“Here’s a rest stop with a big field for Courtney to run. I’ll run with her.”

5 years ago when he first took me Mackinac Island, MI I was almost 7 months pregnant with Courtney. We were on our “baby moon”. Joe talked back then how we would do this trip annually with our family just like he did growing up. He talked about how perfectly well behaved our kids would be all the time. I always chuckled knowing that no child could possibly by “perfect” 24/7.

If you haven’t read it before, you need to read “Welcome to Holland”.http://www.our-kids.org/Archives/Holland.html. It describes so perfectly how I feel about raising a child with a disability. No, this is not the journey we imagined 5 years ago but I love this journey! I’m so glad we are on this journey.

5 years ago we didn’t talk about how our long car rides are going to need to include a stop at a park and or field for Courtney to run. We didn’t talk about the big Rubbermaid container we were going to have to pack of Courtney’s food. We didn’t even consider having to bring a cooler just for 3-1/2 gallons of special milk. But life barely ever turns out as you planned, right? We may have planned for Italy 5 years ago, but our wild trip to Holland is beautiful! Even more beautiful than Italy!

Alyssa and I have a lot in common but it goes way beyond her being my mini me. Her and I are both part of the special needs sibling club. Alyssa and I both have a sibling with special needs. Being a part of the same club has helped me remember that I have to pay extra close attention to how decisions I make for Courtney may also effect Alyssa. Already, Alyssa’s life is revolves around Courtney’s therapy schedule. Not a day goes by where I don’t think about how this could effect Alyssa some day.

But it’s more than our daily schedule. My expectations of how they behave in certain situations is different. I discipline Alyssa differently then I discipline Courtney. If Alyssa could tell me, I’m guessing she would say that Courtney gets away with things. It is my job to make sure Alyssa doesn’t resent Courtney for these differences.

Monday morning was a tough one. Courtney had gone to bed late the night before so I had to wake her to get ready for school. Alyssa woke up super early so by the time Courtney woke up, Alyssa was extremely crabby and ready for a nap. By the time Courtney woke up, we had 20 minutes to get her fed and dressed before the bus came. She was very irritable and aggressive during these 20 minutes. She requested the black Ipad which Alyssa had at the moment. I nicely asked Alyssa if Courtney could use the black Ipad. Of course Alyssa replied no. Frustrated by the amount of self biting Courtney was doing, I decided to just take the Ipad from Alyssa. Rightly so, Alyssa threw a fit. This didn’t self the problem with Courtney at all because now she was upset and over stimulated by Alyssa’s crying. So…now I had two kids screaming with the bus about to show up at any minute.

We got through that insane moment. But I was uneasy about how I handled that moment the rest of the day. Joe got frustrated with Alyssa when she was throwing her tantrum. I reminded him that she had every right to throw that tantrum. I ripped the iPad out of her hand to make her sister happy. How unfair is that to a little two your old. I know, you have to pick your battles and in the end, that one moment won’t damage Alyssa. But what decision of mine will leave Alyssa resenting Courtney?

The girls and I always spend Thursday evenings at my parent’s house. My mom use to watch the girls during the day and that is not possible any more. I want them to have a good relationship with their grandma and grandpa along with my sister and her family who also live there.

As I’ve mentioned before, the evening usually consists of Alyssa playing with her cousins while Courtney plays/climbs in a different room. Now that it’s nice outside, you will also find all the kids outside but usually Courtney is still doing her own thing. They have one of those big trampolines in their back yard which Courtney LOVES to play on. This Thursday that trampoline became my favorite equipment. The trampoline brought all 4 kids together. For 20 minutes, I watched them all jumping together and having just the best time. My heart was full! Unfortunately I didn’t get a picture of the awesome moment.

I did get a few pictures of another awesome moment. Before my mom became a full time Grandma/Nanny, she taught preschoolers with autism. Her job was her life. You will never meet such a devoted teacher as her. She loved her students like they were her own. You can tell it was so hard on her to make the decision to retire even though it meant she got to watch her grandchildren. I’m pretty sure Courtney holds a special place in her Grandma’s heart because Courtney brings her two favorite things together…grandchildren and autism. If it were feasible, I’m pretty sure she would love to be her personal teacher. When we were there this Thursday, Courtney got into markers. Courtney LOVES labeling colors. My mom and her spent several minutes just labeling the colors of the markers. Pretty sure my mom was on cloud nine during this special time with Courtney.

It was such an awesome Thursday! I love that the girls enjoy our time there and that I can still make it work in our crazy schedule.

I think the thing I have the hardest time with when it comes to Courtney is her struggle with peer interactions. I think I struggle even more now with it than ever as I watch Alyssa make friends and talk about them on a daily basis. Now Alyssa’s friends are mostly her cousins and then her friend Kayla, but she asks for these friends daily. Does she ask for these friends daily because she doesn’t have anyone playing with her at home? For the most part, Alyssa and Courtney do their own thing when playing at home. Alyssa is usually making up the cutest play schemes in her kitchen or with her princesses and baby dolls while Courtney is in another room labeling colors, numbers and animals or looking through books. They do occasionally like to rough house with each other which I always enjoy watching. I do work on them playing next teach other but it’s usually short live.

I love the bond that Alyssa has with her cousins but when I watch them play together while Courtney is doing her own thing in the other room, my heart breaks. I want Courtney to have that same bond with her cousins AND her sister. I know Alyssa and Courtney have their own special bond and nothing will ever break that.

I have to laugh…at the end of last school year and the beginning of this past school year when I addressed my concerns about her placement in a blended room, I explained to her team that Courtney sometimes struggles with playing even in the same room as her sister and cousins. I will never forget the principals quick response on how magical the transformation will be after she spends some time in the blended room. She told us we will be surprised how Courtney will now want to play with other kids. Well principal, I’m still waiting! Yes, I’m fully aware that it takes time but that wasn’t the way she put it.

Our home therapy is working on Courtney playing with Alyssa. When possible, Alyssa gets to join in on the therapy session. Right now they are working on increasing the time Courtney and Alyssa will engage in parallel play, meaning the two of them sitting next to each other playing but not necessarily interacting. With time, she will get there. I know I have to patient until she does. I have to remember they do have a special bond in the mean time.

The past few weeks several have said to me in person how much they enjoy my blog. I just wanted to make sure I again say thank you. Thank you for taking the time to not only read my posts but always being willing to support my family through our journey. I have found blogging so therapeutic these past 2 years. I continue to hope that the blog not only helps spread awareness and acceptance of autism but I also hope it reaches other parents of children with autism so they know they are not alone in their journey.

So again I say, thank you!

Ok, so truth be told, I wanted Courtney to have therapeutic horse riding so I can spend time with my favorite animal. I’m taking lessons right along with them and loving every minute. Truly therapeutic for me!

Though there is another reason why I actually decided to join in on the lesson and today was the day it paid off! After a couple lessons, Ms. Christine let Courtney get on the horse with me. Folks, she rode the horse today!

Ms. Christine and her friends moved to a different ranch last week and this new home appears to be a better fit for Courtney. She seemed at ease from the get go. When given a brush, Courtney actually brushed the horse without any resistance!

I love how quickly Ms. Christine has gotten to know both girls and their needs. She has no problem handling Alyssa’s sassiness with patience and consistency while handling Courtney’s fears and sensory issues so gently and understanding. She is so encouraging with both of them throughout their session.

Alyssa showed resistance today. Though the stacks were against her. Her favorite pony, Bumble wasn’t there today so she had to work with the big horse Capone. She’s also going through a phase where she is exhibiting a HUGE phobia of bugs/flies and there were a few of those around today. So…I got to go on first and Courtney got to “help” walk Capone while I rode him. After sometime of her happily walking the horse, it was my time to just ride. It truly is just as therapeutic for me as it is for Courtney. I’m so relaxed during my session. During that time the only thing that is on my mind is that horse and how to get him to do what I want him to do. Not an ounce of stress!!!

Ms. Christine tried to convince Alyssa to get on Capone with me but she wouldn’t have it. Since she seemed to think I was ready to ride with Alyssa, I asked if we could try Courtney today even if it was putting her up with me and taking her right down. Courtney will whine if she has to do something she doesn’t like but if she is truly fearful of something, you can see her whole body tense up. She was just whining when put on the horse with me with some intermittent smiles so we decided to keep pushing. Her boots fell off when we put her on. When shoes come off so do socks. Courtney loves exploring textures through her feet so I immediately felt this could help and Ms Christine was ok with it. Whenever Courtney started to whine I had her rub her feet on Capone and it definitely helped calm her.

I was on cloud nine as I held and encouraged her through 2 laps around the arena. I was so incredibly proud! She did it! We did it! Thank you Ms. Christine and Capone for making it such a fantastic day!

Bumble, Alyssa hopes you are back soon!

This photo came up on my Facebook memories. It was from two years ago today. It was the day of Courtney’s evaluation at what’s now her preschool. Unexpectedly this picture hit me like a ton of bricks today. The emotions poured out. More so than that actual day. On that day I knew what the evaluation team was going to see and determine. I was prepared for it. In fact I needed that day because at this point there were still loved ones that I needed to convince that we were on an autism journey with Courtney. Loved ones including her dad.

As a family we have come such a long way since this day. We have learned to accept her limitations and celebrate her differences and strengths. We have learned that our Autism Journey is our normal. It may not be someone else’s normal but it’s ours and we love it. There are many days in the past two years where I was stressed, frustrated, and angry about different parts of this journey but all I needed was to see Courtney’s smile or hear her voice and those emotions disappeared. The emotion I feel the most is proud. I am so proud of our little family!

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.