Teaching the cousins…

Since Courtney officially received the diagnosis of Autism I wondered how I would educate those close to her, especially her cousins who are on the younger side but probably the closest to her. Not knowing how to approach it, I decided I would leave it up to the parents for now.

It has become apparent at family gatherings on both sides of the family that it has been talked about with the cousins. They are all great with her! Unfortunately some have already been on the receiving end of her aggressive behaviors. When this has happened I’ve seen her cousins try to carefully tell their parents without me knowing that Courtney bit or scratched them. Breaks my heart that they have to experience that but so grateful they also have some understanding.

It is so cool to watch some of them explore her talker. I let them explore it because I want them to think it’s cool and I want them to learn how to communicate with her.

While celebrating Thanksgiving with one side of the family, one family member shared with me that Courtney’s cousin wrote about her at school. She shared his writing with me. I had to hold back my tears as I read about how he wants to help autistic children like his cousin when he grows up. How beautiful! And I can see him actually sticking to that! He is so good with Courtney. He spent the whole gathering making sure she had her talker with her. It is so cool to see her already inspiring others.Oh Courtney, you are so loved by many!

The most beautiful words…

Today when Courtney threw up for the 3rd day in a row, I had to take a deep breath and mentally remind myself that this didn’t have to ruin Thanksgiving. I told myself that we can make our Thanksgiving plans work even with a sick child. It’s been a weird virus. She has thrown up every morning the past couple days and the rest of the day you see these moments of her starting to feel better. So I figured if today were to go like the past couple days, she would be just fine during our Thanksgiving dinner at Coopers Hawk with Joe’s parents.

The day continued like the past couple days so we decided to still go out for dinner. Packed a bag full of her favorite foods, even though she hasn’t really been eating. Brought her iPad and her talker. I was preparing for the worst but hoping for the best.

Courtney for the most part uses her talker just to request her favorite food items and toys. Her therapists, both at school and at home, have also been working on her requesting when she needs a break. Usually she only does it after you have modeled it on her talker and are specifically working on her requesting it. I have never seen her really request it outside of therapy when she truly needed a break.

So tonight at dinner, she quickly got overwhelmed by the crowd and the noise at the restaurant. She kept grabbing my hand, trying to get out of the high chair and started whining. I tried to remain calm but all I could think of is this isn’t going to work tonight. We didn’t even make it to ordering our food and she already wants to go. Suddenly she reached for her talker and pressed “need to take a break”. Joe and I looked at each other both starting to form tears in our eyes. Our non-verbal child was just able to tell us she needed a break! The most beautiful words every! So what did I do? I immediately got her out of the high chair and I took her for a walk around the restaurant. I walked her around with tears in my eyes wanting to call every person that has been a part of her journey to let them know all their hard work and effort is paying off. I wanted to tell them on this Thanksgiving day how grateful I am for them. They have helped give my little girl a voice. For that, I am truly thankful!

…and yes, we were able to make it through dinner. We had a wonderful Thanksgiving after all!

I’m thankful…

Being a commuting, working mom of 2 toddlers, one of which has autism, is stressful. There are some days my life is so busy, like many parents, that I tend to forget to take time to really think about the things I’m thankful for. There are days that I not only forget to think about those things, I may actually spend more time thinking about how stressed I am and actually wonder why I had to get thrown so many obstacles. Then a day like Thanksgiving comes and it reminds me to pause and remember how truly thankful I am for so many things. So I decided tonight to not only spend some time thinking about it, but also blog about it. So what am I thankful for?

I’m thankful for…

-my job and the friends I have there. It may take me an hour to get to and from work but at least I have a job. And not only do I have a job, but I have a job where I work with some of my greatest friends. Friends that have been with me through so many of the ups and downs. I get to see these friends every day! How lucky am I?! I am so thankful!

-My big girl car. My big girl car? I feel like such a grown up driving my SUV with two toddler car seats in it and I am thankful for that.

-my Naperville friends. When I lived in Algonquin with my ex-husband years ago, I never felt like I truly made it home. I think one thing that was missing was really good friends in the area. I’ve made those here in Naperville. Friends that have children the same age as mine and friends that are also on this Special Needs Mom journey. Thank you friends, love you ladies!

-Facebook. Yes, Facebook. Why Facebook? Some of the friends that i have made in my neighborhood, I originally met on Facebook. I’ve also met some great women who have had babies the same time I have. I have also met some amazing ladies and families effected by AFE. I have met so many other Autism Moms. -So yes, I am thankful for Facebook.

-for my supporters. Over a year and a half ago I started this blog. Through this blog, I have gained so many supporters. You have cheered my family on as we trudge through this journey of autism. You have become such an important part of the journey, thank you!

-for Courtney’s home team. I am beyond thankful for the countless hours they have worked with little miss Courtney. She has come so far since we started this journey and I have them to thank.

-for our advocate. I probably drive her nuts, but yet she continues to help us fight for what is best for Courtney.

-my in-laws. Joe’s parents watch the girls two days a week and help us out with so many other things. His sister and her husband and kids are also awesome. I love how excited they all get to see us and how excited the girls get to see them.

-my parents, 9 brother’s and sisters, their significant others and their kids. How lucky am I to have such a large family who love and support each other. Mom and Dad, you have raised us well. Thank you for being you!

-our nanny. Never thought I would find someone so great with the girls and who also gets me. She is our lifesaver!

-my husband. I can be a stressed out lunatic on a pretty regular basis and somehow he continues to stick with me. I sometimes drive myself nuts and some how I haven’t driven him nuts. He loves the girls and I unconditionally.

-my girls. They light up my world. Their endless energy drives me crazy, their crappy sleep habits drain me, the tantrums and or meltdowns exhaust me but their smiles melt my heart. Their snuggles remind me how lucky I am every moment of every day.

Most of all, I am thankful for being alive.

Happy Thanksgiving To All!

It mattered to us…

Sixteen years ago I was a 1-1 assistant for a child with autism in an elementary school. She was very challenging. She was non-verbal and very aggressive. At the end of the year I received the most beautiful card from the mom that included this story. It’s called “The Starfish Story”.

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It meant so much to me. Now it means even more to me. Just over a year ago Courtney started a therapy called, ABA (Applied Behavior Analysis). It’s one of the top strategies for working with children with Autism. It requires many hours a week of intense therapies usually conducted by a couple therapist and lead by a Board Certified Behavior Analyst (BCBA). Though I took the course work to become a BCBA at one point, it still made me nervous to have Courtney receive this therapy. For her, it meant 12-15 hours a week of therapy. I knew it was the right thing to do though.

So a team of three therapists and a BCBA was assigned to us. Our BCBA told us at the beginning, we were very lucky that we got the team that we got. Two of the three therapists had the title of lead therapist in the company. At the beginning, Courtney had no mode of communication, unable to respond to her name, a flight risk, a biter, a scratcher and a ball full of energy. She had major meltdowns at the beginning. They really struggled getting her to participate in tasks and had to teach her a communication system that they barely knew themselves. These ladies spend 12-15 hours a week, in our house, working one on one with her. The only days she has off are holidays. No summer breaks and no weekends off.

I received news the other day that the two therapists who have been with us since the beginning are leaving the company because of budget cuts. The company had to make some major budget cuts due to a change in reimbursement from a certain insurance company. The team leader position was one of the cuts. So at first we were very lucky to have two team leaders on our team, but now we are getting quite the blow because those two team leaders are now leaving.

The thought of it puts me to tears. These ladies have done so much for my family. Thanks to them, after a year, Courtney has made so much progress. She now has a way to communicate her wants and needs, she is responding to her name, we can walk down the street hand in hand without me worrying about her taking off on me, and the meltdowns are few and less intense. These two ladies made a huge difference. Words can’t thank them enough.

We still have our BCBA and we still have our other therapist that has been with us for several months now. I’m sure the company has many other good therapists. I’m sure Courtney will continue to make great progress. But these two ladies started us off and I will forever be grateful that they picked my little starfish up. They made a difference to her. They mattered to us.

Glad to be alive…

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The girls and I were driving to church this morning when suddenly I was hit by a wave of emotions. We were sitting at a stop light and I had glanced back and got a look at Courtney’s beautiful eyes. Two years ago at 4 a.m. on November 6th, I came so close to never being able to look in those beautiful eyes ever again. So close to never seeing Alyssa’s contagious smile. I was not prepared for that wave emotions. I’m sure these emotions will probably pop up every year. I struggled for a few hours. Today was All Saints Day at church. The day where we honor the saints in our lives that have passed away. Members of the congregation light a candle for those saints in their lives. It was so hard not to think that a candle was almost lit for me. I finally decided at that moment to do something about it. I got up and lit a candle for all the mother’s who died from Amniotic Fluid Embolisms while giving birth. After I lit that candle I was able to say, “I’m glad to be alive”.

Boy am I glad to be alive. I got to witness the first 2 years of this little whipper snapper. This little girl brings such joy to our lives. She also has learned how to test our patience!!! I have signed a breath of relief through every milestone. I have watched her become the best little “big” sister to “CC”.  I have watched her struggle to crawl, learn to walk, and eat like I have never seen a kid eat. Her and I have spent many hours taking Courtney to her therapy sessions, hiding up stairs during Courtney’s sessions that are at home, and sleeping next to each other in the middle of the night as she has taken over our bed. I love getting to see the many faces of Alyssa. Seriously, she has the cutest looks! In just 2 years, I’ve had so many conversations (that I don’t know a single word that she said) with her just wanting to scream tears of joy because she is actually having a conversation with me. I can’t even begin to imagine missing any of those moments…even the tantrums!

Because I’m alive, tomorrow, November 6th, I get to celebrate her being 2. Yes, that was the scariest day of our lives 2 years ago, but that day brought us Alyssa. Alyssa Jeanne, we love you to the moon and back! Happy Birthday!

Is it even worth it…

I hate Halloween. I’ve made it quite known. So here I am with two girls, one who is at the age that could really enjoy Halloween but is clueless about things like holidays and another one who is still too young to really get it. I tried to come up with every excuse in the book on why I wasn’t going to take them out trick or treating. Really, I probably didn’t an excuse at their age. I went back and forth all day but finally had decided we weren’t going to go because I heard Courtney was cranky.

I was driving home from the fitness center when suddenly I was feeling like I wasn’t doing my job as a mom  by not even really exposing them to Halloween. I’m quick to say they don’t get it so why even bother. Why even bother talking about Halloween. I’ve done that with other things too. Shame on me. That’s not how it works. The only way they are going to learn about Halloween and other things is by actually exposing them to it.

Alyssa has been wearing her costume (having no clue that it’s considered a halloween costume) non stop the past couple days so I knew she would be ready to go. So I decided if I can get Courtney in her costume we would be going trick or treating. By the look on her face when I saw her, I was guessing it wasn’t going to happen. She proved me wrong…I had no issue getting her costume on. I also made sure I grabbed her talker because I was going to teach her how to say “Happy Halloween”. Joe and I got the girls ready and we decided we would just try a few houses. We got to the end of our drive way and went to walk next door and she immediately dropped to the ground. I tried to coerce her, but it wasn’t going to happen. Baby steps…she got her costume on so that’s a plus! Alyssa had fun though! I got back to the house and was proud of my crew for trying. And from here on out, it is worth it to at least expose the girls to things. That is the only way they will learn.

 

It still stings sometimes…

When Alyssa was born, I knew there would be a day where she would surpass Courtney in a lot of developmental areas. I also knew this day would come early on. That day came a couple of months ago. When I started to notice her skills were zooming past Courtney’s, it was bitter sweet. I was able to see the positive side of it. It meant Alyssa was reaching all the developmental milestones. It meant there’s a strong chance Alyssa won’t have autism. It also means that Alyssa is already becoming the “big” sister,  Courtney’s “keeper”, mommy’s helper and so on.

Like I said, the day came a couple of months ago so I’ve had the time to swallow this and for the most part I have come to terms with the fact that Alyssa, who is 2 years younger than Courtney, is way ahead of her developmentally. In fact, I have learned to be grateful. Though it’s been bothering me this past week. I attended a two day conference last week and this week about an assessment/teaching tool that is quite often used with children with Autism. In fact, it is a tool used with Courtney at school and in therapy sessions. When school and therapists shared this with me, they showed me how she scored in the lowest level. At this conference, I got to see what the age equivalence was for the levels. Level 1 is 0-18 months. No, I am not surprised by this. Like I said, I can tell Alyssa has passed her up developmentally and Alyssa is almost 24 months old. Yet this still stung, and has been on my mind since.

This made me think of a meeting I had during one of my first years of teaching. I had this little boy whose mom was pretty educated when it came to child development. I remember the team being surprised by how surprised mom seemed by the results of an assessment. It dawned on my back then, that it wasn’t that she was surprised, it was the sting of actually hearing it.

I’ve been in the field of Autism for a while now. None of Courtney’s behaviors or characteristics surprise me. Nor does the fact that she is scoring so low on an assessment. However, that does not mean it doesn’t sting some times.

The Future…

I don’t know if I will ever share this post. There are some thoughts I’m just not sure I can share. Today my future was staring me in my face. I was at Lifetime Fitness doing my workout and some young adults with special needs came in the area I was working out in. They weren’t there to work out though. They were there with a lady and they were there to volunteer. They were there to clean the equipment.  Like every mom, I have had dreams for my girls since the day they were born. Words can’t explain the emotions you feel as a mom when you slowly watch those dreams not become possible. There are days where I can tell myself that I still have dreams for Courtney, they are just different, but there are moments that it hurts to think those original dreams are gone. I watched these young adults clean workout equipment and all I can think about was how that wasn’t what I dreamed for my little girl. I know what some of you are thinking…she’s 3, how the hell do I truly know those original dreams of mine for her aren’t possible. Very true. When it comes to autism, there is no way of knowing. What I do know though is my daughter at the age of 3 is a good 2 years behind in most areas when it comes to development. As a teacher, the students that I have taught in the years past who were that low when I had them in preschool, are still needing all the support when it comes to life skills. I don’t want to sound like I have already given up hope, but I do feel I also have to be realistic. The hopeful side is still holding on to some of those dreams, but the realistic side knows that it is very likely that my daughter may be cleaning exercise equipment as a volunteer with an adult near by teaching her how to do it some day.

Mama Bear…

I’ve seen all these shirts on different sites referring to moms as mama bears, whether it be an autism shirt or just a regular old shirt that says Mama Bear. I never really stopped to think what the term “mama bear” came from. The other day I was venting via text to my good friend from school and she replied back with something comforting about me wanting what is best for my child and then said “mama bear”. It was then that I realized the meaning behind it. It is well known that you don’t want to bother an animal, such as a bear, when they are with their babies. They are on higher alert when they are trying to also protect their babies. I quickly noticed the change in my personality once I had kids. Boy did those mama bear instincts kick in. Then those mama bear instincts really kicked in gear when it became clear that Courtney needed me to be her voice, her advocate. I’ve had to go out of my “no confrontations” box more than I ever imagined I could. But when protecting your cub, a mama bear is ready for anything. So I now own this sweatshirt to remind myself that I’ve got this!

Sensory needs…

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Let’s talk sensory issues. If you know anything about Autism Spectrum Disorder (ASD), you know that most who have ASD have sensory issues. And the range of sensory issues is unimaginable. As a teacher, as soon as I think I have seen it all when it comes to sensory issues, I get a student who has a sensory issue that shocks me. Courtney’s sensory issues are pretty common. Loud noises can bother her, needs to be constantly moving, and the list goes on. She has always had this thing with rubbing things one her lips. She has done this since a baby. I think my mom was one of the first one’s to notice that she had to rub food on her lips before eating it. She explores toys by rubbing them on her lips. As much as she loved rubbing things on her lips, she barely ever put things in her mouth. I probably had too much trust in this behavior, but I never worried about small toys being out with her. It was very eye opening with Alyssa once she started putting things in her mouth. Toys that I never had to hide, needed to be hidden. Alyssa got through that phase and now seems to know what things she can and can not put in her mouth. But the toys are being hidden again. This time, for Courtney. She has suddenly become EXTREMELY oral. Everything, and I mean everything is going in her mouth. I caught her chewing on an emery board the other day! An emery board! I cringe just thinking about it!

So how do you address a sensory issue such as needing to put everything in the mouth? One way is to find a way to meet whatever craving they are seeking more appropriately. So in Courtney’s case, replacing the toys, paper, emery boards with things that are more appropriate to put in the mouth. Things such as food. But wait…she’s extremely picky about the foods she puts in her mouth. Chew toys also help. We have brought out all the old teething rings out and bought all different types of chew toys. The coolest thing happened tonight. We were playing in the family room and Courtney suddenly ran to the fridge. Typically she opens up the fridge which means she wants milk. This time she opened up the freezer. She then left the freezer with one of her teething rings. I was so excited to see her search out what she needed instead of me handing her the items. I was so excited! It’s the little things!

Sensory processing fascinates me. What is making Courtney need to put things in her mouth? What makes her anxiety level sky rocket any time she hears a vacuum cleaner? What make her need to hang upside down?