Disney world with two kids 5 and under at Christmas time? Are you nuts? Wait, one has autism? Yep, you are truly nuts! Pretty sure most people have wanted to say that me once I started mentioning our plans. And, there have moments so far that I actually think those who think that are right. Moments where I watch Courtney get overstimulated to the point of almost breaking skin while biting herself (picture captured of this moment). Moments where I actually found myself thinking let’s just go home as I drove in circles at the hotel parking lot because the hotel room is just too different for her. Amazing.y enough, Alyssa puking as we left for the airport was not one of these moments!

Those who have never been to Disney or may not know about the true magic that happens there. You may hear about it and think…magic? Whatever. It’s an overpriced theme park that steals your money. People talk about how it’s like pixie dust gets sprinkled over you while at Disney. They say it because it’s true.

The moment was so clear of for us when that pixie dust was sprinkled. Goofy had visited our table at a moment that Courtney was so overstimulated. Because of that he moved on to the next table. Other characters stopped by. She wasn’t too keen on them either. Alyssa was of course cautiously soaking in all the fun as the characters visited. Courtney finally calmed down and are meal was over. We can tell Goofy was making his rounds again so we decided to wait. We are so glad we did.

Maybe if we got a special magnifying glass we can see the pixie dust in the pictures with Goofy. Maybe the dust was on his nose. As joe was snapping pictures trying not to miss a second of the magic, we looked at each other and you can tell we were both holding back the happy tears. Both of their smiles and giggles as that silly dog interacted with them was priceless. Will they remember that moment? I’m not sure. But joe and I will.

Disney is a tough place for Courtney. There were more moments where I asked if we should ever do this again. The thing is, Courtney has a sister who should get to experience Disney. And now that I’ve seen this magic a few times, if we are patient, the pixie dust will scatter down on Courtney and she too will be able to relax enough to enjoy it.

Best Christmas Ever!

We venture out to dinner most Saturday’s with Joe’s parents. We go to the same restaurant every time. Going out to eat with kids isn’t easy as all parents know. Add Autism to that mix and it makes it even harder. But we still do it. (Some day I’ll do a post about the amazing waiter that helps make these dinners successful for Courtney but that’s for another day.)

Going out to dinner takes planning. Courtney is such a picky eater that we have to bring food for her including her milk. A while back, her feeding therapist and I were talking about food items I wanted to work on with Courtney. As we brainstormed food items, I mentioned how it would be awesome to go out to dinner as a family without having to bring her dinner with.

Tonight it happened. We brought her food like always. Through the past couple years, we have found a few items that she likes there so we we have had to bring less of her food. Usually at some point during the dinner she decides she doesn’t want the French fries or roll and requests an item we brought. It didn’t hit me until on my way home as I was sharing with her feeding therapist via text about how she tried sherbet that Courtney did not need any of the food I packed.

We are no where close to being able to go to a restaurant without her food but I’ve become ok with that. We are starting to plan how we will pack all her food for our big trip coming up. It does not matter how kid friendly a restaurant is when you are brand specific on your food items. This is autism and I wouldn’t trade it for the world.

A year and a half ago (Spring of 2018), Joe and I sat in Courtney’s placement meeting and shared that we disagreed with their placement for her. They decided to have her spend half her day in a blended setting. I remember sharing with them that Courtney spends a lot of time with her cousins who are similar age and barely acknowledges their presence let alone interact with them. The principal replied, “oh but that will change after next year”.

Here we are, a year and a half later and I sit and watch Alyssa playing with her cousins while Courtney climbs on the piano, dumps cans of pop, chew on a dirty sponge and lick every toy in sight. As much as I had hoped that day the principal was going to be right, her tone and certainly got to me. Maybe because I’m a special educator myself and I know it’s not that easy. I wanted to believe that Courtney would become more social after being part of a blended class.

The girls and I spend every Thursday night at my parent’s house where my sister and her family also live. Alyssa and her two cousins were dancing to some video on tv. Courtney was wondering around and stopped by them. She was fascinated by the music and what was on tv. I know the tv is what is what she was gravitating towards and not her sister and cousins, but I took a moment to enjoy seeing her “with” them. For a moment she looked like she was joining in. For a moment, the four of them were “playing” together.

There was another beautiful moment last night too. Not sure why and the why doesn’t matter, but Courtney was very cuddly with my sister, her godmother. And it wasn’t just a one time thing. All evening she kept seeking my sister out. Courtney can get cuddly with adults if she’s in the right mood and if you are giving her squeezes and tickles. What made my night though was watching how it lit up my sister’s face.

As Alyssa bonds more and more with her cousins, it becomes harder to watch Courtney not have that bond. It becomes harder to see her on her own. It becomes harder to see how disconnected she can be. But I have to remember to take a step back and celebrate the little steps we’ve made.

With all that Courtney has been going through these past couple months, I’ve been asking myself a lot if she’s in too much therapy. This week it’s been on my mind even more because one of her private therapists recommended an additional hour a week if interested.

I decided to seek the advice of Courtney’s teacher and one of her therapists from school. There response was very thoughtful and helpful and pretty much what my gut was telling me. But something in the email got me emotional. I’m well aware of how many hours Courtney is in school and how many hours of therapy she has but her therapist put the total number of hours in her email response and for some reason it was hard to swallow. Between school and outside therapies, Courtney receives 47 hours of intervention. 47 hours!!! Most work weeks are 40 hours! Heck, most work weeks are just 5 days and she has something 7 days a week. What am I doing to my little girl?

Mother’s guilt hit me and hit me like a ton of bricks. It hit me so hard that I couldn’t even get the words out of my mouth without crying when asking my close friend at work, “am I harming Courtney”?

Of course I realize now that was an irrational question. Of course I’m not harming her. Huge thanks to my friend and co-worker who talked me off that ledge!!! Though I now ask, if I have it all prioritized for what is best for Courtney and my family.

Up until this point I had the mindset of get her all the help she needs. The more help the better. Courtney could benefit from intense ABA therapy. Sure, sign her up. Courtney could benefit from speech and feeding therapy. Sure, sign her up for both. The list goes on until suddenly your family’s life revolves around therapies.

Courtney’s therapist said something else the both got to me yet made me think. She said, “more isn’t always better”. Like you can say with most things in life, it’s not about the quantity of therapy but the quality of therapy. And not necessarily the quality of the therapy itself but is she getting anything out of it if she’s tired and stressed?

Since Courtney does not have the means to tell me if her schedule is too much, it’s left up to me to decide. How much can she handle? What are the therapies she needs the most? How much of each of these therapies would she benefit from? What can she handle and just as importantly, what amount is healthy for our family.

Did I really think we would never see these self inflicted bruises again? No. Did I think we would never relive the episodes of her screaming in pain? No. This is autism, this is our life. Though I was hopeful that it would be a while before we saw these moments again. I was hopeful we figured out the issue and if we stayed on top of it, we wouldn’t have to worry about these screaming in pain episodes for a while.

So on Wednesday when my cell phone rang during my lunch break and caller id said “nurse”, I couldn’t help but think, here we go again. I actually found myself wanting the nurse to say that Courtney was throwing up with the flu because I know how to help her through that. But that wasn’t what was going on. She was calling me because Courtney had been crying inconsolably for an hour, grabbing herself between the legs and biting herself. My heart sank, here we go again.

Her teacher and I exchanged emails that night that included her telling me not to panic, it just may just have been an off day. I try to let her words comfort me but my gut wasn’t feeling it. See, the night before she had an episode but I blamed it on a change in routine even though a change in routine typically doesn’t cause such an intense meltdown.

It wasn’t just an off day. The next night she had a pretty severe meltdown at bedtime that lead to a car ride where she finally cried herself to sleep. Then my phone rang again on Friday and again I saw it was the nurse. I could hear Courtney crying inconsolably in the background this time.

What is going on?! Her bowel movements are regular, can it really still be bowel spasms? In both cases this week when she was sent home, Courtney was happy as can be the rest of the day. Is this becoming an escape behavior?

Today we took the girls to a breakfast with Santa. Courtney was very whiny through most of the breakfast. Some tears and bit herself a couple times. It hit me, this confirms it, the episodes are definitely not her trying to get out of something. There’s a difference between the meltdowns. I knew it wasn’t possible that she would scream so hard with a stiff body and toes curling just to get out of something. That is not Courtney.

So back to talking to the doctors.

I have always had this dream to open up my own center for children with Autism. I’ve had this dream for many years, even way before having my own child with Autism. Through the years, what this center would look like has changed and became more just a dream and never anything I would actually do. Again, this was before I had Courtney.

Over the past few years the idea has started creeping up again to the point where I now think about it often. It’s gone from a dream to how can I make this happen. Now slow down a second…to my co-workers, this isn’t my resignation (not even close). To my husband, I realize we have hours, upon hours, upon hours of discussions on this that we need to have. This is more me saying that I want this to happen.

This still is at the “dream” stage but since it seems to be on my mind a lot, I’ve decided I want to start looking at what I would want in a center or even organization, what it would look like, and what would it take to make this happen. It’s time for me to see if my dream can become a reality at some point.

Courtney has taught me so much over these few years. As a parent, I am learning that there are resources that are needed for children on the spectrum. What I’ve learned even more is that there are resources is parents need. One thing that has helped me as a parent is finding others in a similar journey and becoming friends. I say all the time though that it’s parents of children with special needs who need that bonding time with others like them but it’s these parents that have the least amount of time to make that work. Recently this has become where I would start with a center/organization. So much out there is geared towards the child. How can I help the parents? Happy mom means happy family, right?

Again, this is just me stating it’s time for me to stop thinking this has a dream but more as a goal. This is me continuing to fight for not only Courtney but other families on a similar journey.

As a teacher of children with Autism, I have always worked hard and teaching my students to sit during snack and lunch time and to sit through the entire meal. So often, parents have shared their frustrations with meal times and how their chid is a grazer. I’ll admit, during my beginning years where I was not a parent myself, there was some quiet judging. How do you not make your child sit at the table to eat? Years under my belt teaching little ones with autism quickly showed me its easier said than done.

So when I became a parent of a child with autism, I decided it was important to me that she not be a grazer and sit at the table during meal times. Ha! That’s funny! Wow, have I failed with that goal! My goal now during meal time is her to eat. Just eat. And preferably more than a fruit pouch, milk, animal crackers and a slim Jim. Oh…and I gave up them sitting at the table a long time ago. I noticed early on that Courtney prefers sitting high up. We could get her to sit longer when on a stool at the counter than we could in a chair at the table. So, we eat at the counter.

Since them both eating at the same time at the counter rarely happens and when it does it’s quick, I pretty much always snap a picture when it does. Here’s the best part…not only are they sitting at the counter, eating a meal at the same time, they are actually eating the same meal!!!!

There was a downside to this beautiful moment. They weren’t actually served the same meal. Alyssa was eating pizza and Courtney was eating a hot dog. Courtney started refusing pizza several months ago. We recently went completely dairy free for her. Tonight she decided she wanted pizza and stole a piece off of Alyssa’s plate. I quickly ripped the cheese off the piece And then gave her some more pizza without cheese. When the meal was over, I realized the pre-made crust had dairy in it. I was hard on myself for a few minutes about not checking the package. Then I realized, if I had, the awesome moment of them enjoying a meal together probably wouldn’t have happened. Now time to find a pizza crust safe for both my girls.

I want to start off by saying a huge thanks for all the support we have gotten through this whole long ordeal with our sweet Courtney. The thoughts and prayers were very comforting especially these last couple days. I know I have written about it a few times now, but words can’t even come close to explaining the toll the past 2 months have taken on our family and all who work with Courtney. It is such a relief to know we are on our way to recovery.

Two days ago, Courtney had a big day at Lurie Children’s Hospital. She had both X-Rays and Lab word done to diagnose the lesion found on her femur and she had an appointment with a urologist to see if we can get a better grasp on what has been going on. Courtney was beyond amazing during our adventure. She loved the train ride downtown, tolerated the craziness at the train station and tolerated the long wait at the office. I couldn’t have asked her to behave any better. Of course she struggled with the blood word and X-Ray but what little child wouldn’t. Thanks to my sister and great lab/X-Ray technicians, she got through it.

Those who follow me on Facebook know that we found out, the UTI’s that she has been having were actually not UTI’s. What? Not UTI’s? I’m actually not surprised by this because each time they diagnosed her with one, they explained how the test showed it really wasn’t one but since there was some bacteria and she was showing symptoms they treated it as one. So why has she been in so much pain? Courtney has chronic constipation issues. Always has and probably always will. Because she is so backed up she is having what is called bowel spasms. Basically…in laymen’s terms her colon is freaking out because it is so backed up. Cure? Miralax and lots of it. AND…it’s already working. Since Sunday afternoon, she has been a completely different child. Our happy little girl is back.

As I mentioned in a previous post, a lesion was found on Courtney’s femur. No matter how many times you are told it is probably nothing, hearing that your child has something growing on her is beyond nerve wrecking so needless to say I was nervous about these results. Thankfully, at this time it is nothing to be concerned about. It does require some follow up just to make sure it doesn’t grow, but rest assure, she is fine.

So now comes the time to recover. Not only for her but for us as a family. Even little Alyssa got use to us saying “Courtney is sick”, or “I have to take Courtney to the doctor”. This has been our life for 2 months. It is never fun seeing your child sick or in pain let along to have to watch them suffer for longer than your typical illness period. During this time we have seen regression across the board so now we have to help her get back to where she was before this started. It won’t be a quick bounce back to the way things were but seeing her happy again will make it easier to start treading forward. I will now probably stress more about her regularity than I ever have before in fear that we will see the behaviors again.

Again, I can’t thank everyone enough for their love and support during this time. A huge thank you to my sister who joined us for the adventure down town, my team at school who kept things going while I was on my short leave, all those who helped keep Courtney comfortable during this time and not losing their patience as she got very aggressive, Her caregivers who had to put up with a lot and Joe and Alyssa for putting up with my insanity as my stress levels were through the roof!

I am not one to ask for thoughts and prayers. I don’t like to draw attention to myself that way so at first I wasn’t going to share the latest obstacle. But up to this point, I have gotten good at being an open book with our journey so why not continue by asking Team Courtney for those thoughts and prayers,

As I have shared, Courtney has been in a real rough patch for over 2 months now. The cause being reoccurring UTI’s or at least we think. I won’t go into the details of how many urine tests she had with mixed results which is why we aren’t even for sure if she has had true urine infections. I’ve been asked several times by doctors throughout this whole ordeal if she is telling us it burns when peeing. No, she is non-verbal, I am purely basing it on her non-verbal behaviors. And let me tell you, her non-verbal behaviors have been frequent and very telling. She is in pain!

The one thing I noticed each time there was an increase in behaviors is it happened a couple of days after she had issues with constipation, which is a chronic problem for her. Those who struggle with constipation are more prone to UTI’s. So we went back to the  GI doctor. Sure enough, X-Rays showed she is backed up. I’ll spare you any other details regarding that! But something else was found on the X-Rays. They found a lesion on Courtney’s left leg. It was the nurse from the GI doctor who called and all she told us was she was going to send the scans to her primary doctor who can decided if we need to see an orthopedic.

I hung up the phone and immediately googled lesion on leg. I needed to know exactly what they meant about that. As Doctor Google does a good job doing, the internet freaked me out. Fortunately my family has a connection to a pediatric orthopedic. I quickly took advantage of that connection. She calmed my nerves but did say a full orthopedic work up was needed.

So Tuesday we have a pretty big appointment. Courtney and I will be headed to Lurie Children’s Hospital for an appointment with a urologist and will also be doing some additional scans and lab work to diagnose the lesion. So Team Courtney…send those thoughts and prayers.

Of course I’m scared but thankful for our connection who has fielded a few freakout messages. Her responses are keeping me from thinking only the worse. It is also helpful to already know she will be in GREAT hands. I am also hopeful that maybe we are approaching the answer to all her discomfort. Tonight I saw a glimpse of things starting to improve. I’m pretty sure recovery won’t be quick though. This poor little girl has been traumatized by so much pain with no way functional way to communicate it. Even during the days where we knew there wasn’t an active infection, you can see the panic in her eyes any time she needed to pee. But as her mom, it is my job to fight for her and I am ready to fight her fight until we see her happy giggle more consistantly again.

Monday: ABA 1:45-3:45; speech 5:45-6:30

Tuesday: ABA 1:45-3:45; physical therapy 4:00-5:00; Feeding therapy 5:00 pm-6:00 pm

Wednesday: ABA 1:45-3:45, 5:00 pm-7:00 pm

Thursday: ABA 1:45-3:45

Friday: ABA 1:45-3:45, 5:00-7:00

Saturday: ABA 9:00-12:00; Horse Therapy 2:20-3:30

Sunday: Occupational Therapy 4:00-5:00

There you go. Courtney’s schedule (that goes not include school 8:30-1:30). Every minute of every day is scheduled. I had a meeting with one of my student’s parents recently where we told her that her child has autism. She asked me if she should be putting her son in any outside therapies. I’m very transparent with my student’s parents on my experience as a special needs mom. When she asked this question, I made sure I answered honestly and from both roles that I play. The teacher side told her that outside therapies will only help. The mom side told her that outside therapies have done so much for my daughter but be prepared that it adds a lot of stress. It is not easy keeping up with the on the go schedule that private therapies require. I told her at this young of age it’s probably harder on the parents/caregivers than the child. At this young of age therapy is very play based so the child is usually having a lot of fun. I felt like I had to share this. This part of being a special needs family is exhausting.

This Saturday we didn’t have horse therapy. Horse Therapy is an hour away so it gave us a HUGE chunk of downtime that we are not use to having. I was sitting on the couch cuddling with Courtney who was struggling while Alyssa napped. I asked myself at this moment why it felt so strange to do this. That’s because we typically don’t have downtime to do nothing.

So why don’t we back off on the therapy if it’s that exhausting? If it weren’t for these therapies, I’m pretty certain Courtney wouldn’t be where she is today. Thanks to ABA, I feel like we can be outside with Courtney without her running off on us. Thanks to speech therapy, Courtney is able to communicate her wants and needs. Thanks to occupational therapy, we have strategies to help keep Courtney regulated. Thanks to physical therapy, Courtney’s core strength has increased. Thanks to feeding therapy, Courtney is slowly but surely becoming more willing to try new foods. Thanks to horse Therapy, there is an activity my family can do as a family. This is just a dent of what they have done for us.

We don’t have the crazy sports schedule. We don’t have the car sticker that says soccer mom. Though I do think there should be a car sticker that says therapy mom. This is our life. It is exhausting but we are beyond grateful.