JDAM - Bat Mitzvah Inclusion

Although the details are not specified in the article, I am pretty sure that this is a kid in my congregation:

http://www.kveller.com/what-i-learned-while-planning-a-bat-mitzvah-for-my-daughter-with-disabilities/

There is certainly much more to do, but it is good to see earnest effort and collaboration to make such progress happen.

#JDAMblogs

G*dcast for Shemot

Although I am not doing any weekly parsha blogging this year, I still follow the cycle as always.  Many other bloggers put out weekly essays or videos, and their insights vary from meh to enlightening.

This came in my newsfeed yesterday, starting the book of Exodus:

Blogs I follow

There are a few blogs that I follow especially closely.  I have read their stories back to the beginning of the blog, and have been following them for the past year and a half in real time.

First is the Musser family.  Until their tenth child was born with Trisomy 21, they were just a large, rural, Christian family living in Amish country in Pennsylvania. Little Verity introduced her mom to the Down syndrome community, and opened her eyes to the plight of children with disabilities in foreign orphanages and institutions. While still learning the ropes of taking care of a special needs baby, they committed to adopting a little girl with T21 in Bulgaria. This child, whom they would name Katie, turned out to suffer from much more than a chromosomal variation.  Warehoused in a substandard orphanage, she was literally starved, weighing less than 10 lbs. when they brought her home at almost 10 years of age.  While they nurtured her and healed her from the years of neglect, the Mussers realized that many other children in the same institution are similarly suffering.  Susanna Musser singlehandedly publicized the Pleven orphanage, inspiring dozens of families to adopt children with various disabilities from there, as well as bringing about structural changes in the orphanage itself.  They recently adopted one more child from there themselves, a boy with Cerebral Palsy who was about to age out of the international adoption program.  Susanna writes beautifully and passionately, not shying away from showing the tough side of special needs adoption, while also clearly portraying the beauty in it. She is highly motivated by her Christian faith, and refers to it often, but communicates her own experience independently of the New Testament quotes. She also includes many beautiful photographs of her lovely children.

Then there is the Alan family.  Renee has professional background as a therapist, and she and her husband have fostered many children with and without disabilities before embarking on an adoption. They adopted a 5-year-old girl with severe Cerebral Palsy in early 2012.  Unlike Susanna, Renee found her child's institution to be surprisingly good.  The children appeared to be well taken care of, and well adjusted as a result. It was clear that they desperately needed families, though, as no opportunities awaited them once they would grow up. Like Susanna, she advocated tirelessly for the children she had met, until the vast majority of those eligible for adoption have been adopted.  She writes in a more rambling, Hemingway-esque style, offering minute details and weaving multiple thoughts into each blog post.  She also punctuates her writing with New Testament quotes, but the value of her writing is in the realistic picture she paints of the experience of special needs adoption.  More recently she returned to Ukraine to adopt 3 more children with special needs, and has been writing extensively about FAS, CP, and other issues.

Finally, there is the Spring family. Their youngest child (from Leah's first marriage) has Trisomy 21. They were not expecting to conceive any more children, but after Leah traveled to Eastern Europe with her friend Shelley Bedford to assist with her adoption, they realized that adopting another child with T21 was the right choice for them. They have since adopted 3 boys from Serbia, all with T21. Like Susanna and Renee, Leah has been advocating for adoption of children from similar circumstances, in her case, Serbian orphans. Leah's writing is mostly conversational, offering a very comfortable perspective into her daily life.  While she is also Christian, religion does not play a major role on her blog, which is refreshing!

There are many other stories I follow -- just look on the right side-bar!  But these are the most consistently informative reads on this subject.

What a little snip can do!

Children with Cerebral Palsy are often given up on by society, even when they are cognitively normal. In many cases, a relatively simple procedure - Selective Dorsal Rhizotomy - can restore functionality to damaged limbs, allowing mobility which in turn permits full participation in society.

Check out this video of 10-year-old Sarah Kate:

Aging out!

Here is a boy who looks no bigger than my 4-year-old:

No, he is not aging out of a baby house.  He will be turning 16 years old in June!  Can you imagine?  According to US immigration laws, once he turns 16 he may not be adopted by an American family.  Of course, the chances of him being adopted domestically in Ukraine are slim to none.  Most likely he will remain in the mental institution until he dies, which will probably happen all too soon, and he will be buried on the overgrown hillside in an unmarked grave.

You can see his institution in this video:


He has Cerebral Palsy and seborrheic dermatitis, but his greatest problem is clearly malnutrition and the lack of a family. He has significant delays, as could be expected, but he is a happy, smiley boy:

He does not walk or stand, and can't even use a spoon.  Is there a family out there who can help him?

Special Needs Bat Mitzvah

Two for one for this parsha!  Ki Tissa was also the occasion of the Bat Mitzvah of a sweet girl with Cerebral Palsy who attends our synagogue.  I have known her since she was a little toddler crawling around using just her arms.  I watched her gradually learn to use a walker, then crutches, then just one crutch, until now she is able to walk short distances unassisted.  Her family has moved a bit further away, so I haven't seen as much of them in recent years except for Bat Mitzvah preparation.

Her Bat Mitzvah was incredibly well attended.  She is well-loved in the congregation, as she has a very sweet, soft-spoken manner about her.  She brought this to her reading of the parsha.  Instead of focusing on the negativity, she saw each participant -- G*d, Moses and Aaron -- as giving and getting "another chance". Each one, in turn, refused to give up on the other.  Thus she took from this low point in the story an uplifting message which she related to her own experience of not giving up, and having family and friends not give up on her.  What a great message!

Serbian mental institutions revisited

NBC News just put up a 3-part series on the predicament of children and adults with special needs in Serbia.  This contains much footage from a much shorter (and very disturbing) 2008 video, but also includes followups, as well as a look into the very real dilemma faced by Serbian parents of special needs infants, as they must choose between relinquishing their child to these horrible places, or trying to raise a disabled child without medical or educational resources, and often without the support of family.

31 for 21: Who will save Sasha?

Whoa!  Somebody is looking out for Sasha:

Sasha was recently transferred to a remote, underfunded mental institution for older children and adults.  He is getting no care or attention there.  He is probably grossly underfed and only getting one diaper change a day.  

But somehow, his grant at Reece's Rainbow has grown to nearly $10,000 lately.  Will that encourage someone to look past Sasha's scary needs and go to that mental institution and rescue him?

His profile speculates on whether he has Cerebral Palsy and/or Autism in addition to Down syndrome.  We do not know if his behavior and severely delayed development is caused by these or other possibilities, or just due to institutionalization.   We do know that he is TINY!  Look at him in the caregiver's hands, like a little baby.  He does seem to be holding his head well in the second picture, while in the earlier one he is still flopped over.  Am I totally crazy to think that he has the potential to grow and develop?  Is there anyone out there "crazy" enough to help him do so?

31 for 21: Why community is important

For this installment of 31 days for Trisomy 21 awareness, I want to talk about the benefits of helping children with special needs in a community.  My faith community includes several well-integrated children with Cerebral Palsy, but I have seen very few other disabilities represented.  There is one child in my children's school with Down syndrome.  Other than that, there's the usual crop of ADHD, and the occasional case of Asperger's.

A blogger I quoted a couple of days ago answered the following question from a reader today:

When I had my son 10 months ago, he was born with Down syndrome and while I didn’t know any of the health implications, the first thing that came into my head when I saw him, was, “Oh no, he is not going to be smart and he will be hard to understand when he speaks.” I want to know why I had that expectation because reading your blog and others has proven the “not smart” part very wrong. My son proves to me each day how smart he is by how hard he works and fought to live through heart surgery and feeding difficulties and how hard he works now. Every person who I’ve talked to since my son’s birth has said how enjoyable it has been to work with people and children with Ds. If people with experience in this know the truth, why is the opposite a commonly held if false belief? Who is spreading this lie about what smart looks like? I’m chagrined that I felt that way about my son at this birth and grateful that I found reality to be better than I had expected. That is what I want Down syndrome awareness month to do – to give people a good gut feeling when they think about Ds, and not a pit of fear and discomfort and pity.

Your questions may have been intended to be rhetorical, because I’m just one person and unlikely to know The Answer, but I’ll give you my opinion. I’ll take the second question first, because it’s the toughest.
    There is no doubt that medical textbooks repeat the “facts” about IQ, as does virtually every website or clinical resource available. Doctors (who, I might add, are generally people who value intellect) are taught in medical school that people with Down syndrome have lower IQs – i.e., that they aren’t smart. Of course, the belief isn’t limited to doctors, but having the experts say it does lend it more credence, don’t you think?
     People tell us all the time that Nathan is “smart” and I often wonder what they mean. Smart for Down syndrome? Smart compared to typical kids? Clever? Are they just being nice (I don’t believe that one). His new preschool teacher, who’s been in the business for years, says she doesn’t see any difference in him intellectually than the typical kids.
     The answer to the first part is probably that the people with experience are too few and the people without it are too many. That’s why inclusion is SO important. Case in point: the story I linked to in Sun-Beams recently about the young woman crowned Homecoming Queen at her high school. The media made a big deal about it, but the students didn’t understand why it was a big deal. She was well-liked so she won – end of story. The more our kids spend time with their typical peers, the more comfortable people will be Down syndrome.

Quite besides the benefit to a child who is being rescued from a dead-end situation in an orphanage or mental institution, bringing children with special needs into a society that increasingly sees prenatal diagnosis and abortion as an acceptable "cure" for congenital differences can bring about a change in perspective.  Learning to appreciate people with very different abilities creates a richer community, where the "typical" spectrum is broadened.  After all, once you have learned that it makes no sense to bully someone because of a severe or obvious disability, does it really makes sense to bully someone who is short, or lisps, or wears glasses?  Once we have learned to appreciate the internal qualities of people who look different, will we be so "look-ist" in our selections of friends and spouses?

Another Pleven child

Brandi of Pleven is now available for adoption:



Brandi is 6 years old and has Cerebral Palsy, besides the extreme physical and developmental delays we have seen in the other Pleven children.