of us are in the mood for him to end up in the ER.

Both boys are on medications that don’t interact well with these substances, so it wasn’t a hard chat. Thanks to my past issues with drinking, I don’t think they’re a fan. I’m not really sure if I should be happy about that or not. Combine this with my past work as an addiction counselor and I’m basically a walking, talking DARE teacher.

Does anyone remember the DARE program? If you don’t, find an older sibling, friend or cousin and I’m sure they can tell you about it.

Cameron was a bit of a slacker during his middle school years- it irritated me because he is a very bright kid. All of my kids are. I told him multiple times that in high school, there’s less room for that because colleges (if he goes that route) will be looking at those grades for admission and scholarships will be hard to get if he just coasts through the next four years.

“Calm down, Mom.”

His classic line that will probably cause my first heart attack or second stroke.

Lily, on the other hand, may surprise me. I’m a little concerned because she emotionally functions a bit behind her peers, probably at like a 9-10 year old level. She tends to hang out with kids that are a little younger than her.

I have no issues with this, but I worry that she may get bullied. She has friends coming into the same school with her, but there are mean girls in every school, starting on the first day.

She’s super bubbly, helpful and a really sweet kid. I think that she will be fine- she made better grades than her brothers did, so I have no worries there. Once she finds a few clubs to join and finds her place, she will be fine. I may be worried about nothing. We have talked about bullying, school work, and other topics, so I’m hoping things go well.

Eighth grade is basically a no-brainer for Julian. He is not worried at all about going back to school. His IEP is ready to go. His thoughts on going to school with Lily? “I don’t know her.” They won’t see each other except on the bus and that’s fine with him.

Classroom

Is Your Child Ready?

Starting a new phase of school can be scary. It can also be fun. This depends on your child’s personality.

A few tips for discussion with your child:

  • What are you looking forward to the most?
  • What worries you the most?
  • What can I do to help?
  • Do you know anyone going to your school?
  • Do you think this school year will be hard, easy, etc?
  • How do you feel about any changes at your school?
  • How do you feel about your sibling going to school with you? (something they can’t change, but it’s nice to let them talk about it)

Most middle and high schools offer orientation for incoming students. Mine are going to theirs. I think it helps ease the anxiety of some fears about the first day- knowing where to go, lockers, etc. Registration is usually afterward, which makes things easier on parents.

We can’t make things magically better for our kids all the time, but we can help them feel a bit more confident as they go into a new stage in their lives.

On the first day, it can help a lot if you give them an encouraging note, chat or even pat on the shoulder/hug if they will let you. That can create a great memory.

The path to middle and/or high school can be a rough one for kids and parents. The first day is the toughest, the second starts to get a little better.

Parents who have sent a child to middle and/or high school before, how was the first day? Feel free to leave a comment!

For further reading:

My Kids and College

Pics courtesy of Unsplash

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.

A Talk With My Mom

My mom and I were talking today (2/6/19) and we were discussing the death of a soap opera actor that she really liked. It’s been suspected that it was due to alcohol and I told her that I had once been close to, if not, actually had alcohol poisoning.

“Why didn’t you tell me it was that bad?”

I didn’t really have an answer.

I had to think for a minute.

“I don’t know. I already had a lot going on. I was so messed up for a while and I didn’t want you to worry more.”

It’s called shame, y’all. It’s a big topic in recovery.

My mom hit me with that “don’t bullshit me” look that I’ve gotten about a thousand times in my life.

“No, seriously, Wrae. You can come to me with things like that.” She actually looked hurt. My mom’s not much for feelings so that must have really bothered her.

The Sunken Place

When you’re in the deep, dark place that is alcoholism, or even binge drinking, there is not space for telling many people how bad things are. This might even include your mom.

There is mainly room for drinking. The feelings you have go away, at least for a while. The alcohol clears out the pain and if you’re lucky, maybe you won’t remember the dumb things you did.

The emotions you’re trying to drown out are usually big. They feel too big to manage, and sometimes the usual coping skills just don’t work. I drank well before my life took a huge left turn, but Jake’s death destroyed me. The grief was too much to take.

There isn’t much talking. You don’t want to talk about why you drink- but telling someone about a wild night of drinking might be fun. It’s so hard to face up to the damage you are doing to yourself and potentially others. That day does come, however. My day came and went two years ago. You can read that story in Two Years of Sobriety

Since that day, I’ve finished therapy and started going to a Yoga 12 Step for Recovery class on Sundays. It’s one of the best things I do all week. I struggle with reaching out for help when I need to talk.

Writing helps a lot and I am able to get my thoughts that way, but I know talking is better sometimes. Honestly, it gets exhausting. When I get done talking about how I feel, I’m drained. I need a nap. I used to leave therapy tired as hell, especially if I had been crying.

All The Feels

I’m still a work in progress. I know I have a lot of people that I can talk to. It’s just a matter of speaking. Doing so requires lots of feelings- shame for even having this to deal with, guilt for having to unload on people who have dealt with my problems for over so many years, and just having to process whatever might be under the surface.

Can you tell this is not my favorite thing to do?

Quote courtesy of Pinterest