Saturday, June 1, 2024


My daughter came out a few weeks ago, not as gay, but as woman living with MS.  She not only told everyone who follows her on tiktok and instagram, she also raised $3000 for the MS Walk.  She's a strong, young woman and is followed closely by a neurologist.  Prior to telling everyone, she had only told a handful of people about her diagnosis two and a half years ago, and now it's out there, which is a good thing.  People need to see that MS doesn't stop your life, it just changes it.  She's on immunotherapy and that's keeping the disease at bay but it does make her susceptible to infections.  A rock and a hard place.  Right now she's doing her thing, cooking and making videos and she loves that.  I could never give up a job that provides benefits, a pension and security but she did and I'm proud of her for doing that, for being braver than her mama, for following her passion.  

Jack is starting school in September, something that makes me happy and nervous in equal parts.  I have ADD (Attention Deficit Disorder), as do my children.  My son was diagnosed when he was probably about ten years old, I brought it to the doctor's attention and asked for an assessment.  That was thirty years ago.  When I started reading about ADHD (Attention Deficit Hyperactivity Disorder), I realized that I had it as well, just without the hyperactivity, although some would argue that I am hyperactive.  My middle daughter was diagnosed about a year ago and Katie, I just assume she has it as well, along with all her other stuff.  

And now there is Jack, who gets in trouble at daycare for not listening, not paying attention, not sitting still.  He has one friend/frenemy at daycare who rats him out on a regular basis, telling me, "Jack didn't listen today."  It upsets Jack.  My husband struggles to understand it as well.  Jack can't sit still, he rocks his chair because it's soothing.  He gets the zoomies because it feels better to discharge all that pent up energy.  Sometimes he can hyperfocus on something but then gets in trouble for not listening or paying attention to other things.  He forgets what he's agreed to, because he wasn't paying attention when he answered, and then gets upset.  It's hard for him.

I'm sixty-one and I've had years and years of living inside this brain.  I cope and to be honest I appreciate ADD.  It allows me to pay attention to more than one thing at a time.  I am easily distracted but I also notice things that other people miss.  I get a lot done in a day, both at work and at home.  When I clean the house I stop and start different things often.  I'll stop in the middle of vacuuming because the dishes are bugging me, so I do them, go back to vacuuming and then get distracted by the laundry.  Evenutally it all gets done but sometimes it's hard to finish one thing before I move on to another.  Getting through school though, can be hard with ADD or ADHD.  Schools have a lot of written and unwritten rules.  Schools don't appreciate neurodivergence and I'm so glad that there is a word like neurodivergence now, instead of calling someone bad or a weirdo or a loser.

A lot of research has been done on neurodivergence in the past thirty years and I'm realizing that now because of Jack.  I'm learning things about myself that help explain why I do things and how my brain works.  I'm also learning how to help Jack.  I explained to him that his brain works differently than some others and that's okay.  It's not a good or bad thing, it just is.  I want him to succeed at school, I want him to feel good about himself and I want him to understand himself.  

The more I read and learn about ADHD, the more my life makes sense and I hope it will feel the same way for Jack as he goes through school, grows up and lives with his brain.  Different is just different.  It was the same way with Miss Katie.  She's different in some ways but in most ways she is the same as the rest of us.

The other day Jack had done something and he was upset about it, frustrated with himself and frustrated because he couldn't blame others.  I asked him if he was mad at himself and he said, "No!  I'm sad at myself."  He's starting to understand and that's a good thing.  




24 comments:

  1. We still have so much to learn about neurodivergence, don't we -- and about MS, for that matter. Congrats to your daughter for raising so much money for the MS Walk!

    ReplyDelete
    Replies
    1. It's only as I've gotten older that I have realized how differently my brain works compared to others and it's so interesting finding out why that is.
      She was very proud of raising so much money for MS and deeply appreciated getting so much support.

      Delete
  2. Your daughter did a good thing and raised a lot of money for a really good cause. I'm a bit OCD, but not over the top. Jack already has a big advantage. You.

    ReplyDelete
    Replies
    1. I learned a lot about normal child development and language development because of Katie. Now I get to learn more about ADHD and that's a good thing, helps me and it helps him.

      Delete
  3. Jack is fortunate that you recognize these issues and can sympathize with (and advocate for) him! Fortunately I think most schools are pretty savvy about neurodivergence these days and recognize that it's an issue many people deal with.

    Honestly, not to minimize it, but I often feel like many symptoms of neurodivergence are pretty normal. Even now, as I'm reading your blog, I thought, "Oh, shoot! I have laundry in the dryer!"

    ReplyDelete
    Replies
    1. I think with neurodivergence, it's not the what but the degree to which something is. I've already talked to his kindergarten teacher about his ADHD and how the school deals with kids like him. I am hopeful that things have improved since thirty years ago.

      Delete
  4. It seems to me that I've heard of a number of women celebrities who are living with MS. Selma Blair and Christina Applegate for two. I wonder if it is more common now or just more frequently and accurately diagnosed. I admire your daughter a great deal. You raised her right. You gave her confidence and strength.
    And you are raising Jack right. When we know better we do better and you do know better for sure and will help Jack find his way in this world. You already are.

    ReplyDelete
    Replies
    1. I think my daughter is resilient because of how much of my time was taken up by Katie and how little time I had for my middle daughter. I can't change that but I am thankful she turned out to be tough enough to survive.
      MS has very high rates in Canada, some of the highest in the world, and they're still not sure what causes it. Like so many things, I imagine the cause is multifactorial, like cancer. It's not usually one thing but many things that happen to come together.

      Delete
  5. Growing up is hard work. Jack has you, that's good. Also, massive congratulations to your daughter and her effort and outlook on life.

    ReplyDelete
    Replies
    1. When my daughter was first diagnosed she was going to buy an expensive cane but she seems to have backed off that idea and she's doing well, other than lots of Covid.
      Growing up and just life in general is hard, isn't it?

      Delete
  6. I'm glad that your daughter is doing well and has come out as someone living with MS. I think she'll find a community that way and be able to keep up on the latest happenings and treatments. Neurodivergence is difficult to deal with, especially in a classroom with 30+ students and a limited amount of time, plus high expectations from the administration. I wish I'd done a better job with it, but I did try. My son-in-law has ADHD and is now taking medication after losing his last job because of it. His lack of concentration when dealing with projects was a huge issue.

    ReplyDelete
    Replies
    1. I'm glad she told everyone. It just makes life easier I think when people know what's going on, instead of making assumptions about you. She's not lazy, she has extreme fatigue from the MS.
      Schools are not set up for kids who learn differently, I found that one out the hard way. Jack would be far better off in a different kind of school, one that spends a lot of time outdoors but there is only one of those nearby and it's private, very expensive and a boarding school which I would not want to do to a child. We'll see what happens.
      I'm glad medication is helping your son in law. That must have been so stressful for your daughter and him.

      Delete
  7. That was good to read and gives, me a least, a better understanding of ADD.

    ReplyDelete
    Replies
    1. Thanks Andrew. I'm learning a lot more about ADD too.

      Delete
  8. Thank you for the explanation of ADHD. I really had no understanding of what it's like. It sounds tiring. Seattle has very high rates of MS, especially in women. The why of it is not known. I lived there for 22 years, and I thought about that sometimes.

    ReplyDelete
    Replies
    1. I'm so thankful that science continues to research the problems we deal with in life. The further you go from the equator, the higher the risk of MS. Obviously, sunshine and Vitamin D have something to do with it.

      Delete
  9. That's how I clean the house, too.

    ReplyDelete
    Replies
    1. This comment has been removed by the author.

      Delete
    2. Me too! I garden that way too. And pack for trips. And read books. Never thought much about it.

      Delete
  10. Schools are strange places where levels of conformity are required no matter how much diagnostic language is applied. In the end, children have to toe the line no matter how different they might be. However, nowadays there is at least better awareness of differences. Left handers are not forced into becoming right handers any more.

    ReplyDelete
    Replies
    1. Jack is also left handed. I can't imagine having to teach children of all different levels of intelligence, aptitude and neurodiversity. Sigh. I guess we'll see what happens.

      Delete
  11. I have a lot to catch up on here and hope that you all have been well. I can't believe how BIG little Jack is -- I'm so glad that he has you in his life. Your comments about ADD and ADHD are so interesting and helpful.

    ReplyDelete
    Replies
    1. He's gotten so big. Even though we're his grandparents, we've been caring for him for most of his life and have watched him grow and change and mature. It's been a hard gift but a good gift.

      Delete
  12. I resonate with your learning about yourself from your child! I always said that being with my son was like seeing myself in a fun house mirror; The same only exaggerated or altered. Turns out autism and ADHD are our labels. Still struggling and learning.
    I really love Jack's statement "I'm sad at myself." Feel that way more often than I would like...

    ReplyDelete