Friday, September 16, 2011

Special Needs Spotlight



Tonight I was out visiting with a friend and her 6 month old son.  I offered to hold him for a bit and as usual when I hold other peoples babies I felt that little pang in my heart and that slight tug in my chest.  I held him by his hands--his tiny fingers curled around my thumbs--as he stood up on his 6 month old weight-bearing legs.  His hands explored my face, shirt and hair and I remembered that you have to be careful of babies pulling your hair.  It's difficult to try and describe this emotion because I don't pity my daughter or our family, nor do I want others to.  I love her just the way she is and I hardly even notice people who stare anymore, it doesn't even register.  But when I see other babies there is something there, a little tug at my heart that tells me she's different, she always will be and will likely be treated different her whole life.  Life with Lamp is so normal, that I guess it's the normalcy of it all that gets thrown off balance a little when in fact I see children who have hands and long legs...I'm suddenly reminded that what we now consider typical is actually quite atypical.  Lamp will likely face challenges her whole life because of these beautiful, atypical limbs and it's those potential challenges I have a hard time swallowing.      

I've been thinking about this for a while and am finally ready to pull the trigger.  I'm going to start a Special Needs Spotlight on my blog every Friday.  The time seems right and I've got some great families I'm eager to introduce you to and that I'm interested in learning more about as well.  We all come from such unique perspectives, there is no way to be so well rounded, all encompassing that we see and feel every unique viewpoint out there.  It's impossible.  But we can learn from each other, and share in our similarities and expand our perspective through our differences.  Our family has been blessed through this blog.  I love the way you all have embraced Lamp and I feel grateful for the technology that allows her to be known and loved throughout the world.  I feel grateful she lives in this day and age (and country) where acceptance of differences is something to be admired and strived for.  My hope is that other families will get to share their stories and open minds and dialogs to life's and situations not previously considered.  I sorta hate using the buzzword awareness, but it's true that a big part of what I want to do is raise awareness about all sorts of special needs circumstances.  Open the door and close the gap at the same time I guess.  I hope you'll be as excited as I am.      

If you are a special needs family or know a special needs family that would be a fantastic spotlight please email me at thislittlemiggy at gmail dot com or leave a comment.  

ps.  And if you can think of a better name than "special needs spotlight" I'm all ears.

  

11 comments:

  1. I love this idea! It has been such a wonderful way for us to talk to Josie about her peers that have special needs. We show her pictures of Lamp, answer her questions, etc. Josie has a peanut allergy so we talk about it in that context for her.
    We were recently at the children's museum and there was a little girl playing with Josie with significant burns all over her face and body. I was so proud of the fact that Josie just played with her like she was playing with everyone else. Later, in the car Josie asked us questions about the little girl and we explained why her skin looked different. I am 100% positive that the reason Josie approached that situation the way she did was because you have shared so much about your experience with Lamp on the blog so Josie "gets it" - even at 4. That said, as you do the spotlights, I would love to hear each family's perspective on how you like other families to engage with you about your special needs child. i.e. When a child stares at Lamp, what would be helpful for the mother to say to his/her child? I know kids typically launch into "what's wrong with him/her". (Besides the standard "everyone is different" bit that I find falls flat with most kids.) Thanks again for all the sharing!

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  2. My little baby girl, who is only 11 weeks old, was born with a port wine stain birthmark on the right side of her face. It can also be associated with Sturge-Weber Syndrome, glaucoma, seizures, and learning disabilities. We won't know whether or not she has Sturge-Weber until she either starts having seizures or has an MRI confirming it. They won't do an MRI until at least 1 year as it can give false assurance too early.

    I find it so hard to go anywhere right now. Yesterday I went to the grocery store and had her in her baby bjorn, facing out. No one would look or talk to me and the lady at the register wouldn't look me in the eyes. It was really hard. She' a beautiful girl, but 1/2 of her face is red in a weird pattern. It just breaks my heart. In about a month, we will take her to a dermatoligist and try to lighten it under laser treatment. It will take multiple treatments and will most likely reappear again and need to get treated her whole life. Kids with this disability are often socially and emotionally damaged as people can be so rude that they have low self-esteem. We are trying to keep a positive look, but we already feel like social outcasts when we go out as a family.

    Your blog and your optimism about Lamp is so inspiring. You honestly help me by your story and your daily strength. I think this spotlight is a wonderful idea. Thank you!

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  3. I love this idea. If you ever want to do a spotlight on Isabelle or Kabuki Syndrome, let me know. I would love for it to not be so unknown.

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  4. I think of Lamp sometimes when I look at my little ones' hands and feet, and it pangs my heart too. There's a lot of room for love in our hearts for extraordinary kids that we don't know yet. Can't wait to see where this goes.

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  5. Linda P.5:01 PM

    Love the idea for you to have this special feature, Miggy. Thank you for doing this.

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  6. These emotions you describe are felt often in my heart. I do not feel sorry for my daughter. Emily is happy the way she is, and she is PERFECT to me. But when I see little kids ... my 9 month old neice ... standing up? Trying to walk? It melts me on the spot.

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  7. I love your idea of sort of a platform for people to talk honestly about different (and perhaps little-known) challenges their children face, and how their own families and others respond to them. I have a child with an "invisible" disabilty - ie, physically he is unremarkable, but his behavioral and developmental problems are many and varied. He is old enough (10), however, that I don't want to blog about him...when they can read and write themselves, it seems like more their story to tell, not ours.

    On a somewhat different note, I am not loving the "special needs" label lately. A friend just gave me the book "The Normal One" by Jeanne Safer. I have only read a few pages, and I am not loving it either (I must be in a moment), but I am touched by her attempt to address the needs of siblings of those with "special needs." She makes a pretty good argument against the term. For whatever that is worth.

    Sorry I am not more help! I will come back when I've had some chocolate! :>

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  8. I think this is a really wonderful idea. I feel like I've learned so much from you and Lamp- like I've gained a real education from your insights. I don't doubt that others in similar yet different situations have important and beautiful things to share too. Thank you in advance- this is the kind of thing that makes the world a better place.

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  9. Anonymous3:25 PM

    I love that you are doing this. I think it would be very helpful as one of your other commenters mentioned to have these families describe how they would like parents of inquisitive children to address difference in their presence.
    I agree that "special needs spotlight" isn't the best term. What about "Friday Family Feature" or "Featured Fridays".

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  10. I'd love to be involved is there is room.

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  11. I too like this idea, just not the title. Maybe Extraordinary Angels? My husband is built much like Lamp and gets lots of looks, even at 37. He is amazing and credits a lot of it to his parents and friends growing up. Don't underestimate what Lamp can do. I know she was born to do great things!

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