After a number of years of writing about parenting, unofficially guiding parents and repeatedly being asked to give parenting classes, eight years ago I officially began teaching on this topic.
Before I began, though, I called a very special woman with tremendous experience and life wisdom, Rebbetzin Esther Tendler of Baltimore, to get her thoughts on teaching this topic. We chatted for a bit as I shared my perspective and background, and my approach to parenting.
Her biggest reservation? “How old are your children?”
When I told her my oldest was 17 (I had nine at the time, the youngest was two), she said, “Well, then that’s just about right.” She was concerned about people teaching who hadn’t yet had that many years of parenting experience. Theories are one thing, living them through different ages and stages is another! (***see below)
This week I was reminded of her comments when I heard Rabbi Yaakov Horowitz quote Dr. Abraham Twerski, who said: “Every house looks good when it’s new. It’s how it stands the test of time that determines how strong the house is.”
I really related to that. There are things that I did as a younger parent that I wouldn’t advocate now, even though they made sense and even seemed to get good results. Good results in the short term and in the long term don’t always look the same. And you really do shift over time to realize that things you thought were important in the early years just don’t matter very much.
When kids are younger, it’s easier to think you have all the answers once you can get them into bed or off to school without fighting. 🙂 The more experienced a parent I’ve become, the more nuanced I feel about many issues.
I recently came out of a trying eight month period with two teenagers simultaneously bouncing their negativity towards me back and forth between each other. It intensified things in a way that having just one child irritated with your existence doesn’t. 🙂
Teens can see things in a very black and white way, they can be very judgmental and focused on their needs to the exclusion of everyone else. None of that is bad. It’s just part of going through that stage. But let me tell you, it can be intense living with them while they grow their brain connections and move towards more emotional maturity.
It was my belief in and commitment to my principles of parenting that I held onto during this period that (usually) kept me from succumbing to some of the things I wanted to say and do. That, and my husband, who would periodically express his appreciation for how I was living my values even when feeling very challenged by some behaviors.
I questioned myself a few times, wondering if it was time to lower the boom and snap my fingers and say, this is the limit and you can.not.act.like.this.
It was a very conscious effort not to get into power struggles, not to define myself by their definition of me, to respect my boundaries at the same time respecting their need to express themselves, to look beyond the behavior and to remember to see the wonderful person behind that. And sometimes I didn’t rise to the occasion the way I would have wanted to.
The winds blew through, they shook me inside (which is not a bad thing, by the way -more about that in another post), the sun came out and our metaphorical house is still standing none the worse for the storm.
These teens (who were always wonderful to everyone else!) are once again pleasant people for me to spend time with. The positive interpretation that I held onto about who they really were has been borne out and I now feel what great people they are turning into rather than thinking it intellectually.
And so it goes as a parent…one more challenge, one more growth opportunity, one more situation that you go through that leaves you feeling stronger inside but still grateful when it’s over!
Avivah
*** I’m not in any way suggesting that those who are in younger stages of parenting don’t have something of value to offer! Personally, I think that each person should offer what they have to share, wherever he/she is on their personal path.
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.
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!
Overall he’s been doing great though there has been some disappointing and upsetting developmental backtracking . Remember that video of him being so excited to learn to stand? He was standing all the time, and looking like walking was on the near horizon.
And then – the holidays ended and he was back to daycare. He was continually sick and always seemed tired and weak. He completely stopped standing, let alone move forward with anything else. His physical therapist told me a couple of days ago that it’s like he’s gone backwards several months developmentally, which is exactly what I see.
That’s the hardest part about fostering, that sometimes I have to do something I don’t believe to be in his best interests because that’s what the system demands. I can see it’s daycare isn’t good for him, and yet I still have to do it because they think a child does better in an outside educational framework. I pushed hard for an extra year for him to be at home with me and got it, and have to remind myself to feel grateful we were able to delay daycare as long as we were.
An issue that’s been challenging for us is that Rafael has shown very little inclination to eat from the time we started offering him solids at 10 months. From that time, he never ate more than two teaspoons a day total and only of few very foods. Nothing sweet. Nothing mushy. Nothing too chunky. Cucumbers and rice cakes were the only constants he would agree to.
Though he was medically approved for a specialty formula from the time he was a small infant, we didn’t often give it to him because we used donated mother’s milk. Only when we ran out would we use the formula, and it was very apparent that he never got sick except when he had formula for more than two or three days.
Recently he went through a month long period of one cold after another, nothing serious in and of itself; the daycare staff told me it’s typical for a child in his first year of daycare. But he wasn’t eating much and he was even throwing up small amounts of formula – and my husband finally said, that’s it, we’re getting him off this formula.
I worried, how can we do that when he’s hardly eating anything? I mean, this child doesn’t eat. The formula was my security blanket, to know he was getting nourishment. My husband said, the formula is making him sick, we’ve got to give him something else.
I had thought of replacing his formula with chicken broth several months before, but his speech therapist said she didn’t want me to do that. That night, we went cold turkey on the formula.
He was a very unhappy child for about a day and a half, during which time he very reluctantly would drink some small amounts of chicken soup from his bottle. But within two days, he was feeling much, much better. He suddenly was healthy again.
Not only that, suddenly he wanted to eat. A lot. It was crazy and striking and amazing.
He began to intently watch everyone eating and literally overnight started to motion to have that food. And then he’d finish it, and have more. And then more of something else. After 14 months of trying and trying so many different foods and so many different ways to get him to eat, it was miraculous. I was afraid to believe it, afraid it was just a fluke.
But it wasn’t. And a couple of days after that, he stood up for the first time in six weeks.
So that’s all been very recent and very exciting!
The next thing that I’m working on is getting his sleep adjusted. Before he went to daycare, he would take a morning and afternoon nap, and sleep through the night. He was generally an extremely happy and good natured baby.
Then that all changed. He stopped sleeping through the night and the much shorter nap he had at daycare was much less than he was getting at home. He has been really grumpy and miserable when I pick him up, purely as a result of exhaustion. I estimated he was losing about 3 hours of sleep daily. That’s a LOT.
But by the time he gets home it’s mid afternoon and too late in the day for another nap. So that’s the challenge right now which I feel very optimistic about resolving.
I don’t have a camera but my oldest daughter came by for dinner tonight and I asked her to snap some shots to share with you in honor of his birthday.
Me and Rafael, 2 years old.Me and Rafael, 2 years old.
Rafael has a way of showing very clearly his feelings for someone. When he sees someone he loves, his face lights up and he reaches both hands out to him- my boys love being the one to pick him up from daycare because they are then the recipient of his beaming smile and outreached hands.
Last night a short video came across my Facebook feed of an amazing single mother of 12.
She had her first at 15 – her oldest is about 25, her youngest is 4 – she’s now 42. She’s in great shape, she’s so positive and she EXUDES energy. She has a super popular FB page, she speaks all over Israel inspiring others and she even has time to help others in unfortunate situations.
Her kids rave about how wonderful she is, how loved each one is, she’s so dedicated and so loving and so much fun. ‘After school today, we’ll go have a bonfire!’ Dance party in the living room with everyone! She loves to clean.
And she’s so nice and so honest and really inspiring.
Oh, my gosh, it was so discouraging.
Because after a few minutes of watching, a little voice inside asked, “Why can’t you be a fun mother? Why can’t you be more positive? Why can’t you be more organized? LIKE HER.”
Once that voice gets started, forget it. It just keeps going: ‘All my kids wouldn’t gush about me and say how I’m this incredible being who is just beyond amazing. And how there’s so much love that they never feel shortchanged by anyone else. No, my kids say things like, I’m not paying attention to them and the kitchen is a mess and why can’t I do more than I’m already doing in one area or another?
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There were several people who commented on my last post about how inspiring it was.
Then, a blog reader who I recently had the opportunity to meet in person emailed and commented regarding that same post, “Also I loved your post on schools. I see why I was so intimidated to meet you in person. On your blog you have all the answers. (or that is how I read it). Probably because you post stuff that you have processed.”
My partial response was:
“I find it so interesting that you read my blog as coming across as having all the answers. That’s so much not the place that I write from. I try to share my process and my doubts, as well as the resolution when there is one….
The nature of online reading is people tend to put others on pedestals and assume that everything is always organized, always happy, always confident, or whatever. But life isn’t always any one way, it’s shades of grays. “
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When I was younger and would do the ‘compare and despair’ thing, I would get lost in my feelings of inadequacy and sometimes wallow in that negativity. But with maturity and a lot of conscious work in this area, I’ve become able to reel myself in a lot faster.
Yes, I have triggers – like seeing this video late at night when I was really tired. That’s when I’m most susceptible to negative thinking. But I’m grateful I was able to pretty quickly reset from, “she does this = so should I”, to ‘that’s great if she’s always happy and organized and fun. It doesn’t make me less in any way.’ Only I can make myself less.
I have to note that she never said she’s always happy and organized and fun. Yes, that’s what they showed in this ten minute clip, but it was me who went ahead and kept building assumption on top of assumption! Actually, I’m pretty positive she’s be the first to laugh and say my presumptions aren’t true at all.
Can you relate to this at all? Have you ever read or watched something, and then imagined that person was always as wonderful as they came across in the article or video or blog post? Even though you KNOW that people are human??
So what’s the answer?
For me to say, ‘That’s her and it has nothing to do with me,’ is just the first step to slowing down the negative thinking. I also have to remind myself of my own accomplishments.
Not to compare, but to remember that I’m doing fine, working with my own strengths and challenges and limitations.
This past week, ds12 started school. He started at the beginning of Chanuka and had the chance to get started when the days were shorter than usual and the class smaller than usual. He’s really enjoyed it so far, and I trust that he’ll continue to enjoy it after Chanuka vacation when the class routine gets back to normal.
I had a wonderfully productive conversation with the principal of the school that ds12 is attending, who agreed to accept ds6 for the coming year. They’ve never had a student with Trisomy 21 before, but he said, “The question isn’t if we’ll accept him, but how to make it work best for him.”
Such an amazing attitude and I’m so grateful that it was so easy. I was expecting it to be hard, to spend weeks researching different options and approaching different principals of mainstream educational institutions and trying to convince them to take Yirmi. I was concerned that I wouldn’t be able to place him in a school that religiously was similar to where I would send his brothers. This quick and heartfelt acceptance was Hashem’s loving kindness to me.
I let the principal know that I don’t consider school a babysitting service, I don’t want Yirmi to be mainstreamed just for social purposes but that he’s bright and we know he will learn – with modifications and support when necessary – and our hope/intention is to keep him in the same school through eighth grade.
I mentioned this to a friend who asked if I thought this was realistic – on the part of the school and for Yirmi himself. Yes, I do. As with any child, I expect there will need to be adjustments and re-adjustments made over time. As with any child, there are likely to be frustrations and disappointments.
I also know he’s capable and believe he will become more capable only by being challenged with new opportunities and being in a framework where there are expectations of him to rise up to. If I don’t believe in him, who will?
Sometimes I worry that I’m creating a situation for Yirmi where he won’t fit in anywhere – too advanced for peers in the special ed world, but still struggling to measure up in the neurotypical world. As with other choices I’ve made that weren’t the typical path, I sometimes wish I could see how it would turn out, to have a prototype child who goes down each path, so I could know now what my choice should be.
But none of us get that luxury. We have to listen to our intuition and make the choices that feel best for us based on the factors in front of us. As comfortable as it would be to take the path that is recommended by the ‘experts’, that path hasn’t been shown to lead to the kind of life I want Yirmi to have. All those who have raised their kids with results that I’ve admired, have done it in spite of the system – usually with great resistance from the system – and with great personal involvement.
So, I periodically have to remind myself, stop being so worried about taking the path that makes sense to me!
Back to that dilemma of mine about Yirmi not having a place to fit in. When I read the book Taking Tamar, written by a single mother who about thirty years ago adopted a child in Israel with Down syndrome, she expressed the same concerns. Her daughter was considered unusual in her accomplishments. Unfortunately, the author died a short time before I read the book; I would have loved to have spoken to her about this.
I brought up this concern to several parents who have children with Down syndrome over the last couple of weeks, who all agreed it’s a realistic concern. Then I circle back in my own mind and ask, what’s the choice?
To know how much he’s capable of, but to deny him opportunities to develop because it will push him beyond his comfort zone, to choose to push him on a track that would limit him because it could potentially be socially more comfortable? Can I consciously choose to let the bar settle wherever it settles, knowing it will decrease his functioning in every area of his life?
And what about my fear that at a certain point people won’t want to be his friend and will spend time with him as a charity case? That fear needs to be challenged. Isn’t it possible that people will like him for who he is, that he doesn’t have to be more or less than who he is to be appreciated and valued in the mainstream world?
Right now, he’s in a mainstream but personalized academic framework. He’s thriving, the other kids love him, the staff loves him, and he loves going to school. I’m really, really happy with where he’s at.
Sometimes I think it’s good to look ahead and plan for the future, and sometimes I think I’m borrowing trouble by worrying about the future when all I can do is live in the moment. Right now he’s doing great. Right now, it’s clear that being in a class with neurotypical peers would be most beneficial for him.
I don’t know what will happen down the road. I don’t know how we’ll deal with the challenges that come along and I can’t predict what those challenges will be. We’ll just have to make the choices that we feel are most supportive of him at that time.
Early this week I got a ride from Jerusalem with someone who runs an organization to help children with language based learning disabilities. She had attended the same meeting I did, where we listened to a lawyer describe the recent changes to the inclusion laws and how that will affect children with different needs.
After our official meeting last year with officials at the Ministry of Education, we received a one year authorization to homeschool. Last week three representatives came to our home to speak to me and the kids.
Overall it was okay, but one thing that I was bothered by was a comment to one son. One representative asked him if he reads for fun, and he said not so much. She told him, “You need to work hard.”
I told the Ministry representative, he does work hard. And she said, “Yes, but I mean with reading.” I could have smacked her for saying that to him. She has no concept how hard this child has worked and continues to work every single day.
He’s up doing his academic work every morning well before she ever gets into the office! After tremendous consistent effort (on his part and my husband’s part) he’s reading in Hebrew and English, more and more fluidly all the time. He’s felt so positively about his accomplishment, and been so excited and motivated about all the things he can learn now that he can read independently! And for someone to just throw judgment and criticism on him just casually like that was really upsetting.
It was interesting to hear how kids with reading challenges are serviced in school from someone who works with this all the time. The dyslexia expert told me that although dyslexia is extremely common (1 in 5 students), these learners are extremely under-served. (Since my son was never diagnosed, I can’t say he has dyslexia, but that’s the assumption I operated under when choosing resources to support him.)
Firstly, the kids in school with language difficulties get hardly any extra support. (All of this is me sharing what she said, not my opinion.) I just learned at this meeting that the most they can get from the government is 2 hours a week, if they can prove they need it. If they do get the additional support, it often does more harm than good, as extra tutoring is provided by those who don’t know how to teach to a child with dyslexia.
Despite the extra time, the child still doesn’t learn and feels even worse about himself, because it confirms that there’s something really wrong with him since even with this extra tutoring he’s not successful. Very often these kids don’t learn to read.
As a result, these kids very often fall between the cracks, despite usually being very bright. They tend to have low self esteem and feel like failures. That’s the typical trajectory.
To me what has been an especially significant accomplishment has not just been watching my son overcome his challenge with reading. That’s been major. But, much, much more significantly to me, he’s had a healthy and positive self image of himself as a bright and capable person throughout it all.
And if you think it’s been easy even as a homeschooler to not be reading until a later age, it’s not. He could see that other kids could read much earlier and with much less effort than him. And the natural conclusion is to feel, ‘something must be wrong with me’.
We’d talk about everyone having his own timeline to learn things, and how some things are easy for one person and hard for another. Everyone has things that come easily for them and things that are hard for them. (He was able to see examples of that from his own life – there are many things that come easily for him.)
My son being a happy and curious learner isn’t something that people would question as being unusual. But for someone facing his challenges, it is.
Sometimes as a parent, you don’t get the feedback you’d like from the outside, and you have to recognize your own successes and pat yourself on the back for the things no one else knows you did.
There are plenty of days that I think I should do more or be more in some area or the other for my kids. So I really appreciated that night in the car, listening to an overview of what the typical experience is for kids in the school system.
Someone asked my husband what I do with all of my free time now that the youngest two kids aren’t home with me all day. It’s down to just three of our boys homeschooling.
Guess what? I’m still plenty busy. But I definitely have more breathing room, which I’m super grateful for.
I’ve been having regular meetings with teachers and therapists for both Yirmi (6) and Rafael (almost 2). Though it seems the school year has hardly begun, I need to start preparing for Yirmi’s placement for next year. The first step is to get a certain kind of evaluation done, which has to be organized through the Dept. of Social Services. Most kids have this done at an earlier age but since he’s never been in the system until now, we’ve never had him tested.
You think it’s easy to reach a social worker at social services? No, they’re backed up and phones aren’t answered, messages aren’t returned. I was very lucky because after two weeks of trying to get through, someone spoke to the social worker directly about me and got permission to give me her personal phone number.
Once I had that, it took just a few seconds to get through! I had to get together various paperwork and reports for appointment, which was a pleasure – she even told me to bring flyers for my Leadership Parenting workshops so she can give them out to her clients!
While I was sitting with her, my phone rang. The Ministry of Education wanted to arrange a home visit for the next day regarding the kids who are homeschooling. Sure, why not? I have nothing to do with my days but have appointments. And so three representatives spent an hour at my home, asking all about how we homeschool and speaking to our three boys currently homeschooling.
Then the next day I had an appointment with Rafael’s speech therapist, who has asked me to have regular daily sessions in Hebrew with him working on language, and another daily session in English also working on play skills.
Then the day after that I had yet another hearing test for Yirmi. His hearing tests have been inconclusive – they show some kind of hearing loss but we can’t tell if it’s due to fluids or something permanent. That test had to be done in two parts because his patience for participating ran out. That test has confirmed significant hearing loss and now we need to see the ENT again, and from there hopefully we can start the process to get him hearing aids.
Then today I got a call from Rafael’s speech therapist that she just saw his hearing test that I sent her, and though I was told it was fine by the audiologist, she says he is showing some degree of hearing loss as well. Now I need to move forward on more testing for him.
Tomorrow I have blood work scheduled for both of them to have ready for the pediatric endocrinologist next week to check thyroid function. And the next day a school Chanuka party for Yirmi to attend (all parents are invited).
Then there was the meeting in Jerusalem that I attended to learn about the changes to the inclusion law in Israel and how that will affect Yirmi’s school placement. Basically, discrimination has now been legalized. It’s very clear that inclusion in this country is only an option for the children whose parents have a willingness to fight for their child (every parent there who I spoke to, hearing that he will be going into first grade said something along the lines of ‘Get your boxing gloves on!”), combined with ample financial resources and/or the luxury of a parent who isn’t working full-time to facilitate his inclusion.
Very sad that despite it being well known that inclusion benefits not only the child but the other children in a positive way, a country as advanced as Israel is moving towards the Dark Ages.
I’ve spoken to one school about Yirmi and they said they might consider it for the year after next but not the coming school year. The problem is they hear ‘Down syndrome’ and they’re so concerned his needs will be too much for them that they don’t want to meet him to see who he actually is and what he’s capable of (much, much more capable and much less extra effort on their part than they’re thinking). I’m going to need to have a follow up discussion with that principal.
It’s never boring and I haven’t yet found myself with an abundance of extra time to sit around in a quiet house and nothing to do but meditate. 🙂
On Friday morning, I had a long and satisfying talk with a good friend who I get to speak with far too rarely.
We’re in a similar stage of life – she also has three married children – and she shared how hard it is for her to see her married children making choices that are different from those she would make. These weren’t superficial choices, but things that were very close to her heart and her values. She stated very honestly that it makes her feel like she failed as a parent.
That night, we had all of our three of our married couples over. It was especially nice since it was my birthday weekend. True to our family tradition, each person shared something they appreciated about me.
All three in-law children mentioned that they appreciate that I don’t impose my opinions on them and give them space as a couple. There’s a famous saying: “To be a good mother-in-law, keep your mouth shut and your purse open.” While I’d replace the second part with ‘give without strings attached’, there’s definitely truth to this saying.
Establish healthy boundaries over the years. Learning to have healthy boundaries isn’t something that begins the day your child get married. As my children grow and mature, bit by bit I give them more independence and less active direction. It’s a gradual process. So it’s not as if I suddenly had to cut the ties and clamp my mouth shut after the wedding ceremony!
Remember how you felt when you were criticized. I’ve had the experience of being criticized for choices I’ve made as a wife/parent. While I now have no doubt it was well-intended, it was very hard for me to hear. It certainly didn’t enhance my positive feelings towards the person expressing his or her dissatisfaction with me. However, I’m glad I had that experience because it gave me a perspective that is now helpful to me.
Recognize your child is an adult. I’m very blessed in that we really hit the jackpot with wonderful people marrying into our family. I have tremendous respect for each of my married children and their spouses. Every single one of them are mature and responsible adults and I trust them to make good decisions.
Good choices aren’t about what you would do. Good decisions aren’t those that are the same as what I would make, but those that are right for them.
My daughter-in-law asked me about a birthing option when she was expecting and knowing my natural-oriented approach said, “I know you think I should xyz.” I told her honestly, “No, I don’t think that. You have to do what’s right for you and no one else can know what that is. The ‘right’ choice is the one that is right for you.”
I shared this with someone who then objected, but don’t you have an objective position on one option being better than the other? Yes, I do, when it’s a theoretical discussion. When it comes to making a personal choice, it’s up to each person to do his research and then make his decision. And my role is to honor that.
(There is a limit to honoring the differences. When we discussed this at the table, I said that while I wouldn’t want to interfere with their parenting, I would definitely speak up if I saw something really concerned me. The question then would be how and when to share those concerns.)
Detach your sense of worth from your child’s choices – It’s important to not derive your sense of success as a parent from the choices your children make – ie, they do what I do, so I did a good job; they make different choices so I failed. This is where developing an independent sense of self-worth is critical – I can’t be dependent for how I feel about myself today based on what my children do or don’t do.
(Or even if my children like me or not. That’s the subject for another post!)
Don’t volunteer your opinion. If someone wants my opinion, they can ask me. But the older I get, the less quick I am to offer my opinion even when asked. I feel very, very strongly that what I do is right for me, based on my needs, my assessment of the situation, my goals. And therefore when asked I tend to stress that this is what Ido.
When it comes to older children (not just those who are married), the less you give your opinion, the better. Believe me, they already know what your position is on just about everything by then without you saying it again!
