Painful…

There are parts of autism that I have learned to be ok with. In some cases, I have even learned to embrace. I have made Autism our normal. For example, Courtney’s talker. Do I get frustrated that my daughter is non-verbal? Yes, but that’s who she is and we have made it our normal. We have found ways for her to communicate and we make it work. I embrace her endless energy. Climbing furniture has also become our normal, I even have made her middle of the night wake ups my normal.

There is one behavior I struggle accepting. One that I don’t want to make our normal. It’s her aggressive behaviors. Two years ago just around this time, Joe and I met with the school psychologist to start working on what is called a Function of Behavior Assessment (FAB) and a Behavior Intervention Plan (BIP) because she had started biting and scratching at school. Not frequent but frequent enough that we wanted to find the function of the behavior and nip it in the butt. At that point we were hoping it was a short phase as she adjusted to being in school.

Two years later this short phase is still going on. Fortunately, when all is well in her world it doesn’t happen that frequently but often enough that data is kept on the behavior and all who work with her are on guard. Often enough that I worry daily about it. Truth be told, isn’t any aggressive behavior too often? Who wants to see their child hurt someone or them self? When the aggressive behaviors started two years ago it was towards others. Now it’s to herself.

As I’ve talked about a lot recently, she has been really struggling as of lately. It appears she’s in some sort of pain but because she is unable to verbalize this pain, she is expressing it through biting, pinching and scratching herself and others. Self injurious behaviors that are so intense and frequent that they leave bruises. Just as some bruises disappear, more appear. Bruises that remind me during the times of day that she is her happy self just how much she is struggling. My heart breaks every time I see the bruises.

This afternoon she had a pretty tough meltdown at my parent’s house. I was able to see the ache in their eyes as they watched me try to keep their little grand baby from hurting herself. A look I will never forget. Last week I came home from her parent/teacher conferences to her other grandpa holding her to keep her from biting herself. Again, another moment I will never forget. These moments were painful to experience and watch as her mom.

I know this is a rough patch and that it isn’t our normal. But what is our normal is always wondering when we will hit an awful rough patch like this again. It is our normal to get a monthly report from her home therapy the average aggressive behaviors that have happened per session. It is our normal to get a sheet with her progress report every trimester that shows the average aggressive behaviors per day. It has become normal for me to subconsciously flinch when she’s crying and she comes close to one of my body parts. It is a normal that I will always struggle with. But it is also Courtney’s and my normal to end every night laying in my bed until she falls asleep. I watch her on her iPad as her body calms after a long day. It’s a peacefulness I love to watch. It helps ease the tough moments from the day.

Can I handle this?

It is said that God only gives you what you can handle. I struggle with that thought process. There are times where I want to ask what lead Him to think I can handle this all. Glad He has so much faith in me, but man, there are days I question if I can really handle it all.

The past 4 weeks have been hard. We have watched Courtney struggle with we think is pain but unsure because of her inability to tell us. We’ve watched her express this pain through biting, scratching and pinching. The bruises on her arms and knees from her biting herself were hard to look at. Words can’t describe how helpless I felt during these episodes especially when they happened in the middle of the night. These past 4 weeks I’ve never hated autism so much and I felt guilty for feeling that way. Autism is our “normal” and for the most part, I’m okay with that. But when you are watching your child suffer with the inability to tell you what is hurting and how you can help, Autism can go to hell. Can I really handle this?

Autism isn’t the only obstacle in our life. There is also Alyssa’s food allergies. Joe said the other night, “I am frustrated with whatever is going on with Courtney, but I am more concerned about Alyssa because that is life or death.” He couldn’t be more right. You don’t truly understand how a food allergy can effect your every day life until you are actually effected by it personally. It involves so much more than making sure your child isn’t eating something with their allergen in it. In seven days, Alyssa had 3 allergic reactions. Minor reactions, but none the less, they were reactions. To what you ask? I have no clue. That is what makes having food allergies hard. No, Alyssa did not eat anything in these situations that she is allergic to. BUT…did she touch something that had tree nut or egg residue on it. For some people, that is all it takes. Think about how many things you touch during the day that someone else has also touched. That is how many times a day someone with food allergies has to worry about having an allergic reaction. That is how many times a day a mom of a child with food allergies worry about their little child having an allergic reaction. Can I really handle this?

The past 4 weeks have left me feeling defeated. I felt like the world was crashing down on me with each phone call from caregivers, teachers and therapists. The past 4 weeks have left me questioning if I can truly handle it. Then today I got the most beautiful pictures from our nanny. They were pictures of the girls playing at the park. Pictures of them smiling and having a ball. Something about Courtney in these pictures looked different. She looked pain free! Maybe things are calming down finally. Maybe we are returning back to our “normal”. Maybe, just maybe, I can handle this.

VENTING…

Three weeks ago I was headed to Michigan with Joe and I got a phone call from Courtney’s school saying she seemed uncomfortable as if maybe she had a UTI. Three weeks ago I cried via texts messages with our nanny as Courtney was catheterized I order to get a urine sample. The past 3 weeks she has even to the dr 3 times, I’ve talked to doctors/nurses so many times that I’m pretty sure they know my phone number by heart. We’ve gotten positive then negative then positive then negative urine tests. She completed 10 days of an antibiotic. In the past 3 weeks I’ve seen my daughter cry in pain and bite herself to the point where she has bruises that look like she’s been abused. I’ve received texts and emails from school and caregivers who have seen the same behaviors. I’ve left work twice and have taken other days off. Yet I sit here with no answers.

What have I learned though?

I’ve learned that being her voice is my most difficult job title of all but learning to be her voice has made me so much stronger.

But the biggest thing I’ve learned through this whole ordeal is the importance of building a network you trust. Courtney requires a network of specialists. Specialists from therapists like speech, feeding to doctors like dentists, gastrointestinal doctors, developmental pediatricians and regular pediatricians. Finding these specialists for a child with special needs is so much more than googling pediatricians in your area.

After the last 3 weeks I have learned that I have not found the right pediatrician for Courtney. This whole ordeal has been beyond frustrating. I can’t even begin to explain what it’s like to watch your daughter experience pain and have no way to express that pain except by inflicting pain on herself and others. Today was the icing on the cake. After spending 90 minutes at the dr trying to get Courtney to pee with no success, it became evident the Dr knew nothing about her because she asked several times if Courtney was saying it burned when peeing. The doctor talked to her as if she was typical. Then we were sent home with a cup for her to pee in with no answers.

So here we are, 3 weeks later and still no idea why she has moments of pain. No idea how to help her and now On the search for a new doctor.

Ready, Set…GO!

Back in March when we first met Ms. Christine, she made sure to explain that she doesn’t force the children to get on the horse. I knew that was the gentleness Courtney was going to need for horse therapy to be successful. Several sessions later (a few including a lot of tears) I questioned if she would ever get on the horse. I loved spending the time together as a family and I was able to see Courtney’s comfort with Bumble growing so I kept trusting that the day would come.

As I have shared, that day came finally in June and since then, Saturday’s at Hands, Hooves and Hope Ranch have quickly become my family’s favorite time of the week. We’ve gone from wondering if we will get through the session without tears to will she ride Bumble again today to which girl will want to get on first. Courtney’s eagerness today was beautiful! I got her out of the car and she immediately left my side and quickly headed towards the stable. She greeted one of the volunteers with her giggles and was ready to start. It melted my heart after the tough two weeks we’ve had.

Horse therapy isn’t just about getting her comfortable with Bumble now. BOTH girls are working on getting Bumble to go and stop. Ms. Christine is teaching Courtney to either tap Bumble or to verbally say, “go”. Each session it takes less and less to get Courtney to say, “go”. I love hearing her use that sweet little voice of hers to communicate. We didn’t get it n video, but today she even told Bumble to stop!

I am so glad I let myself trust Ms. Christine that this comfort level would eventually for Courtney. Can’t imagine the joy we would have missed out on if I gave up months ago.https://videos.files.wordpress.com/a9mRx1Ji/img_1706-trim.mov

Horses…just what the dr ordered

I’ve been trying to find the words to describe the emotions I went through on Friday. I have worked with little kids with autism and other emotional disorders for over 15 years now. I have seen every behavior in the book, I’ve seen emotional break downs so severe from destroying a room, hurting others and hurting themselves. I’ve had to call parents to explain to them their child is being too unsafe to be at school.

Friday I was the parent. The phone call came in at 8:50 a.m. while I was at work. It was the nurse from Courtney’s school calling to say that Courtney was inconsolable, not being safe and seemed to be in pain, someone needed to pick her up. I told the nurse my father-in-law would be there shortly since I work an hour away. I didn’t bat an eye though, I knew I had to go home and get her to the doctor so we can find out why she’s been acting like she was in pain on and off this week. It was the next phone call that scared me the most. Courtney’s teacher called me back because she was worried about my daughter’s safety and the safety of others at home and was worried about sending her home with her grandpa. Once I reassured her teacher I was going to be there shortly they felt more comfortable sending her home.

I could no longer hold it together. I have spent the week watching my little girl express her pain and frustration through biting herself and now it’s gotten so severe that teachers are concerned about not only her safety but the safety of others.

I did finally find out during that horrible drive home where I let myself think of every possible thing that could be wrong with her that she did indeed have a UTI. I’m not going to get into the whole bull crap we went through up to this point regarding her UTI. Let’s just say I’ve lost trust in tests to determine if you have a UTI.

I was relieved to have an answer to all the behaviors this week but my heart was about to be torn apart some more. I got home to Courtney who was now calm but bruised worse than I can even imagine from her biting herself. The bruises brought me to tears. In all my years of working with little children with autism, I have never seen self inflicted marks this bad. On my own little girl.

The good news is, thanks to antibiotics, Motrin and Tylenol (and a lot of love from her mom) Courtney is doing much better today (Saturday) but it left me numb.

Now for the horses. I was so excited for horse therapy. I knew it was just what my family needed after such a tough week. Ms. Christine is amazing with the girls. She knows exactly how much she can push them and when they just need a ride to relax. She knew how much she could push Alyssa today and she knew Courtney just needed a peaceful time with Bumble. Seeing them so happy on Bumble brought a smile to my face. Then my smile got even bigger (not without some nerves first) when I successfully rode a new horse who is a little more energetic then the cool, calm and collective Capone. Missy, I think we can be quite the team some day!

Yep, time with the horses is just what the doctor ordered!

Hardest part?

I was asked recently what was the hardest part of Courtney’s autism. My friend and I were talking about the lack of connection in a lot of children with autism. She asked if that was the hardest part. I quickly answered yes. The more I think about it though, I think it changes based on the day.

We’ve hit a rough patch the past weekend a half. This week brought on many tears, biting, bruises and not much sleep. It was by far one of our hardest weeks in a long time. I haven’t figured out exactly she had such a tough week, but I think there were several factors. What was the hardest part of this week? Watching Courtney bite herself so hard and so often that she now has bruises on both wrists and both knees. (Side note…I wish Courtney could tell me why she is now choosing to bite her knees AND her toes?! Yep, her toes. Seriously, Courtney?!?! Why your toes?!?!?!)

Most 5 year olds have bumps and bruises. It’s the right of passage. It’s heart breaking to look at her bruises though knowing she did it to herself out of frustration. Moments of such intense frustration with no way to communicate except to bite herself. During these moments the only I can do is use a calming voice to remind her she’s ok and that I’m here to help. Then every time I see the bruises it reminds me of those moments and how helpless I felt.

So this week, it’s the biting that’s the hardest part of Courtney’s autism. It’s the not knowing why she’s frustrated, is she not feeling well, does something hurt, is she overwhelmed. It’s not knowing how to help her, it’s the hours upon hours of thinking in my head of ways to stop the behavior. It’s the wondering if someone will look at her wrists and question if someone is grabbing her too tight. It’s the pondering of why the darn toes! This week, the worst part of her autism has left me emotionally drained. But next week, it will probably be something different.

And just a little glimpse of her poor little arms and knees…

Turning 5…

Maybe I’m making it bigger than it is but I feel 5 years old is a big milestone for a child. It’s the transition out of the toddler stage. It’s the year a child is old enough to go to kindergarten. All those big milestones a little child is suppose to reach have been reached. 5 year olds are starting to make those friends that will become their best friends. They are starting to make those memories that they may actually recall when they are a grown adult.

Working in a preschool with children with special needs, we hear parents talk about us getting their child “caught up” by kindergarten because that is when it really matters. When Courtney was first diagnosed and we were signing up for preschool, joe was saying the same thing as some of these parents. “She’s just going to need a little bit of help and they will have her all ready to be in a regular kindergarten class.” I knew differently.

The big 5 for Courtney is on Wednesday. 5 years old! My little baby girl is 5 years old. But here’s the thing. She may be chronologically 5 years old but in every other sense she is not 5 and for some reason, this year more than others, it is hard to swallow.

Most moms get sentimental on their child’s birthday. Another year has gone by faster than you can imagine. Birthday posts of children usually contain the hashtag #growingtoofast or #slowdown. I agree with those hashtags but I also get emotional because a Birthday also reminds me how far behind she is and also makes me feel like the gap just grew some more. It reminds me what milestones she has not met. It reminds me how steep the mountain still is. Courtney has made so much progress the past few years and I am able to focus mostly on that. Though when it comes to a day where most moms get a little sentimental, having a child with significant needs adds some additional emotions to the day.

The ugly side…

As much as I’m an open book when it comes to being an Autism Mom, I’m sometimes hesitant to share the really bad parts. Whether it be a bad day of hers or even a day where I’m just not as emotionally strong. I’m hesitant for several reasons. The main reason is I like to focus on the good. Keeping a positive attitude is the key to living this crazy life. But I also worry that I may sound like I’m looking for people to feel sorry for me and that’s so far from why I share my journey. But if this blog is to truly reflect the journey then maybe it’s important to share the tough moments.

So here it is…

You know that grieving process people go through when they lose a loved one? You go through the same process when having a child with significant needs. Why? Because it’s natural to grieve the loss of what you hoped you would have. Every parent hopes for this perfectly healthy child. The child that you would watch grow through all the “normal” stages of life. When you find out your child will be on a different path because of special needs, that hope dies. Doesn’t mean these parents love their child any less but it still stings.

Like the grieving process when you lose a loved one, it’s different for everyone, the stages don’t go in any order and certain stages will hit you like a ton of bricks even years later.

I can’t pin point why, but I’ve had moments recently where I’ve been teetering between angry and depressed. I said it today to someone, “My daughter has autism, this is my life and it’s daunting sometimes to think this is never going away.”

I can not predict the future but the likelihood of her needing to be completely dependent on us for the rest of our lives is high. Swallow that one. I may never be able to spend a weekend away without wondering who will take care of Courtney. We likely will be juggling this crazy therapy schedule for many years to come. Joe may never be able to walk her down the aisle and Alyssa may never have a niece or nephew on our side of the family. Yep, it’s a grieving process.

Most days I don’t let myself fret about that far in the future because honestly, there’s no way to know for sure and time is too precious to let it bog me down. Heck, I can’t even predict Alyssa’s future. But then there are days where these thoughts smack me in the face. It’s the ugly side of autism. I let these moments hit me, take my time to grieve and then remember how far we have come in this amazing journey.

Before I get messages and phone calls from my parents, I am fine. I am happy and life is good. Just sometimes, autism sucks and It’s healthy for me to share that side too.

Bathroom play?

Yes, this is a picture of Courtney playing on the bathroom floor with her therapist. Before I get responses of ick…you let her play on the bathroom floor. My husband is ocd when it comes to the cleanliness of our floors. And I’m pretty sure our therapists will agree to this. You can eat off all floors in our house he keeps them so clean!

Back to why she’s playing in the bathroom…

Last fall we started slowly introducing the idea of going on the potty to Courtney. Through out the day (mostly during therapy sessions) we would put her on the potty to see if she would go. She was accepting of this and we had success. If the timing was right, she would go!

In the spring we noticed aggressive behaviors were increasing specifically during the times we were trying to get her to use the bathroom. As I have mentioned before, Courtney does not like the sound of running water. (Ask me sometime how showering went during our trip to Connecticut in a cottage without a tub 😩.) So this strong aversion to the bathroom could be related to washing hands or using the toilet. Whatever it is, she does not like the bathroom on our main floor. So, to work on this, we are bringing fun back to this bathroom. Our home therapists been some time in each session just playing in the bathroom. It started off playing outside the bathroom because she wanted nothing to do with it. They are also working on water play in the sink to put a positive connection to running water. Hopefully we will be able to start working on potty training again. I wonder a lot if we will ever be able to get her potty trained. It is something mom’s of children with special needs stress a lot over. Until then, we will take each day as it comes.

More than riding…

Courtney was super agitated today. She had a tough 2 1/2 hour session with one her home therapists. Struggled during occupational therapy. On and off whining the whole hour ride to the ranch to see our favorite horses. The agitation magically stopped as soon as we were with our favorite pony, Bumble.

I was asked one time what Riding Therapy was like, what did they work on, how does it help children with disabilities? I explained how it is so much more than just learning to ride a horse. I had mentioned to another person that Courtney has made so much progress with horse therapy and they asked, “how has it improved, is her posture better?”. Again I replied that it’s so much more than riding. When asked by both of these people, Courtney still hadn’t gotten on Bumble by herself.

In the pictured I shared above above the top picture is of Courtney at our second session. It’s hard to tell, but she is crying as she was petting the pony. I questioned why I was making her do this the first few sessions as she cried through them. She was so overwhelmed by the new experience, the noises, the big animal but we stuck with it knowing you can’t give up so early. After a change in location that ended up being much more conducive to her sensory needs, we finally started making progress.

Progress in what? Progress in her ability to tolerate the different noises in a barn, her ability to tolerate being around a big animal, her ability to follow someone’s lead, her ability to hold on to the rope. And now…we can say she’s made progress because she now rides Bumble without me! Just look at that bottom picture! That’s the same girl that was crying in the top picture because we had her touch the pony. And it’s the same girl what was whining out of frustration all morning. Horse Therapy is magical!

Ms. Christine has been so amazing with us this whole journey. Watching her work with both girls with different approaches based on their needs and in both cases in a loving way. Let’s just say there are few people that Alyssa will go to when I’m around. Ms. Christine is one of those people. I sat back today and watched Ms. Christine and her volunteer work with my girls. That’s progress! It’s more than just learning to ride!

And…I’m truly learning to ride!!! I’m making progress too! I got Capone to trot two weeks ago!!! I won’t blog about how at peace I am for 30 minutes when I have my turn to ride. But I am!