I had so much fun today just watching Alyssa as she enjoyed some Arts and Crafts time. She insisted on doing some cutting since she saw me cutting a project for school. I gave her some scissors and she of course initially fought off any attempt I made to show her the proper way to use them. She did eventually let me show her where her fingers go and she started snipping away. She snipped with so much focus. And with each snip, her concentration grew. I then watched her put the scissors down to color her little snipped papers so delicately using the perfect grasp. My special needs warped mind didn’t realize 2 year olds could hold a crayon correctly! Then it was so cool to see her figure out on her own how to hold the scissors correctly once she decided to start snipping again. I was just in awe of my beautiful little girl as she independently created her beautiful masterpiece of snippets of paper some of which had colorful circles on them.

This terrible two stage is hard! Since developmentally Courtney isn’t two, this phase is completely new to me as a parent. Alyssa can go from a sweet little princess to a holy terror with horns and then back to a sweet princess in seconds! And yes, I’m well aware that 3 can be even worse!!!

The one thing I’ve noticed is some of her tantrums are happening when she’s just trying to navigate her way around this world of big people who are constantly telling her what to do, and how to do it. Big people who want her to be independent but when she actually tries to be independent we get in the way. A world with so many rules to follow but still too young to truly understand what these roles are and why she needs to follow them. A world with so many cool things constantly tempting her but having to learn that she can’t always have instant gratification. That’s a lot to handle as a little two year old! Unfortunately, like a lot of parents, I am consumed by so many things through out the day so when Alyssa throws a fit or gives me attitude, I tend to forget to respond calmly and end up fighting a fire with fire which is a recipe for disaster (aka toddler meltdown)!

So today during this arts and crafts moment, I just sat back and watched. Yes, she was making a mess and yes, there were times she wasn’t holding the scissors right. There were even a few times I thought we were going to lose a finger. But what was also happening was this beautiful little girl proudly completing a project all on her own and the best thing I could do for her was just let it happen.

Oh Courtney, I need some insight. I need you for one moment to let me know how you feel about decisions I have made and continue to make. I need to know if I’m fighting hard enough for you. I need to know if I’m pushing you too hard or can you handle more. I sure there are times you are trying to answer these questions in your own ways but mommy need more of your insight.

But first, let me tell you how very proud I am of you. You are finishing up your 2nd year of preschool and your second year of a full schedule of therapies and you more than exceeded all my expectations of the year. You not only showed us that you can handle a longer school day but you can handle a larger class. You showed us you can handle you long school day on top of many hours of therapy. You not only showed us that you can handle a whole different communication system but you also started letting us hear your voice more! And my sweet girl, it’s such a beautiful voice! You truly are a little rockstar!

So my little rockstar, now that this year is over, can you let me know if you are truly ok with your placement? Is it meeting your needs? I know I’m the mom and the special education teacher that is suppose to know but I don’t and I feel so helpless. See, here’s the deal, because I’m that crazy mom, I’m still worried it’s not the right placement. And because I’m that crazy mom, I feel I need to keep fighting.

Now let’s talk your very busy therapy schedule. You amaze me on how well you handle it. Can you handle more? Can our family handle more? Will you resent me for making you “work” as many hours at the age of 4 that a grown adult does? Oh Courtney, if you could only share how you feel.

So promise me this…I know you can’t do it verbally but promise me you will let me know if I’m fighting too hard or not fighting enough. Tell me if your days are too long. Tell me the best way you can… your voice, your talker, your behaviors. How ever you need to communicate it, you do it. Please know that every decision I make is out of love. You are my rockstar and nothing will ever change that!

Love,

Mommy

Time for a post all about my baby who is not such a baby anymore. Sweet baby Alyssa who entered this world in such a scary unforgettable way has turned into this little spunky, princess loving, spit fire of a girl. This strong personality is just what she needs to help her navigate through life. Her sister requires a lot of attention from us so I really think Alyssa’s strong personality is her way to make sure she is “heard” in our little family.

I spent a good portion of Alyssa’s first two years watching her like a hawk making sure she was meeting all the developmental stages. I wasn’t going to miss any signs and even as she was meeting all the stages, I still worried. What if suddenly she regressed? Very possible because they did for Courtney. I’ve stopped worrying about her development. In fact, I now think I’m raising a genius! When you have spent so many years teaching 3-5 year olds with significant delays and then raising your first child with the same significant delays, you become a little warped on what typical development is suppose to look like. Did you know two year olds can talk in 4-5 word sentences, answer yes/no questions, tell you what hurts, tell you their likes and dislikes, call you “mommy” and already catch on that her big sister needs her help with things? In my eyes, that’s a genius! She amazes me every day!

Now I worry about other things with her. Am I giving her enough attention? Does she ever feel like her life revolves around her big sister? Does she already feel like she has to be mommy’s helper when it comes to her big sister? Loved ones are probably reading this laughing because they know I give Alyssa plenty of attention. Alyssa demands it! I’m sure there are times where I bow down to her demands quicker than I should but I also look at how her wants and needs quickly become second place some times. She is brought to therapy after therapy with her sister, she has had to play in other parts of the house while her sister has therapy in the main play area, she gets left on the swing while I have to run after Courtney to stop her from escaping. Sometimes she handles it well but sometimes she handles it like any child going through the terrible twos would handle it.

I think the thing that has amazed me the most about Alyssa is watching how she is with Courtney. Yes, they already get on each other’s nerves. There are times where you can tell Alyssa has had enough of Courtney and times where you can tell Courtney has had enough of Alyssa. Alyssa goes through this period every day where she can’t handle Courtney’s noises. Poor Courtney makes the slightest noice and Alyssa will scream, “stop CC!” Oh my gosh does this drive me CRAZY!!!! But then she makes up for it when we are trying to leave the house and Alyssa will try to grab Courtney by the hand and bring her to me. She will bring Courtney her talker if she needs it, she will try to get Courtney to play with her and every night she tries to give Courtney a hug good night. I was so excited to have two little girls and watching them grow and bond has already been the most beautiful thing ever.

I struggle watching her turn in to a little girl. She’s no longer my little baby. She will forever by my princess though.

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!!!!!