This morning I woke up feeling inadequate to deal with the needs of all of my children, and felt particularly guilty that I’m not doing enough for Yirmiyahu. I was originally told that he’d get an appointment at the child development center around the age of 4 – 6 months, and I thought that it would be okay to wait for that. I’ve bought some books and have doing some things at home with him to aid in his development, and thought I was on the ball. But at ten weeks old, I’m now feeling like I’m behind since I’ve been told recently by several parents of children with Trisomy 21 that I’m supposed to be getting him to therapy appointments by now. That’s not so easy here since I can’t make the appointments until they’ve processed all the initial paperwork we’ve submitted so I have to wait for them to contact me.
Well, G-d is very good to me and knows my limitations, because this morning as I was sitting in the doctor’s office for another child, the child development office called to tell the doctor that they had an opening for today and wanted me to have it, but weren’t able to reach me. She smilingly looked at me and told them, “They’re sitting right in my office this minute!” I was so happy to get the appointment with a physical therapist and get the process started for him.
Later that day when I went for my appointment, I was a bit disappointed about it all. No, not disappointed. Discouraged is more accurate. When I got there, they asked me questions about the baby and a number of questions I didn’t see as directly relevant to a physical evaluation, like how old he was when I found out he had Trisomy 21, where I was notified about it, how they told me. But they finally finished with that and I was happy we were going to get down to business of them evaluating him physically and giving me suggestions of exercises I could do with him at home.
That wasn’t what they had in mind! They were nice, but I can’t explain the tone that all of the questions/comments were made in – very kindly, not quite condescendingly and not quite patronizingly, but it didn’t make me feel warm and fuzzy at all. I felt like it was a psychological intake, and that somehow everything I said was a reflection of my poor parenting. For starters, my husband didn’t come – it didn’t even occur to us that he should. They wanted to know why (he has to work!) and said that he really should be there for every single visit. Then after asking about our family (Did you finish high school? Really, you finished high school?), children (where do they each go to school? How do you get them to school each day?), I was asked about if I give Yirmiyahu any vitamins. I told them yes, that I supplement with Nutrivene-D, a special formulation for people with Down sydrome, as well as probiotics. (What? Did the doctor tell you to do that? And you thought it was okay to give that to him on your own?)
Then they told me that I don’t support his head properly when I hold him. A bit later they asked me what position he sleeps in, and when I said that he sometimes is on his stomach, asked me what gave me the idea that I should do that. I explained I do this specifically to help him develop his muscle strength and because tummy time is known to be very important developmentally, and they told me that even though I thought I was helping, I’m endangering him and there’s no benefit to him anyway.
Then they weighed him – he’s hardly gained any weight. They told me that he needs supplementing with formula since the nursing is too tiring for him and taking too much effort. (I’ve been very concerned about if he’s been eating enough, so in this case I appreciated their feedback although I didn’t totally agree with their conclusions.)
They put him on the padded table to watch his movements for about fifteen minutes; they said that his body motions are at an eight week level, which I suppose is good since his gestational age is eight weeks (he was born at 38 weeks). They seemed to say that because there are movements that are ingrained in a young baby from before he’s born that then disappear, that what we were seeing might be from then and not reflective of his movement ability now. I wasn’t sure what the significance of this was.
When it was finally time to leave after an hour and a half, I put the baby in the wrap. And then I was told that was dangerous, that I was causing head extensions and I needed to put him in differently. By this point, he was screaming and needed to be fed, and I didn’t have much patience anymore for listening to someone tell me that every single thing I was doing was harming him. I had walked in with so much positivity and as I walked out, I felt like all the things that I had done specifically to aid in his development had been turned around as wrong. It wasn’t the best feeling that I’ve ever had.
But this was just the ‘getting to know you’ meeting, and hopefully next time we’ll actually move to more assessment and skill development. For now, I’m going to have to pat my own back for the efforts I’m making with Yirmiyahu, and will continue to stay open to their assistance and suggestions.
Avivah
Avivah,
Sounds (sadly) like a typical bureaucrat. NO one knows Yermiahu like you do. You are an amazing mother, inspiring all the readers of this blog, I’m sure. I’m patting you on the back from cyberspace, and hugs too ((((()))))))!
That sounds so frustrating and upsetting. I am sure you are doing an amazing job with Yirmiyahu! He is so lucky to have you as his mom! Adding another pat and hugs as well!
Oooh. I feel so angry on your behalf. You ARE doing everything right. These people have probably never met anyone who actually was more knowledgeable than themselves and didn’t know what to do to stay “on the pedastile (sp?) above you.
Keep up your own spirits, and keep having a positive attitude. But please don’t let them make you feel “wrong”. While it may be different in Israel, you are still a consumer, and this may not be the place for you and your child.
Hugs, love, and admiration from Baltimore,
Karen
So sorry that they are so unsupportive. The fact is that you are doing what you feel is in his best interest after doing research and considering the options. I assume they are used to people who listen to everything they say as if it was Toras Moshe m’Sinai, and that is what they were expecting from you too.
Hugs!
If hugs could go around the world, you’d be overwhelmed by now! I can’t think of another mother I know who has worked as hard as you at researching different areas as needed, tuning into your instincts and removing ego from the equation. Being a pioneer isn’t easy, but it sounds like this is one more time that you will be putting in effort and many will benefit. Brachot for a shana tova for you and the whole family.
count me in with the loads of others who are on your cheering squad! how dare they pick on our avivah! in all seriousness, though- you know (although we all need to be reminded from time to time) that sometimes petty functionaries need to weild what little power they have in order to feel more powerful than they actually are. so perhaps they sensed inately that you are indeed a powerful force who IS in tune with your child and his needs and this threw them off their pedestal enough to make them want to cut you down. whatever the case, this was clearly about them and their issues, and not about you at all. so please PLEASE do not be mekabel their baggage… your son- and the rest of your family- need you to be bringing your best self to the fore and you can’t let yourself get dragged into the emotional mud by whoever just because they work in an office or have a title. enough said. with love- as always- julie
Oh, oh. I was getting madder and madder as I read about how you were treated! Gevalt! Little Y. is so blessed to be in such a family.
Please add my hugs to the bunch. Don’t feel like you need to give power to those, just because they appear to be more educated in this than you. They are also human and can be just as fallible. And as someone else said, no one knows Yirmiyahu better than his mom! Keep listening to your inner higher voice, keep up your research and definitely get a second opinion if you can – from someone recommended and trustworthy. You are doing great!
Do not ever forget that you have raised 9 amazing children without this ridiculous scrutiny. I am sure you will find the right team!
Avivah, you are totally not alone with your experiences! AS long as we, as mothers, know we are doing the right steps with all the tools, knowledge (and time) we are given, HaShem will take care of pulling us through the rest of the beaurocracy, right? Thank you once again for making us ALL feel like we are alone and that our experiences are not isolated. There are many of us who have been through the same. Either way, a ditto completely what Julie said too! It is totally their issue and their baggage, and they have no idea what to do with mothers who are completely intuned to their childrens needs!
Thank you for making us all feel human!!
Oh my…..Sending a hug and the you-already-know-this reminder that you know your son better than any “expert”. Hang in there.
Um, trying to follow this….it’s ok to routinely wait till age 4 to 6 months for initial intake for DS babies BUT these folks are “experts” on DS? Yeah, right (insert snort of derision here). As someone with close family members who are parents of a DS kiddo, all I can say is Oh my. Do these people know who they are talking to/dealing with? I feel so sorry for them…..
A friend with a DS child told me that at about 2 weeks, she was feeling a bit overwhelmed with her new reality. She was surprised at herself, since she had experience with other children in her family who had (other) special needs. Her husband/chief cheerleader told her to be gentle with herself. Encouragingly, he told her: By 4 weeks, you will be an expert. By 12 weeks, you will be telling the “experts” what THEY are doing wrong and why, based on the latest research findings. And he was right, that’s exactly how it played.
Keep doing what you are doing. Re the weight gain, call me/email me privately, i have some ideas…..
Thank you all for your encouragement! It’s good that I have years of practice in doing what I believe is right for my children despite what the ‘professionals’ say, because it looks like this is something that is going to continue to come in handy. 🙂
Hi, I saw that you give your son probiotics. I wanted to know which brand and if you get it here in israel. I have a 2.5 week old newborn that has thrush and I heard I should give him probiotics. Thank you!
Hi, Suri, welcome and mazel tov on your new baby! I didn’t buy the probiotics that I use for Yirmiyahu in Israel; I had some that we brought with us, an 11 strain oxylate blend – http://oceansofjoy.wordpress.com/2011/07/28/high-quality-and-inexpensive-probiotics/. This is extremely high quality but you can easily find decent probiotics in your local health food store.
Avivah if it makes you feel any better the people in that office treated us much the same! Everything you said is SO familar. They repeatedly told us to get the child under control and then told us our disciple methods (time out and holding) where both to harsh and perhaps damaging. When we asked them later about how they would suggest discipling him they said time out!!! They fussed at us about the vitamins too. And how dare we put him on a special diet, even for food allergies without asking the Dr first! An allergy diet so restrictive might make him feel bad about him self. Better he sould be hyper and sick all the time. In the end they only observed him 5-6 minutes aside from the time we were talking and then after all that said they couldn’t help us he is really too old (age 4). They sat and talked about me in hebrew (they knew I couldn’t understand yet) to my husband and told him the best thing he could do for our child is get mental help for him Mother!! Why? because I refuse to give my child with THREE Heart defects, who has had 3 heart related surgeries, a medication that is known to cause heart attacks! They call a more then 50% chance of death reasonable odds! And asked would it hurt to just try him on the medication. When I left I felt like they thought I was a complete idiot incapable of raising any child. I hope and pray things go better for you.
Oy, oy, oy – that’s terrible! I really hope that you have more understanding people to work with in the future.
My second appointment was only with the physical therapist and was much better – after a short time she said something about my knowledge about Down syndrome that was different than most parents who are still very emotional and not yet at a place of acceptance at this point. When she showed me exercises, she was very surprised that we were already doing some of them with Yirmiyahu (I bought a book about gross motor skills for children with DS and was following that independently). And then she told me that his head control was excellent – and I told her it was because I’ve been putting on his stomach since birth to strengthen them, though two days before I was told that what I was doing was dangerous and ineffective.
I’m optimistic about working with this therapist; it will take time for her to get to know me, but I’m very serious about helping my baby and I think that’s obvious to her. I told her about the latest thing that I’m doing for him and she was skeptical but part of that might be that I don’t have the medical vocabulary in Hebrew yet to explain myself well with things like this. I’m hoping for you that whoever you work with will be able to support you and your child, and understand where you’re coming from rather than judge you and find you at fault for whatever you do.
I wanted to wish you and your family a Shana Tova, ksiva v’chasima tova.
I am learning so much and receiving much chizuk from reading your blog. Your writing and experiences have far reaching effects!
They should be a zchus for you.
Leora Meystelman