I find a sleeping toddler so beautiful to watch. They look so carefree and innocent. You can’t help but watch and wonder what is going through their little head as they sleep. Since I have to put Courtney to sleep in my bed, I have these few minutes after she falls asleep to when I move her to her bed where I just lie next to her and watch her. A lot of nights I look at her and whisper, “we did it, we survived another day”. As I’m sure many parents feel, sometimes you just hope you get through the day without anyone getting hurt. Sounds bad but it’s the truth, right?

For me, I sometimes say to myself, “let’s just get through the day without me losing one of them or one of them getting hurt”. Today I got a text that scared me to death. Courtney has figured out how to open the front door and now that the weather is nice, she seems to think she can decide when she can go outside to run around. Today, our nanny had the front door open like we always do when we are expecting a therapist to arrive. Courtney likes to escape to upstairs and she will do it in a split second. So today she did her usual disappearing act and as our was about to go look for her upstairs, she suddenly saw Courtney running in our back yard. We have a hard time keeping Courtney in our own yard when we are outside playing so of course I briefly let myself think about all the things that could have happened. Nothing happened though, everyone is safe and I don’t blame anyone. But I promise you, I have now researched every possible way to make sure this doesn’t happen again!

what you see in this picture is baby food in a pouch, animal crackers, slim jim and sand. These are the items that Courtney has eaten today. 5 pouches, a few animal crackers, a slim Jim and a hand full of sand. Yep, a handful of sand!!!!! If it were up to her, this is all she would eat. So my 4 1/2 yr old eats baby food and sand!

Her language is taking off but sometimes what happens in development is when one area hits a spurt, another area regresses. So as Courtney’s language has taken off, feeding has regressed. She receives feeding therapy once a week and for the past month she has had a meltdown when the therapist just walks her down the hallway towards the kitchen at the clinic let alone actually work on trying new foods.

Working on feeding with problem eaters is such a delicate process. It’s so much more than if they are hungry enough they will eat. Honestly? Courtney wouldn’t. It is so important to make sure there is no anxiety around food so for now, I’ll be happy that at least the baby food in a pouch is healthy! It could be worse! The sand though?!?! Really Courtney, sand?!?!

*Please excuse the poor videoing, her therapist was trying to take a video and teach at the same time.*

Words can’t even explain the emotions I’m feeling as she continues to talk more and more. She is still labeling but she is doing it upon request. Her talker is still what she uses to meets her wants and needs but that’s ok. I absolutely love her voice!

For a while now, I’ve been researching therapeutic horseback riding for Courtney. I was looking a place that not only worked with Courtney but a place where Alyssa could also take riding lessons. Growing up, I loved playing sports and doing different activities with my younger sister and wanted to find something for them to enjoy together.

I was so excited when I found Ms. Christine and Hands, Hooves and Hope Ranch. It was exactly what I was looking for. A kind and patient lady with beautiful horses ready to work with not only both girls, but me too!

There is no pressure at therapy. Alyssa got on the pony the first session. Now 4 sessions in, she looks like a pro. She asks all week long, “go see my Bumble (the pony’s name)?” Courtney is still very uncertain about the horses and has yet to get on but each session she’s becoming more comfortable around them. One of the sessions we even heard her say Bumble!

It was during today’s session when Joe and I watched Alyssa sit so proudly on the horse and Courtney contently walking and petting the horse that I felt how therapeutic this is going to be every week. The 4 of us are doing something as a family. After a stressful and busy week, I was relaxed and couldn’t be happier!

Joe and I attended a presentation on an organization that helps provide respite in different ways to parent who have children/adults with special needs. The presenter talked about how it’s common for these families to actually lose friends and family over time because of their child with special needs. She asked if that was true for any of us attending the presentation. Honestly, it’s the complete opposite for us. Our support system has done nothing but grow since Courtney’s diagnosis and couldn’t be more appreciative.

I certainly felt the support this past week. Several have asked how Courtney’s IEP went on Thursday. It went well. They couldn’t talk enough about the explosion of progress she has been making the past two months. It was so great to hear. The areas she is taking off in are the areas that she is being taught 1-1 and also receives 15 hours of therapy working on the same things. What we also heard is she still needs adult assistance to be a part of the blended part of her day. She needs someone to help her transition and be a part of group activities. I’m not surprised by this and it doesn’t bother me that she needs this. My problem is, In my personal opinion, they are restricting her more by this placement. It is my belief that putting a child in a less restrictive environment with 1-1 assistance is actually more restrictive than putting a child in an environment that is more conducive to their learning style and don’t need as much assistance to participate. If she needs that much assistance to be a part of the class, is it truly an appropriate placement? Our advocate said it best. “Courtney is a class of 1 in a class of 12”. She’s not truly a part of the class.

She’s progressing and we couldn’t be happier. We expressed our continued concerns but will continue with same placement as next year because of it being the only option.

I am so proud of the progress Courtney is making. Seeing this explosion the past 2 months have been amazing. And actually I give a lot of the credit to the elimination of dairy in her diet!

The best comment this week came today and came from a family member. My brother and his wife watched the girls about 2 weeks ago. My sister in law said to me today that she was telling my brother that Courtney seemed different. She seemed happier, more connected and more verbal. Hearing that from someone who doesn’t see her day in and day out just meant the world to me. Thank you, Amy!

Thank you to all of you for being an awesome support system! You are huge part of this journey and can’t do it without you!

Courtney’s annual IEP meeting is tomorrow. It was at last year’s annual meeting that they shocked us by telling us they no longer will have an extended self-contained structured teaching class but instead she was going be in a blended extended day class. I don’t even think “shock” is the right word for how we felt. I was livid! I immediately found an advocate to help us with the fight we were about to embark.

A year later and we can say we have been pleasantly surprised on how well she can tolerate the larger class setting. She continues to be happy going to school and she has handled the longer day followed by more therapy like a champ. All of which we couldn’t be happier about.

So why am I so nervous about tomorrow? Because as much as some things have gone well, I still don’t think it’s the best placement for her. My advocate and her therapists have observed her in the blended setting and in each case, they reported to Joe and I that she is happy but she is not being challenged. She is not an active participant in the blended part of her day. In each of these observations she wasn’t expected to do anything but sit during the circle time activity, she could leave centers as she pleased even though the “typical” students had to stay for a designated time, and not much fostering of independence in classroom routines. Report like that cause me to question her placement.

“But wait, Erin, you have shared countless posts of the progress she is making…” Yes, she is making HUGE gains. I hear Courtney’s sweet little voice on a daily basis! She handled a huge change in communication systems like a pro! She is starting to follow one step directions! But don’t forget, Courtney is in 15 hours of private therapy. 15 hours of 1-1 therapy that drills her in the exact areas we are seeing improvement in. I am not at all saying school did not help with that. I’m sure it was a combination of school and therapies.

At this point, we don’t expect placement to change for next year. What makes me nervous about tomorrow is that I’m hearing the district is going to follow the inclusion model through out elementary school. She has proven a lot can happen in a year. Maybe this coming year she will show that she can handle more inclusion once in Kindergarten. But in the mean time, I can’t help but worry about the education my daughter is going to receive. So in the mean time, I will continue to be the advocate that Courtney deserves. I don’t want to be, but if I have to be that sleep deprived, non-caffeinated special needs mom that comes to all meetings with boxing gloves (aka: my awesome advocate) then I will.

I love how the photograph of this big moment includes her T-shirt that says “Till All the Pieces Fit” since feeding is a huge part of Courtney’s puzzle and we are slowly but surely making that piece fit in the puzzle!

Let’s start with nut milk. We found out from an allergist that Courtney has a sensitivity to dairy just as I’ve suspected. We took lactose out of her diet a while ago but actual dairy is different. Milk that is lactose free still includes the milk protein. Allergy testing showed it was a slight sensitivity so some people said making the big switch to dairy free may not be worth the fight because with the slight sensitivity we may not see any difference. After a lot of back and forth I decided we were going to bite the bullet. Since she is a HUGE milk drinker and can be picky about the slightest change in taste in her food I was worried it would be a hard transition. She proved us wrong! A huge thanks to my nanny who had faith in our little girl and convinced me to try. After a couple weeks of dairy free, I have seen a huge difference in her bloating! Did you know Courtney has a rib cage?!

Now for the limes and oranges. Courtney loves to play with whole fruits and vegetables. She will take them and feel them both with her hands and lips. Today her therapist decided to cut the lime she was playing with and she started mouthing it! I wasn’t home so of course this lead to the following exchange between my nanny and I…

Well, she cut up an orange and sure enough she started mouthing that too. No bites but mouthing cut up fruits gives you so much taste so that is HUGE!!!

Can’t help but wonder if this increase in trying new things is because she feels better now that she’s not drinking a crap load of milk that was upsetting her tummy.

Her allergy test showed a very slight sensitivity to wheat. So…do we dare try gluten free? I do believe that will be a harder change to tackle. Stay tuned for that decision. In the mean time…

LIMES, ORANGES AND NUT MILK, OH MY!!!!!

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.