Alas, another school year is complete and we are officially into summer solstice as of today! Our days are getting longer, the sun is shining brighter and the mid-Atlantic area is fully embracing the first heatwave of the season.

Roslynn had a wonderful 3rd grade year and did fantastic with her first year of PSSA testing. She made a lot of progress with her reading and writing skills and continues to work hard practicing her math, so she is full prepared for 4th grade in August. She is eager to start 4th grade, where she will be with a new teacher and new classmates, and will have the opportunity to join orchestra and choir. She has been matched with the violin for her instrument, so Derek and I are excited for her to make good use of the 1/4 size Violin we purchased when she was 1 year old.

Unfortunately for Greyson, we had our most difficult year yet. 2nd grade was very difficult and stressful for him, his external staff, and Derek and I. Despite 10 IEP meetings throughout the school year, several additional meetings and correspondences sent between myself, the teacher, principal, director of special ed services and multiple additional staff, we did not feel like Greyson’s placement was a good fit for him. He is set to be in the same classroom next year for 3rd grade, with the same teacher, but Derek and I are unsure with what we are going to do. We have the opportunity to continue to send him to the Autism center two days a week like we did in the Spring, which I think we will do. But overall, I do not feel like his current school is a good fit for him, sadly.

Summer has been off to an interesting start. As I previously mentioned, Greyson was going to the Autism center twice a week beginning in February, until the end of the school year. We made the decision to invest the time and money to transport Greyson to the center Monday thru Friday for the entire summer, where he is at the center for 4 hours a day. Because the center is dedicated to providing a specific type of programming that teaches Greyson skills that will help him in the future (like showering, toileting, accepting no, reducing self-injury), we know we are investing in something truly beneficial for him. Since staring at the center, he has picked up on so many additional skills and has been having so much fun with the staff and other kids. He’s been making great progress and Derek and I are so happy he’s been having a good time with the other kids and staff.

With the rise in temperature, along comes the rise in the amount of seizures Greyson has. Heat is a large trigger for Greyson’s seizures and it seems that he’s been having frequent absent seizures and many partial seizures every day. He has required VNS intervention a lot in order to prevent and stop his seizures, but burnout from the lead on the nerve is concerning with overuse and the amount of times he is needing to be swiped daily. Luckily he has a Neurology appointment tomorrow where I can ask lots of questions from the doctor regarding the increase in seizure activity. Another positive is that after months and months of waiting, his long overdue ENT appointment with CHOP is coming up next Thursday, too. Naturally he would have the start of a sinus infection right now, so it seems like this appointment is finally coming at the most needed time. I’m hoping that the doctor will give us some insights about his immune system and whether he has similar sinus issues that I have. If he does, what would be the next steps we could take to get him some relief from the constant nasal congestion, infections and sore throats he seems to get frequently.

Derek continues to work with his agency in Lancaster and is providing services for Autistic kids at a summer camp program that his company is running. He keeps a very busy schedule and is often unavailable to help with any of the transportation and care for the kids, leaving the “Mom Taxi” job to me for the second summer in a row. The Autism center is about 40-45 minutes from our house, so I tend to stay in the area of the center when G is there to avoid wasting gas and time traveling back and forth. I use the 4 hours to “myself” to visit local cafes or starbucks and grab a seat with an outlet and plug in for the next few hours with a tea so I can work. Yes you read that correctly……I do still have a job and yes, I do still work 15-20 hours a week. I work remotely Monday, Tuesday, Wednesday and Friday and Thursdays I go into the office while G is at the center. I manage to do a grocery run on Fridays and spend weekends cleaning the house, doing laundry and going to family functions (and hosting if needed). I typically have no issues keeping busy and staying on top of all of the tasks needed to maintain our house, but recently, I have had a really difficult time with my energy level and overall have felt really achy and have had lots of pain when I get up.

Like most parents of children with Autism (or special needs in general), I have not slept since 2015. Roslynn was a preemie baby and the NICU had her on a great 12, 3, 6, 9 schedule, so by the time she was discharged from the NICU, she was sleeping great and her nighttime feedings were predictable. Greyson however; he did not sleep very well at all, especially after he turned 1. So I chalked my extreme fatigue up to the fact that I just don’t sleep very well and that Greyson’s nighttime escapades often wake me and keep me awake for a few hours. But then I thought about it….. I have lived off of no sleep for 8, almost 9 years, so there is no way that this is just now catching up to me. So, then I thought it could be my thyroid being out of wack again. I made an appointment with my doctor and requested labs be drawn to check my TSH levels and see if that is what was causing my extreme fatigue.

Now, when I say extreme fatigue- I mean falling asleep sitting up, mid text, talking to someone, working and emailing someone, sitting in a starbucks with my 8 year-old talking to me, fatigue. It gave me serious flashbacks to Mono and COVID (the first bout of it), when I was very tired, but x10. I received my test results a few days later and I had some weird markers for increased inflammation, dehydration and two markers for Lyme Disease. My doctor said she wanted me to have additional testing done, so she sent my labs out for further testing and a full Lyme blot test was done. So it turns out that I have Lyme’s Disease and it’s progressed into stage 2, where the joints are impacted. I was referred to a rheumatologist and was seen at an office in Wyomissing for a full evaluation. The pain I am experiencing in my feet, ankles, hips and back is caused by swelling in the joints and I was referred for Physical Therapy and had X-rays taken to look for any significant issues. I have arthritis in my hands, especially around my thumb and wrist bones and all over my feet and ankles, which accounts for the pain when I try to get up and move. Easy fix, just take some pain pills and be done….but because of my stomach issues, I can not take ibuprofen, so I have to use some cream to relieve the pain. Good to know that a 34 year-old can feel as old as a 94 year-old and a 94 year-old can feel better than a 34 year-old. So for now, I take the meds, use the cream and fingers crossed that I get my full energy back so I can keep up with my hyperactive (not so) little ones.