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!

This may just look like a picture of Alyssa’s back. I Couldn’t take a video since the other one was naked BUT what was happening was Alyssa was being Courtney’s therapist during bath time.

From just days after Alyssa was born she has either been carted to her sister’s therapies or has seen therapies happen in her house. She knows the skills Courtney is working on, she knows how to ask the questions, she even knows how to be patient and kind.

I think the coolest part is that Alyssa truly believes (and is kinda right) that Courtney listens to her better than anyone else.

A therapist in the making!

We have been back to school for a month now. What a busy 4 weeks it has been. Two teachers and two children getting back in the routine. Alyssa adjusting to a new teacher and new classmates. Courtney adjusting to new EVERYTHING! Joe and I continue to roll with the punches as we navigate through it all.

So how is it going?

Alyssa has had a great start to 2nd grade. I am so proud of her. As much as she loved her Kindergarten and 1st grade teacher, I think she needed a fresh start. Yes, there has been anxiety. Yes there have been some minor issues here or there. But she has worked through it all like a champ. I feel like we have even made some breakthroughs on what is triggering some of her anxiety so now we can help her even more. Though, as well as things are going, after such a rough year last year, I struggle letting my guard down. I keep waiting for that phone call or email saying she is struggling again. I’m hoping that as each good day goes by, I will feel a little more confident that it is going to be a great year!

As for Courtney? The transition to her new school has been tough. Her new team seems very nice and I believe they are working hard to make this a positive experience, but so far all we are seeing is an increase in aggressive behaviors. The frequency and intensity is higher than we have seen in a long time. There are bruises on her arms from all the self biting. It is breaking my heart knowing she is struggling there.

Is it because of all the changes?

Is it the cold that hit our household?

Is it the fact that we are on the verge of her going through one of the biggest changes a young girl can go through?

Unfortunately Courtney cannot express what she is feeling verbally. Her only way of expressing her frustration with something is through behaviors. So as mama bear, I am left wracking my brain trying to figure it out. Fortunately the behaviors are not carrying over as much at home so I get to see a happy girl every night.

So that is where we are at as we finish the first month of a new school year. Overall, I guess you can say we are hanging in there…possibly just by a thread. We are taking each day as it comes.

Goodnight 9 year old…

I’m going to be honest. I’m struggling as I say goodnight to Courtney on her last night of being 9. can’t come up with the words. I looked through old posts and came across one from 3 years ago that says it all. I’m reposting it and changing the age….

10 years ago tonight, joe and I went to our favorite Mexican restaurant. That night we were just a married couple enjoying our last night as just that. The next day we became parents. Parents of our beautiful Courtney.

Ten years ago we knew we were about to start an amazing adventure but there was no preparing us for the adventure we were truly about to embark. Ten years ago we new we were about to be parents but we had no idea we were about to become autism parents. Ten years ago we were about to become mommy and daddy but we didn’t know the effort it would take for her to say mommy or daddy. Ten years ago we were prepared for the ups and downs of parenting but we were not prepared for the ups and downs, the struggles and celebrations, the laughter and tears and the complete joy of parenting a child with autism. And here we are, ten years later, excited to celebrate our special 10 year old tomorrow.

Oh Courtney, as we celebrate you and the past 10 years, as unprepared as we were that night, we wouldn’t trade the journey you have brought us on and continue to take us on for the world. We love you, Courtney Cathryn! Happy night before your birthday!