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.
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.
(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!
Avivah
“” 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.””
This is SO important!! I go through this every time my pediatrician’s office hires new staff members. I’m not sure why they don’t train them in this. The first time I ran into this was with my son, then 2 years old. He didn’t want to go on the scale, the medical assistant began to pick him up and put him on the scale. I was horrified for him. He never met this person before and he immediately because anxious and nervous. I explained to the head nurse that it is totally inappropriate for them to try and force the kids into doing what they want, on their schedule (usually 5 seconds max). It completely makes kids uneasy. We teach them not to talk to strangers, I don’t know why this is such a difficult concept. Admittedly, some kids are bothered by it less than other kids. One of my kids absolutely dislikes new situations and people and its very difficult for her to interact with doctors and nurses that she never met before. Especially when they have no time or patience to establish any sort of rapport, as you mention.
Good for you for saying something to that nurse, R! Whether it should be like this or not, it falls on parents to educate others about appropriate boundaries with our children.
The schedule thing is hard because professionals have their time table and I think they feel they just don’t have time to be patient and wait until the child is ready. And sometimes it really might take them beyond their available time. But I don’t think they realize that kids are scared and sometimes end up traumatized by their abrupt actions.
Doctor visits are much, much harder for Yirmi than they ever were after one especially horrible visit to the ER to see an eye doctor who ‘had no time’. Finally after maybe two or three hours of not being able to get him to touch some kind of eye strip to his eye (after insisting he be held down by three adults to flush his eye with saline), another doctor came along and was kind and friendly – and did it in less than two minutes.
Her impatience cost her a lot more time and much more importantly to me, it cost us very heavily because Yirmi, who was always easy going and compliant about going to doctors, is now very anxious and fearful in a medical setting.
This is why we have not done the “DS Clinics” in the states. Evaluation is so limited in usefulness. Not that it helps you now but two thoughts. 1. Bringing Yirmi to meetings forces them to see a “real child”. 2. When we did do evaluations we brought an album and videos that showed Aryeh showing off skills. This way they could see them in their natural context. Sorry about this experience.
It’s completely limited in usefulness but this is THE eval that I was told everyone will want to see. I had a very productive meeting today with a number of staff members at his school and they all said it’s unfortunate because the evaluation itself isn’t high quality but this is what the system demands.
Another blog reader told me she prepared a video of her son to present to the placement committee, which I thought was brilliant and I am keeping that suggestion in my back pocket for Rafael.
As far as bringing him to meetings – in this case, the people who we’ll be meeting are the same people who did the evaluation. They aren’t going to be determining his placement or anything else, just formally telling us whatever they’re writing down on the forms. So there’s no gain in him being there.
Rapport: Sometimes it works the other way, too. One of my (then teenage) kids had a minor outpatient procedure under local anesthesia. On follow up, one of the staff members recognized my kid in the hallway and proceeded to address her: Hey (so and so, using kiddo’s legal first name) how are you? (very saccharine tone). Teenagers being what they are, kiddo says: I’m sorry, do I know you? You seem to know me…to which this person responds: YES! I was at your procedure!!! Teenagers being what they are, kiddo says: Um, no one introduced themselves to me, AND you were all wearing masks! Then kiddo puts their hand up, over the person’s face, and says, OH, now I recognize you, you have very pretty eyes! I didn’t know whether to laugh or cry, it was cringeworthy, BUT I can’t say that this person didn’t deserve the treatment they received at the hands of a truth telling teenager.
I’m trying to guess which child this was, Rena! 🙂
We were also disappointed when told we had to bring my son to the follow up mtg. But it turned out to be another chance to advocate for him. They put a puzzle in front of him while talking to us (I also brought my own games and books just in case). They were thrilled when he simply went to my bag, took a granola bar, and climbed back up to eat. So they are watching and evaluating but had no questions for him. I didn’t say anything negative about the inherent difficulties of these evaluations (most parents I believe are ok in getting a lower assessment for more svcs, and have very little of the stress we have in wanting the best result for gan safa/inclusion). Instead I tried to use every question to describe his capabilities. I do understand your concern about talking in front of him; my son was still quite young last year when we did it, and I didn’t yet have that concern. I think I would turn to my son and say “is it ok if I describe some of the things you like to do?” Wishing you lots of continued hatzlacha. You are doing a phenomenal job.
Thanks for sharing your experience, Jillian!
I had a meeting with five staff members at his school a couple of days later and they agreed that it’s not the most accurate of assessments but for better or worse, this is what everyone wants to see. They said the only thing that could happen is that he’ll get more services if he doesn’t assess at his actual ability, because he can’t be denied inclusion based on this assessment.
They also said that whether he is approved for gan safa or not, we will no longer need to deal with a placement committee for this year since our intended school direction will take us out of the special ed loop. I was very psyched to hear that, since I thought it would continue to be necessary for him to qualify for support services!
This is really not okay!
Every medical and paramedical worker and especially social workers learns patient rapport as a required part of their curriculum!
I have on several occasions reminded professionals about this.
This post is just wonderful in a number of ways. Firstly, it articulated for me some of the issues I have faced as a parent. B”H we have had mostly positive interactions with the “system” here. However, the ones that were not were really distressing and stressful. And I was just so frustrated that the professionals whose jobs are to work with kids don’t get the idea of building rapport. It has inspired me to try to do my very small part when I take my kids to the doctor et cetera. Right now I can’t orchestrate any sort of revolution. But I am hoping that my small actions will be the start of something greater. There was a nurse that really did a great job of trying to build rapport and connection with my child. I wrote down praise for the nurse because I was so happy and excited when I saw it.
Lastly for now, it is impressive how you wrote out this post without calling people names or putting individual people down. You even tried to write about some of the individuals’ good parts. There is no nastiness or meanness or anything like that. You respectfully and clearly explained some of the issues. For some it may seem trivial. However, seeing what counts for normal discourse today, it is a big deal. So kudos to you!