A few days later, I had a three hour meeting with staff at his school, who were shocked to hear that we had already not only scheduled the evaluation, but completed it.
Literally, their mouths dropped open. One of them clarified, “I was here 7 or 8 weeks ago and it wasn’t even scheduled yet.”
“Right”, I told her, “I tried to contact the social worker the next week and after two weeks reached her. She scheduled me for an intake appointment right away, and then the evaluation was scheduled within 5 weeks of then.”
They all shook their heads disbelievingly, telling me it usually takes many months to complete this process, and credited the social worker for her assistance in moving this process along.
After I went home, I thought about their reaction and felt it would be appropriate to express my appreciation to the social worker for her help. Just because it’s her job doesn’t mean that I shouldn’t let her know her efforts were appreciated!
I would call her and warmly thank you. No, I would send her an email. No, I could give her a little token of appreciation, like a chocolate bar with a note.
But I didn’t do anything. Because any idea I had felt too insignificant and any idea that was bigger felt too hard. What would I send, and how would I wrap it and I wouldn’t want it to be too fancy but I didn’t want to send something embarrassingly small. And then I’d have to make a trip to the store for a nice bar of chocolate and a thank you card and cellophane and ribbon to wrap it all up.
Finally, I told myself that it would be better to do something than completely lose the opportunity, since I was clearly on the path to doing nothing.
So I took a plastic plate, put an apple, pear, clementine and a small bag of dates on it (that’s what I had in the house). I wrote a little note: “Dear Social Worker – Thank you for your dedicated help to us, we really appreciated it. Signed, Avivah, mother of Yirmi”.
I put a plastic bag over it, tied the top in a knot and popped in to her office. She was with a client, so I just handed it to her with a smile and said,”Thanks for your help, this is a little something for you.” She gave me a big surprised smile and I left right away, not wanting to interrupt her any more than I had.
A few days later, I got the following email:
Subject line: תודה על הכרת הטוב (Translation – Thank you for your appreciation)
הי אביבה.
רציתי להגיד לך תודה על הפירות. לא הספקתי להתרגש ביום חמישי, אבל אתמול כאשר אכלתי את התמרים והם היו כל כך רכים, קטנים ומתוקים חשבתי שהם באמת כמו הילדים המיוחדים שלנו.
אז תודה, ריגשת אותי.
Translation: “Hi, Avivah – I wanted to thank you for the fruit. I wasn’t able to respond on Thursday but yesterday when I ate the dates, and they were so soft, small and sweet, I thought that they are truly like our special children.
So thank you, you really touched me.”
Her note left me with a warm feeling and gratitude that rather than getting stuck in my head and wanting to express my appreciation perfectly, I did what I could.
As the saying goes, “Done is better than perfect.”
Avivah
PS – Several hours after posting this, I had a meeting with seven different professionals regarding Rafael’s current placement in his daycare inclusion program. Imagine my surprise to see this same social worker sitting in the room when I arrived! It’s a small world and one never knows when the effects of your positive or negative interactions with others will come back to you.
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.
A modern day twist to the philosophical tree falling in the forest question: if your daughter has a baby in the digital era and you don’t have a picture, did it really happen??? 🙂
Yes, she did, yes I was there and very, very involved – and no pictures of any of it.
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Did you know that many years ago, I was a childbirth educator and doula? I stopped a little before my 18 year old was born, since the childcare arrangements for my own children made it impractical for me to continue attending births.
This was the first birth I’ve been at since then (other than my own, obviously!), and it was incredibly meaningful. There’s no comparison between any other birth I’ve attended and being with my own daughter.
My daughter-in-law told me she thinks it’s different if your daughter or daughter-in-law give birth and she’s right to a degree, but I think the biggest factor is if you’re present at the birth or not. It’s a huge bonding factor.
While I was willing to attend my daughter’s birth, I didn’t make any presumptions that I’d be asked to be there. Labor and birth is a very intimate and personal time, and it’s an act of trust and relationship to be invited into that space.
When she asked me to be with her, we talked about what she’d like my role at the birth to be. I told her I assumed she’d mostly want to be left alone to relax and be with her husband, which she agreed with.
That’s not what ended up happening. Things picked up very quickly and by the time I got to her house, she was ready to leave for the hospital.
A labor that progresses quickly sounds great, until you take into account the body has to do all the necessary preparations for the birth in a very short and intense period of time rather than being spread out. Quick labors are generally very challenging labors.
As a result of how quickly this labor progressed, I was very physically involved right away, and quickly was reminded of the incredible physical effort it takes to provide effective birth support.
I’ve never been as symbiotically involved in any birth I’ve attended as this one. I was aware in a way that I’ve never been before, how critical the level and quality of support is in determining how the laboring woman experiences and deals with her labor.
I’m not going to detail her birth because that’s her story. I’ll share my part – to move beyond feeling worried if I was doing enough, doing it the right way, or concerned about making a suggestion that wouldn’t be on target, and to have a complete focus on being present for her as fully as I could.
As the baby was born, she caught the baby and brought her up to her chest. At that moment, I couldn’t help but get teary eyed. That was when the fruit of all her intense effort was so tangible.
It was a beautiful, beautiful birth. (I wasn’t the only one who felt that – the head midwife afterwards thanked her for the privilege of being there.)
I loved that there was no rush to check if it was a boy or girl, and that she was the first one to look and to share that information.
It’s a girl! Yes, we have another granddaughter!! Re-balancing the heavily male dominated Werner clan. 🙂
There was some unexpected challenges after the birth and the baby spent the first five days in the NICU. All is now well, and they are finally home together.
M and baby A, 1 week old
I’ve been blogging here for over twelve years, and many of you have walked alongside my parenting journey through the years. There are challenges, there are twists and turns, there are hard times and fun times. As a parent, there’s so much work and investment, day in and day out.
And I’m telling you, it’s worth every single bit of effort. It just gets better and better. Really.
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?
Having a child with special needs who is now in the ‘system’ is giving me a crash course in how to negotiate tedious bureaucracy and I’m getting quite good at it!
Between Rafael and Yirmi’s medical stuff, educational stuff and foster care stuff (not to mention my other kids!), I have a lot of paperwork and appointments to stay on top of – and no matter how much I do, there’s always at least one more thing that needs to be done. I’m not complaining, just describing the reality.
It’s already time to prepare for next year academically and this week we got an important evaluation taken care of. Amazingly, we got our appointment only five weeks after beginning the intake process with the social worker at social services. (Don’t ask me why social services is the address for the education needs of kids with special needs, but they are.)
We were told to schedule three hours for the evaluation in Jerusalem, which consisted of three parts: meeting with a social worker, a psychologist and a doctor. Each meeting is 1/2 hour or less but we were told to expect a lot of waiting between appointments.
Though Yirmi was accepted to a regular first grade class, my preference is for him to remain an additional year in gan safa in order to learn more Hebrew before beginning first grade, so that he’ll be better positioned for success in grade school.
Yirmi, 6, school trip
However, his teacher has told me we can’t assume that he’ll be permitted to stay in gan safa for another year. This will be determined by the educational placement committee this spring, and the evaluation we just had done is an important resource for them – and that’s why I did it even though I’m opposed to testing and assessments of this sort. When you’re in the system, you have to work with it whether you like it or not.
We first met with the social worker. I am so sick and tired of people who don’t know how to establish emotional rapport with children and don’t understand the critical importance of rapport, being in these positions. I am sick and tired of my six year old being expected to comply with people he doesn’t know, to do things he doesn’t want to do, to prove himself while his feelings or needs are dismissed and seen as secondary. It is all so unsupportive of him.
The first meeting was an inefficient use of our time. Why couldn’t she fill out all the paperwork that was identical to the paperwork sent to her before I came into the room? It’s completely unfair to waste the patience of the kids, making them sit there while she asks the same questions that she already has the answers for on the paperwork in front of her…address, phone number, year we made aliyah, how many bedrooms, who shares a room with him, income level, education level, etc, etc.
While she was copying some of the information from one paper to another, I was trying to engage Yirmi, who was understandably bored and antsy after our hour and a half drive, followed by an almost half hour wait.
The social worker got annoyed and told me that he and I are speaking together more than she is talking to us so we’re going to have to leave her office. I told her that after two hours of not being engaged by anyone, it’s completely unreasonable for me to ignore him and expect him to sit quietly while I answer all of her questions.
She then asked him his name and he said, ‘Yirmi’. ‘Doesn’t he know his last name?’ she asked. ‘Yes, he does, but generally that’s not what people want to know,’ I responded. Then she asked his age, and went back to asking me more questions while he tried to leave the room three times before it was finally obvious to her that he was almost completely out of the ability to wait any longer.
So she starts again: what’s your name? He just looks at her, obviously wondering why she’s asking him when he told her already. No reply. ‘How old are you?’ No response.
He didn’t want to answer because he thought if she was repeating herself, it must be because there was something wrong with his initial answers. He started to look anxious and resistant – arms crossed over his chest, chin down, bottom lip out.
She asked more questions, and he wouldn’t even look at her. I asked him the questions since he wouldn’t answer her at all. He responded with one word answers and kept saying he wanted to leave.
She commented, “I see he only can use one word at a time.” ‘What???’ I said, surprised she was making the assumption she was. “I see he isn’t able to form sentences,” she stated.
This would have been funny since he conducts entire conversations, except that she’s writing a report about his academic abilities. How accurate do you suppose her assessment will be, based on interacting with him in a stressed state for less than ten minutes?
We then saw the psychologist, who was thankfully much more child friendly and did a bunch of game-like assessments. Yirmi is extremely perceptive and can tell when he’s doing well and when he isn’t. When he gets a sense that he’s failing in some way, he starts to close up (like with the social worker).
Mostly the assessments with her went well, and she kept her energy fairly even regardless of his response. There was one set of questions where he didn’t understand what he was being asked to do, and kept giving the wrong answer. She responded after each question in a very nice tone of voice, ‘Okay’.
After the third time, Yirmi turned to me and asked, ‘Why is she saying okay?” (Since after all the other times she said, ‘great’, he realized he was doing something wrong.)
We then saw the doctor, and Yirmi started to back away and shake his head, saying he didn’t want the doctor to touch his tummy. I told him that the doctor wouldn’t hurt him and asked the doctor if he would need to look at his stomach. The doctor said something obscure, and I asked him (more than once) if he could please tell Yirmi what he would be doing so he would know what to expect.
In the beginning of every single meeting, I had to ask the person their name and introduce Yirmi to them and introduce the person to Yirmi. If they had understood rapport, they could have easily said, “I’m so and so, what’s your name? I’m so glad you’re here with me today!! This is what we’re going to be doing today,” instead of jumping right into their assessments. It would have taken about 2 minutes maximum to connect with him, and it would have saved them time and energy in the end, as well as giving them results that are much more accurate.
Considering they’re seeing kids for assessments all day long, that’s a lot of stress that would be alleviated for the kids, their parents and the people doing the assessments.
Little kids have feelings. They can’t be expected to feel safe with strangers touching them, moving them around, asking pointed questions. Just take two minutes to look at them, talk to them, let them know what to expect so they can feel prepared and be more ready to engage.
(As I’m writing, I’m reminded of a situation I wrote about with an elderly woman in the hospital, and how taking the time to be kind is seen as inefficient. The confusion between efficiency and effectiveness is the same issue here.)
They were all nice people so my comment isn’t about them personally. The problem is that professionals aren’t being taught to interact with children in a way that will help them feel safe and by extension responsive.
We were very lucky to finish in two hours and twenty minutes, which the secretary told me was unusually fast. We’re scheduled to return in a month to participate in the meeting of all these professionals as they present us with their joint assessment. (Why does Yirmi need to be there to listen to people tell me what he can and can’t do? They didn’t answer that except to say he has to come. I’m thinking of getting him earplugs because even if it’s in Hebrew I don’t want him to hear himself being discussed. It’s completely inappropriate.)
This center happens to share a building with the Feuerstein Institute, and I decided to stop in there after we finished his evaluation to see if they had a book I wanted to purchase. The energy in the two places is very different – in one place I felt they were looking to find the deficiencies, and in the second place even in the very short time we were there, they looked at him with appreciation and smiles.
Yirmi, 6, Jan. 2019
(Being there again put the bug in my head to see about if it would be feasible at this point to get therapies there – I’ve called to find out what’s involved and am waiting to hear back to see if it’s feasible financially and logistically.)
At Feuerstein I happened to meet another T21 mom who I know mostly online who recognized me, and warmly greeted Yirmi. She got to see much more of the real Yirmi in the ten minutes we were speaking than any of the professionals doing the assessment!
It was nice that this center is located just a couple of blocks from one of my married daughters, and she invited us to have lunch with her and her husband at their home. Yirmi had never been to her home before and he was very happy to spend time with her and her husband. Throughout the assessment I would keep reminding him we would be going to their home when we finished, and it was nice to finally get there.
She’s also due very soon, so this was probably our last chance to spend time with her before she gives birth!
I was lying in bed, unable to sleep and I had to finally get up and write here.
I was thinking about an irony I’ve noticed : the more I have to say, the less I write about it. Why is that? What changed from when I shared so freely on so many topics? Why now, when I have just as much to share, and much more life experience and confidence, do I so often feel reticent and even avoidant?
There are a few factors – but a big one is, it doesn’t always feel like a friendly or safe space anymore.
Several years ago, I began noticing that when I wrote on certain topics, people who had never commented or even visited my blog before would speak up in very strong terms disagreeing with me. They were atypical of my blog readers, and I didn’t understand why they bothered reading my blog or commenting. If you don’t like it, just move along – there are plenty of other places to read things you agree with. If you’re here, you’re going to get my perspective.
I would later learn that what I was experiencing was happening all over the natural health blogosphere and was known as ‘astroturfing’. This is when people are paid to surf the internet looking for certain keywords and ‘seed’ the comment section of a blog with hostile comments in an attempt to discredit the person writing.
Then about three years ago, my kids started shidduchim. I always knew that day would come and wasn’t afraid of anyone reading anything I wrote. After all, I’ve been true to myself and figured anyone who read would know who I am and what I’m about – I’ve never tried to create an image or portray myself or my family differently than we are.
I had assumed that what I wrote would be read in context, but soon experienced how hurtful it could be when strangers would look through years worth of posts and pick out details out of context. It didn’t happen that often but it was enough for me to feel very wary.
Just being a blogger was enough to end one shidduch suggestion! The other side was very interested in my son, until they did research and learned that I have a blog. Don’t you know the Agudah came out against bloggers as anti-religion and mockers of all that is good and holy? When the shadchan told me they said no because ‘you’re a blogger‘, it was like she was saying a bad word.
Even little things could be seen as a big deal. I once mentioned to a shadchan (who has no internet access and has never read my blog ) that I had just been baking bagels with my kids for an activity and she did a double take – ‘Oh, wait, you eat whole wheat? So you’re, like really into health food?’ I heard the mental gears spinning in her head as she reevaluated our past conversation and reassigned me to a different ‘box’.
I thought I would share openly again once my oldest three were out of shidduchim, but that hasn’t happened. Because once you shut yourself down, it’s not so easy to open up again.
I’ve watched through the lens of social media as people have become more disrespectful, hostile, and even hateful towards those who don’t share their opinions. People seem more and more to be looking for echo chambers rather than to dialogue with others of different perspectives from a place of mutual respect.
It takes courage to share one’s thoughts honestly. I was unable to sleep as I asked myself, have I written less from a place of fear/ lack of courage(bad), or from a place of honoring my own changing needs (good)?
‘To thine own self be true’ – that always resonates for me. How does that play out day to day?
As with so many things, the answers are subtle. Writing should serve the writer just as much as the readers. My personal feeling is that I need to listen to what feels right for me at that moment. What is one day motivated by one thing can be motivated by something else entirely on a different day.
No answers to share tonight, just some of my swirling thoughts. 🙂
