Daisies In The Sun



Holy cow, this child of mine is oh so close to being one year old.  It’s hard to believe she’s been in our lives for this long, but it’s even more difficult to remember a time without her.  She’s developed a love for animals (especially their ears – apologies to our cats) and has improved her hair pulling technique (to avoid becoming her victim, I suggest walking a wide berth around her – she can snag you without you even slowing down).

Good news: Avalynn got approved for a division of Medicaid titled “Disabled Child Living at Home.”  It is not based on the parents’ income, but instead based on the child’s percentage of delay in development.  In SC, we called it “TEFRA,” (Tax Equity and Fiscal Responsibility Act), but both titles are under the Katie Beckett Program, which is a special eligibility process that allows children with long term disabilities, mental illnesses, complex medical needs, etc, who are living at home, to qualify for Medicaid.  Katie Beckett was a child with complex medical needs caused by a brain infection she contracted as an infant which then caused her to go into a coma and come out of it with partial paralysis and difficulty breathing.  President Ronald Reagan signed the Katie Beckett waiver, allowing her to receive treatment, paid by Medicaid, in her home, instead of in the hospital.  Because of this waiver, children with Down syndrome and other special medical needs are receiving healthcare their families normally would not be able to afford.  I’m sure many of you have heard of the proposed Medicaid cuts under President Trump.  While most assume that Medicaid is only used by “low income” families, that is not always the case.  Our family does not qualify based on our income.  Many of the families we know with children with DS would not qualify based on income.  But having a child with special medical needs is not easy on the finances.  Whether the children have other health issues or not, therapy is needed to help them develop.  I included this in the hope to make everyone aware of who is affected by Medicaid cuts.  Without this Medicaid coverage, Ava would still be waiting, for who knows how long, to receive therapy that she so badly needs.  We are incredibly thankful for the Katie Beckett Program for allowing us to receive the care she needs.

In our case, Avalynn is finally going to receive physical and speech therapy.  As I stated in my last post, we have been on a waiting list to receive therapy since the beginning of April because there is only one rehabilitation facility in our area covered under Early Intervention.  The moment I received the letter stating she was approved for Medicaid, I called another rehab facility to get her evaluated for therapy.  Due to a cancellation, they were able to see us the following week.  So just last week, Avalynn was evaluated for physical therapy and speech therapy.  As soon as they get everything approved through Medicaid, she will begin receiving both therapies twice a week.  They suggested 45 minute sessions each time, but judging how she liked the evaluation, I don’t think she’ll last that long.  Avalynn got So. Mad. at the physical therapist because she kept making her work to get to the toys.  (Maybe I shouldn’t have just been giving her everything she wants at home…)  We were told Ava needs to work on strengthening her oblique muscles.  She has only been using her rectus muscles when using her core, which has resulted in a slight bulge of muscles in the middle of her tummy.  The therapist said that once she starts using her oblique muscles regularly as well, it will draw her belly in and help her to get into a crawling position.  As for her speech evaluation, it was mainly just the therapist asking me questions about what Avalynn can do/say.  There were a lot of questions I had to answer “no” to, and let me tell you, that wasn’t easy.  I knew that Ava was behind in speech development, but when you have to say your child can’t do 70% of the things you’re asked, it’s hard.  Our instincts are to exaggerate what our children can do to make them seem like they’re further along, but I knew this was not a time for me to boast.  This was a time to be truthful and humble to make sure Avalynn gets the exact help she needs.  Based on her speech evaluation, her language skills are in the 3-6 month range.  I am so ready to get this therapy ball rolling and watch my little girl succeed.  She’s already begun to master some of the things the physical therapist told us to work on at home, and  I am looking forward to what she will conquer next.

For those who don’t know, there is a summer camp I have been a part of for 16 years that I love with all my heart.  I love it so much that I just can’t take a summer off.  An out of state move, a pregnancy, and a baby haven’t stopped me yet.  Two years ago, I spent two months away from my husband so that I could spend the summer at camp.  Last year, I spent four weeks as the CIT (counselor-in-training) director while being seven months pregnant.  This year, I spent two weekends away from my family so I could serve as the trip coordinator for camp (this was the first time I was away from my baby overnight EEK).  I also took Avalynn to visit camp at least once a week all summer.  We spent our 4th of July at camp as well.

It was great to see all of my fellow counselors and long-time campers love on my little one,  but this past week of camp was the one I’ve been waiting for.  You see, this camp of mine is primarily a Girl Scout camp, but the last week of every summer, it transforms into a volunteer-based camp for children with special needs, ages 6-21.  We have campers with Down syndrome, autism, food allergies, cerebral palsy, ADHD, and others.  This is the week of camp where I first met John, my husband,  8 years ago, when he volunteered for the week.  These are the people I drew my strength from when I first learned of Avalynn’s diagnosis.  While I kept it a secret from most of them until she was born, it was knowing that they would be there in full support that helped me accept it.  The first person I told of her diagnosis was the mother of one of my long-time campers.  I had hoped to have a girl so that she could grow up at my camp and love it as I do.  Because of this week of camp, that dream can still come true.  I took Avalynn to visit last Saturday for staff training, and I loved sharing her with all of the people on staff.  We went back the next day with John in tow for the arrival of the campers.  It was so great to watch each camper come in and immediately be drawn to her.  They all touched her feet and asked her name and said, “ohh she’s so cute.”

One of the things I struggle with is how forward to be about her diagnosis with other people.  There was no need with these people.  The parents commented about how cute she was and how we must start ’em young at this camp.  One camper’s mom who I’ve known for years quietly asked if she had any other health problems and smiled when I said she didn’t.  She said her daughter had to have heart surgery when she was a baby, and she was thankful Avalynn didn’t.  While learning of Ava’s diagnosis was hard at first, it was never really scary.  I have this camp and these people to thank for that, and I am forever grateful.

Enjoy the rest of your summers, friends.  Make tons of great memories, smile every day, instill good qualities in your children.  Believe in the power of summer camp and find your tribe.  Until next time.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s