Today I took Yirmiyahu for his first physical therapy appointment in five or six weeks. He lost a lot of muscle tone when he was so sick – he was like a newborn or even less, totally unable to support his head at all for a while. I asked the doctors how long it would take for his muscle tone to improve, and they told me that they can’t predict when that would happen. I reminded myself that we worked on muscle tone before and we can do it again but honestly I was discouraged at the thought of starting from scratch again.
I’m happy to say that after about a month, he’s mostly back to himself with even a couple of areas that he’s progressed in! At today’s session the therapist wanted to assess where he’s at now. During our session she reminded me about something she told me about a couple of months ago. At that time, she described to me the special daycare (maon shikumi) for infants with disabilities, where they can get therapies of all types throughout the day. It’s a full day program from around 7:30 or 8 am until 3 (I think), and it’s very close to our home. Not only is it free, but we’ll be able to get transportation to and from the door of our home to the door of the daycare, also fully paid for. Obviously, it’s a no brainer that any caring parent would rush to put their child in this framework. Isn’t it?
A couple of days after Yirmiyahu was in the intensive care unit, the doctor who admitted him spoke to me and told me that his condition had been critical, and that there would have been no way to help him if we had gotten there even a few hours later. A nurse from that unit told me that his blood work was so bad that they were all frightened when they heard his results called in from the emergency room to their unit in advance of his transfer. To hear that his situation was so bad was very hard, really very emotional – it was then that I emotionally just turned off to handle the overload of what I was feeling. So when ten minutes later a social worker came in and introduced herself, I knew she had come to see how I was handling everything.
To my surprise, she began by mentioning Yirmiyahu’s T21 diagnosis, and then started talking about this specialized daycare program available. I just listened and nodded my head at appropriate intervals, but I guess my lack of response gave her the impression that I wasn’t going to put him in. She kept telling me that I have to make decisions based on what is best for him, not my feelings, and how much better it would be for him than being at home. She repeatedly told me to check it out before making any decisions. I had such a sense of unreality to have her discussing this with me with Yirmiyahu lying there hooked up to oxygen, a feeding tube and monitors of all sorts. It seemed really inappropriate that this was the topic that she felt was a priority to talk about right then.
Now that Yirmiyahu is nine months old, apparently it’s now a priority that he go into this daycare. Today when the topic came up again and I was asked about my plans, I told the therapist that I don’t think this is the best option for him right now. I don’t speak very openly with therapists and doctors because we have such different paradigms that it makes honest communication very challenging. When I’m speaking English I can reframe paradigms for others, but I don’t have the nuanced Hebrew to be able to effectively do this. And I don’t like to sound unintelligent about something that I’ve put so much thought into. I keep things that could sound controversial or argumentative (that means most of my thoughts about anything that aren’t in lock step agreement with them) to myself.
She listened to my response, then wanted to know why? I didn’t talk at all about the developmental benefits to a young child of being home with loving and supportive parents. Love and emotional security play a big part in a child’s development – even therapeutically, there are exercises that Yirmiyahu does because he loves the people doing them with him, and we do them when he’s rested and interested and stop before it’s too much. This is really different than therapy – he’s a very good natured baby and usually only cries when he’s tired or hungry, but at every therapy session he spends at least half of the time crying. He gets tired and wants to rest or be left alone but the clock says we need to be there longer so he has to keep having his body moved in different positions because it’s ‘good for him’.
Anyway, that’s what I didn’t talk about, because I know how different this is from the way they see things. The thinking here is the earlier you put your child in a framework outside of the home, the better – and for a child with ‘special’ needs, his therapeutic needs totally take precedence over anything else in his life. It’s almost like they become their diagnosis first and foremost, rather than being a child with a diagnosis. That’s a really big difference. And when you’re not thinking of a child’s holistic needs, you think differently about what is best for him.
What I bascially told her was: “At both of his evaluations, we were told that Yirmiyahu is excelling in every area of development. So whatever we’ve done with him seems to be working well for him. He gets plenty of stimulation at home; he’s not laying in a crib staring at the ceiling. It doesn’t seem to me that at a daycare they can give him better results than we’ve gotten.”
I often have a strong feeling that there’s an expected script and I’m not reading my part. My part is supposed to be to along with whatever I’m told is good for him.
I did agree to visit the daycare so that they can see that I’m a reasonable person. I don’t want to do this because I don’t need to subject myself to more people telling me how what they can offer is so much more than me, people who assume that a parent doesn’t do anything on their own and that the experts are always better. Doing things that other people want me to do that I don’t really see the value in is something that since moving here I’ve done much more often than I would have liked, but it seems to be part of working within the system.
Avivah
I agree with every single thing you’ve written, and I also tend to keep my thoughts to myself very often rather than explain my radically different opinion to people who wouldn’t understand.
However, I think it would be a good idea to visit the daycare place, for a few reasons.
First, to keep them from bugging you about it 🙂
Second, so you can see what facilities/equipment they have that you might want to recreate/acquire for Y at home (or find for him in a different location).
Third, in case there’s something else you can learn about caring for a child with T21.
Fourth, in case you ever doubt yourself and what you’re doing, you can remind yourself of the alternative option (for better or for worse!!)
🙂
I remember my initial horrified feeling when my sister told me her (then) baby with T21 was going start going to “school” (in Manchester, UK). Then she explained that it was for 1/2 hour twice a week and she (my sister) would be there too, and that it was essentially for therapy (beyond what was being provided at home.)
I don’t believe she would have considered a full-time daycare program at such a young age…
Good points about the potential gains from visiting there, Louise, I’m glad you brought them up!
You are always very good at listening to yourself, Avivah. Now is not the time to stop :). I def. agree with Louise about checking out the place to see what interesting things you might be able to find out about to use at home. I don’t suppose they would consider a greatly-abbreviated time for him to be there?
It’s worth asking if they would consider letting me bring him in for periodic therapy; it could be a big help if they would!
Avivah, you know already that I agree with everything you have said as well as with Louise 🙂 Our Yosef, ( aka as JoJo 🙂 that’s what he calls himself ) is now almost 4 1/2 and is absolutely thriving at home! He still gets some therapies at home and after 4 years we have a very close relationship with his therapists and for the most part we work as a team and they are thrilled with him and his progress. we even do pt at the playground, weather permitting. People are often surprised to hear he is “homeschooled” after interacting with him and often start with ” but he is so smart” of betterr yet , “but he speaks” as if you can only learn to be high function in an structured institution… I remember having some pressure when he turned 3 to put him in a program and I kept saying for now he is thriving at home, I will re-evaluate next year, but i know that know other environment is going to be as good and beneficial for him on all levels. I have a good friend who has her son in a part time program and I definitely saw some of the negatives that are not usually spoken of and really that re-enforced my view that there is no place like home – at least for now. It would be great if you can make use of some of their equipment or therapies, but if not, look for mommy & me style baby gyms and/or swimming classes for babies. JoJo’s sibs taught him to play catch and kick a ball, run on uneven surfaces, climb stairs, hop, jump, ,ride his tricycle, butter his own toast, paint, draw, build with lego and the list goes on. Whatever playthings, equipment, experiences you do not have at home, you can probably, improvise, find in playgrounds, libraries, the beach, baby/toddler programs etc; In the end I hope you make the decision that is best for you and your family. It is challenging to deal with professionals that do not know any other way and their vision tends to be very narrow even though their intentions are good.
I think that I will join the choir. The _experts_ have something to offer, as they truly are specialists in their areas. But _you_ are the expert in your son as a whole person.
Go to the daycare, but as others said, go looking for additional resources that you can integrate into your existing framework, not to give in to their framework.
Perhaps they would be willing to let you come in with your son once a week, to use tools that they have that you don’t (special play date!), or to teach you therapeutic models that you can modify to fit your life.
Your description of therapy that extends past Yirmiyahu’s comfort, ‘for his own good’, is exactly what you avoid when you provide the therapy. Perhaps by changing the schedule, perhaps by changing the therapy. For example, when I am working with Aryeh on his tummy, something it reaches the point of ‘too much’, but I think that it would be profitable to continue. Whereas a ‘professional’ might just continue, I take a break and spend time kissing Aryeh’s cheeks and neck. He starts laughing and getting back into things, and then we continue. No ‘professional’ could do this; they’d get hauled off for inappropriate touching.
When you provide the ‘therapy’ as a parent, you change it from ‘therapy’ to enrichment and play.
The professionals and experts can provide useful ‘dispassionate’ ‘objective’ information, but nothing beats a passionate and subjective parent!
-Jon
I agree with everything you said. Our son is in a therapeutic gan, and frankly the day there is too long for him. At his age, however, he did need to be in gan and learning fluent Hebrew, and there weren’t other good options.
You also should take into account that the therapies that you receive in the day care often take the place of any reimbursements you could be getting for private therapists should they be fully or partially covered.
As far as you hesitancy to just straight out tell them that you think they are wrong; this is Israel. Explicit conflict isn’t seen as uncouth the way it is in the US.
Thank you for all sharing your perspective!
Today someone told me that she thinks that I may be able to request that Yirmiyahu receive the therapies that he would get in the daycare outside of daycare hours, either they would come to our home or I would go there. She’s going to check it out and let me know in a couple of weeks when I see her next. That would be a really nice option to have!
AS, I think I’m too American to tell someone straight out that I think they’re wrong. I just can’t see how that would be beneficial and help me get better services.
Yes, the Israeli system definitely assumes that “the professionals” know better than the parents. It doesn’t get any better as the child ages either. The SPED system here is opening up next year (pilot) so that parents get the final say where their child learns, SPED or regular classroom with accommodations, but the school will still determine what accommodations the child will get! In our case that means choosing between the school we want him in to begin with, but with a slightly larger class, or leaving him where he was this year (smaller class, but not the school we want). If I could itemize the supports he should get, this would be a no-brainer, but apparently beyond choosing the framework I don’t know what’s best for my son.