Sundays with Gage – Kinship

I had breakfast with a mom whose daughter has had group sessions with Gage every Saturday morning for over a year.  We lead lives on opposite ends of town and have different daily struggles (she has 4 daughters!) but once every month or so we try to schedule a meet up while they are in group to vent, question, learn and feel a kinship to someone who knows what in the hell we are going through.  Having her to talk to is a gift and I always feel like my steps are lighter and my fighter mama mode is fully charged after we’ve gotten together and I hope I provide the same for her.

Our kids are a puzzle and sometime we try the same strategies and sometimes we don’t.  Going gluten-free didn’t help her daughter at all while it helps Gage immeasurably (I ALWAYS know when he has had contact with gluten). We sort of tried the B12 shots at the beginning of the year and she is planning to start them soon. We both are having success finally potty training our kids and have the same stress over where to send our kids to school, how to run our home programs, and how best to utilize our time and money.  This morning she mentioned something that people who don’t have kids on the spectrum don’t realize.  We are in constant survival coping mode.  She has to do things for her youngest daughter that she never even considered with the other three.  It is exhausting mentally and physically.  It’s only when we get together and talk that we can laugh a little and acknowledge that it is a struggle.  Sometimes it’s overwhelming and we are both ready to send them to school on Monday (yay!).

She listened as  I told her that we had taken Gage to the Cleveland Clinic yesterday to test for Cystic Fibrosis. Without going into all the details as to why we tested it was exciting that after I got Gage home from group and checked my email I saw that the test came back negative! How fulfilling it was to be able to send her a message that I have one less thing to worry about today.  It was a sweat test, non-invasive and took about an hour.  Here’s Gage with his Daddy during the test watching Looney Tunes.  The specialist told us to expect him to cry but this is not Gage’s first scary test so I knew he’d be fine.  This kid is a trooper and even if sometimes it is a struggle I wouldn’t change a thing about him.

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30 thoughts on “Sundays with Gage – Kinship

  1. Rita H DuffyGal says:

    Glad you have this companionship and I know how it feels, having a child on the spectrum. It has made our lives much more difficult but much more interesting, and I wouldn’t trade a moment of it. It shaped our personalities further as well as my son’s. It affected his two sisters, but they are better people for having lived with someone who has special needs.

    DId you ever read the essay, Welcome to Holland? It’s something every parent should read. I belonged to an online forum support (OASIS) for years, one in-person, and kept in touch with other parents by email. I also arranged play dates for awhile with kids of similar issues. Now my son is an adult, but I did all this and homeschooled him half of his academic career when public school got too much for him and IEP’s were not followed.
    Also happy about your test result! My son was also tested with that at age 4 and we were worried about a failure to thrive label given after his test came back negative) because he was so skinny then. Well, it turned out to be just a period of his life of being super-picky about food and always on the move, and within a year or so he went up to an average weight.
    Good luck with your son!

    • stacybuckeye says:

      Thank you so much, Rita, for sharing your story! I’ve mentioned to Jason how boring we’ve become and he always tells me it’s to balance out our very non-boring kid 🙂 I have read Welcome to Holland, but it’s been awhile and I should orobably take another look. I wish that I had more support. I don’t have a group but I do have a few mothers who get it. I’ve attended workshops here and there, but it would be nice to find a group online or in real life that was active. I’m not opposed to homeschooling, but right now many of Gage’s struggles are social ones, so the more he’s in school the better he operates. Interesting about the CF test, I think the only reason our dr. agreed to order it was because he’s gained next to nothing since last October. Still gaiining inches just not pounds! I hope he recovers as your son did.
      Again, thanks so much for sharing. It is appreciated.

  2. sandynawrot says:

    I’ve got a couple of friends with kids on the spectrum, so I see them struggle like you are struggling. Having a friend who is going through the same thing is something you can’t even put a price on. My son isn’t on the spectrum but has ADHD, anxiety and depression and I DO understand the constant worry. As he gets bigger the problems get bigger. Sleepless nights sometimes. And a huge WAY TO GO on the negative test results!!!! God knows you really don’t need anything else on your plate!

    • stacybuckeye says:

      Kids on spectrum often suffer from ADHD, anxiety and depression so you get it 🙂 It’s just that my kid has a few extra things to work on. Which he is and he’s making such great progress so I shouldn’t complain!

  3. Heather says:

    It makes things so much easier to handle when you know you aren’t alone. I’m so happy that you’ve found kinship with her. I can’t even imagine how hard it can be at times. You are an amazing parent and Gage is so lucky to have you two as his parents. Always thinking of you and your adorable family. Gage is just a sweatheart!

  4. Mary says:

    Thank goodness for someone who understands exactly what you’re going through. I’m so glad the CF result was negative. Here’s to a good school year for you all!

  5. Nise' (Under the Boardwalk) says:

    So glad you have a understanding friend! It is such a blessing. I have two friends with kids on the spectrum, and I can only understand so far. I remember that CF test, we experienced that with our middle son and the waiting was awful, glad you got quick results

  6. boardinginmyforties says:

    You are a rockstar momma and your son is so lucky to have you to fight for him and care about him so much. I’m glad the CF test was negative and glad you found someone who understands your struggle so you can support each other.

  7. Zhan says:

    We are in constant survival coping mode. — This is so true!!! I have found myself being anxious easily and frequently. And I am happy that Gage’s test result is negative!

  8. Literary Feline says:

    I think it’s wonderful you two have each other for support. Even though your experiences may be different, it sounds like you still are able to learn a lot from each other in addition to getting that moral support.

    And what wonderful news about the Cystic Fibrosis test results. I am so happy for you–for him, Stacy. I know that must be a relief.

    (Yay for potty training successes too! Mouse may be potty trained, but I still remember what a struggle it could be at times–it wasn’t as easy as it is for some parents–you know, the ones who train in three days or less–we wish, right?!)

  9. Teddyree says:

    Having a friend who ‘gets it’ can make all the difference, someone to bounce ideas off, laugh, cry, swear with, hug, someone to stop you from tearing your hair out lol. Yay so happy that Gage’s CF test was negative!!

  10. readerbuzz says:

    You are right. My friend’s son is in his early twenties. It was a big deal for her when I took him to the big Houston library one day. I need to do that again. I forget how rare it is that she has personal time.

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