I’ve mentioned several times that sometimes progress is slow when it comes to milestones and goals with children with autism. In one of my blog posts, a friend called it “inch-stones” instead of mile stones. I love that phrase…”inch-stones”. Describes it perfectly. I feel Courtney’s “inch-stones” are not just “inch-stones” as of lately. These are some big jumps! Words can’t even describe the emotions I feel as I watch her progress. As I have shared in more recent posts, she is saying her colors and letters and the other day she was looking at a number puzzle and identifying numbers 1-10! She is VERBALLY labeling more and more and it is so beautiful to hear!

One of the biggest red flags Courtney showed that lead me to believe she had Autism was her inability to respond to her name and simple one step directions. She also had very little to no imitation skills. Skills that are so important in development and come rather early. At the age of 3 she didn’t have these skills! Well not only is she imitating motor movements now, she is following some 1 step motor commands! Check out this awesome video! I am one proud mommy!

One reason why I love working in special education is because each little step is such a huge accomplishment. These kiddos have to work so hard to make these gains. Then you have the children who are non-verbal and you teach them that they too have a voice with the help of a device.

Courtney had speech therapy tonight. This therapist concentrates on working with Courtney and the family in using her talker. The past few sessions he has pulled out a book and has shown us different strategies on how to use the talker with her while reading a book.

Courtney is obsessed with colors these days. So much so that we have even heard her verbalize her colors. Tonight, after her speech therapist left, she pulled out the book, “Brown Bear, Brown Bear”. (Side note…joe and I weren’t home. The nanny was with the girls during this time.) After reading the book with Courtney, Savannah then put the talker in front of her. Courtney went through the book identifying the colors using her talker.

Savannah shares this beautiful video with me. I had tears rolling down my face as I watched the beautiful video. Nothing like seeing your daughter find her voice!

Today I had to attend a training that was held at another school in my district. The training is called CPI (Crisis Prevention and Intervention). Basically it’s about how to handle situations when children are being either verbal or physically aggressive. I’m not going to go into details about it because not the purpose of this post but does play a part.

Wednesday night into Thursday, Courtney had a really bad night sleep. She woke up some time between 3 and 3:30 a.m. Fortunately she doesn’t wake up much in the middle of the night any more but when she does, it always has the same outcome. She is usually up for a couple hours. For the most part, she can be calm during this time, but sometimes she will get aggravated. Last night there were some moments of aggravation some of which involved her trying to bite and scratch me. Finally at 6 a.m. she fell back asleep. Yep…6 a.m.! Only to have to be woken up for school at 7:30 a.m.

I headed to work feeling beaten and exhausted. I got to my workshop early so sat in the car and googled meme’s that described how I felt. I found myself typing “autism sucks”. I hate when I feel this way because I feel like it sounds like I don’t like who my child is. Of course that’s not the case and I know no one thinks that is the case. Because of autism, my daughter was up for 3 hours. Because of autism, during those 3 hours I had to be on high alert because I wasn’t sure when she was going to try to bite or scratch me. Because of that, autism some times sucks.

Then came the workshop. Because the nature of my job, I am required to attend this workshop. It didn’t dawn on me until a few minutes into it that as many things with my work, this workshop hits home too. We started the workshop of with a pre-test and it included the following true/false question, “CPI is considered a trauma, true or false”. I answered true and shared with the group a personal experience. I told the group about my middle of the night with Courtney. I shared with them that after blocking bites and scratches from my daughter, I curled up with her as she calmed down and I broke into tears because honestly, who enjoys restraining a child who is out of control. You darn right, it’s traumatic!

I get home from the training and Courtney was in distress. We had new windows put in so there was a lot of drilling and hammering going. Courtney’s sensory system can not always handle these loud sounds so she was an emotional wreck. I was able to get her down in the basement. She was screaming as if she was in pain. What is your instinct when your child is screaming as if in pain? You hug or hold your child. I knew full well this wasn’t a good idea because doing that when Courtney is so upset does put you at risk for being bit. I didn’t care. Comforting my daughter came before protecting myself. Well…she bit me. Yep, sometimes Autism sucks.

By the time it was bedtime, I had one exhausted and sensory overloaded child. I cuddled with her in my bed hoping it will make her feel safe after such a long day. Today it sucked but tomorrow is a new day.

There is a sweet little voice in there trying to come out. We are hearing it more and more. My heart literally bursts every time I hear it!

Courtney is finally starting to imitate. Imitation is such an important skill in development. It’s how babies learn everything at the beginning. Courtney couldn’t or maybe you can even say she wouldn’t. It starts with imitating things like clapping hands or touching body parts. She has finally taken it to the next level and will imitate waving/saying “hi” and “bye”.  I say it’s imitating because you have to do it for her to do it. You have to get right up to her, get her attention and wave and say “hi” for her to do it back. Such a huge skill. It always made me sad that people will go up to Courtney and say hi and she had no response. Now, there is a slight chance you may get a response!

Courtney has also shown us in the past several months that she knows most of her letters and all her colors. It is still very hard to get her to label any of the above upon request but if you listen carefully while you watch her play with her alphabet puzzles or her color sorting crayons you will hear the sweet little voice labeling. I wish I could take credit for her learning things. I don’t know how much school or therapy can even take credit for it. I credit youtube. I see all the research out there on how bad screen time is for kids. As much as I agree, I also disagree. I will be the first one to admit Courtney spends way too much time on her iPad. But…she has learned so much from her iPad. She watches youtube videos where people are singing songs about colors and letters. She watches them over and over and over again. That is what taught Courtney her letters and colors! There is one YouTube video she likes to watch where someone is playing with the same color sorting crayons that she has. They label the colors and the objects that they are sorting. When she watches that video, she now grabs her color sorting crayons and does the same thing. Thanks to YouTube, Curious George and Daniel Tiger apps, my little girl has learned her colors and letters and can now show us she knows them.

We are hearing more words but she still doesn’t use words to communicate. She Courtney still needs her talker for that. She also won’t always use the words upon request. But those words are in there. It’s part of the fascination of autism. So much is in that brain of Courtney’s. Now if we can only get it out of her.

There continues to be inch stones but inch stones we embrace and celebrate. We are so proud of our little girl.

Courtney is in a funk again with her sleep patterns. It’s taking her forever to get to sleep at night. Sunday night, it took a car ride at 10:15 p.m. to get her to go to sleep. Then at 4:30 a.m. she woke up ready to take on the world. Two hours later, she decided she needed more sleep but of course at that point, she was an hour away from needing to be awake to get ready for school.  Some how she made it through her 5 hour school day, an hour of therapy, play time at LifeTime fitness while I worked out and a 90 minute appointment with an allergist all with a 5 minute nap thrown in the mix. Yep,  that’s my little energizer bunny.

I dreaded the appointment with the allergist. The idea of spending 1-2 hours in a small room with Courtney and a doctor sounded like pure torture. What is it like taking Courtney to a doctor? Let’s just say she has bitten, kicked and scratched doctors during a simple listen to her heart, ear checks, and even weight checks. So tonight I had the fun job of completely restraining my daughter while they did the scratch test. I decided to put the two of us through this torture because I’m trying to get to the bottom of some of her gut issues. We got our answers. Courtney has a mild sensitivity to basically her entire diet…dairy/milk and wheat. Besides the very few fruits and vegetables she eats (most in the form of puree), her diet consists of items that are made with wheat and dairy and/or milk. I then got to sit and listen to the doctor tell me to try an elimination diet with her. That entails taking items that are made of the ingredients she is sensitive to out of her diet for a couple weeks. Doing an elimination diet is difficult for anyone, but to do it with a child who is extremely picky?! Let’s just say I’m overwhelmed with the thought.

I was so proud of Courtney today. Such a long and different day for her and she handled it like a champ. The picture above is actually from tonight after her doctor appointment. I got to a stop light and turned around and saw her sleeping. I immediately started crying. Tears because I was exhausted from a long day after little sleep, tears because I was overwhelmed with so much information to sort through, tears because I was thrilled that it  was 8:30 p.m. and she was asleep, but mostly tears because my little girl once again proved to me that she is a champ. I love you, Courtney!

I love technology! I love that there are ways out there for those who are not verbal to still communicate. I love that my little girl is finding her voice thanks to technology!

Tonight Joe and I were sitting on the couch with Courtney trying to get her to calm down and go to bed. Her talker was next to her. She used her talker (AAC device) to tell us she wanted milk, which we then gave her and she finished. She then used her talker to say “ice cream”. Which I replied, “you don’t eat ice cream”. Joe replied, “are you just pressing button”? Courtney then used her talker to say “red”. She was definitely trying to tell us something. I looked around to see what was red that she may be wanting. Sure enough, with in her eye sight but out of her reach, was this little red plastic scoop of ice cream. I handed it to her and she smiled.

Tears of joy! One proud mommy!

I was watching a movie tonight while lying next to Courtney. It was about a father and his son with Autism. Parts of the movie made me really emotional. Watching the struggles that this father went through with his son were just a little too close to home. The movie got me thinking what the future would look like with Courtney. Because of the movie, my brain let me put a negative twist on what Courtney’s future could look like. Will she verbally communicate? Will she be bullied? Will she be able to work up to grade level in any subject? Will I ever not have to worry that she will be aggressive towards someone? Will she attend college? Will she marry? Will she be able to live independently? I know some of these questions are questions everyone probably asks themselves about their little children, but when I think of these questions, the first thing that comes out of my mouth is no to all of them. I watch a movie like the one I just watched and that is how I see my future. This father had a continuous fight with his son’s school on placement. There were scenes that broke my heart as someone bullied the child at school. They couldn’t go out in public without the fear of the child running away. I watched the boy regress when moved to a therapeutic day school that ended up being the wrong fit. So when I watch a movie like, “A Boy Named Po”, I feel like I am looking at a crystal ball. A movie like this one gives me a quick glance of what life may look like when Courtney gets older. I know….stop watching movies like this. I’ve always been a sucker for the movies that pull at your heart strings!

The movie probably tugged at my heart strings more because of the timing. This week we have Courtney’s parent/teacher conference. Also this week our advocate observed Courtney in her classroom. I also heard recently some rumors of a direction her district may be headed to when it comes to educating student’s with special needs (because of it being rumors, I’m not going to go into details about it).

I’ll let myself start stressing about the future at times. Who doesn’t? But then I stop myself and remind myself that all I can worry about is the here and now. Right now, I have a very happy and healthy little girl who has a contagious laugh, energy that the energizer bunny couldn’t even keep up with and an amazing home team of people that will do anything to help Courtney progress.

A few people have asked me how things are going with the new talker. Well…FANTASTIC!!!! She handled this transition better than I can even imagine! I had so many reservations on if we were doing the right thing by switching. As much as the data was showing me she was struggling with the other system, I wasn’t convinced it was going to be any easier with the new system. I spent more hours stressing and discussing on whether or not we should switch then it took her to learn the new system. Such a proud mom!

Tonight, the talker died though. You can equate this to you getting a horrible case of laryngitis and not being able to talk. Courtney lost her voice tonight. I actually found this harder then the switch in systems! We had to completely resort back to guessing or having her gesture. So hoping they can fix it quickly!

It was last year at this time that Joe and I met with Courtney’s teacher for Parent/Teacher conferences. For the most part, I can’t remember what all was discussed at this meeting. What I do remember though, is discussing what they were projecting her placement would be for this school year. Being a teacher, I knew then that you do have to be careful talking about a topic like that without it being an actual IEP and I also knew that their projection was just that, a projection. It was at that meeting that we were told Courtney was projected to be in the 5 hour structured learning class.

One of the many differences between Parent/Teacher Conferences and an IEP meeting is that an IEP meeting is driven by the legal document. Because there is a legal document being made, notes are taken. At Parent/Teacher conferences, notes are typically not taken. So at Courtney’s IEP meeting that was a held a few months later when the curve ball of a different placement was thrown at us, I was so wishing I had notes from the Parent/Teacher conference. Chances are, it wouldn’t have made a difference. Chances are everything would have continued as it has.

Parent/Teacher conferences are approaching again and for some reason I have made myself sick to my stomach over them. I can’t help but relive last years conferences and IEP meeting. I immediately decided that I wanted to make sure notes were taken at these conferences just in case something came up that I would want to refer back to. I was hoping it would be as simple as just asking them for someone to take notes but it appears I was wrong.

I really struggle with being “that parent”. I went into her first school year hoping I wouldn’t be “that parent”. But here I am…I’m “that parent”. The parent that would make me sick to my stomach if she was one of my student’s parents. That parent that no matter what you do you feel you can’t make them happy. I don’t want to be “that parent”. But, I do want to be Courtney’s voice. I want to make sure that she is getting everything she deserves. I want to make sure that nothing gets in the way. I want to make sure that nothing slips by me because I let my guard down. If only I could find that in between. I want to be the parent who fights to get her daughter everything she needs but still not looked at as “that parent”.