Compulsive hoarding is a mental disorder that is just beginning to be understood. As a hoarder, I have acquired things over the years with a specific purpose in mind at the time of the acquisition, used some of those items for their intended purposes, forgotten the goal for different objects, but now that I find that they have outlived their purpose in my life I am struggling to rid myself of those same things.

You can read the start of my journey here.

Saturday, February 13, 2010

Of hoarding and rare disorders.

Last night, I watched another Hoarders episode. This episode was about a single man who had adopted 2 special needs children. His son was born addicted to cocaine and had several behavior issues as a result. The man was understandably overwhelmed, and he couldn't seem to keep up. I could really identify with him and his situation.

Our daughters could be considered 'teenage toddlers'. They've got all the emotional upheaval that happens in the years associated with puberty, but they've got the coping mechanisms and understanding of toddlers to some degree. In some ways, they're a bit more advanced than toddlers, but neither is developmentally over 6 years old.

Over the years, it's been difficult, because we've been so isolated from others who share similar diagnoses. In fact, we are not aware of any other people who have the same chromosomal rearrangement they have. Our family, as well as families who have children with chromosomal rearrangements are pioneers in their own way.

Nineteen years ago when our middle daughter was born, we didn't have a computer. We had no access to support groups via the Internet. What we did have was a mother by the name of Julie Gordon who runs MUMS (Mothers United for Moral Support). Just knowing we weren't alone helped tremendously, even though we never found anyone else like our girls.

I'm thankful for the resources parents have today such as the National Organization for Rare Disorders (NORD), Unique, and CDO (Chromosome Disorder Outreach). I'll be exploring these resources as time permits. I'm hoping it will help with the isolation. It always helps to know you're not alone.

I came across this video on youtube today.

I already feel better.

I am not alone.


  1. That was a pretty amazing video. There wasn't a single child I didn't fall in love with.

    And yes, it's so good to know you're not alone in so many situations.

    I love the internet.

  2. The internet has provided so many people with a way to communicate with others who are struggling with the same things. It's wonderful.
    Thanks for the condolences

  3. Internet is great, cos I get to stumble across great blogs like yours. I like the humour in your writing - so many parents of kids with special needs can seem whiney (and I am often one of them!). Thanks for the smiles
    I will be back!

    Alison in France
    (The Bernard Bunch)

  4. I fell in love with all of them, too, Ami! :)

    It's nice to meet you, Alison! :)

    And I love the Internet, too. I've met some pretty wonderful people over the years that I met online. I could live without it, if I had to, but I'm glad I don't have to. LOL

  5. I have to tell you how thankful that WE met! There aren't many people with Christopher's chromosome syndrome either. It is nice to network with others just as you said :)

  6. I came to your blog re IWASNTBLOGGEDYESTERDAY. Congratulations on your award. My son has a rare chromosome abnormality too. I have had a lot of help from Unique and they now have a Facebook page and a lot of us parents are in contact regardless of what chromosome problem their child has. It's good to just have someone cheering you on when times are tough :)

  7. I'm just reading this post now a year later. I love that video I may have to blog about that too. I hope your doing well.


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