Here I sit…

“gray pants”

“shirt”

“socks off”

These are the demands I get from Courtney whenever I’m in the house.

This attire means I’m home for the night.

This attire means she’s home for the night.

This attire gives her comfort.

It was cute at the beginning that she would make these requests as soon as I stepped in the house. I would laugh. Some people get greeted by a hello, I get greeted by demands on what to wear.

But now it feels controlling. Almost suffocating. It’s a huge reminder that her separation anxiety is out of control. It’s a reminder that she doesn’t like leaving the house. It’s a reminder of the difficult stage we are in.

So here I sit.

Just as she demands.

Gray pants.

Shirt.

Socks off.

I’m struggling with blogging lately. I’m struggling finding the words that explain what has been going on lately. I’m struggling finding the words that explain how I feel.

Part of it is because so much of what is going on is not my story to share. Part of it is because some of it is so deeply personal. Part of it is because I just can’t find the words.

I hate that blogging is a struggle because it is usually my outlet. It’s usually my way of dealing with the stress. But right now…I can’t find the words.

January and February were so hard. Actually, they were traumatic. I welcomed March with open arms even though it comes with some big changes. But after a meeting with Courtney’s school today, not feeling confident March will be much better.

I’m hoping things calm down soon. I’m hoping things become more manageable. I need things to turn around.

In the meantime, I’ll just remind myself that sometimes it’s ok not to be ok.

Courtney actually doesn’t like swings. Why? Because she doesn’t feel grounded on a swing. This may come as a surprise since she is such a climber, but Courtney hates anything that involves her feet not being grounded. You feet are still “grounded” when climbing.

She didn’t like aqua therapy when little because she couldn’t touch the bottom. Couldn’t even hold her in the pool.

She struggled with horse therapy because her feet were dangling.

She’s always had an interest in swings though. You could tell she was intrigued. As she grew taller she would sit on a swing as long as her feet could touch the ground.

Since we could tell there was an interest, her therapists made it a goal for her to tolerate swings. We made it a goal because that vestibular motion is so regulating for her.

I’m loving watching the progress. She’s even exploring the new swing the girls got from Santa!

Oh girls, some days are just hard. Sometimes… very hard.

So hard that sometimes I end up not being the best mommy I could be.

So hard that you even notice that mommy has hit her limit.

I need you to know though.

That on the hardest of moments, the hardest of days, i still love you with all my heart.

Friday we had an IEP meeting for Courtney. It wasn’t her annual meeting. This was a meeting mutually called by both her school team and Joe and me. We all decided it was time to meet as a team to discuss what we can do to help turn things around.

Unfortunately there isn’t an overnight fix to the phase we are in right now. I’m not expecting one.

I also wasn’t expecting the emotions I felt when sitting at the table and seeing all who support Courtney gather together. Since we have seen an increase in behaviors across all settings I also made sure as much of her home team was involved in this discussion too. This included her BCBA, her private speech therapist, Savannah and our advocate. 12 people in one room (this does not include all the private therapists and para professionals that support her). 12 people who had one goal. Helping Courtney make progress in the safest way possible. I was so moved.

Joe and I did not want her to change schools going into this year in fear of exactly what is happening. We have had many moments lately where we have felt angry as hell that the district put her in this spot. But this meeting told us something. Her new team loves her and will do everything in their power to make sure things turn around.

I wish there was an overnight fix. BUT…there is a plan. In the meantime we are comforted knowing she has quite the team helping to support her along the way.

I’ve always been a firm believer in the phrase, “it takes a village to raise a child”. What I didn’t know is that a waiter at a family restaurant could become such an important part of that village.

I’ve talker about Roger before. We visit him every Friday at our favorite restaurant. He has waited on us since Alyssa was a baby. He has watched the girls grow. He has helped us celebrate their birthdays, he has watched them learn to eat new foods, he has heard some of Courtney’s new words, he has learned their likes and dislikes. He makes them laugh when they are sad, he will entertain them when they are antsy. Heck, he has even gotten them gifts.

In letting him know just how we feel about him, Joe said it best. Like most families with kids, going out to dinner is never easy. For our family, it is even more difficult. In fact, it is almost impossible. We have Courtney with autism and Alyssa with severe food allergies and anxieties. Both girls are insanely picky eaters. There are meltdowns. They are loud. They can get disruptive. Over the years, we have found going to a restaurant not worth it. Except on Fridays. Roger has made going out to dinner with our girls possible. It’s the one night we actually are able to eat as a family.

Roger is so much more than our favorite waiter though. Alyssa said tonight that Roger is like family. She nailed it. He is like family. He has become like a 3rd grandpa to the girls. He has become our friend.

We knew this day would come. Roger has decided it is time to hang up the apron. We didn’t say good-bye though. Instead, we told our friend that we will see him soon.

Thank you, Roger, for every family dinner time you have given us over the years!

I don’t know what to call this phase. What I can say is it has been tough. Not sure what is causing it to be so tough, I can only guess. In fact, your guess is as good as mine. The truth is…we have no clue. She can’t tell me what is going on so I am stuck guessing.

It’s been two months since school started. Two months of her getting use to a new school, class, friends, teacher, routine, etc. Two months of me waiting to hear that she is acclimating well. Two months of updates that include one tough day after another. Two months of me holding my breath around 2:45 to hear the update from Savannah on just how tough her day was.

I hate it.

I hate that I have lost faith in seeing a good day right now.

I hate that I don’t wait to hear if it was a good day but instead I wait to hear just how bad her day was.

I hate that it is now carrying over at home.

I hate that the bruises on her wrists are almost calluses.

I hate that as her mom, the one who is supposed to make it all better, has no idea how to help her.

We are in a tough phase. It’s an awful one. One of the worst yet.

I hate this tough phase but I will keep standing right along side reminding her just how much I love her.

I keep looking at her wrists. I tell myself to stop, but I don’t. Each time I look at them, I feel my heart bruise just like her wrist.

Why do you hurt yourself?

What is upsetting you?

Does something hurt?

How can I help you?

What is going on?

Questions I ask her but only in my head. I don’t actually ask her. What’s the point of asking her? If she could actually answer those questions, would she even feel the need to bite herself? So the questions stay in my head waiting for answers.

I keep looking at her wrists and my heart hurts. Instead of asking her why, I just rub her wrists. I hope the soft touch tells her that I can sense her pain. I can sense her confusion. I hope the soft touch reminds her that I am hear to protect her and get her through this rough patch. I hope what she doesn’t feel with every touch is how helpless I feel. How sad I feel. How bruised I feel.

I keep looking at her writs in hope that just maybe, I will see them start to heal so my heart can heal too.

This isn’t just any box. It’s a box that costs $56. It’s a that have had to buy at least 2 of every month for the last few years. Before that it was other brands. I’ve been buying an insane amount of these for 10 year! This box holds 75 diapers. Thanks to team Cranston (which includes therapists, nanny, sitters, school, etc.) the last 2 months I only had to buy 1 box a month!
Yes, you read that, potty training has been insanely successful this time around.
Let me specify though. She is still spending a majority of the day in diapers. She is not initiating when she needs to go. She depends on us keeping her on a schedule and if by chance we forget to take her or her schedule gets off, there are accidents. But let me tell you…I’ll celebrate each and every penny of those $55 dollars because it’s that much closer to her mastering one of the biggest skills out there.

I’m not sure how to blog about this. Maybe I shouldn’t even share it. It’s been on my mind for quite some time. I feel her dignity needs to be kept in mind. But on the other hand, I also think it’s an important stage in a girl’s life and letting other moms with girls with autism know they are not alone during this transition is also important,

So here’s the thing. Courtney is 10 years old and I’m going to just come out and say it…puberty (aka menstruation for females) is around the corner. And when I say around the corner…all the signs are there and have been for a while.

I’m not ready. What mom is?

Now let’s add severe autism to the mix.

Let’s add minimally verbal to the mix.

Let’s add still in diapers to the mix.

I’m scared. I’m anxious. I’m not ready.

This is my little girl. Sure, chronologically and physically, it’s about time. Mentally, emotionally, cognitively…she needs more time. I need more time!

I’m just going to say it…I’m definitely in a fragile state as this next transition approaches. she caution…tread lightly.

To the other mom’s at a similar cross road…I see you. I feel your anxiety. Hugs!