Category Archives: Trisomy 21

We are now a dog family!

parenting, Trisomy 21

People tell me that things change quickly in our family, and I suppose that’s true. I seem like I make decisions fast and act on them quickly. And that’s true! However, what people can’t know if that I spend a lot of time thinking about things and researching prior to taking action.

Months ago when we talked to our kids about moving to northern Israel, one son was very unhappy about the idea. He asked if he could get a dog if we moved, and to ‘sweeten the deal’ for him, I said I would seriously consider it. Time went on and he realized that he’ll be too busy with school to be around much, so he retracted his request.

But I had already begun exploring the idea and saw the different ways that having a dog could be valuable for our family, particularly our youngest two. The more I thought about it, the better an idea it seemed to be. I’m a believer in integrating beneficial activities rather than turning them into stand alone therapy, and some positive benefits of pet therapy are a natural part of pet ownership. Responsibility is great, but my kids can learn that without a pet – but the calm and connection of a pet are wonderful!

For months I’ve been reading descriptions of dogs needing adoptive homes on various Facebook groups, but I didn’t speak to my husband until the week we ended up bringing our dog home. When I presented the idea, he agreed it sounded interesting – once we moved to our bigger house with a bigger yard.

One of the ideas I considered was fostering a dog for a few months as a trial for pet ownership. Another idea was buying a trained service dog that didn’t pass the test (available to those with special needs at a very, very reduced price). I liked that idea a lot, but the waiting list was six months long and closed when I called.

Then I thought about our needs, and realized that I really didn’t need a service dog. What I wanted was a friendly, calm, quiet and intelligent dog that could be trained to track our younger two children if necessary. (I haven’t really shared here about the challenges involved when a child loves to explore on his own and escapes every chance he has…this is a very common issue for kids with T21 and I am SO grateful that when Yirmi turned 7 this finally stopped being the serious ongoing concern it was for years.)

Though I think puppies are incredibly adorable, I had no interest in training a puppy (toilet training my kids is my least favorite parenting activity), which is a significant time investment. I wanted an adult dog that was already housebroken and whose basic personality was already known.

I had just left for a two day women’s trip away when I saw a particular dog listed whose description caught my eye. However, I didn’t contact them because I had no time to take the kids to meet a dog. And anyway, I had just brought up the idea with my husband a couple of days before.

However, when I saw the same dog posted on the morning after I returned, I noticed there was a good bit of interest in this particular dog, and thought I should at least call. So I did. At 1 pm Friday afternoon she called back.

After our conversation, I strongly felt he was potentially a great match for us, so at 1:30 on Friday afternoon, I spontaneously announced a family trip to Tel Aviv! This was a bit of a surprise to them all since I had only a few days earlier in the week casually mentioned the idea of getting a dog. By going at this time, I was able to take my husband and the five youngest boys (who are rarely all available at once), and off we went.

Within less than a minute of meeting the dog, everyone was clear – this was the right dog for our family! Even the kids who were lukewarm to begin were enthusiastic after meeting him. Shabbos began that week at 4:15, Tel Aviv was an hour drive away and it was a very rainy day, leading to a longer trip than usual. We got back home just 15 minutes before Shabbos but all agreed the spontaneous trip was very valuable. It’s one thing to theoretically discuss something; it’s completely a different discussion when everyone knows the specifics.

The morning of the first walk.

Shabbos was filled with lots of talk about how excited they were to get Sheleg (translation: Snowy, because it was snowing when he was born). We bypassed the time constraints of my busy week to come by returning to Tel Aviv on Saturday night to pick him up.

Don’t you love that blissful smile as Yirmi snuggles with Sheleg?

Just like that, we are now a dog family! It’s funny how things can happen so quickly but just feel right. Everyone agrees, he fits our family perfectly.

Enjoying a warm spring day together.

After seeing so many dogs listed, what appealed to me particularly about this dog? First of all, the breed. I was specifically looking for a labrador or golden retriever, because of their friendly, calm temperament and intelligence. Sheleg is a golden retriever (according to his paperwork from the vet, but I think he must be a mix because he’s smaller than the typical golden retriever). A huge plus for me was that he had been raised with a family who had previously run a home daycare. They were wonderfully responsible and loving owners, and he is a very calm dog who is used to being around kids.

I was open to adopting a dog from a shelter, but preferred a dog from a private home. Often dogs have experienced abandonment, abuse and trauma, and it takes time and patience to help them feel safe and secure. A stable dog from a loving home was a definite advantage.

I came home from shopping to this sight. 🙂

People keep asking why anyone would have given away such a great dog! The answer is, the couple who had him had gotten older and as their physical abilities became more limited, were unable to give him the life they felt he deserved. Neighborhood kids came by to take him out for walks (since the owners couldn’t do it); as much as they wanted to keep him, they felt it wasn’t fair to him to stay in a home with no porch or yard and very limited access to the outdoors.

However, they were very, very attached to him and despite a lot of calls expressing interest, didn’t feel good about any of the people who contacted them. They didn’t want money for him; their priority was that he go to a very good home.

When they met us, they had that same instantaneous feeling of us being a perfect match for what they were looking for, that we felt when we met them. She said a few times, she never dreamed she would find a family like us that was so exactly what they wanted for him, and as hard as it is for them, it gives them a lot of comfort that he will have a wonderful life. Every couple of weeks I send them photos. 🙂

Sheleg accompanies us on outings as well as to our weekly homeschool meetup at the park.

So Sheleg is now a member of the family and has slid into our lives seamlessly. He loves being with us and we’re all enjoying him, too. There’s something very comforting about having such a nice dog around.

Typical – he curls up to us as close as he can get, inside or outside.
One thing I wanted was to encourage physical activity for our younger two boys and walking a dog provides that, though at this point it’s more for Yirmi (7) than Rafael (3).

As far as additional training to track runaway kiddos, Yirmi is thankfully finally at the stage that it’s no longer a concern, and Rafael isn’t yet at that stage. So right now training isn’t something we’re actively pursuing. Especially since we’ll be moving somewhere with a lot more outdoor freedom, we like knowing we potentially have additional help keeping the littlest one from straying too far should we need it. 🙂

Avivah

The day that Rafael was placed in my arms – 3 year anniversary

parenting, Trisomy 21,

Today marks the third anniversary of the day that Rafael joined our family.

The foster care protocol was adjusted and bent and changed repeatedly to facilitate his arrival to our family. I shared about when we went to meet him at the hospital, accompanied only by his birth parents.

I didn’t write about the process of actually getting him, though. I shared pictures of his homecoming with all the kids holding him (go back and look again – weren’t they all so sweet?!?), but there were no pictures of me. All I referenced in the post was that it had been very draining. Very.

On the day we got Rafael we had another bending of protocol that added a huge emotional load to the experience for all of us. Instead of us picking him up from the hospital, he was checked out by his birth parents, who then took him to the offices of the foster care organization. It was in that office, accompanied by their social worker, our social worker, the head social worker, that both families finalized the agreement.

Finally the technicalities were completed. All that remained was to physically transfer the baby from them to us.

All that remained. As if that was a minor technicality.

No, it was all the reams of paperwork were the technicalities. The transfer of the baby was the most sensitive and heartwrenching experience.

His birth mother placed him in my arms, her eyes filled with tears. I don’t remember saying anything. What I do clearly remember is that they immediately left the office, and I turned toward the window overlooking the street, unable to speak for the tears in my eyes and the pain in my heart.

It was a moment of incredibly heightened emotion. We had so much anticipation of this little baby joining our family, but for me there was no happiness in that moment. In that moment, I saw only the heartbreak of another mother.

Through all the talking and paperwork, the baby slept.

We were told the baby needed to be awake for an extended period before he could be taken home. The ideas was to minimize trauma, so that he didn’t go to sleep on in one place and wake up in another, that there was some kind of preparatory transition for him.

This took quite some time. I don’t remember how long we were there, while the social workers observed us with him – more than two hours, but I don’t remember how much longer.

Not waking up, even after removing his snuggly warm clothing and repeated stimulation of all kinds (social workers in the background).


Moving his legs but still not opening his eyes.
Rafael looking tortured as I persisted in trying to get him to wake up.
“Ooh, look at you gorgeous boy, your eyes are open!” Hardly open, but open.

Once he was finally awake, my husband and I both held and interacted with him for a while.

We were at last allowed to give him a bottle, the final activity before taking him home. We couldn’t feed him sooner because it was likely he would have fallen right back asleep and he needed to be awake for an hour.

When we got home, all his siblings got a very brief chance to hold him. For the following week, he was hardly held by anyone but me. After having multiple caretakers for two months in the hospital, it was critical for him to bond with me and know me as his primary caretaker.

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Last week I had a meeting with staff at his school, and they commented that they never would have guessed that he wasn’t really my child.

He really is my child. While I didn’t give birth to him and he doesn’t (yet) legally share my last name, I couldn’t love him a drop more.

Rafael and his mommy, age 3.

I am so deeply, deeply grateful for the opportunity to parent this adorable ball of sunshine. It just keeps getting better.

Avivah

Kayla McKeon – Capitol Hill lobbyist with Trisomy 21

Trisomy 21

Sorry I’ve been AWOL for so long; I’ve had an incredible string of technical challenges with my computer, my phone, my new phone, my home internet….it just didn’t seem to stop! So I wasn’t able to get online, despite my plans to write several posts this month in honor of October being Down Syndrome Awareness Month.

So here I am, barely squeaking in under the deadline (it’s after 11:30 pm Oct. 31) but better something than nothing, right?

There are so many misconceptions of people with Trisomy 21, and probably all of them involve significantly diminished expectations (physically, socially, intellectually, behaviorally). Across the world, people with T21 are raising the bar and showing us what different kinds of success look like and blazing new trails for those who come after them.

Back in January I shared a video of a talented dancer with Trisomy 21. As much as I enjoyed that, it’s not the kind of thing that resonates with me specifically for my kids, though they may end up being amazing dancers in spite of the lack of focus of that in our family.

Today I’m sharing a video of a young woman who I found to be inspiring and her direction has resonated with me more personally. I KNOW my boys with T21 are intelligent and capable. I expect them to one day be able to live independently and interact appropriately and productively within mainstream society. When I see Kayla McKeon lobbying on Capitol Hills, it raises the bar in my mind of what is possible.

Kayla joins other bright and well-spoken women with T21, including Karen Gaffney and Tikva Juni, who I’ve written about here.

I wasn’t able to directly link the videos, so click below for the video and short summary of Kayla’s work. Eight minutes, very worth it!

 https://nowthisnews.com/videos/her/kayla-mckeon-is-a-us-lobbyist-inspiring-others-with-down-syndrome

When I did a search to find this video for you, I came across Kayla’s blog, which you might also find of interest.

Go, Kayla!

Avivah

Yay, summer is here and the kids are home!

homeschooling, parenting, personal development, Trisomy 21

The summer is a busy time of year for our family!

This is a little roundup of what’s going on around here.

A couple of weeks ago one son turned 17, our first married couple celebrated their two year anniversary, a day later my husband and I celebrated our 27th anniversary, two days ago was my oldest granddaughter’s first birthday, yesterday was another son’s seventh birthday, and tomorrow my oldest son will turn 26! I’m so thankful for it all.

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It’s our first official week of vacation and it’s so nice to finally be free of most of the external schedules! I had a mini debate with myself about sending Yirmi (now 7!) to the school sponsored summer camp program – there was a ridiculously small fee and the bus there and back was available for no extra charge. Even though the program would finish at 12:45 daily and it would have been fun, I opted to keep him home for the entire summer.

It’s so nice not to have to get him ready first thing in the morning, sending him off when he’s fresh and getting him back after 4 pm when he’s exhausted and out of sort. He’s a great person to spend time with. And it feels like vacation to me not to have to get going so early in the morning!

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It seemed that I wouldn’t be allowed to take Rafael (2.5) out of his daycare program for the summer. Don’t ask. It has been one big headache and I continually just turn this over to G-d and ask for His help in gracefully navigating the system. However, this week a therapist gave me a heads up that independent of the administration’s threat not to allow him to come back next year, the therapists don’t think this is a  supportive environment for him and suggest finding a different place.

Now that I know he won’t be continuing at this daycare for the coming year, if I can cut down his summer attendance they can’t threaten me with kicking him out of the program.  It’s the silver lining of the whole daycare situation right now.

What I’d really like to do is keep him home for the coming year, and that would unquestionably be the best thing for him. I’m sure we would see dramatic improvements in every area. However, as a foster parent I don’t get to make that choice. The only option I’m left with is an intensive therapeutic program.

There are many lovely things about that program and if I’m forced to send him there I’ll focus on those things, but I have to tell you honestly that my heart is clutching at all of this. I’m being told he’s not progressing fast enough and the answer is more therapy. But he doesn’t need more therapy, what he needs is more attachment.

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Last week I attended a two day beach festival for women in Tiberias on the edge of the Sea of Galilee, and it was wonderful! So relaxing and maybe most important, I had extended quiet to reflect on some things that are important to me and discuss them with others. From there, I spent a lot of time considering how to integrate more of those things into my life.

The more I have the courage to ask myself what I really want my life to look and feel like, the more clarity I have and then I can take actions to move closer to that goal. It’s extremely empowering.

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On my bucket list for the summer are getting hearing aids for Yirmi. It’s taken a year to get to the point that he’s been approved for the hearing aids, and hopefully in the next month we can get all the necessary appointments for this taken care of. He’s done amazingly in his first year of school, and think how much more he’ll gain next year when he can clearly hear what is being said!

Another important item that I want to take care of during the relaxed summer months, is to begin the process of palate expansion. It can be uncomfortable and make speech less clear, so I opted not to do this during the school year. Yirmi works hard enough to keep up and do all that is asked of him without piling on another challenge during the school year!

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In other news, my 18 year old daughter applied to a seminary that seemed to be a perfect fit for her, and wasn’t accepted. When someone contacted the administration to find out why, they said that due to her homeschooling background, they are concerned she won’t be able to get to classes on time and manage the schedule.

That is so completely ludicrous for someone who has been managing her own schedule for a long time (no parents to wake her up and remind her to do homework); she has much more self-discipline than the average high school graduate. It was very frustrating  that they didn’t bring up this concern in the interview and give her a chance to respond. Instead, they made an assumption based on whatever their ideas about homeschooling are. (Clearly not very positive, as they said, “We aren’t like your family who does whatever they want – we act in accordance to rabbinical guidance.” This is an example of when I have to set my ego aside and focus on supporting what my kids need. )

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My seventeen year old son has decided he wants to leave high school early and go directly to a post high school yeshiva, where he will be able to pursue full-time Torah study. I’ve been somewhat on the fence about this, and despite his repeated comments to the effect that I’m not supporting him, I’m actually very open to the possibility. However, I want to know that he will be attending a yeshiva that will be a good match for him, and finding that match is still up in the air.

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Oh, have I told you that I’m going to continue homeschooling ds10 and ds11 for the coming year? I’ve been meaning to do a post on that for many weeks. After feeling very burnt out last summer, I decided this school year was going to be our last year of homeschooling. But as time went on and I regrouped, I found myself remembering what I love about homeschooling and how it continues to benefit them. Prior to that, I could only see all that I wasn’t doing and was focusing on that.

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Some little random odds and ends of summer stuff…

I took three of the boys to an archeological dig, where we uncovered the original mosaic floors from a 1500 year old church – educational and fun. It was a great experience, and I’d love to share pics but they don’t want the public to see the finds yet. (They’ll be officially introduced in the fall.)

We’ve been continuing exploring the closest national park and in addition to new playgrounds. Yesterday we had a great time at a birthday party for my granddaughter in Jerusalem.

The pool is getting lots of use. Even Rafael (2), who refuses to go in, is enjoying it – we hung the bucket swing over the pool so he can swing and and dangle his feet in the water while the older boys are playing – he loves it!

And that’s the update for now!

Avivah

Staying positive when dealing with frustrating bureaucracy and seeing good results happening!

parenting, personal development, Trisomy 21

Yesterday I received the wonderful news that Yirmi (6) has been approved for an additional year of gan safa!

A month ago, after returning from a week at the beach with my family I wrote: I know, I’m supposed to feel renewed and refreshed, but what I actually feel is assaulted by all the things I have to deal with. Things I don’t want to deal with. People I don’t want to interact with. Decisions that need to be made but I’m paralyzed by lack of clarity and purposeful direction.

Now that there has been some resolution of some things that I was dealing with, I’m going to share with you a glimpse of the back story to the above statement.

For months Yirmi’s school placement for next year was been hanging in the air. Although he was accepted to a mainstream first grade for the coming year, neither I nor any of the professionals assessing him thought putting him in traditional first grade at this time was the best option. However, I was told the likelihood he would be approved for another year of gan safa was almost nonexistent (due to his age). 

Yirmi, almost 7, celebrating birthday in gan
Yirmi, almost 7, celebrating birthday in gan

I went back and forth for weeks, trying to determine what the best course of action would be if he wasn’t approved. Should I send him to first grade, should I officially homeschool him, should I refuse to send him to school and unofficially homeschool him, or should I legally fight for his placement? I spent so many hours of wresting with this and wasn’t getting much clarity on what decision to go in!

I finally decided a few weeks ago that if he was denied gan safa, I would unofficially homeschool him and simultaneously legally fight until he got the appropriate placement. I then felt confident that he was going to go to gan safa one way or another!

And now he’s been approved without any drama, without any fighting, and with plenty of time before the coming school year.

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While dealing with the above, I was simultaneously advocating to get Yirmi changed to a different school bus. The escort on the bus regularly yelled at the kids and threatened them. When I complained, my concerns were verified and she was called in and given a warning. I was told to come back if the problem continued.

Of course the issue continued and I pulled Yirmi off the bus, taking him back and forth daily for weeks. When I went back to the municipality to report that the issue was still a problem, the person at that office (who had been on vacation when I initially dealt with this) adamantly told me  there’s no issue, no one else has complained, and clearly I’m the problem – because I don’t know how to communicate and ds6 is too sensitive.

In spite of that that hostile initial response, my concerns were again very quickly verified but no action was taken. I began to feel that something supernatural had to happen because it seemed that looking out for the emotional safety of the children involved wasn’t anyone’s focus but mine.  While I waited to see this official three weeks later, I repeatedly asked G-d to give me the words to open her heart so she would want to help me.

He did. 

I asked her if she had checked into my concerns and she said she had. What had she found out? I asked, knowing the answer. “That you’re right.” After a bit of back and forth with me being very low key and not speaking with even a hint of blame or hostility for their position until that point, she looked me steadily in the eyes without speaking for a full minute. While continuing to look me in the eye, she picked up her phone and called another bus escort to notify her that Yirmi was being shifted to her route, effective immediately. I had been told for months that this was impossible. One 60 second phone call and it was done.

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Then, also at the same time, I was informed that a report was sent to (or from? – no one will tell me who wrote it) social services that I bring Rafael to his daycare between 9:30  – 10 am, and when told he is missing his therapeutic interventions as a result of my tardiness, told them I don’t care. Since this was completely false (he’s always there between 8:30 – 9, in time for breakfast as per their guidelines), I assumed some obvious mistake had been made and it would quickly be corrected. Instead I was told there was no mistake, that everything that was written was true and I’m the problem. (Do you notice a pattern in official responses ?)

Since then they’ve admitted that they wrote incorrect information in the report (no one is saying it directly to me, of course, but they admitted it to my foster care social worker). However,  now that I’m on their radar it seems they want to create an issue, and I was told they will deny Rafael admission to their program next year unless I agree to leave him there for the full day program.

IMG-9294

Background to this discussion: After five months in daycare this year, his development had stalled so obviously that no one could deny it. At that point I began picking him up at 12:30 daily rather than letting him stay until 3:30/4 pm. Within a week he became happier, much more active, involved in activities at daycare, his development restarted and he’s now doing fabulously. Every single professional at the roundtable evaluation meeting in Feb. agreed that it was because of this decision of mine to pick him up early that he was doing so well.

Before I ever registered him for this program in Feb 2018, I asked them when the actual programming took place, and asked if there would be a problem if I picked him up when this programming was finished.  I was clearly told that the program takes place between breakfast and lunch, and as long as he’s there for that stretch of time and we pay the price for the full day, there’s no problem with me picking him up early.

Suddenly I’m being told that it’s a problem that I pick him up early because he is missing the benefits of inclusion. My social worker spoke to her supervisor and told me that they know how well Rafael is doing and understand my concerns, they know that I was told it was fine to pick him up early (they verified with the head of the daycare) but the foster care agency has to insist I comply and send him for the full day next year.

May 2019 at beach, age 2.5
May 2019 at beach, age 2.5

For a couple of days after I received the notice of the report I was very bothered. I was so upset, not that they made a mistake, but that they wouldn’t admit to their mistake. I was sorely tempted to pull him from the program for the coming year but due to foster care guidelines and demands I am left with no other viable options. Finally I took a mental step back and said to myself, I am not giving my power away. This feels real and intimidating but it’s really not. I have a choice how I choose to think about this.

It was good I had a chance to emotionally address this within myself since then I didn’t get upset and frustrated when being told about this new issue. I’m not going to feel stuck and powerless to make good choices for my child, I’m not going to tell myself how threatening and bad this is for Rafael . I’m completely sidestepping this power play.

I’m continuing to believe in the good will of all involved – truly, these are all nice people with good intentions – and trust that it will all work out for Rafael’s highest good next year. 

Avivah

Give people a chance to participate fully in life

parenting, Trisomy 21

The following video is about a 54 year old man who has a story to tell only because his parents flouted ‘traditional wisdom’. Funny how often contemporary practice is later shown to be completely wrong.

These parents were told to institutionalize him at birth, as was the accepted norm, but refused. Otherwise, he would have been one of the anonymous masses of disadvantaged infants that were never given a chance to be loved and cared for, and were instead warehoused in institutions with minimal care and certainly without love and nurturing, until their premature deaths.

Instead, his parents brought him home and raised him like their other sons. They were the ones who gave him his first real chance at life, who continued to make choices throughout the years they raised him, creating more and more opportunities for him.

To me, that’s what this video is about. It’s not about public speaking, it’s not about college.  It’s not about the salary you earn, how smart you are, or how high you climb on the ladder of someone else’s success. It’s about giving each person a chance to participate fully in life.

 

Avivah

 

Our foster care difficulties

parenting, Trisomy 21

Recently I was contacted by our social worker about participating in a new initiative, a roundtable discussion with the heads of the foster agency. I was told that there are hundreds of foster  parents in the Jerusalem area, and each social worker was asked to contact two or three parents in her caseload to ask them to share their experience.

I was also told that even if we agreed, it didn’t mean that we would actually end up being at the forum since there were potentially so many people who would accept the offer and at this point only six or seven couples could participate.

We said we’d be willing to come and later were approved as one of the couples to participate in this discussion in the coming week. It will be interesting to see how it goes!

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What has our foster care experience been like? While overall I’ve been grateful it’s been such a positive experience for us, I can’t say that everything was easy and smooth.

If you knew about the difficulties, would you still have gone forward?

Yes, absolutely. The difficulties weren’t as big as they initially felt.

But in the beginning it felt hard.

My main challenge was interacting with the birth mother.

When they place infants with special needs who were voluntarily given up, social workers are looking for families who will raise the child to adulthood, so it’s much more similar to adoption than foster care. This is different than the typical foster care placement system, in which the child is placed with a foster family until his biological family can be rehabilitated.

However, even though there are very significant differences in these two scenarios, legally they are treated in the same way. One result of this is that although the birth parents gave up their child, they are expected to have regular visits. (With typical foster care scenarios, the bio parents are expected to have the child reenter the home and it’s critical that the child maintains a relationship with them and views them as his real parents.)

A parent who makes the decision to give up a child is grieving; even if it’s what she chooses, it’s a gut wrenching choice. I can’t fathom the depth of emotions a parent in this situation experiences.

Sometimes this pain came out in ways that were uncomfortable for me because I was the one who replaced her as Rafael’s parent and the negativity was directed at me. Based on our initial interactions and their gratitude that they found a family they were so happy with, I wasn’t expecting hostility and when it came, it was hard for me. If I had been expecting it, it would have been easier since I could have prepared myself emotionally in advance.

However, I understand it and now that I look back, I wonder how it could have been otherwise.

Isn’t it difficult to have to ask me for permission to see the child she gave birth to? Whose child is he, anyway? Isn’t it painful to have to visit a child that you’ve decided you aren’t going to keep? What is her emotional role vis a vis him supposed to be? It’s confusing and takes emotional maturity to navigate this territory.

I also was afraid they would see how well Rafael was doing, regret the decision they made *perhaps based in part on a much more limited picture of his potential), and then decide to take him back.

Since we were dealing with the foster care system that has a stated belief that it’s always better for a child to be with his biological parents, they would be very responsive if the bio parents made this request. Although unusual for kids with special needs, it has happened; sometimes years after giving him up a parent decides they want the child back. And they always get him (so I was told).

I discussed this concern with our social worker and it wasn’t reassuring. Yes, I was told, that could happen and has happened to others and it would be best for him if that happened because it’s always best for a child to be with his biological family.

I protested, but we’re his family, we’re the only family he’s ever known from the very beginning – how could it be good for him to one day be ripped away and sent to live with people he doesn’t know at all? He would be completely traumatized and emotionally devastated, as we would be.

Well, that’s foster care, I was told, and that’s the reality you have to live with.

It was very hard for me to live with that in the background. I worried that all my investment into Rafael might be our undoing; I knew he would do much better with us than with a typical placement. It wasn’t until our most recent visit with his bio parents when they reassured me they have no intention of taking him back and they’re only visiting because they have to, that this fear faded. Until then I couldn’t get a read on what they were thinking and intending, and I had to consciously remind myself that it was G-d Who brought him into our family and it was G-d Who would continue to determine the best place for him.

One concern I had in the beginning was about the regular involvement of a social worker in my family’s life, and particularly in the decisions relating to Rafael. The reality is that I have all the responsibilities of a parent but not all of the executive decision making powers that a biological parent has.  For the most part this hasn’t yet been overly constraining or invasive but it is definitely a concern.

I’m very fortunate that my relationship with our social worker is excellent. She’s been impressed by how we parent, and sees how much love and dedication we have for Rafael. She also happens to speak English fluently, which is nice.

(At a recent meeting with seven professionals gathered to discuss Rafael’s educational placement for next year, remarks were made that implied that I was limiting Rafael’s development by not keeping him at his daycare for longer hours. This social worker jumped to my defense and told them what a  dedicated mother I am, how everything I do is with his best interests and development in mind, and that my home is an incredible nonstop therapeutic environment for him. I was so touched to hear her say all of that.)

Those were the main challenges I had specific to the foster care situation.

At this point I feel somewhat like someone a couple of years after giving birth – you remember there were parts that were hard but the difficulties fade away and the reality of you’re left with is of the wonderfulness of having your child.

Avivah

 

Two years since Rafael joined our family!

parenting, Trisomy 21,

Just over two years ago, Rafael joined our family.  His biological mother left the hospital without him when he was a day old, and for two months he lay in a hospital nursery waiting for a family. And then in what was clearly divinely orchestrated, a match was made between him and our family.

Many people have asked me, why in the world would we want to add another child with Trisomy 21 to our family?

You know how when people don’t understand something you do, they think you’re either crazy or put you up on a pedestal of righteousness? There’s another explanation. 🙂

After having Yirmi, the T21 label and stereotype lost a lot of the power it would have had without our personal experience. It became very simple – a child with T21 is a child. Not a label, not a disability, not a tragedy, not a burden – but a blessing.  Just as every other child is a blessing.

Knowing that the vast majority of newborns in the foster care system in this country are voluntarily given up because of T21 was very painful for me to think about. I would look at Yirmi and look at how our lives have been expanded and enriched. Then I would think about all these beautiful babies who were given up due to ignorance or lack of accurate information.

We knew a lot about T21, we had a strong family with a lot of love to give, we were open to having more children… and this is the direction it made sense for us to go in.

I would often think of the story of the starfish thrower, initially written as a 16 page story by Dr. Loren Eiseley. Here’s a very short video adaptation:

(A boy was throwing starfish that were stranded on the beach back into the ocean. A man said, there’s too many starfish, your efforts can’t possibly make a difference. The boy meant down, picked up another starfish, threw it into the ocean and said, “It made a difference to that one.”)

I couldn’t change the reasons people were giving these babies up (while I thought about advocacy on this front it was clear it wasn’t meant to be my role at this point), I couldn’t given them all a home, but I could make a difference to one child.

Just one child.

Yet every child is a world.

And so we applied to be foster parents specifically for babies with special needs (who are placed into the long term foster care system rather than being placed for adoption).

Five days after our application was completed, we got the call about Rafael.

Three weeks later, he was home with us.

Two years have flown by and we can’t imagine life without him.

Avivah

 

Isn’t it a pity? The real problem with special needs – video

parenting, personal development, Trisomy 21

I saw this TED talk quite some time ago, and after recently watching it again, felt it was worth sharing with you.

This brief talk sums up some of my thoughts on the realities of being labeled as ‘special’, too often resulting in being pitied, marginalized and excluded.

The environment we raise children in is an extremely powerful influencer of our children’s futures. We are individually and collectively constantly broadcasting meta messages to our children of their inherent worth and potential. This is true of all children, and especially those who are viewed as different (generally assumed to mean ‘less than’).

While seeing the positive possibilities available in special ed frameworks, I nonetheless have very strong reservations about these typically exclusionary environments and the nonverbal messages they convey to the neurotypical as well as differently-abled about the role that each plays vis a vis one another.

As a result, I have chosen to place Yirmi (6) and Rafael (2) in inclusive frameworks that are more supportive of the attitudes I’d like them to be surrounded with.

To share some questions of this speaker:

What if we looked at the disability as neutral and just saw the child and not the label?

What if we built a community where everyone belongs?

What do we gain when we separate kids and what do we lose when we separate them?

How would you want to be treated if you had a disability?

Would you want people to feel sorry for you, to stare at you, to talk down to you?

These are very important questions, ones that I started asking myself only after Yirmi was born and I was slowly internalizing a paradigm that resonated with me.

I want my children – all of them – to feel a sense of community, to feel a sense of belonging and contribution to the society in which they live. For kids with ‘special needs’, this can be hard, because there is so much effort put into segregating them from others ‘for their own good’. Because, you know, they’re ‘special‘.

Special stinks.

I don’t want my kids with T21 to be special.

I want them to be treated like other children.

Yesterday, I mentioned that Yirmi (6) has another evaluation coming up soon and my eleven year old asked me, “Why does Yirmi have so many tests and I never had any?”

Why, indeed???

Yirmi gets a label that says Trisomy 21, and is presumed to be so ‘special’ that he has to prove his worthiness before being given a chance to join a mainstream classroom. Not like other kids, who are presumed to be capable until proven otherwise.

I mean, would Yirmi or Rafael even develop and progress in any area of their lives if they weren’t being assessed every year? Amazing that non-special kids learn to sit up and walk and feed themselves without ongoing evaluations.

I don’t want my boys with T21 shunted to the side because they’re ‘special’, with a focus on how they are different rather than how they are the same. I don’t want them marginalized in the community and placed with those who are assumed to be like them just because they have the same label.

Truly, the differences are so, so small. Kids with disabilities want what we all want, they need what they all want – to be appreciated, to be included, to be valued.

This isn’t exclusively about those with disabilities – it’s really about us. It’s about how we value others, and the kind of world we want to live in.

Do we want to live in a world of kindness and acceptance, a world in which we are willing to make the effort for others to belong? Or do we want to wall ourselves off to be with those we presume to be like ourselves?

We don’t need echo chambers. We all benefit when we broaden our experiences to include those who bring something different to the table.

We need the willingness to live fully, and to love fully. And to include others so they can experience those things as well.

Avivah

Young man’s incredible dance performance – video

Trisomy 21

I love seeing people with Trisomy 21 living their dreams. I got teary eyed when I watched this video of Andrew Self, a 21 year old young man with Down syndrome competing on a show in England.

I kept thinking of how this young man’s mother must be feeling, her heart must have been ready to jump out of her chest with pride as she watched him. Moms are the silent warriors behind every successful adult, doing all those small things day in and out that will never be seen or acknowledged but that have made a difference. But she knows what it took to get him on that stage.

The way this competition is set up is that the performer begins in a closed studio where the audience is able to see him via video. 25 seconds into his dance routine, he has gotten 75% of the audience vote, the walls come up and he’s suddenly in front of the live audience.

In addition to watching this very talented dancer, I also loved seeing his best friend in the audience – and when he ran on to stage and hugged him I was more than just a little teary eyed.

Why is that? What is it that inspires this kind of emotion? As the parent of kids with T21 it’s not surprising that I would be touched. But why were so many people in the audience and even one of the judges crying when they watched this performance? What was it that people found so touching and inspiring?

I think there’s some element of the contrast between what was expected and what they saw.

Maybe it’s the unabashed emotion that both Andrew and his friend expressed. Most of us put a cap on their feelings, but they didn’t.

Maybe it’s recognizing what it must have taken to overcome so many barriers to reach this point.

What do you think? If when you watch this you feel a sense of poignancy, why do you think that is?

Avivah