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.

A dear friend of mine who has a child with special needs referred to me as a mighty warrior mom in a text she sent me. She sent this message to me in response to an update I sent her on Courtney. This message didn’t come long after I spoke with my bosses about taking some time off of work. In a moment of self pity I asked myself if I was worthy of being referred to as mighty warrior mom if I had to emotionally admit defeat and take time from work.

I didn’t let the self pity last long. I reminded myself of the oxygen mask analogy. When on a plane, if a flight attendant sees a parent with a child during their safety presentation, they will go up to the parent and remind them that in an emergency to put on their own oxygen mask first then the child’s oxygen mask. But how do you put that oxygen mask on you first when you have little children with so many needs?

I have spent the past two months watching my little girl who can not express how she feels suffer with reoccurring pain. It has been so heartbreaking to watch. I’ve been making phone call after phone call to doctors. I’ve written so many notes and emails to her teachers/therapists that they are probably considering hiring a secretary just to deal with me. During part of this, Alyssa was also having medical issues so add more doctor visits.

I have continued to go to work attempting to teach little kiddos with just as severe needs as Courtney. While working, fielding phone calls, taking any moment I could to make calls to drs when needed, emailing her team and constantly wondering how she was doing. I have felt my performance as a teacher slipping drastically and blamed it on motivation. In all actuality, it has nothing to do with that. Here I thought I was this super hero helping everyone else first but in the end I was not giving them my best because somewhere in these past two months my oxygen mask fell off and I didn’t take the time to put it back on. The analogy couldn’t be more true.

So next week I’m taking the time to put on the oxygen mask. I feel horrible stepping away from my students but in the end, it will benefit them. It will also benefit my family. I’m not staying home to just put my feet up. Unfortunately I think that’s impossible in this stage of life but now that work is off my plate for one week I can fully concentrate on my family and working on figuring out what is going on with Courtney. Thanks to my amazing team at school and a wonderful sub, my students will be in good hands. I can’t thank them all enough!

So let this be a lesson parents…have you taken time to remember to put your oxygen mask on?

Every night I rock Alyssa a little as a part of her bed time routine. She cuddles up in my arms as I rock. I hold her tight as this is our special few minutes together. Guaranteed no interruptions by her big sister who requires so much of my time most days. I hold her so tight in hopes that she knows just how much I love her. I put her in her bed and then rub her back for 2 minutes. After 2 minutes, I tuck her in, say, “good night, I love you,” and blow her kisses as I walk out the door. She blows kisses right back. The past few nights she now says I love you back. She has said it many times before but the past few nights it has just rolled off her tongue and has become a part of our routine.

Every mom loves hearing those 3 words from their child. But there are mom’s out there who say those 3 words to their children every day and never hear it back. I’ve never heard the return “I love you” from Courtney. I know, I know, she tells me she loves me in so many other ways. My favorite line as an autism mom is, “Love Needs No Words”. Courtney tells me I love you at night when I’m cuddling next to her and she scoots a little closer to me. She tells me I love you in her smiles, in her laughter and even in her tears. As true as the statement “love needs no words” is, it still means so much to hear those 3 words back from your child. It’s a little confirmation that amongst all the chaos of a day, amongst those moments where you may have been short fused with your child that they still trust and love you.

Through these last two months of reoccurring UTI’s for my sweet Courtney, I feel doctors have questioned how I truly know it’s a UTI when she’s not telling me it burns to pee. Parents of children who can’t talk have to learn to rely so much on this non-verbal cues. We learn to tune in to those cues. Trust me doctor, I know what she is telling me. Mothers truly know best.

These past two months I’ve wondered if I’m doing everything I possibly can to help her, I’ve worried about the attention it has taken from Alyssa, and more so than ever, I’ve yearned for Courtney to verbally talk to me. I wish she could tell me how she feels and what is hurting. So at night, when Alyssa says “I love you”, I give a sigh of relief. I must be doing something right.

I love you to the moon and back, Courtney and Alyssa!

I kinda have this weird mindset with the medical profession right now and it’s not a positive one. I don’t want to have this mindset. For one, it’s such an important group of people. Honestly, what would we do without them? Second, if it weren’t for the amazing knowledge and expertise, I wouldn’t be alive today. So, please, to all of my readers who are in the medical profession, I really do have the utmost respect for you. But, I am running into a lot of obstacles that are leading me to be very frustrated when it comes to doctors for Courtney.

At first sight, Courtney is your typical 5 year old. Which means when a doctor who doesn’t know her first comes in to the room they start talking to her like she is a typical 5 year old. Completely expected so I always let this exchange (or lack of) happen. I fully expect when it’s our first time with a practice to have to give the full explanation of Courtney. But after a first appointment in a group I guess I kinda expect it would be easily found in her chart that she does have autism, she is non verbal and she is severely effected by this. Am I way off on this? And if I am, so be it, now I know and I will be ready to give a “Courtney explanation” the first couple times we meet with a doctor. So here’s a question. What can parents like me do to help the medical profession be better equipped to work with kiddos like Courtney (and to work with their crazy parents…lol).

Courtney’s ultrasound went well. No blockage or kidney stones. As much as I relieved there wasn’t a bigger problem, I was very frustrated after the appointment. First, it left us without answers. Second, I felt the urologist was not helpful. Our first appointment at this office was actually with the Physician’s Assistant who I that was AWESOME. The ultrasound was with the actual dr. He seemed unaware of her autism and the background of her issue. Did the ultrasound, saw no issues and sent us on our way with suggestions like, “encourage her to empty her bladder and to pee more often”and “have her eat more fiber rich food to help with constipation”. Oh but doctor, if only it was that easy!

I will add it was a long wait and Courtney was beyond done (and so was I) so I did not take the time to ask about some of the more helpful suggestions the PA brought up at our first appointment. Shame on me. But I’m also perplexed why I have to completely recap past visits with others in the practice. Isn’t this in the charts? Again, I don’t want to be frustrated with this profession. Help me understand why this isn’t as easy as reading the charts?

Positive note…Courtney’s last tough day was Friday. We have now had 4 great days in a row. Teachers, therapists and caregivers have reported that Courtney seems herself again. I’m hoping the last round of antibiotics finally got rid of any bacteria buildup. We are still noticing some fear when peeing but she is peeing more regularly again. I am hoping this is behind us now but I can tell you, it is not forgotten. The past 6 weeks have been hell. It will be hard to forget seeing how much pain she was in, hard to forget the bruises it left on her and hard to forget how completely helpless I felt. I am hopeful the preventative antibiotic will keep this from happening again anytime soon. I thank her (and my) amazing support team for all their love and support during this time.