Category Archives: Trisomy 21

My tips for helping the late talking child

Parenting, Trisomy 21, , ,

>>From your vantage point of five years into this, I’d love to hear what you feel are the best “tools” to help children with apraxia. I know you used Gemiini and flash cards. Beyond the obvious emotional support we offer to our children, I’m looking for practical advice. Thank you!<<

I’m happy to share what has been helpful for us!

First of all, even if your child isn’t speaking much, assume he understands. If he doesn’t understand yet, he’ll understand more as you give him lots of verbal input, filling his day with words and concepts. Building his receptive language reservoir is a precursor to his ability to express himself. Eventually the expressive ability will come.

Keep in mind that communication of any sort is the building block upon which speech is built. Don’t think because it’s not speech that it’s irrelevant to the question of how to deal with apraxia – communication skills are vital.

BUILDING RECEPTIVE LANGUAGE:

– Flashcards – The most obviously visual way to build receptive language is by using flashcards of words and pictures. (At some point I wrote about using the Brillkids program, which is bascially online flashcards and words – it’s a great program and I only stopped using it when I got a new computer and didn’t reload the program onto it.) Yirmi now repeats each word after me when we do flashcards so it’s become an expressive speech support at this point as well.

We also read lots of books.

– Actively engage your child in your world. Talk to him about what you see, give him space to have a turn talking, even when he doesn’t yet talk. Pay attention to his cues and respond to them. When your child sees that his attempts at communication are effective, he will continue to try to communicate. Like everything else, the more he practices communicating, the better he will get.

– Encourage verbal expression through play and constant interactions. I got the book Play to Talk, by Dr. James McDonald when Yirmi was an infant. I loved that Dr. McDonald (whose work spans decades and is an amazing advocate for late talking kids and their families) says that parents are the answer to a late talking child’s challenges, and that the home is the best place to learn and practice communication. It’s a big shift away from the prevalent attitude that paid professionals are the answer. His website is a great resource, as are his books. On his webpage about children with Down syndrome (and this is relevant to any late talker), he writes:

“After all these years, I am confident that parents can help children with Down syndrome give and get a great deal in life if they are willing to do a few simple but often difficult things:

  • play in the child’s world habitually
  • make children enjoyable play partners before they are obedient students
  • don’t worry about school language before children have a good vocabulary for daily natural communication
  • be very careful not to expect too little (by doing too much for children) or to expect too much (by setting up impossible jobs)
  • pay more attention to positive little steps than to things you may think are mistakes
  • act and communicate in ways children can do (matching)
  • interact back and forth throughout the day
  • be sure children are giving to you as much as you are giving to them”

I learned from Dr. McDonald to go into Yirmi’s world, not just to try to pull him into mine. That includes imitating the sounds he makes rather than only expecting him to imitate the words that I say. Also, I learned to simplify my sentences to match his level of expression to encourage him to respond; it actively pulled him into verbal interactions with us.

– Mediate the world for your child – Mediation is the heart of the methodology taught at the world famous Feuerstein Institute in Jerusalem. It was there that one of their facilitators told me that most people have to be trained to learn this, but that a small percentage of the population are natural mediators – and she informed me I’m one of them! For that reason it’s really hard for me to explain mediation, because it seems like pointing out the obvious to describe it.

Basically, rather than assume he will make the connections on his own, mediation is when you consciously facilitate your child’s exposure to the world around him.
Here’s a nice video that might give a bit more insight into mediation and the Feuerstein approach: Looking Up on Down Feuerstein video

Sign language – I taught Yirmi sign language when he was a young toddler, knowing that language was likely to be a challenge. This has been a hugely important tool for him, since he’s been able to express himself before he had the verbal ability to do so. As his speech has improved and become more clear, he’s dropped the signing. If someone doesn’t understand what he says verbally, he’ll repeat himself by saying the word and signing at the same time. Signing Times videos were a great resource. I also used Signing Savvy to look up words that I wanted to teach him – this is a site with lots of short videos demonstrating hundreds of signs. Signing Savvy was a resource for me to learn the signs, not a video to show my son.

– Gemiini Educational System– I’ve been using Gemiini regularly (I aim for a daily basis) for Yirmi since he was 2.5; we were one of the early families using it for a child with Trisomy 21. At that point it was primarily being marketed for kids with autism. It’s since become a well-known resource in the T21 world.

Gemiini is a web based program that uses a video modeling approach and integrates a number of speech therapy techniques. There are lots of amazing testimonials, including one woman who called me after a blog reader read about us using Gemiini and put her in touch with me. She had a 9 year old daughter with T21 who was completely nonverbal – withing two weeks of starting Gemiini, she began speaking!

Yirmi wasn’t one of the kids who had an amazing jump in speech right away. Actually, it took about a year and a half until we started to get speech – we seemed to be on the very slow track. I’ve already told you my belief that it’s important to keep my eye on the end goal and not get discouraged when the progress in front of me seems slow or doesn’t seem to be happening at all. I never asked about the severity of his apraxia but I can assume it was significant, based on how long it took us to see changes. But we knew changes were happening.

The first thing we noticed is that he began to move his mouth as he watched, trying to imitate the shape of the mouth he was seeing on the screen. As a 2.5 year old, he had never done that. He had only a few vowel sounds that he could make when he started, but eventually he started imitating other sounds.

To sum up a response by Laura Kashbar, creator of Gemiini to the question of how do you know if Gemiini is having an effect: “1) Receptive language improves – is your child understanding more? 2) Gemiini is switching the focus from a daydream state/passive network into active network; when waking up from a daydream there are some things that will happen: a) Eye contact, b) child seems more with it, not in his own world so much, c) will pay attention to sounds when in the past he ignored it, d) get feeling from him that he’s more present. 3) Will see new sounds, new babbling, be more aware of mouth. 4) Fine motor skills increase – great indicators of neurological changes. 5) Gross motor improves dramatically. All of these come together over time to get student going where he needs to go. There’s a global improvement that happens, it doesn’t start with expressive language – it starts with all these other things.”

PHYSICAL DEVELOPMENT:

There’s a very significant connection between speech development and physical stimulation. Everything in the body is connected and the better the body works, the better the mind works. Exercise creates neurogenesis. Of particular importance are activities that integrate cross patterning movement (the hand and feet working in alternate motions).

– Walking/running – This is the ideal cross patterning activity. A saying coined by the Institutes for the Achievement of Human Potential is “Two miles of walking equals talking.” (For a young child, the focus would be on crawling and creeping, which works on lower motor levels of the brain. Don’t rush this stage in order to get to walking – crawling is super important developmentally.)

I’ve been trying to encourage walking for Yirmi when we need to go somewhere, even though I can get where I need to go much, much more quickly if I stick him in a stroller or carry him. This summer he’s been attending day camp (his first time ever!!) and we’ve been starting our day by walking to the bus stop and then from the bus stop to the camp. There are a lot of distractions on the way and this short walk from the bus to camp takes a long time. I try to leave extra time in my schedule whenever I take Yirmi anywhere because I want to encourage him to walk and at the same time, I don’t want to be impatient or feel pressured to get somewhere by a certain time.

He isn’t yet consistently walking very far but stamina is built little by little. Like everything else, we’ll continue to support him and with time his ability will increase.

– Trampoline- In a Facebook group for parents of children with T21, a parent shared that her speech therapist recommended jumping on a trampoline to benefit her son’s speech. That suggestion resonated with me as it matches my approach to therapy and development – to do it in a way that is fun and a natural part of your daily life. He loves the trampoline, and so does every else in the family! (There are lots of great health benefits to using a trampoline as well, like stimulating the lymph system,building immunity and increasing muscle strength – more benefits here.)

Jumping on the trampoline - fun and great for speech!
Jumping on the trampoline – fun and great for speech!

Yirmi quickly learned to do tricks on the trampoline. This physical acuity has extended to when he’s on the ground – he started regularly jumping with both feet within a week of using the trampoline, and shows off his somersaults whenever we have guests!

– Swimming – we put Yirmi in swimming lessons a couple of months ago. He was really scared to do more than sit on the second stair at the public pool and I realized it would take many months to build even basic comfort in the pool at that short weekly lesson. So soon after that I bought an above ground pool to give him a chance to practice daily and build his comfort in the water. He and our other boys now spend hours every day in the pool and his comfort in the water dramatically increased in a very short time.

y - swim 4

y - swim 3

He imitates what he sees his brothers doing, and has learned to keep his face in the water. He can also stay underwater for up to six seconds, simultaneously using the arm motions like those used when doing the breaststroke.

y - swim 2

y - swim 1

To continue to support Yirmi’s physical development, I’m planning to build (or more accurately, for my kids to build :)) a pergola in our yard where we can hang swings. I’m hoping we can integrate monkey bars into the frame, since brachiation is a wonderful therapeutic activity (and of course, fun!).

I’ve been wanting to do this since the end of last summer but ds18 has been at school and not available for a long enough period of time to spearhead this project. He graduated high school three weeks ago and the next day began his job as head counselor for a local camp – now that he’s finished that job, he said he’ll make time to start this project in the next week or two.

Nutrition- we don’t give Yirmi gluten or dairy, both of which are difficult to digest and clog the digestive system. The digestive system/gut fuction is intrinsically linked to brain function. A mind that is clogged up doesn’t work as well. He continues to eat a fairly clean diet – minimal processed foods, mostly proteins, vegetables, fruits, and whole grains/legumes.

Reflex integration – I am very interested in doing reflex integration work with Yirmi, and after a lot of research on the topic chose a specific cold laser protocol. However, when I attempted to purchase the QRI cold laser this past winter, due to a technical problem with order processing we had to drop the idea for the time being. If at some point someone will be able to bring it for us from the US, we’ll try purchasing it again! Parents have had great results from the laser but obviously I don’t have a personal testimonial on that.

How is Yirmi’s speech at this point, as a newly turned five year old? He began saying words when he was four. He’s now speaking sentences of up to seven words (though it’s still hard for non-family members to understand him), mostly words of one to two syllables. His speech has accelerated very quickly and seemingly out of the blue, but it hasn’t been out of nowhere – we’ve been supporting his speech in these various ways for years.

Avivah

See the possibilities in your child, not the limitations

Homeschooling, Parenting, Self-Growth, Trisomy 21

Can you believe that Yirmi just recently turned 5?

Until Yirmi was born and we received the birth diagnosis of Trisomy 21, I knew very little about what that entailed.  I had the stereotypical perceptions of people with Down syndrome based on very limited personal connection.  When Yirmi was born, my eyes were opened to a much broader, more appreciative and more accurate way of seeing people with differences.

Though people tend to assign a lot of significance to the differences (skin color, religion, political affiliation, income level, abilities), we’re all more alike than different, and we all benefit when we place more emphasis on what makes us similar.  More than anything – every one of us wants to be valued for who we are.  And this has been my focus in raising Yirmi.

Yirmi and his big sister, May 2017
Yirmi and his big sister

We had a 3 hour appointment with a developmental pediatrician very recently (the first since leaving Karmiel 2.5 years ago), who was blown away by Yirmi.  She kept exclaiming that she’s never seen a 5 year old with T21 like him in her decades of working in the field.

She said that he is bright, communicative, emotionally present, focused, takes initiative, and has the confidence to try new things in a new environment.  She told me that these aren’t qualities that she’s seen in a child with T21 of this age, particularly combined with a language delay like his (‘Usually these kids are shut down.’).

A week later I took Rafael for his intake appointment, and again she remarked on how taken she was with Yirmi.  “He’s so emotionally intact.”

y trampoline 2

Why is it the norm for a child with T21 to not be emotionally intact?  To not be confident or communicative in new situations?  To not trust their abilities?  To not be willing to try new things?  To not keep trying to be understood?

Could it be in part because of how those with whom they interact regularly treat them?  Are the frameworks in which they spend most of their time focused on what they can’t do instead of what they can?  Are they being defined by limitation instead of possibility?

Having fun with Daddy!
Playing on the trampoline with Daddy!

People have told me Yirmi doesn’t act like he has Down syndrome, or that he must have it ‘just a little bit’.  What does that even mean??? What limited perceptions are those comments based on??  You can’t have T21 just a little bit – either you’ve got it or you don’t.  He definitely has garden variety Down syndrome, present in every cell of his body.

Though professionals have told me that Yirmi is doing very well, it’s not because he’s inherently different or better than any other child with T21.  I’m not holding him up as an ideal or trying to imply he’s the most amazing child with T21 ever. Comparisons of performance and impressing anyone else isn’t my goal – he is who he is and and regardless of percentages or testing or anything else, he is enough as he is right now.

Having said that, in line with the 80/20 principle, I believe 80% of children with T21 can be doing just as well if given similar support.  I don’t think he should be as unusual as the professionals say he is.  Actually, I think a lot of kids with T21 are already doing great but probably most of them are also being treated like outliers.

I passionately believe that every child deserves to be treated with respect. With respect for where he is right now, with support for whatever limitation he has at this time, and with belief in who he will be in the future.

It’s not hard to do this.  It’s really not.  It may be counter cultural, but it’s not hard.  People think I must ‘work so much’ with Yirmi.  I don’t see what I do as work; he’s not my project to fix.  What I do that I think is of the most value is to parent him the same as all of my other children – I look at what his needs are and try to find integrated ways to support those needs in our daily lives.

Integrating support in a fun way - trampolining!
One example of how we integrate support in a fun way – trampolining!

In my opinion, the most challenging thing is to recognize the aspects of your thinking about your child that are limiting, and then to change those thoughts.  Your actions will follow your thoughts, and your child responds to your thoughts about him.  If you think your child is capable, you’ll have different expectations and take different action than if you think your child has significant limitations.

To consciously shift from a paradigm of limitation to possibility means seeing the potential in your child and acting in alignment with what you trust he will become, long before you see that in him. 

If he can’t yet talk or can’t yet walk, it means believing that if you keep giving good quality input, that you can trust the timing of the output (ie performance) even when it’s taking a lot longer than you would like. At age 4, Yirmi still hardly said any words.  Now a year later, we’re seeing an explosion of speech.  And I trust that we’ll continue to see significant gains with time.

Shifting that paradigm means reflecting your child’s positive inner value to him even at times that he’s immature, irresponsible, unreliable, hypersensitive, or mean.  It means trusting your child’s potential and holding on to that vision even when external circumstances might give you reason to feel discouraged.

And that’s something that benefits every child,  regardless of diagnosis!

Avivah

Why we chose foster care rather than adoption

Foster Care, Parenting, Trisomy 21

Can you believe it’s only been six weeks since R joined our family?!?  He so quickly became an integral part of the family that my younger boys told me they can hardly remember him not being part of our lives!

R - 10 weeks old (photography by Chani Ceitlin)
R – 10 weeks old (photography by Chani Ceitlin)

During this period, we’ve constantly been asked (literally in almost every conversation): “Why did you choose foster care rather than adoption?”   

The answer is simple, not based on idealism or preferences but need.  Here in Israel, babies with Trisomy 21 who are given up aren’t usually available for adoption – they go into the long term foster care system. And so we went where the babies who needed families were.

I have been very pained seeing babies with T21 being given up because of their diagnosis.  According to the placement social worker, they are the only children voluntarily given up as newborns – not those with much more complicated medical diagnoses or those with a more limited long term prognosis.

R - 10 weeks old
R – 10 weeks old

It was a combination of our strong family values and the desire to be part of the solution rather than complaining about the situation that prompted us to begin the qualification process to be foster parents specifically for an infant with T21.

“Practically speaking, what does it mean to foster?”

Our intention is to raise R as a member of our family in every way and unless his foster care status changes, he will be with us until he is an adult (age 21).  While in many ways this is very similar to an open adoption-  regardless of how we feel or what our intentions are, R is not legally our child.

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That means that we will have social workers coming into our home at least monthly to check on him for the next two decades.  It means he has a different last name than my other children.  It means visits from the birth parents.  It means significant decisions for him have to made in conjunction with his birth parents and social workers, and my personal preferences regarding his care can be overridden. (It also means that I needed signed permission before posting any of these pictures!)

Most significantly, if his birth parents were to change their minds they could at any time take him back.  Though it’s unusual for children who were given up because of their special needs to later be taken back, it does happen.

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I can’t lightly skip over this possibility because it has created a pervasive sense of unease within me that I didn’t anticipate.   I’ve shared this feeling with our social worker, and her answer is to sympathize but say, “This is the reality of foster care,” and to remind me that it’s the birth parents’ right to take him back whenever they want.

“Will R be able to be adopted at some point?”

When we were shown R’s file, we were asked if we were willing adopt him if his status changed.  We immediately said ‘yes’.  However, based on what was explained to us about why and when children are transferred to the adoption track, it seems to me the likelihood of him being placed for adoption is extremely low.

We didn’t go into fostering without a great deal of thought and discussion as a family.  We knew there would be challenges and we decided that letting fear of the unknown keep us from offering our home to a child in need wasn’t the right choice.

And though it would be understandable to hold back a tiny piece of one’s heart for self-protection, we’re not letting fear keep us from unreservedly loving our newest addition.

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Though the external circumstances aren’t perfectly smooth,  we’re so happy and grateful he’s part of our family!

Avivah

**Thank you to the wonderfully talented, patient and sensitive Chani Ceitlin for her photography!**

Exciting update on Yirmi’s growth!

Parenting, Trisomy 21

Some of you may remember when Yirmiyahu was younger (he’s now 4.5) I was quite concerned about his growth rate.  He was born weighing 7 pounds but by the time he was 12 months had dropped down to the 50%.  And that downward trend continued the older he got.

You have to know that I’m not a parent who usually cares at all about growth charts.  I can see my kids growing and I trust they’ll each grow at the rate that is right for them.  But Yirmi was different and that’s why this relaxed mom got increasingly concerned.

Yirmi dropped completely off the growth charts for quite a while; he was getting older and older but hardly any bigger.  As a result I was doing a lot of research on human growth hormone deficiencies to gear up for getting him tested.  Two years ago I took him to a pediatric endicronologist to suggest starting the testing for growth hormone deficiencies, she told me that his malfunctioning bladder and kidney might be the cause of the issue.  Her explanation was that his body was using so much energy to function and compensate for the malfunction, that there wasn’t any energy left to grow.  She suggested waiting until after his reconstructive surgery to see what happened.

Well, in October 2015 Yirmi had major surgery and the issue was finally corrected.  He was last weighed and measured before the surgery. When I recently I took him to the pediatrician, I asked to officially check his measurements.

Pictures don't do justice to Yirmi's cuteness but hopefully you can see how tall he's gotten even without him stretching out (I'm 5'9).
Pictures don’t do justice to Yirmi’s cuteness but hopefully you can see how tall he’s gotten even without him stretching out.

She was astonished to see he has gained 5 kilos since then.  And we were both even more taken aback to see he has grown TWENTY TWO centimeters.  Do you know how huge that amount of growth is in less than 18 months?!?  He’s gone from the very bottom of the growth chart to now being in the 35% for height on the typical growth chart!  That means Yirmi is finally the same size as his same age peers!

He’s not a little guy anymore.

I knew he had been growing a lot because after two years of wearing the same size, his clothes had finally gotten too small and needed to be replaced.  And then I replaced that size with another size.  That’s why I didn’t make a special effort to have him measured until now – I was sure he was growing.

I can also see he can reach much higher to press the buttons in our elevator than when we first moved here in April 2015!

But to hear how significant the growth has been, and to know that he’s really solidly on the typical growth chart was quite emotional for me.  It was such a big concern for such a long time, and poof…now it’s not.

So much gratitude…and I was reminded to share this when recently speaking to a mother of a child with T21 who at age 3 is the same size Yirmi was at that age.  It’s one more reminder for me not to get stuck in the limited picture that sometimes presents itself, but to trust in G-d’s remarkable timing!

Avivah

Baby R’s homecoming! (pics)

Parenting, Trisomy 21

Exactly two weeks after our official meeting with his birth parents, Baby R has officially joined our family!

Not only was the timing of this placement really fast, it is also amazing that just one week after we received our legal authorization to foster, we were contacted about Baby R.  Usually families wait for months.

When we were told about Baby R, we didn’t know if he had been named yet.  Ds14 told my husband that if we would be able to name him, he had a particular name in mind that he thought would be perfect.

A week and a half later when I first spoke with his birth mother I asked if the baby had a name.  She told me the name was Rafael.  When I told ds14 the name, he told me that this was the name he had thought of! Ds14 told me then, ‘It just feels like this baby is meant to be part of our family.’  Indeed we all had that feeling.  And the name fits perfectly with the kind of names we choose for our kids.  (Not to mention it’s not a name we’ve used yet for our other seven boys!)

Yesterday the placement took place and honestly I found it emotionally extremely draining.  Everyone involved was great – it’s just not the easiest experience.

I called from the taxi when we were a minute from home and the seven children who were at home all ran down and were waiting to greet us when we opened the doors to get out.  Such excitement!  (I’m sure the taxi driver was wondering what the big deal was.  :))

Everyone wanted a turn holding the baby, and to be fair we went from youngest to oldest. I cautioned everyone to stay calm and quiet because going to a home from the hospital is a big transition, and we didn’t want to overwhelm him.

Ds4 with Rafael
Ds4 with Rafael
Ds7 with Rafael
Ds7 with Rafael
Ds9 with Rafael
Ds9 with Rafael
Ds10 with Rafael
Ds10 with Rafael
Ds14 with Rafael
Ds14 with Rafael
Ds18 with Rafael
Ds18 with Rafael
Happy to watch even if not able to hold him!
Happy to watch even if not able to hold him!

Dd20 was at work and didn’t get home until later, and somehow even though dd16 spent hours holding him, we don’t have any pictures of her!

Dd22 with Rafael

Dd22 with Rafael

pic - baby hand

Ds23 usually comes home only every few weeks for Shabbos but made a special trip home for the night to meet Rafael.

Ds23 with ds4 and Rafael
Ds23 with ds4 and Rafael

I was up every couple of hours in the night since his days and nights are reversed, but that’s okay.  We’ll get that straightened out within a week.

I am so grateful for the generous nursing mothers who shared their milk with me so we would have it here for Rafael when he arrived.  His immune system and digestive system are already benefiting!  I’ll be needing lots more as time goes on but right now we have enough for at least the next couple of weeks.  (If you are a healthy nursing mother of a baby under 6 months who would like to help out with this and live in this area or have a way to get milk to us, please be in touch with me!)

It’s funny how everything happened so quickly but it feels so right for him to be with us. It’s really, really wonderful and I feel very blessed.

Avivah

Meeting Baby R for the first time!

Parenting, Trisomy 21

Ds18 came home from high school with a nasty virus a week ago. He’s still home, and so is the virus – that has generously been shared with just about everyone else in our family!

This has been a rough week for everyone and I spent three days in bed sick, which isn’t typical for a busy mom even if feeling under the weather.  But I couldn’t do anything else – I was completely knocked out.

I pumped vitamin C and fluids, listened to healing meditations and slept non stop for many hours because I didn’t want to miss our scheduled date to meet Baby R.  And I was there – I was weak, I couldn’t speak very loudly and my brain felt like there was a layer of fuzz overlaying it, but I was there!

Usually the visit to the hospital takes place with both sets of parents and a social worker to facilitate.  I guess we did so well handling the initial meeting privately that they trusted us to handle this one on our own!  The reason there wasn’t a social worker wasn’t because it was ideal – it was done in order to accommodate the differing schedules of all involved – there was no possibility of all of us being available on the same date otherwise.  This was the issue that would have kept the placement from happening with our family, but they had told us they would work with us and they really did.

I very much like and respect the birth parents, and I know they feel that way about us.  But that didn’t make this an easy visit.  Not for us and not for them.

What do you do, when shown the baby that you hope and anticipate will soon be your son, and told by the staff you can hold him….when the parents who gave birth to him are right there watching?  Do you pick him up with obvious delight, do you croon to him and tell him how happy you are he will be joining your family soon?  Do you hold him close to your heart and feel  emotion and connection with this tiny person?

No.  I couldn’t.  Not with them there.

So I asked my husband to pick him up first. 🙂

The parents sat down with us, and I didn’t feel right to ask them to give us privacy.  It didn’t feel kind.  After a few minutes, my husband passed the baby to me.

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I felt like an interloper stealing someone’s child.  What do you say?  I told her he’s beautiful.  He really is.  What else could I say?  “Are you sure you don’t want to keep him??  Are you going to change your mind and take him back later on?”

After a bit longer they excused themselves and said they’d give us some privacy.  I really appreciated their sensitivity.  It can’t have been easy for them to see us with the baby.  And I was so happy to have the chance to let go of the emotional barrier I put in place and instead feel connected to him as his soon-to-be mother.

IMG_20170217_100957The staff members going by all seemed to have some sense of who we were since they gave us very warm smiles.  A bat sherut (someone doing her national service at the hospital) who passed by smiled at us widely, then the second or third time she passed by (we were sitting with him for about an hour next to a corridor) told me she bought the outfit he was wearing. She then burst out, “Oh, I feel so calm now that I see you with him!  I’ve been so worried what kind of family will take him.  Is there any chance that you’ll take him?”

When I told him we were definitely taking him and the transfer was scheduled for three days later, she was so so excited.  She showed me all the pictures she’s taken of him since he was born and asked I wanted them – I definitely did!  I was so happy to see how loved he was.

I also met a woman who has been been coming twice a week for the last two months, three hours each day.  She’s part of a volunteer organization that holds babies in hospitals who don’t have someone to hold them.  (Other volunteers have come on the remaining days.)  She told me she takes him outside if the weather permits and also puts him skin to skin since that’s so important for babies.  Such a warm, caring woman.

In addition, a family member of the birth parents who lives in the area visited daily until this past week, and his parents came weekly despite the distance.

We met with the doctor, who told us Baby R is something of a celebrity at the hospital and the staff is crazy over him.  I really saw that.  So dramatically different than the situation with Baby M who was left in a mother baby convalescent rest home and was in such an emotionally sterile environment.  It was really nice to see how Israeli hospitals – specifically this hospital, Laniado Hospital in Netanya – is focused on taking care of the child’s needs in non-ideal situations.

After getting home, I called the social worker and left a message letting her know how it went.  She returned my call, and exclaimed, “You did it!! You really did it!!”  She told me the hospital visit is a very hard one even with a social worker there to manage it, and she’s sure that we handled it well.

We sent the pictures to the kids while we were still at the hospital, knowing they wouldn’t want to wait until we got home.  They are so, so excited!  He is adorable and we can’t wait to welcome him home.

So after all the ups and downs, it looks like Baby R is really going to join the Werner family!  The authorization that was holding everything up suddenly was processed a week ahead of the scheduled hearing date, there’s a date for the placement, and the doctors have scheduled his release so he’ll be ready for the meeting with the social workers.

But there’s a part of me that doesn’t want to push ‘publish’ on this post, because of that tiny voice whispering, “What if they change their mind?  What if something else unexpected happens?”  I’ve had that feeling at other points when sharing this experience here, and as I decided then, will continue to share the journey whatever it brings.

I hope my next post will be about his homecoming!

Avivah

 

The meeting with the birth parents was great – now there’s another problem

Parenting, Trisomy 21

I began writing this post after our official meeting with the parents and social workers two days ago, but due to changes needed to change the title, tone and information that I was sharing.

The meeting with the birth parents went really well. When she opened the meeting, the placement worker told us that this is the first time in the hundreds of placements she’s facilitated she’s ever been at a meeting in which the two sets of parents met in advance.  After the meeting, she exclaimed a few times with delight at how very smooth the meeting was and told me it was a really good thing that we met on our own!

I’m going to fast forward and delete a bunch of things I wrote that are no longer immediately relevant.

After this meeting we got a clear go ahead with an anticipated homecoming date for the baby (for now to be referred to as Baby R) in the coming week.  I was told to cancel my plans for a trip to the north, which I did, because Baby R would either be here by then or the placement would take place on one of the days that I would be away (Tue/Wed/Thur).

We also scheduled a visit together with the birth parents to take place on Friday to see Baby R and speak with his doctors.

I went directly home, very happily informed my kids Baby R would be here within a week and went out to buy a crib.  Ds14 and I converted it to a cosleeper and set it up next to my bed.  I requested a refund for the conference I had planned to attend, and posted a request on our local group for donations of mother’s milk for Baby R.

Yesterday I went out to shop for a stroller.  On my way home, I got a call that there has been a significant wrench thrown into the plans.

When I was first told about Baby R, I learned that his parents aren’t Israeli citizens.  At that time I asked if there was any legal concern that could delay the process and was told that there wasn’t.  That’s what the social worker believed until two days ago.

disappointmentIn fact there is a problem.  A significant problem.  There is a hearing to be held regarding his status by the higher ups in the government on February 20, and nothing can happen until then.  That doesn’t mean he can come to us then; it means that depending what their decision is, whatever process is necessary will begin at that time.

The social worker told me this is well beyond the realm of social services, and they are trying to find someone with proteksia (pull) to get the date of the hearing moved up.  (Why was this scheduled for Feb. 20 when the paperwork was submitted over a month ago and this is regarding a tiny baby waiting in the hospital?  That’s government timing for you.)

Although the hospital has authorized our visit on Friday, we have been asked to cancel because the social worker doesn’t want us to meet Baby R until after this hearing has taken place.  The placement definitely won’t take place in the coming week and today I will be making reservations for the conference that I cancelled a couple of days ago.

So….it’s a bit of an emotional roller coaster.  None of us expected this; we all thought the biggest variable would be if there would be a meeting with the birth parents and how it would go.  None of us thought that there would be any delay once that was over and the jubilant and optimistic tone that we all left that meeting with has been replaced by disappointment and caution.

I say it’s a bit of a roller coaster and not more because it’s completely clear to me that the timing of all of this is in the hands of G-d.  Technically we shouldn’t have gotten to this point, based on the constraints that were in place regarding our availability.  And everything has proceeded in spite of that.

I don’t know what will happen, and I don’t know when it will happen.  I don’t even know for sure that this placement will happen.  We all (our family, the birth parents and the social workers involved) all want to see this happen very soon.  So we’ll have to continue to wait and see how every unfolds.

Avivah

Meeting the baby’s birth parents

Foster Care, Parenting, Trisomy 21

Before I met the birth parents of the baby whose file we had been recommended for, I had a clear idea of what we were looking for.

I have a high value for win-win relationships and it was important to me that the parents are people whom we liked and respected, and who would like and respect us.  It’s also important to me that the child we bring into our family can be raised like all of our other kids, to have a true sense of belonging – not to be pulled between two families.  This was my biggest concern about fostering.

If I made a wish list of what I wanted the birth parents to be like, it would look like this couple.  Really.  I couldn’t have custom ordered a better set of parents to be in this relationship with.

By the time they met us, they had already met with two other families and interviewed a third on the phone.   (We were the only family recommended by our agency; the other families were through other agencies.) The wife told me they aren’t going to just take whoever is available, that they’ll wait two or three weeks longer if necessary to find a really good home for him. Since this is a placement for the next 21 years, they want him to be in a home where he will be truly loved and nurtured.

(This placement is in some ways more similar to an open adoption than what is typically referred to as ‘foster care’.  Foster care is intended as a temporary situation with the intent to rehabilitate the family so the child can return.  We certified to do foster care for children with special needs, and in these cases, the child is given up because of a disability that the parents aren’t able to deal with and there is no expectation that the child will return to live with his biological parents.  However, the biological parents are expected to maintain some kind of connection with the child – this can be as infrequent as two hours once a year – the child keeps their last name and they have the legal rights to make decisions for the child.)

We were the last option – the couple was told some inaccurate information about what kind of community RBS is and that’s why we weren’t initially contacted for a meeting. That was later corrected and then they were in touch with me.

They are kind, intelligent, caring, open minded, and very very much appreciate the kind of home environment we can provide.  Our expectations of one another and how we see the fostering relationship being handled is very compatible.  We genuinely like and respect them, and it seems the feeling is mutual.

We agreed that we’d all like to move forward with this placement and if it were up to us, we’d have all driven to the hospital together and taken care of it right then!  But it’s not up to us.

Though there are two motivated sets of parents and a six week old infant waiting in the hospital who is medically ready to be released, we have to wait for the social workers to be in touch with one another to set an official time for us all to meet in their presence.  Then there are technical details to sort out and then we have to meet with the doctors at the hospital and meet the baby himself.

None of that sounds to me like it should take that long and I expected that the parents having already met would have expedited this process significantly.  But there seems to be a protocol that needs to be followed regardless.

Almost two weeks ago I was told the placement could be done within two days, and then told it could even be pushed into one long day if necessary.  Today I asked for some kind of timeline so I can make plans for my week – I can’t leave every day completely open just in case they decide to call me in at the last minute.  She said that she really can’t tell me how long it could be, that all these factors aren’t in her control and it could take another week.  Or maybe more?  It’s very undefined, which leaves me wondering how long this could drag out for?

I called a friend who is an experienced foster parent and outlined the entire situation.  Is it likely, I asked, that in this situation – with both sets of parents in agreement along with us already being certified – that something can happen so that it won’t work out?  She didn’t think it was likely.  Possible, but not likely.

An Israeli friend who is a lawyer told me to be careful not to get emotionally involved, that until everything has been tied up, there’s no assurances of anything.

She’s right.  Anything can happen and there’s no guarantee that this will work out, as positive as it all seems right now.

So that’s where I am now.  Once more, waiting and wondering.

Avivah

A surprising call from the baby’s mother

Parenting, Trisomy 21

I told you that we emotionally closed the door on the possibility of bringing home the baby boy whose file we were shown.  I was disappointed but I had closure and closure is good.

Two days after my final talk with the social worker, I was waking up from a mid day nap when I heard the phone.  Still lying in bed, I picked up and heard someone on the other line introducing herself – the baby’s mother.   At that moment I impressed myself with how fast my mind cleared and simultaneously how completely calm I was.  You would have thought someone had called to ask me what time it was.

I didn’t think that it was typical protocol for me to be contacted directly, but then again, I had been told the birth parents wouldn’t know anything about us until we met them in the agency’s office, that we would have complete anonymity until that point.  And the next thing I knew, I was told that their social worker gave them details about us for them to check us out.  Clearly what was said and what happened in practice weren’t congruent, and though it was completely unexpected, I wasn’t shocked to receive this call.

We spoke for 25 minutes.  She told me she had already met two other potential families and they had one other family to meet in Bnei Brak.  I asked some details about the baby and her family, she asked about my family. My impression of her  was highly positive and I appreciated her obvious love and concern for this baby.

We set a time to meet two days later with both of our husbands.

A short time later, our social worker called to tell me that the family was still considering us.  Previously we had all assumed that they weren’t interested and that’s why they hadn’t been in touch.

If she expected me to be surprised, then I disappointed her!  I told her the mother had called me directly a short time before.  The social worker was definitely taken aback. She wanted to know about our conversation, and I told her it was very pleasant and planned to meet.

Understandably, she wasn’t happy with this idea, and told me it wasn’t allowed for the two sets of parents to meet without social workers supervising.  I told her that the parents had met other families privately; the social worker explained that different agencies have different policies and the other families weren’t with her agency.  Finally she said she’ll speak to her supervisor and get back to me about what to do.

She called me back a short time later, and said that they never allow this, it’s completely outside of their protocol.  But in light of the fact that there’s a baby who needs a placement waiting, they’re authorizing me to meet with the mother privately.  If we both agree that we’d like to move forward, all four parents will still need to meet in their offices with the social workers present to observe our interactions.

I feel quite grounded about all of this. We’ll see how the appointment with the parents go.  If we get along, then we’ll move along to meet with the parents and then the doctor and meet the baby.  If we don’t see eye to eye on expectations, then we’ll agree to not move forward with this placement.  Of course I’ll keep you posted!

Avivah

Our fostering deadline passed and nothing has moved forward

Foster Care, Parenting, Trisomy 21

Some of you who have seen me in person since my last post have asked me what’s happening with the fostering situation.  And the answer is, nothing.

Our deadline was Tuesday.  On Monday afternoon I contacted the placement social worker to ask if she had set up an appointment for us to meet with the baby’s biological parents.   By then we had been waiting a week for this appointment.   She told me she called the social worker representing the parents that morning and since the office was closed due to a strike, the appointment couldn’t be made for the next day.

So I said, “So that’s it, right?  We can take this possibility off the table.”  And she said, “Well, that depends on you and your husband.”  I asked her what she  meant, and she said if we would be willing come in when an appointment could be made it might still be an option.

I was pretty annoyed at this response, as if the responsibility for the outcome depended on us when we were the only ones who had been timely during this period. We made ourselves completely available and from the very beginning were super clear with them that beyond Jan. 31 we couldn’t continue with the process.  I told her that we did everything we could have done and it wasn’t up to us, it was up to them at the placement agency to be flexible about meeting us during non-work hours if it was going to happen. And since they already said they wouldn’t do that, then was nothing more we could do.

After that conversation it was actually a relief to know that it was over.  It was a disappointment, but it was a relief.  Every day I was waiting, waiting, wondering…and now I don’t have to wait and wonder anymore.

By the way, I heard back from the contact person about the other request for a foster family for a baby with T21 that I mentioned in my last post.  The baby that needs a home is Baby M, who we spent so much time with a few months ago when she was left as a newborn at the rest home for new mothers.  Believe me, I wasn’t expecting that at all when I responded to that email!

Contrary to what the plan had been, she was placed with a relative for a few months and now they’re looking for a long term placement (she’s 5.5 months).  I was very upset to learn she hadn’t been placed with a long term family.  Of course I don’t know the specifics and I trust that everyone involved in making the decision had her best interests at heart, but I’m concerned about such a small infant having to undergo so many significant transitions. I had to repeatedly remind myself that G-d is running the world and has the perfect plan for each person.

Just in case you’re wondering, I emailed the person back and asked her not to forward my email on to Baby M’s family.  It’s clear to me that our part was to help her when and how we did, and that this baby is meant to be part of someone else’s family.  Hopefully a wonderful family and very, very soon.

Avivah