A (hopefully) brave new world

As most Americans are reeling about the outcome of the presidential elections, the special needs community is taking it particularly hard.   I’ve not been able to put words to my thoughts and fears about Trump being elected.  Thankfully a fellow Rett momma warrior, Lauren Cooper Allen, did just that on Facebook’s Pantsuit Nation site and I just had to share.  You can click here to see the original post if you have a Facebook account and read all the amazing and beautiful responses.  I recommend that you read the responses.  It filled me with hope.

This is my 13 year old daughter Molly. She has Rett Syndrome (RS), a neurological disorder that effects 1 in 10,000 GIRLS and WOMEN worldwide.

Molly cannot walk or talk and often has uncontrolled hand movements much like the ones Donald Trump made fun of and mocked in reporter Serge Kovaleski.

15085596_10211510858434011_5619371133999671014_nI have watched, often silently, as my daughter is stared at. I have watched as people have pointed and spoken in hushed whispers “what is wrong with her?”.

I have spent tireless hours educating others on disability and acceptance, and my fears now have become a hard reality.

Not only does my family face catastrophic cuts to the social service programs that allow
us to care for her at home but I fear that the walls to tolerance and acceptance which we have worked so hard to chip away at are being slowly built back up.

How long before children think it is OK to mock, ignore and marginalize her? How long before she realizes that she is not a valued member of our society?

Here is my plea. If you see a disabled child, please, speak to them, smile at them, let their parents know that you are committed to taking care of the most vulnerable members of our society.

 

❤️

Photo credit: Elise Hanna

#togetherstronger #lovetrumpshate #buildlovenotwalls

 

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To supplement or not to supplement

Recently on one of the parent groups, a question was asked about whether or not it’s worth buying expensive supplements for your kiddo. I thought my response could be helpful to other parents on a similar journey so I’m sharing here:

I’ve been using Agape on and off for years. When I can’t find it or afford it, I use the stuff you get at wholefoods ‘child life’ I think is the brand. I also have used and am using a mix of other supplements for my kiddo on top of this. And have I seen results? How can you really know? And what results are you looking for?

My daughter isn’t ASD (autism spectrum disorder), she has a disorder that, among other things, can cause growth issues (i.e. head and feet and other body parts stop growing) and failure to thrive because of malabsorption in the gut. She also has sensory issues and struggles concentrating. She physically cannot sit still due her her disorder.

So what have I seen? Well one thing is that she is on the growth charts. And continues to grow (though her weight is very much on the low end of the charts, but so is mine). I also see that she is healthy. And is getting better at paying attention. But is it just because she’s maturing? Is it because she got lucky and doesn’t have the growth issues that the other girls with Rett Syndrome have?

I don’t know. But I’m going to keep supplementing her and ensuring she eats the cleanest and healthiest foods possible (she’s on modified GAPS) because it can’t do anything but help.

If you’re not comfortable paying for Agape, why don’t you try the child life supplement to see if it’s something your kid will even tolerate before investing in a big, expensive bottle.

This SN parenting journey is not an easy one. And I’ve realized that we can’t do everything all the time. So pick and choose the things you believe in and think can help your sweetie be the best kiddo s/he can be.

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Long and lean, happy and healthy!