Happy St. Patrick’s Day! To celebrate we went on a shamrock hunt in our neighborhood and some of my family members did a Group FaceTime call to share favorite Irish recipes. Definitely both highlights of the day.
The low…I almost didn’t blog today because over all I was just not having it. I was overwhelmed by the e-learning that was provided for my girls. Glad their teachers are providing stuff but not sure this will go for my girls. I went in today with no structure on how to handle it so it pretty much ended up a bust. Lesson learned. Lesson plans and schedule are set for tomorrow. Here’s to day 2 of homeschooling going much better.
The highs…One awesome part of today started at 7 a.m. Why 7 a.m.? Well…my girls actually let me sleep until 7 a.m.! I’m excited when we make it to 6:15 or 6:30 on a no school day. 7!!!!! Wow!!!! Thank you, girls!
As I mentioned in the beginning, we went on a shamrock hunt. I’m loving the walks we are going on. We use to take them all the time but our schedule hasn’t allowed us too during the school year. Definitely a plus side during this crazy time.
My last highlight of the day was taking these selfies with the girls. They are my world. I miss them so much while I’m at work. Another perk right now is being able to spend more time with them.
Today, in the world of COVID-19, we don’t have school, we can’t go eat at a restaurant, we can’t workout at our favorite gym, and my 9 siblings and I are officially too many people for a gathering. I think the hardest part of all of this is the unknown of how long it will last.
Today is technically the first day of school closing. Tomorrow our district starts e-learning. So starting tomorrow I’m going to try to keep somewhat of a schedule with the girls so we feel some sense of control during this scary time. What well that schedule look like? It’s still to be determined. How is it that I do this for a living yet when I’m home and expected to do it with my own children, I’m beyond overwhelmed?
Today’s low points…I decided today was the day that I talked to Alyssa about all that is going on. Courtney’s teacher actually shared a social story about the virus that is geared towards little children or children with special needs. It gives the basic information of what it is and why we will be off school. I was really nervous about this since Alyssa gets very anxious whenever you talk about Illnesses. As soon as the story mentioned the symptoms she started to panic and insisted I stopped reading. We did end up getting through the story and then we went on with our day. What was really difficult was hearing Alyssa ask to see her cousins. I explained to her why we couldn’t and she broke out into tears saying, “I’m not sick, I want to see them.” It broke my heart.
High points…it really was a good day. I felt like I was able to keep them busy and fun was had while doing it. One of my sisters shared with me a post she saw on Instagram. It’s an at home bucket list for kids. It’s a lost of ideas of fun things you can do at home. I decided to print it off and pick one thing to do off of it. Our fun thing today was water fun in the tub. They put their suits on and we played in the tub. They had a blast and they were having fun TOGETHER! It was truly priceless. I’ve decided I’m going to take as many pictures as I can during these few weeks and then make a photo album of it. Years from now we will look back and look at how much fun we had during such a scary time.
I want to end with a tip to those with family members you can’t see during this time. Find a way to video chat! A few of my family members have done it the past could days. It’s such a fun way to still spend time with your loved ones while practicing social distancing. It is probably what will get me through this.
In trying to figure out how I wanted to go about blogging during this crazy time I decided to follow suit of a favorite podcast of mine #themamabearpodcast. She ends each episode asking her guest three questions; are they sleeping, what was a defeat, and what was a win. I’m going to focus on 2 points for each of my posts. 1. What were the highlights of the day. 2. What were the low points of the day. Here we go!
The low points… I don’t want to dwell on the low points but I do think it is important to share why a time like this can be extra difficult for families with children with special needs. Meltdowns were had today by not only Courtney but me too. The two hardest ones happened in the car. We left the house to get lunch via drive thru at our two favorite places; Panera and McDonald’s. This is not our normal Sunday routine and Courtney knew that and therefore protested on and off. When we got back home with our food she cried about being home. She refused to get out of the car. It took me 10 minutes to literally pry her out of the car. She is as strong as on Ox, folks!
The other low point was at bedtime. Courtney insisted on leaving the house so I put her on the car and we drove around. Seeing her cry broke my heart. So early on in this break and she already is so confused. It just broke my heart.
The high points…one of the best parts of the day happened in the same car ride I said was a low point. Courtney kept ctying during the car ride at lunch time. At one point Alyssa says, “don’t cry Courtney. Here you can hold my hand.” When we stopped at the light I looked back and saw them holding hands. Oh Alyssa, you are wiser than your years and mommy loves you!
My other high point was receiving a text from one of Courtney’s therapists. A simple text asking how we were holding up. It came right after the car ride at bed time. It came just when I needed it. She proceeded to let me vent via text and shared some suggestions on how to help both girls through this break. Folks, the therapists we see aren’t just therapists. They become family. This particular one has been part of our team since Courtney was 2. Her check in meant the world to me. Thank you, S.T.! Love ya!
There really was a lot of other fun moments. We played, we went for a walk, I did a family FaceTime and actually sat on the couch for a few minutes. We will get through this!
Back when we were on Winter Break I blogged about how difficult breaks are for Courtney (and others with autism). During breaks there are changes in routines and less structure. A lot of different behaviors became a part of our life during winter break that we just recently felt like we recovered from. (Though Courtney is still sleeping in my bed.) Though it was a fun break it was also a tough break.
Well…here we are again. An unexpected and possibly very lengthy break. This break brings on additional challenges. Not only is she without school for several weeks but she could end up without therapies. Let’s just say Im just as concerned about the possible regression Courtney will make (and my sanity) as I am about catching this virus.
How am I going to make sure I don’t lose my sanity (who am I kidding, I lost that awhile ago) during this pandemic? I’m going to attempt to blog more. I’m going to share the ups and downs of being “locked up” with a husband going on serious sports withdrawal, a 6 year old with autism and a 4 year old “teenager”.
Until the next post….stay healthy all. And if you are another parent like me…good luck, we’ve got this!
I shared in a recent post that Courtney wondered out of the house and was missing long enough for the police to be called. The positive part of this awful incident was learning about a program that the city we live in has. As of Wednesday, Courtney is officially a part of the program. On her ankle you will see a transponder that she will wear 24/7. If she were to ever go missing in our town, the caregiver is to call 911 and tell them a fastrack client is missing. Police will then come to the location she was last seen with equipment. This equipment sends out signals to her transponder and in return the police will be able to see where she is located.
It was hard to get it on her at first but she is now tolerating it. We will probably look into a GPS at some point since that will work wherever we are but until then, we are glad we have this peace of mind at home.
I was listening to a podcast and they were talking about advice for parents early on in the autism journey. One piece of advice they gave was to find your people. Your people that truly get it. Yes, you need your people who will support you even if they aren’t in the same boat but you need people who are on the same journey. I fortunately didn’t have to look far for someone who gets it. I just had to look within my immediate family. In fact, she probably grabbed on to me before I knew I needed her. My older sister, who was 10 years into the autism mom journey, was probably one of the first to notice Courtney had autism. From the moment I knew the direction I was headed I knew my sister was going to be my person when it comes to autism. She has helped me be Courtney’s advocate, she has given me advice and an ear to vent to. She has even helped me step a way from it all. It’s a a special bond I will forever be grateful for.
You hear the stories on the news about children with autism wandering away from their house. I’m sure there are some out there while hearing these stories who wonder how a parent/caregiver can let that happen.
I can now tell you from experience that when your child is what you call an eloper or a flight risk, it doesn’t take much for the stories on the news to become a reality some day.
First, I should say that Courtney is home safe and sound and wasn’t actually missing for long at all. It did not happen on my watch but how it happened could have happened with any one. But because it didn’t happen on my watch I’m not going to go into details of how it happened. But I will share that the police were called pretty quickly. Fortunately she was found 4 doors down before they even arrived. So a shout out to this caregiver for handling it the best she could. Not sure I could have handled it as well.
I also want to give a shout out to my city’s police department. Because Courtney is an eloper I’ve always wondered what additional precautions I should take not only with “Courtney proofing” the house but with alerting the police department but I never did more than wonder with the later. I know longer have to wonder. The positive part of today’s incident is we learned about two amazing programs.
The first program is the police provide the child with a tracking device. It’s a transponder that can be worn on the wrist or ankle. When a child goes missing, when you call the police they will show up with a device that sends off signals to the transponder and then in returns shows them the location of where the child is.
The second program is called “Caring Hands”. This program is with both the police and fire department. They put on file a picture of the child along with details about the child including different suggestions on how they can help the child if they are in distress or things to avoid doing so they don’t set them off more.
As much I will hope We will be making use of this will never happen again, this is our autism. This is our reality. Therefore we will be taking advantage of both of these programs. I am so grateful that there are programs out there to help keep Courtney and others like her safe.
This is so much more than a picture of Alyssa and Courtney swinging together. It’s a picture of my brave little Courtney swinging even though she has an anxiety when it comes to her feet not being grounded. She doesn’t like swimming in water higher than her thighs and she doesn’t like swinging. Only thing her OT’s and I can figure out is that she loses her sense of control. It is actually a goal we’ve been working on for a while now with her private OT, her being more tolerant of different types of swings. So here she is, swinging next to her sister. This lasted just over 5 minutes. I was even able to push her some! Way to go, Courtney!
Oh…as you can see, she has no issues with bare feet outside. Oh Courtney!
We’ve been on this journey of helping Courtney find a functional way to communicate through the use of a talker for over 3 years now. It’s been a tough journey with a lot of ups and downs. As frustrating as the regressions were we kept plugging away and pushing knowing the ultimate goal is her learning to communicate.
This last regression was to be expected with all the changes in her life this fall. As I’ve said before, learning a communication system is like learning a new language. She left her school team that helped introduce and learn her “language”. We said good bye to our nanny who again, learned her language and helper her progress. She had to start with not only a new school but a new nanny who did not know her “language”. You can’t teach a language if you don’t know it yourself. It took time and patience and more work from the home therapy team and me. Though regression was expected, it’s never easy to watch.
Through every up and down, I felt like we have been stuck at this phase where she only uses it to request foods, drinks and label things when is asked. As we got through this last regression, we are not only where we were before the regression but I feel we are finally seeing glimpses of her going beyond requesting for the same things. We are more consistently seeing two work requests like “want milk” instead of just ‘Milk”. And we are seeing more spontanious novel requests that we have never seen before! I am ecstatic!
The other day Courtney kept grabbing me and bringing me to the master bathroom’s bathtub. I grabbed her talker and asked her what she wanted. She carefully scanned the pictures and pressed “wash”! Oh my goodness! She told me she wanted a bath! Darn right I stopped everything and got the bath ready. Well, she didn’t want a bath, she hates baths. She wanted water in the tub so she can lean over and play in it. That detail doesn’t matter and we will work on that, but it’s a start!
This morning we were playing downstairs and she grabbed her blanket, iPad and grabbed my hand and brought me to the stairs. I went back and grabbed her talker and asked her what she wanted. She scanned her talker with intent and then requested “sleep”. I know she didn’t want to actually go to sleep, but she loves sitting on my bed and watching her ipad so I was able to figure out what she meant. Again, a novel request that does not involve food!
Yes, the average person off the street would still be confused by these requests, but I was able to figure out what she meant a lot easier than her typical way of grabbing me and bringing me to what she wants. I am so proud of her AND her amazing team as we learn this “language” together.
Autism: A Little Wild 