Avivah Werner

Category: Parenting

  • 31 for 21 – Why is it so difficult to access services for my baby???

    Today is Day 22 of 31 for 21, a blogging effort to promote awareness about Trisomy 21, also known as Down syndrome.

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    After Yirmiyahu was born and I shared the news with people that he has Trisomy 21, I felt so encouraged to hear that there were significant resources in Israel to support his development.  Now that he’s three and a half months old, I’m feeling much less supported and encouraged.

    I’ve been to plenty of doctors for Yirmiyahu – I’m not going to enumerate them because I think I have in the past!  I’ve also taken him to the Child Development Center, where he’s supposed to get supplemental therapies.  Before the holidays he had one physical therapy appointment, and I have another scheduled for next week.   While I appreciate that, I kept feeling that there should be a lot more early intervention happening.

    I haven’t been passively waiting for outside help – I’ve been trying to put together a neurodevelopmental program for Yirmiyahu on my own.  I don’t mean to sound whiny, but I really don’t think I should be needing to reinvent the wheel and figure out everything myself- I’m not living in a third world country and Down sydrome is something there’s a lot of experience with.

    I spent weeks trying to reach the national support organization for parents of children with T21 – no luck.  They never answered or called back in response to my repeated messages.  I tried to reach the clinic in Jerusalem that specializes in Down syndrome – no luck.  Again, no one answered or returned my calls.  Finally last week I went into the local health clinic to find out about getting services for Yirmiyahu, and was told I need to speak to his pediatrician (who I’ve seen a number of times already and never suggested anything).  I made an appointment for the next morning.

    That night, I called someone in Jerusalem with an eleven year old son with T21 to find out what is normal – maybe my expectations were totally off?  She told me the norm is that from the time the baby is very little, he gets therapy at least three times a week – once speech therapy, once occupational therapy, once physical therapy.  I also learned that she was able to successfully breastfeed her baby exclusively thanks to the exercises the speech therapist gave her.  Nice.

    Now armed with the knowledge that others in different parts of the country in the same situation as me are getting significantly more services, I went to see the pediatrician.  She told me that the Child Development Center here is perfectly fine and if they don’t offer more services, it’s because it’s not necessary.  Then she demanded, “What kind of occupational therapy are they going to do on a baby so young?” and without giving me a chance to answer, told me that there’s no such thing as occupational therapy for a three month old.

    So I went to go see the doctor who is in charge of the Child Development Center.  She reminded me that I had already had an appointment in the beginning of September for physical therapy and that I had another one scheduled for the end of October.  Yes, but doesn’t once in seven weeks seem….well, pathetic?  Apparently not.

    She told me that she will meet with me in a month to discuss this because she doesn’t want me to feel deprived or to think that I’m not getting services I should be getting.  Personally, I think she should worry less about my feelings and more about making sure my baby gets the support he needs.  When I told her that in other parts of Israel parents of babies with T21 are getting multiple therapies a week, she told me that a baby should only have one person working with him and that’s the physical therapist.

    This was so frustrating.  Despite it being well-known how important it is to help babies with T21 very early on in their lives, somehow this isn’t happening here.  I felt like I was in the Twilight Zone when I was talking to both of these doctors.  My partial comfort is that I’m working with Yirmiyahu on a few developmental areas and I hope he’s not suffering for lack of support, but it would be nice to get some support from trained professionals.

    Later that day I was happy to get a call from the Feuerstein Institute in Jerusalem, which specializes in brain development and rehabilitation, and they’ve had a lot of success working with children with Down syndrome.  I had been trying to reach them for several days and left a couple of messages, but due to my experience with not having my calls returned, I wasn’t expecting to hear from them.  It was so validating to speak to someone there who told me this is absolutely a critical time to start working with him.  She told me the person who works with babies will call me and we can schedule an evaluation – this is private, however, and I don’t know how long their waiting list is for infants.  (I’ve heard that it can be months for adults.)  Hopefully we can get him seen soon.

    You know what the doctors seem to be most worried about?  His weight.  Although he’s gaining weight nicely now that he’s started supplemental bottles, he still remains under the average growth curve.  (I pointed out that on the T21 growth chart he’s in the fiftieth percentile but was told that’s not relevant.  Why is there a different growth chart for babies with Down syndrome if it’s not relevant??)  My Israeli friend laughed when I told her about this and told me this is what they tell most mothers in the country, that their babies need to gain weight.  I suppose that’s reassuring but what would be more reassuring is if I could actually get some meaningful assistance for my baby!

    Avivah

  • 31 for 21 – Benefits of using Haberman bottle

    Today is Day 21 of the 31 for 21 blogging effort to increase awareness about Trisomy 21.

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    (Edited to add: While the concept is great and it worked well, I can’t recommend it.  The silicon nipple lasts for just a month before cracking; I bought several bottles and used a number of the nipples included and this was my experience with every single one of them.  This is something that shouldn’t happen so fast and makes this bottle a frustrating and expensive option.  With our second baby with T21, I used the MAM bottle, which also encouraged a strong suck, helped the baby keep his tongue in his mouth,  just 40 shekels for the bottle (versus 160 shekels) and the nipple never cracked.) 

    Every time I go out with Yirmiyahu and pull out his bottle, I get curious looks and if the person is close enough to me, they ask me about it.  Here’s why:


    It looks a little bit different, doesn’t it?

    After spending weeks working to get Yirmiyahu to be able to exclusively nurse, after a couple of weeks I saw that he didn’t seem to be getting enough.  I still don’t know why this is – maybe I didn’t have enough milk, but I think it’s something else.  Unfortunately I don’t have any professional feedback on this so I’m just guessing.  Anyway, since my efforts to remedy this on my own weren’t working, I agreed to the suggestion that we give supplemental bottles.

    The bottles were great – I was able to see how much he was getting and that was reassuring, as was seeing the return of wet and dirty diapers.  But something more troubling also presented itself.  When I had taken him to the doctor as well as the physical therapist just three weeks before, they had both commented on how good his mouth closure was.  Since infants with Trisomy 21 have hypotonia, the lack of muscle tone can make it harder for them to keep their tongue in their mouth.  I credited Yirmiyahu’s good mouth closure to nursing.

    However, within two weeks of a regular bottle, his tongue began sticking out a lot more frequently.  This isn’t a surprise, since sucking on a bottle requires a baby to thrust his tongue forward, and nursing requires him to pull his tongue inward.  But surprise or not, it was disturbing to me – was this the price I had to pay to help him gain weight?  I was feeling stuck between a rock and a hard place, when a friend suggested the Haberman feeder.

    The Haberman feeder was created for babies with feeding difficulties, but I think it’s a good choice for all babies.  It’s the only bottle that a baby has to use his mouth in a similar way to breastfeeding.  There are a number of benefits to this, but the one that most interested me was that it would help Yirmiyahu build his oral motor strength, just like nursing.

    Now, getting him to drink from this wasn’t so easy.  While he could finish a five ounce bottle in twenty minutes or so, it took him four hours to drink the same amount the first time we tried this bottle.   This was problematic because we needed to get his weight up, and for a few transitional days I gave him feedings from regular bottles as well as from the Haberman to be sure he was getting an adequate amount to eat, while giving him a chance to learn how to eat from this.

    However, we got through that period and have been using just this bottle since then.  Just as quickly as we saw his tongue begin to stick out more, we’ve seen it go back to how it was before.  This would take a lot of speech therapy to overcome if we stuck to the regular bottle, so it’s a big savings in time and energy!

    Another benefit is that excess air being gulped in along with the milk is eliminated due to the bottle design.  Yesterday I happened to sit down at the park bench next to the school nurse and she asked me why we didn’t burp Yirmiyahu a few minutes after he started drinking his bottle.  I hadn’t consciously thought not to burp him, it’s just that he didn’t need it.

    Here’s a short clip of Mandy Haberman, the designer of this bottle, showing how it works:

    The disadvantages to this bottle that I’ve experienced are:

    – Cost – it’s not cheap!  We spent 160 shekels on this, which at the current exchange rate is over $40. Contrast that with bottles that are considered upgrades/higher quality and priced at 40 – 60 shekels.   (Updated to add: two nipples are included with the bottle.  Since the nipple lasts only for a month before cracking and becoming unusable, this dramatically adds to the cost of using this bottle.)

    – No lid – when you travel with this bottle, there’s no lid to prevent spilling.  I haven’t found much leakage to be a problem as long as there’s no milk in the top part of the bottle, since it required suction to get it out.  But when there is milk in the top reservoir, I just wrap a cloth around it in the diaper bag to prevent any leaking and that seems to work fine.

    Avivah

  • 31 for 21 – What is ‘people first language’?

    Today is Day 14 of 31 for 21, a blogging effort to promote awareness of Trisomy 21.

    When my husband was telling his parents the news that our new baby had Trisomy 21, he made some kind of comment like ‘he’s a Down syndrome baby’.  I really try not to interrupt his private conversations but this bothered me so much that I had to comment, and I loudly whispered to him, “He’s not a Down syndrome baby, he’s our baby with Down syndrome’”.

    Does that sound like I was reacting to silly semantics?  To me it didn’t feel like that.  I felt the terminology was presenting our baby as a problem and was impersonalizing who he was (obviously this wasn’t dh’s intention).  You don’t define a person by what is wrong with them.  You don’t call an infant with strep a ‘strep baby’ – because that’s not accurate.  You don’t call a toddler with leukemia a ‘cancer child’.  You don’t call an adult a ‘heart disease man’.  It’s really obvious when you use those examples how ridiculous it sounds.

    And yet when it comes to T21, it’s normal for people to say things like, “he’s a Down syndrome boy” or “she is a Downs”.  No, no, no.  Just tonight I was speaking to someone on the phone who kept telling me about different people she knew with links to Down syndrome and saying things like, “Her daughter was Downs” until I felt like I had to say something.  I know that people don’t mean to be offensive or hurtful, but there’s a much more appropriate and less demeaning way to refer to others.  There’s a huge difference between referring to somone with T21 as someone who has Down syndrome, or someone who IS Down syndrome.   A few days after my whispered comments to dh, I learned that it even has a name: people first language.

    People first language means that when you speak about a person, you first speak about them followed by a mention of their disability or ‘issue’ – who they are is their primary defining characteristic, and their disability is just one aspect of who they are.  It’s true that it’s a bit more wordy to say ‘a baby with Down syndrome’ instead of a ‘Downs baby’.  But our words shape perceptions and reflect our understandings.  Isn’t it worth a couple more syllables when we speak to focus on seeing people for who they are rather than what they have?

    Avivah

  • 31 for 21 – A restaurant owned by young man with T21

    Today is the tenth day of 31 for 21, a blogging effort to raise awareness about Trisomy 21.  Click here to check out other bloggers who are participating!

    We all have a picture of what children will Down sydrome look like.  Most of us think we know what we can expect of them socially, academically and professionally.  I always made a point to smile at and thank the young man with T21 who bagged my groceries at the supermarket and thought how nice it was that the store owners were so progressive about hiring people with disabilities.  In the last three months, my estimation of what individuals with T21 can accomplish has shot up.

    Tim Harris is a young man who was a high school homecoming king, a college graduate, and is now the owner and manager of his own restaurant – and he has T21.  Watch this beautiful 2.5 minute video or read here to learn a little bit more about this young man’s accomplishments.

    I loved watching this!  People like this help change our communal expectations regarding individuals with T21.  And for me, as the mother of a baby boy with T21, it gives me tremendous hope and encouragement.

    Avivah

  • 31 for 21 – No regrets

    Today is Day 7 of 31 for 21, a blogging effort to raise awareness for Trisomy 21.

    So many times when people have a situation in which something has gone wrong, knowing that they did something wrong that added to the problem exacerbates their pain.  I’ve read several accounts of women who had babies with Trisomy 21, and they all went through a period of blaming themselves for something.  We moms can always find something to blame ourselves for!  Whether it’s not eating well or taking prenatals during pregnancy, feeling guilty about their negativity or ambivalence when learning about T21 or crying and being upset after the baby was born, there are lots of things that moms later look back on with regret.

    I’ve thought a number of times about how grateful I am in this regard.  I have a tendency to have high expectations of myself, which makes it easy for me to feel like I’m not doing enough for my children.  So it’s especially amazing that regarding Yirmiyahu having T21 that I’m able to accept what I did throughout pregnancy as having been enough.

    I was thrilled when I became pregnant, and although there are definitely some discomforts that come along with pregnancy, there wasn’t even one minute that I wasn’t grateful for my pregnancy.  My husband often remarked about how consistently positive I was, even at the end when I was having a lot of sciatic pain.  I had conversations in my mind every single day with my baby, telling him how much I loved him and later on when I started having premonitions about the baby having T21, added in the message that we loved him as he was.  I had a pervasive sense of emotional well-being and consistently positive thoughts about life in general and towards our baby.

    On the Weston Price site there’s an article with a theory that older mothers have babies with T21 because of pregnancies that are close together, leading to mothers who are  nutritionally depleted.    My youngest child was over three when Yirmiyahu was born, so I had a solid block of time to build up my nutritional reserves before he was conceived and I don’t have guilt over this possibility.

    I’ve been eating according as much as possible according in line with a traditional foods approach for years, and this pregnancy I was especially careful about what I ate.  Except for a few chocolate bars, my diet was excellent.  I took cod liver oil and early in my pregnancy, ate liver regularly for the iron.  In addition to this, I took homeopathic cell salts.  My general position is that it’s better to eat good quality real foods and supplementation has always been on the back burner for me, so it was unusual for me – a first, actually – that in addition to the above I took prenatal vitamins during this pregnancy.

    My birth experience was traumatizing (for my husband, too) but one part of the unpleasantness that I’m grateful for was the extensive fetal monitoring at the hospital.  I haven’t had this kind of fetal monitoring since my second birth, and it’s not something that added positively to the experience, but the monitoring consistently showed everything progressing normally.  Yirmiyahu was born very suddenly at home (if you’re wondering how I labored in the hospital and then gave birth at home, you can read both parts of the birth story, here and here) and wasn’t breathing, and when I later looked back on this I didn’t have to wonder if this was a problem that could have been anticipated and avoided – it wasn’t and it couldn’t.

    When we were told the news that our baby had T21 a few hours after he was born, along with the list of other things that were happening medically, it took me a very short time to process.  There are a number of reasons for this- I’ve shared about a couple of aspects of that, and another big factor is that as a mother of a large family, I know that every child comes with their issues.  I know right after finding out is a really hard time for most people and I feel very lucky in this regard that I was able to be happy with our baby as he was from the very beginning.  He was loved totally and fully from conception through birth and beyond, and as a mother I feel a lot of gratitude about that.

    Avivah

  • 31 for 21 – Proof of cuteness 🙂

    Today is Day 4 of 31 for 21, a blogging effort to promote awareness of T21.  Click here for a list of lots of great blogs of those who are participating!

    After mentioning yesterday how cute Yirmiyahu is, I realized I owe my readers some pictures!

    Me and Yirmyahu today

    Today dd17 was with some friends who all were going crazy over him (as usual) and she took the following pictures.

    Yirmiyahu, 3 months old
    Who is that looking at me?!

    Yirmiyahu began smiling when he was ten weeks old, about three weeks ago.  This is the first time we managed to catch his smile on camera.  Dd thinks the angle is awkward and doesn’t show his true cuteness and she’s right, but I’m sharing it with you anyway.

    I love my big sister!

     

    She makes me crack up!

    Avivah

  • 31 for 21 – Seeing the symptoms instead of the person

    This month is National Down Syndrome Awareness month.  This year I’m joining in the 31 for 21 blogging effort to raise awareness about Trisomy 21.  Why 31 for 21?  There are 31 days in October, and in T21, the 21st chromosome is triplicated.  In the coming days I’ll be sharing about questions I’ve been asked about T21, as well as other topics not related to T21 at all.

    This morning I took dd16 and dd11 to a community event for mothers and daughters.  A couple of minutes after I walked in, a staff member at one of the schools approached me and peered into the stroller.  (Yes, I do sometimes use a stroller rather than the wrap!).  She looked at Yirmiyahu and with surprise in her voice said, “He’s so cute!”  She had cornered me about a month ago when I was at the school to inquire about if the news she had heard that we had had a baby with special needs was true.  At that time I got the impression that she thought this was something hush hush that I should be feeling ashamed or sad about, which isn’t even a tiny bit true.  Today she seemed surprised that he was cute because she knew he had T21 and that’s not what she was expecting.  (I know, this is my cue to insert a current photo here but I don’t have one so you’ll have to scroll back to other posts that have pictures.:))

    I said, “Of course he’s cute!”  I had picked him up and she looked at him close up and said, “He looks like a normal baby.”  I have an emotional trigger to the word ‘normal’ – does my baby having T21 mean he’s not normal?  I replied with a smile, “Yes, he is a normal baby but maybe a little cuter than usual.”  “But he doesn’t look like anything is wrong with him,” as she looked at me questioningly.  I could tell she was wondering if she was mixing me up with someone else, so I confirmed for her, “He has Down syndrome.”  “But he doesn’t look like it.  How can you tell?  There are five signs, right?  But I don’t see any signs of it.  Are you sure he has it?”

    I wasn’t enjoying this conversation from the very first comment and was trying to remain polite.  What does she think, that I’m making it up?  I told her there are more than fifty possible signs of Down syndrome (maybe more than 100) and which signs people with T21 have vary from person to person.  She wanted to know which signs Yirmiyahu had but I thought that was none of her business so instead I assured her that we had done genetic testing and we were absolutely positive that he has T21.

    I don’t tell most people that I see locally that Yirmiyahu has T21. Not because I’m embarrassed or because I want to keep it a secret – not at all.  I’m very comfortable speaking about it and Yirmiyahu is perfect just as he is.  But I know that most people have negative preconceptions about T21 (as I did before Yirmiyahu was born) and I want to give people a chance to appreciate him as a sweet baby without them looking for the ‘label’ when they first see him.  Once they have a chance to see him as a baby rather than as a syndrome, then at a later point I can share with them about his diagnosis and then there’s a place for more helpful dialogue.

    Today the woman who was looking at him was looking for signs of his diagnosis rather than seeing him as a baby and that bothered me.  I know I can’t control people’s reactions and I’m sure there will be many interesting interactions in the future when I’ll be asked about this issue.  But I so much wish for now, and even more for the future as Yirmiyahu gets older and it becomes more obvious that he has T21, that people will be able to see him for himself.

    Avivah

  • Our new crawling track – a developmental tool

    Here’s our newest baby apparatus – a crawling track!

    If you’re anything like me until about 2.5 months ago, you’ve never heard of a crawling track and can’t imagine why in the world anyone would want one!  I read about this when Yirmiyahu was two or three days old, and once I understood the benefits resolved that we would make one for him.

    The idea of a crawling track is to provide a safe and comfortable environment in which your baby is encouraged to move from birth (if you have one at that point).   Why not the floor?  The narrowness of the track allows the baby to move forward, and the sides give him something to push off against.  A blanket on the floor would get rumpled and in the way, a mat on the floor doesn’t have anything for the baby to push against to keep him going straight.  Also, the track can be lifted on one side at different angles depending on the age of the baby, according to what is needed to help him make his way down the track (higher for very young infants, lower as they get older).  Once a child knows how to crawl, they don’t use a crawling track anymore – this provides a place for them to have lots of early opportunity to move and when they can crawl on the floor they won’t need this.  The recommendation to use a crawling track comes from the work of Glenn Doman, who has studied the development of healthy and brain damaged children for over fifty years and shares practical suggestions for parents based on his experiences.

    What’s the point of encouraging them to move?  Very much in brief, there is a direct relationship between movement and learning.  Crawling on the belly and creeping on all fours is critical to integrating the primitive reflexes of the lower parts of the brain.  The lower parts of the brain  are organized in the first year of life through crawling on the belly and creeping on all fours.  The more organized movement there is, the better it is for the brain.  This is good for any baby, but for a baby with issues like T21 I think this is of even more value in enhancing their physical and cognitive development.

    Yirmiyahu below on the track for the first time – one end was slightly raised so that he would be at an incline that would assist in his movements. Edited to add: It’s recommended that a baby go down the track ten times a day – so far Yirmiyahu only goes down it a few times daily but we’re working up to the recommended amount of times.

    You can see below how he’s lifting his head and pushing one leg against the floor of the track to propel himself forward.

    The next picture was taken just a couple of minutes later – notice how he’s moved forward on the track.  It helps to have brothers to cheer him along the way!

    These can be purchased in the US for about $450 – not cheap!  I knew this was something we could make ourselves but it took a while to make it because I wanted to do it as frugally as possible, and that meant finding materials that I could recycle for this project. A couple of weeks ago, we found something that someone was giving away that looked like we could dissemble for the materials, and brought it home.  That was a great find, but the next day, ds10 found something even better, which is what we ended up using.  It was just the right width and length for the track and the sides, and was basically a board covered with a thin layer of foam and material (we took this apart so that it could be washed before using it).  The track is supposed to be six feet long, and the sides are between 6 – 8 inches high.  The foam wasn’t one inch thick, which is what was recommended, but it’s comfortable and firm so it works out just fine.

    Though it’s recommended to use vinyl or naugahyde for the top layer, I preferred the soft and velvety material that I used – it’s smooth enough that it doesn’t impede movement, but there aren’t issues of offgassing that vinyl would have.  Then again, it won’t be as easy to clean as vinyl but to me that’s a small price to pay for something that is better for the baby’s health, not to mention more cozy.  Dh cut each side piece and then affixed them to the bottom piece with brackets.  The ten brackets were our only financial outlay for this project – a total cost of twenty shekels ($5).  Once he finished that, he left the rest of the project for me. While it took time, it wasn’t difficult, and I was very pleased with how it turned out.

    We keep this in the living room and Yirmiyahu goes in as often as we can manage – people like to hold him a lot when he’s awake so this limits his track time.  Since babies move so much in their sleep, it’s recommended to put them in this rather than a crib to give them room to move, which we do for naps.  At night, he sleeps with me and his movement is limited to him squiggling himself as close to me as he can get.  Which I totally love.

    Avivah

  • Babywearing – makes it so much easier to be out and about!

    Today I was on the bus to Tzfat (Safed) and was thinking – as I do almost every single time I have a lengthy trip somewhere and have to spend hours away from home – how glad I am to be able to wear Yirmiyahu in a wrap.

     

    Me with Yirmiyahu in Tzfat – yes, it really is that beautiful!

    I wrote about babywearing with a stretchy wrap when my ds3 was little, and at the time, I found it hugely helpful in freeing up my hands and taking care of things around the house while keeping the baby happy.  As useful as it was then, it’s even more helpful  now!  When we moved to Israel, I got rid of all of our baby stuff in our ruthless downsizing, with the exception of three things – one of them was the stretchy wrap, and one was a mei tai.  I knew that if we had another baby, it would be expensive to aquire these again and that I’d really regret not having them.  I’ve so many times thought how glad I am that we brought these along, because with all of the traveling in the city as well as outside of the city, it’s made my life so much easier.  Now that we don’t have a car, the helpfulness of a wrap has skyrocketed!

    I started wearing Yirmiyahu when he was less than two weeks old, at our first post-hospital doctor visit.  Every time I needed to take a bus to another city for another appointment for him, I felt so grateful to have the stretchy wrap – the option would be taking a bulky stroller that I’d have to fold with one hand while holding him with the other, while simultaneously try to board the bus and pay without falling over!   Not a fun thought.  Like this, he’s securely held in place even when my hands are full or occupied, and I don’t have to drag extra baby paraphenalia around with me.

    I also find it useful for when I need to get around locally, like trips to the store or for my daily walk to pick up ds5 from kindergarten.  He stays cozy snuggled against me while I get my errands done.  Today I tried a new way of wearing him, which I think is an improvement for him.  Since babies with T21 have more flexible joints, you’re supposed to keep their legs together as much as possible.  When I would put him in the wrap facing towards me, I always arranged his legs so they would be together, but now I’m wearing him facing sideways (similar to the cradle hold) and it’s easier to be sure his legs stay together the entire time.  Both positions are comfortable for me since my back is well-supported.  (See picture above.)

    Not only is it practical, babywearing is helpful for a baby’s development in a number of ways.  Dr. Bill Sears says that babywearing stimulates the baby’s vestibular system, and that the stimulation “helps babies breathe and grow better, regulates their physiology, and improves motor development” (Sears and Sears 2001).  At the same time that babywearing offers the baby stimulation, it’s also calming for them.

    I think that because he’s in the wrap versus a stroller that Yirmiyahu gets noticed alot, because he’s at chest level for people walking by so they don’t have to look down and into a stroller to see him.  That means lots of smiles and comments about how cute he is, as well as comments about the wrap itself.  Today the bus driver asked me as I was paying, if the baby was comfortable. I’ve had people tell me he’s too hot, too cold, too squished, too young to be out, his head isn’t supported enough,his head should be covered because of the sun or air conditioning, his legs should be hanging out, his legs shouldn’t be hanging out, he’s not secure enough – but since they usually tell me how cute he is at the same time, I don’t mind too much!  I think of it as a nice thing about living in Israel, that strangers care enough to tell you how to take care of your child.

    I was fortunate to be given this wrap by an online friend (who is also a blog reader) when she finished using it with her son, and it’s gotten tons of use since then!  I’ve shared it with a friend in Michigan, who used it for months and then mailed it back to me when she finished with it.  Then I moved to Israel and I shared it with two different friends here.  And now I’m using it once again.  It’s gotten lots of mileage and I anticipate that it will get a lot more usage before I’m ready to move Yirmiyahu into the mei tai.

    I’ve been asked by lots of people if I use this in the house, and the answer is, rarely.  It’s really useful but when the kids are home, there’s always someone (usually more than one someone) who is waiting to hold Yirmiyahu.  He’s rarely put down unless he’s sleeping, though sometimes someone will put him in the baby seat and rock him.  More often, when one person is finished holding him, they pass him to the next person waiting.  Now that the kids started school, I’m hearing daily complaints from several of them that they hardly get to hold him anymore.  Problems, problems.  🙂

    Avivah

  • First therapy appointment for Yirmiyahu – not fun and not productive

    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