April 2nd is officially World Autism Awareness and Acceptance Day. I find it interesting that it landed on a day where I am feeling truly defeated by autism. A day where I question how much I can celebrate the beauty of autism. A day where I just want to crawl into bed and hide from all that comes with having a child with autism. How do I honor this day when I woke up by being attacked by my 8 yo daughter with autism for who knows what reason? How do I honor this day when there are severe bruising on my daughter’s arm from her biting herself? How do I honor this day when there is a little sister who feels she has to play the role of big sister at the age of 6? How do I honor this day when this little sister has her own sensory issues that make it so she literally can’t handle living in the same house as her sister with autism because of her noises? How do I honor this day when this little sister sometimes is deathly afraid to be next to her big sister? How do I honor this day of awareness and acceptance?

But maybe that is exactly why we need such a day. Sure, by now everyone has heard of autism. When the relevance is 1 of 44, there is no way you haven’t heard of it. 1 of 44! That statistic is INSANE! Do you really know autism thought? Do you really know how big of a spectrum it is? Do you really know the ups and downs a child with autism goes through in one day? Do you really understand how autism impacts a whole family? Do you know there is so much to be learn by those who have autism? You may be aware of autism but are you accepting of autism?

So let me ask you this in honor of this day and month. What do you not know yet about Autism? What would you like to know more about? How can I make you not only be aware of autism but accepting of autism?

In the mean time…know that though today was a hard day, I will still end this day loving my family to pieces and not trading any of it for the world.

#letsautismtogether; #fcvblogsquad; #autismawareness; #autismacceptance;

April is autism awareness and acceptance month. Through out this month I will share different parts of this journey. To kick off the month, it’s only right for me to start from the beginning.

For any new followers, my husband and I have two beautiful girls. Courtney is 8 and has autism. Alyssa is 6 and has anxiety, sensory issues and severe food allergies. Unlike many, autism was a part of my life way before my daughter was diagnosed with it. I started working with children with autism when I was in college. A few of these kiddos is why I decided to get a masters on special education. I became determined to learn everything I could about autism.

After 10 years of teaching preschoolers with autism, my oldest daughter (at that point 2 years old) was diagnosed with autism. I remember the beginning of the school year after she was diagnosed, standing in the front of a room full of parents who were about to entrust me with their children. For the first time in my teaching career I could completely relate to how they were feeling. I debated on if I wanted to share my story but as I looked at these parents, I knew I needed to tell them that I get it. I needed to tell them that I too was about to leave my daughter who couldn’t talk, who had no way to express her basic wants and needs in the hands of a complete stranger. I needed to tell them that I’m feeling all the same emotions.

Here i am over 5 years later. Still teaching preschoolers with autism while raising my beautiful girls. Autism has taken us on quite the journey. It’s been a rollercoaster for sure. There have been good days and bad days. There has been laughter and tears. It’s a little wild at times.

Come join me for the month as I share more about this crazy journey. #letsautismtogether.

I just had a wave emotions as I watched my baby get herself out of the car, grab her book bag, clothes the car door and run to her kindergarten line. She’s not a baby anymore. They grow up so fast. And then it hit me.,,I almost didn’t get to see this, I almost missed every milestone. I almost missed the growing up too fast. I almost didn’t make it past an hour of her life.

Slow down, baby girl, but so glad I’m getting to see every moment!

Thanks to a few different viruses, anxiety and starting medication, Alyssa has actually lost a few pounds in the last 5 months. We are keeping an eye on it. Now that she is more regulated, her feeding therapist/OT decides it’s time to really focus on adding some new foods, specifically protein, Her feeding therapist found a great meatball recipe that also sneaks a few different vegetables into the recipe. (Shhhh….don’t tell her!) After 2 tries she is giving it a thumbs up!

Courtney’s feeding therapist has decided we are going to work on the same food item. Haven’t tried yet though. There are very few items that both girls like. It would be awesome if we could add meatballs to that short list.

This week starts course number 4 out of 10 towards becoming a Board Certified Behavior Analyst (BCBA). just as I did for the first 3 courses, I’m starting the course off doubting myself. Doubting if I can really complete this. Course after course I see all these young women introduce themselves in our portal, very few if any share that they have children of their own let alone with special needs. I find myself feeling out of place. What will I even do once I am one in a year or two? Do I want to switch jobs at the age of 47? Who will want to hire a 47 year old BCBA? Yes, all of this goes through my head at the beginning of each class.

Today my brother shared the quote in the picture. “Don’t give up on your dreams, if cauliflower can be pizza and zucchini can be noodles then you too can be anything you want.”

Boy did that resonate with me, it’s so true. Why can’t I work towards something I’ve always wanted to do? Who says there is an age limit to doing something you’ve always wanted to do? Why do I doubt myself so much?

A huge shout out to my brother who shared the quote without even knowing I needed to hear it. I won’t give up on my dreams. I too can be anything I want.

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.