I briefly mentioned in my last post that as Alyssa’s anxiety has decreased, we have noticed Courtney seeming a little more regulated. I truly feel we were in this dis-regulated state as a family these last few months. Now that Alyssa is more regulated, we are seeing some positive changes in Courtney too.

During these last few months we had to stop all therapy goals for Courtney that worked on peer play with Alyssa because neither of them could handle it. This past week, per Alyssa’s request, we were able to work on them playing games with each other. Still very short lived but the longest they’ve sat with each other in a while. It was so beautiful to see these moments again!

I’ve been going back and forth on if I wanted to share an update. Part of me is worried that this update may be too personal. Then I realized the exact reason why I couldn’t decide is actually the reason I should share the update. So here I go….

I’ve shared a lot recently about Alyssa’s anxiety. I’m not talking about a little anxiety when I leave her side, not the anxiety some may feel when trying something new. I’m talking about anxiety that runs your life. The type anxiety that makes you feel sick most of the day. The type of anxiety that causes your whole body to shake and have struggles breathing. The type of anxiety that leaves egg shells around the house and makes everyone wonder when they are going to step on one.

We tried so many different strategies with Alyssa. All the strategies did was escalate a panic attack. It was hard to watch her struggle so much. As her mom I had to take the next step. Medication. There yo go. I said it. I decided to medicate my 6 year old. To be honest, when making this decision, I was more worried about what people would think about me giving her medication than the medication itself.

I’m glad I was able to look past the stigma and do what was best for Alyssa. The past two weeks the egg shells we were walking on have disappeared. The “my tummy feels funny” phrase that we were hearing from her more times than we can count have basically stopped. The shakes, the tears, the irrational fears have diminished to almost none. There’s calmness in our house again. I truly believe Courtney was also feeling Alyssa’s anxiety and she can now feel the difference as she seems a little less anxious. I’ve noticed changes in behavior that I didn’t even realize were related to her anxiety. The past 2 weeks I have slowly gotten my little girl back.

I completely understand why it can be scary to try medication. We tried medication with Courtney 2 years ago and it didn’t go well at all. We’ve experienced the scary side. Now we’ve seen the positive side. We couldn’t be more thrilled to be sweeping up the egg shells instead of stepping on them. We couldn’t be more thrilled to have our little girl back.

We’ve been going to a family restaurant nearby on a Friday or Saturday night most weeks since Courtney was born. They all know our family there. They have watched the girls grow up. For most of those years, we’ve had the same waiter. He is amazing! He absolutely ADORES the girls and spoils them. He of course has become well aware over the year of Courtney’s differences. We arrive and within 5 minutes he puts a plate of French fries in front of her every time. I’m pretty sure the girls think the restaurant is called Rodger since we always say “it’s time to go to Rodger’s”.

Today was probably our best visit yet. (Mind you it had nothing to do with behaviors because Courtney was pretty manic during all of dinner and could be heard throughout the entire restaurant.) Courtney has started to eat pancakes there. Today when Rodger came to the table to get give us a bread basket, Courtney verbally said what sounded like “Rodger pancakes”. We all looked at each other and Rodger asked, “did she just ask me for pancakes?” He was so excited! We all were! He quickly left and after a few minutes returned with a plate of pancakes for his favorite patron. He then said “I can’t wait to tell my wife that she asked me for pancakes!” I don’t know what was more exciting. Her asking him or his excitement. It was beautiful!

Courtney’s 3 year re-eval at school is next week. I got the rough draft of the reports. Though I know it’s part of the process and doesn’t represent the progress she’s made, it was still very hard to read. Hearing phrases such as “aggressive behaviors”, “severe to profoundly delayed” , and many other things over and over again hit me hard.

A shared my emotions over it with a good friend and two of my sisters. They each reminded me to focus on her progress. They are so right. Courtney has made gains I never imagined she could make. I wouldn’t change her for the world. She is my hero. Tonight she made a waiters night by what to some may be a simple request but to all of us it was the most beautiful request ever. Who cares about how far behind she is from her “typical peers”!

And to our favorite waiter…thank you for being such a special part of our village.

I got an e-mail from Courtney’s teacher letting me know that she will be sending home the invite for Courtney’s 3 year re-evaluation next week. She then asked, “do you have any parental concerns?”

See, there is a section on the IEP that asks what parent’s concerns are at this time. It has to be filled out. Staff are required to ask this question. I know that has a Special Education teacher myself. But what a loaded question! Do I have any concerns? I have so many concerns. Concerns most people shouldn’t have to think about as a mom of an 8 year old. Concerns like, will my daughter have someone to take care of her when I die years from now. That’s not what they are asking for though. Or maybe they are? I wonder what their answer would be if I replied with that answer?

Anyways, that is not what I put on the list. Yet, there are still some big concerns on my list so far. So what IS on my list of parental concerns?

1. Aggression towards self and others. Courtney is aggressive both towards herself and others. I hate that this is the case. Most parents want to know what their child learn each day at school. The first thing I want to know is how aggressive was she? Who did she hurt? Did she bite herself? I would love to not have to worry about this some day. Instead I worry more and more each day. She is only getting bigger and stronger. Some day she may really hurt someone. Did you know her own sister is actually fearful of her at times?
2. Statewide assessments. I know longer want Courtney to take statewide assessments. I may have read somewhere that once you are excused from statewide assessments you are making the choice that the child will not be eligible to receive an actual high school diploma. There you have it, at the age of 8, I’m already deciding that she will not receive a true high school diploma. Please someone correct me if I’m wrong though.
3. Handwriting…why are we concentrating so much on handwriting. Is it awful that I’m mad at that? Courtney really struggles with fine motor. Writing her name is VERY difficult. Though with a great deal of hard work, she is starting to do it. She is 8 years old and barely able to write her name and most wouldn’t be able to read it. My concern is are we focusing too much on handwriting when it will forever be insanely difficult for her? When are we going to focus on other methods of writing such as typing? So while some are angry that they barely teach 8 year olds cursive now, I’m going to fight for the teachers to stop working on handwriting period.
4. Now for a big one. Wait…high school diploma wasn’t considered a big one? Nope…I have bigger fish to fry right now. Potty training. Potty training is one of the big ones. Is it time to try again. Will she ever get it?
5. Oh wait…I have a bigger concern. And yes, this a concern I need to share with a teacher. This is not just a concern for her caregivers at home. PUBERTY! More specifically, PERIODS. But Erin, she’s only 8?! Yes, she is only 8, but we have heard of those little girls who get it by the time they are 9 and 10. Well that is just around the corner. When do we start discussing how staff will handle this when the time comes? How will school handle when my daughter who is still in a diaper get her period?
6. So while I’m at it, why don’t I ask the question…what happens when I’m no longer here?

There you have it. My answer to the loaded question, “do you have any parental concerns?” Yes, I do. I have some big ones. These are just a few of the ones that keep me up at night.

It was a very hard week. Courtney’s aggression was high, Alyssa’s anxiety was high and to top it off my mom had to have emergency brain surgery because of a brain bleed following a fall. This week sucked. This week almost broke me.

Today my family had a birthday party for two of my nephews. My family needed this party. Only my dad can be with my mom in the hospital so we still went ahead with it. We needed to be together. So when Alyssa started to have a panic attack this morning because of the car ride, I dug my heals in and said we need to do this.

It wasn’t easy convincing her to get in the car but she was brave and did it anyways. Thanks to the help of her worry doll, Dramamine, sea bands and the music to her new favorite movie, Encanto, we made it to the party. And the best part is there were smiles in the car along the way. I got to a stop light and looked back and saw Alyssa and Courtney grabbing each other’s hands both with the biggest smile. So thankful for that red light so I could capture the moment!

I needed every moment of today. I needed a successful car ride. I needed to see my dad. I needed to see my siblings: I needed to see those beautiful smiles. It was just what I needed.

In an internet search looking for some other ideas to help Alyssa with her anxiety, I came across The Worry Doll. In Guatemala, it is believed that if you share your worries with a worry doll, your worries will be taken away. So going to give it a try.

Meet Alyssa’s worry doll! Oh, Adella, I hope you can help her some!

I’m struggling.

I’m struggling because I have two young girls.

I’m struggling because both of my girls have needs that require extra support.

I’m struggling because their needs are hard.

I’m struggling because the therapies are never ending.

I’m struggling because the days are long.

I’m struggling because nights are long too.

I’m struggling because no matter what I do, it never seems to be enough.

I’m struggling because their hurts need more than a bandaid.

I’m struggling because I’m their mom and I’m supposed to be able to make it all better but here we are…struggling,

I’m struggling but they need me.

They need me to advocate.

They need me to be their voice.

They need me to be strong.

They need me to fight.

I’m struggling but these girls need me and their love will keep me going.

Courtney was labeling pictures of the family one night. She said “dad”, “mom”, her approximation for “Courtney” but when she got to Alyssa she said “baby”. Whenever you ask her what Alyssa’s name is she says “baby”. Alyssa said to me during this moment, “mom she can’t say my name. Why can’t she? I don’t want her to call me baby.” I explained to her that her name is difficult for her to say. Her response was that she wishes she could say her name. I immediately sent a message to two of her therapists saying that I wanted it a goal to get Courtney to say an approximation of “Alyssa”. Alyssa will likely be Courtney’s caregiver someday and if she wishes her sister could call her by name, then gosh darn it, that will be our top goal.

Courtney loves pictures and loves to label things in pictures. She is doing this verbally more and more. So Courtney’s speech therapist recommended modeling “Alyssa’s “ name as much as possible especially when looking at pictures and yo see if Courtney eventually comes up with an approximation. It worked! She has come up with an approximation for Alyssa! She is saying /didi/ or sometimes /idi/.

Alyssa is thrilled but you can tell she is still trying to understand why it doesn’t fully sound like her name. What I was most excited about was bringing Alyssa’s wishes into deciding what Courtney needed to work on.

After every extended break I talk about how my family thrives on routine and we at our best when we are all at school. The past two days have proven how true that is.

Alyssa had a very tough winter break with frequent panic attacks. Thursday she went back to school and after 2 days I can already see her anxiety coming down some. She seems more relaxed. We aren’t walking on as many eggshells in our house:

Going back to school was not an overnight fix but it got us to the point where Alyssa could feel some relief. Even if it’s just a little. Though the past few days have been better I’m not going to stop making sure she gets the support she needs! So proud of my little rockstar!

Goodbye, winter break. That’s a wrap. Once again I’m ready to go back. I wish I could look back at the two weeks with nothing but smiles but the struggles of the two weeks stand out too much. I want to recall all the fun things we did but all I can remember is with each fun thing, we had to fight through a lot of fears. I want to say it was a great break , but anxiety took over and anxiety won.

Watching my little 6 year old struggle with panic attacks that would leave her body shaking uncontrollably was beyond heartbreaking. Watching her struggle to overcome a sudden fear that was so strong she didn’t want to do some of her favorite things had me in tears over and over again. The panic attacks became so frequent that instead of celebrating her overcoming one, I anticipated the next one. Watching her hurt sucked. Anxiety won.

Anxiety may have outshone Winter break but we will not let anxiety continue to paralyze Alyssa. first goal of 2022 is helping Alyssa through this. But until then, good bye winter break!