Good news roundup for the week of Dec. 24
A tribute to a mom; the joys of raising a disabled child; special school saved; child support raised to age 26 for Connecticut disabled children
Each week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email. What do you want people to know about the #medicalmom life?
Merry Christmas and Happy Holidays, dear readers. I have been taking it slow after burning the candle at both ends for too long. It’s nice this time of year to lean into the darkness and cozy vibes. I hope you are able to find rest during this time, too.
With the solstice behind us, the light is beginning to return and even in the darkness we celebrate the sparks of love and light. In order to show how common these problems are, I typically highlight failed policies and corrupt institutions in the news roundup but I think we could all use a break from that this week. News organizations around the world also must have felt so as there were more good news stories than usual to pick from. So, cozy up with your coffee or whatever else is part of your reading ritual and enjoy these good news stories with me this week.
Medical Motherhood’s news roundup
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Love What Matters: “Parenting A Child With Down Syndrome Is A Joy, Not A Burden—And It’s Time The World Realizes It”
[…]When Joel was young (and still sometimes to this day), people say ‘I’m sorry’ upon first hearing about our son’s diagnosis. This is one phrase that continues to frustrate us. We aren’t sorry for our beautiful child and for the amazing lessons we are learning. We wish people would instead say, ‘That’s amazing!’
[…]Although we have had so many wondrous experiences with Joel, it has not always been easy. Even in Joel’s generation, there were still times that his peers, their parents, and even some teachers were not as supportive of the inclusive mindset. As Joel’s parents, we must always remain vigilant and continue to advocate.
Routine is key to Joel’s independence and health, so when the Covid-19 pandemic hit, it was an especially difficult time since he no longer could work or attend his in-person programs. Joel struggled with anxiety, isolation, and depression. He would sometimes talk about his pandemic fears, and he became much less motivated to do anything.
We signed him up for online programs to create routine but the impact it had was limited. That’s when we encouraged him to spend more time on his art. Joel derived a great deal of joy from creating new art and while doing so everything else in the world melted away.
It was Karen who suggested to me that I make Joel a website for his art. She got Joel to describe each of his art pieces, and to talk about what doing his art meant to him. This provided some beautiful insights into his wonderful creations, and this all now makes up an important part of Joel’s website so that everyone can experience Joel’s art and the world through his unique perspective.
It was also during this time that Joel gave himself the nickname ‘J Positive.’ He knew he was struggling with his mental health, and he chose the J Positive name as a way to remind himself to focus on the positive and aim to overcome his struggles. We all agree that Joel is the wisest person in the family!
We launched Joel’s Art By J Positive store in February 2022. Customer feedback has been wonderful, and Joel’s uniquely joyous creations are spreading happiness and positivity around the world. A portion of proceeds are donated to organizations supporting individuals with developmental disabilities.
Although he still sometimes struggles today with anxiety and his mental health, Joel is continuing to make progress towards healing and he is on the path to recovery. His artistic outlet continues to be an important part of his healing journey.
Joel still brings challenges to us, but there isn’t a day that goes by where we don’t laugh! We are also blessed that his sister adores him and protects him with all her heart. Life is about the people who surround you. How lucky we are!
Being a parent teaches you patience, selflessness, and learning to live in the moment. Being a parent of a child with a developmental disability teaches you all of these things times ten. We believe that we are much better people for having Joel in our lives, and the world is a much better place with him in it.[…]
• From the Eagle Times (New Hampshire): “Seven Hills, state save school serving disabled kids”
I am sure that many in our part of the state have heard of Crotched Mountain School. For years, it was the best place for children with a physical or developmental disability.
What you may not know is that Crotched Mountain, unfortunately, closed its doors in the Fall of 2022. Parents had one month to arrange a different placement for their child. These kids have very special needs and, for many, going back to their public school was simply not an option. What to do became a huge concern for parents and education advocates alike.
State Education Commissionner Frank Edelblut learned about the situation and understood that the services that Crotched Mountain School provided were crucial to the welfare of these vulnerable students. He contacted the school’s owner and David Jordan, the president and CEO of Seven Hills and worked with them and negotiated an agreement, in record time, by which Seven Hills took over Crotched Mountain.
[…]Presently there are about 70 day students and 250 families are waiting for more of the school to open, especially for residential students. The building crew is working hard to renovate rooms and buildings to allow acceptance of the students who are waiting. Seven Hills recognizes that some students need continuing support after they “age out.” That’s where the “Villages” come in. It’s a place for older students to live and continue to learn and acquire life skills.
I am grateful that New Hampshire will continue to have care and education available for those with developmental, physical and intellectual challenges. Thank you to David Jordan, the previous ownership of Crotched Mountain School and Commissioner Edelblut for working quickly to assure the transition.
• From The Guardian: “My mum fought for the underdog all her life – and I was one of her biggest missions”
Mum died earlier this month. It feels like years, and at the same time it feels as if it’s not quite happened yet. Grief plays havoc with your sense of time. But my sister Sharon and I are lucky. There is so much to celebrate in Marje’s long life, not least the hope she gave us in her final weeks.
[…]When she returned to Salford, she found her niche – teaching children in a school for children with physical and mental disabilities. Marje was told that literacy was beyond many of the kids, but that wasn’t going to stop her. She became a second mum to many of the children. At weekends, she would take a few back home with her – these were very different times. There were mangled wheelchairs, toxins accidentally ingested, regular visits to [the emergency room]. Again, it didn’t stop her. She gave them such hope.
Her biggest mission was probably me. I got a mystery illness, and it went on and on. Our GP [primary care doctor] (my dad’s best friend) and the consultant told her I was a malingerer and that she had Munchausen’s by proxy. A more vile, and less true, thing could not have been said. She fought the GP, the medical establishment and Dad to get a second opinion. After a brain biopsy, I was diagnosed with encephalitis. Mum gave me life twice.
[…]A few days before she died, I thought she was on her way out. Her eyes glazed over, and she looked so otherworldly. “I’m going now,” she whispered to me. Where are you off to, Mum?, I asked. She lifted a finger and pointed to the sky. It was unusually confident for her. “You know what, Si, this has been so much nicer than I thought it would be,” she said.
After she died, my partner, Diane, reminded me of Maya Angelou’s words. “People will forget what you said, people will forget what you did, but people will never forget how you made them feel.” And Marje made people feel the best.
• From the New Haven Register: “Connecticut Expands Age Eligibility for Special Needs Child Support”
[…]Established Connecticut guidelines provide a formula for how child support should be calculated. The law also provides for departure from those formulas when appropriate. One such circumstance is special needs child support.
Existing child support laws in Connecticut historically addressed unique issues to qualify for support for special needs children. The circumstances surrounding a special needs child and related disputes can make what is already a difficult situation for parents even more fraught.
[…]Qualifying special needs child support now can be extended through age 26. Changes in the law became effective on Oct. 1. Eligibility criteria remains the same and continues to apply pursuant under the new statute.
This change is an important recognition that special needs children may require support even longer in life, allowing family courts to provide relief on a case-by-case basis that addresses individualized needs.[…]
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