Avivah Werner

Category: Parenting

  • Evaluation at Feuerstein Institute

    There have been a lot of trips with Yirmiyahu to various doctors, but almost none of them have been at my initiative – they’ve been following up on things that the doctors have asked me to do.  Obviously it’s been important to get all of these medical tests done – checking his heart, intestines, blood, hearing, sight – but I want to help Yirmiyahu beyond basic health maintenence.  There are so many parts of him that need to be developed, just like every child, but supporting him in these ways will require more consciousness and education – and this isn’t in the realm of the medical world.

    That means I need to turn to those who specialize in those areas for assistance, and today Yirmiyahu and I headed to Jerusalem for his evaluation at the world famous Feuerstein Institute.   When I was first trying to connect with them, it took a while to speak to the person in charge of the evaluations for infants, but once I did she scheduled me for an appointment less than three weeks after we spoke.  She told me they have a long waiting list but they give top priority to the parents of infants with T21, since early intervention is especially critical for them.

    It was a cold and blustery day, with pouring rain and many hours of bus travel, a day that I held Yirmiyahu for twelve hours straight (with a short break when he was on the mat for part of the evaluation).  And it was worth every second.

    The Feuerstein approach is based on the concept of cognitive modifiability, which I think is similar to what neurodevelopmentalists  call neuroplasticity.  That means that the brain isn’t static but grows with use.  Professor Feuerstein has repeatedly shown that a person can be helped to develop his cognitive abilities in a very conscious and purposeful way.  Mediated learning is a big part of this approach, and the goal is to help a child to learn to think, not just to memorize facts.   Their goal for children with T21 is full integration beginning with school and eventually marriage, work and/or post high school studies.

    People come from all over the world to benefit from this approach.  In the waiting room I met a mother whose youngest child is now 13 and has T21.  She told me they live in Argentina but since he was two years old they’ve been coming to Israel for six weeks every year (right now it’s summer vacation in South America) for her son to have intensive daily therapy at the Institute.  And since he’s the youngest of twelve children, when they started coming she was bringing seven children with her for those six weeks!  She told me she searched all over the world and this was the best place she found.  Her son was just bar mitzva and did all the leining – she said that his progress thanks to the Institute has been amazing and worth all the efforts in coming.  I wish I could have spoken to her longer – she’s the first parent of a child with T21 that I’ve met in person since Yirmiyahu was born – but after a few minutes of chatting the evaluator arrived and our conversation ended.

    I had the chance to meet with Professor Feuerstein, a living legend at the age of 90+ who has been a leader in this field for over fifty years.   He did a short evaluation of Yirmiyahu (this was in addition to the main evaluation) and though it was a bit difficult for me to hear everything he said (since Yirmiyahu was complaining in my ear and the professor didn’t speak very loudly), he was very enthusiastic about Yirmiyahu’s development so far.  He clearly delights in working with children and was warm and encouraging.  He himself has a grandchild with T21 who is in his early 20s now.  He concluded our conversation by telling me to be sure to send him the invitation for Yirmiyahu’s wedding.  🙂

    I think Yirmiyahu is developing well, but I don’t really have anything to compare to.  So it was helpful to get feedback from those who have been working with the T21 population for so long.  At the end the evaluators commented it’s uncommon for them to see a baby with T21 like Yirmiyahu.  I knew they weren’t referring to his extreme cuteness 🙂  so  I asked what that meant.  They said that he’s amazing!  I asked what that meant, and they said he’s doing so well in every area – good mouth closure even with a stuffy nose, minimal signs of low muscle tone, attentive to people and sounds, good eye contact and tracking, a lot of verbal babbling  – this isn’t typical for the infants they see.  I’ve been worried that I haven’t been doing enough for him, as well as worrying that the breathing issue caused by his sensitivity to his formula has been compromising his development and this was really reassuring.

    I then asked what their thoughts on low/high functioning children were.  One evaluator told me that what matters isn’t the starting point but how much the parents invest into the development of their child, because that’s what determines the outcome.  I told her that while that may be true with older children, I can’t see that it applies in our situation because Yirmiyahu is only six months old and if he’s doing so well, maybe he was born advantaged.

    Both evaluators immediately disagreed and said that they noticed a number of things I’m doing that I may not be conscious of that are benefiting him in his development.  I had to ask what I’m doing, since I thought I was just holding him while I was speaking with them!  The examples they gave were all what I consider just being a responsive mother – establishing eye contact, talking to him, holding him securely, showing him things.  Then one said, “What you’ve done that is unusual is believe in his abilities and treat him accordingly.”  They also said that carrying him in a wrap is wonderful for his development since he gets to see so much of the world from a different vantage point than being on the floor.

    I put Yirmiyahu on the waiting list for weekly therapy services there (speech, OT, PT), but it will probably be months before there will be room for him.  I don’t know how I would work out a weekly trip with him to Jerusalem, but I’m thinking that if I can do it, it would be very beneficial to work with people who have experience with the specific needs of kids with T21.  They were taken aback when they learned that he’s not getting any kind of therapy where we live except for weekly physical therapy, and asked why.  I told them what I was told, that there’s no benefit to him getting speech therapy until he’s talking, no benefit to occupational therapy because he’s too young, and in any case his physical therapist can integrate elements of all the therapies into his weekly session.  They asked what I thought about that.  I told them that I don’t agree but I’m not going to fight for services because it won’t benefit Yirmiyahu to be seen by therapists who don’t think he needs help and don’t know what kind of help he needs.  I’m learning what I can on my own and trying to add it into the day as much as I can.

    As a mother I don’t look for support from the traditional medical representatives, which is a good thing since I’d be very disappointed if I was.  What they like is when you do what you’re told without asking any questions or without any thoughts of your own ( last week a doctor told me with disapproval: “You’re an intelligent woman but you’re independent”).  As a result, I’ve minimized talking about any initiatives I’ve taken with Yirmiyahu.  Even things that to me seem really minor and pretty close to mainstream seem to annoy them – a little example of this is when last week a doctor asked if I give him iron, and I said that it’s included in the vitamin supplement for people with T21 that he gets daily.   Then I was asked with annoyance, why are you giving that instead of the iron supplement that we give to all children?  Honestly, I really don’t think this should be a big deal.  Don’t think that I’m going to bring up craniosacral work, nutritional support, neurodevelopmental techniques…So you might be able to understand how nice it was to be validated rather than criticized for my efforts to help him!

    Not only were they encouraging about how he’s developing now, but also about his future.  They’ve worked with so many kids and seen what can be accomplished, so they really believe in kids with T21 and are matter of fact about their ability to accomplish things that most people believe to be unrealistic – namely, to live a normal and meaningful life.

    Avivah

  • Kids are home sick…and oh, how nice it’s been!

    We’ve had some kind of virus that’s knocking out almost everyone in our family, starting from about two weeks ago.  It’s been taking a long time to clear – maybe because one person gets better and then the next person gets it!

    One thing that it’s really brought home to me is how much daily stress is created by sending ds5 and ds3 to gan.  Being home with sick kids isn’t something parents usually consider a fun time, but this past week that the two of them have been home sick has been the nicest I can remember in a long time.  Dh agrees.  It’s been a relief to be released from living according to someone else’s schedule, the rush in the morning to get them out on time, the rush to pick them up and them coming home tired and out of sorts.

    At this point in my life I’m living with a significant amount of cognitive dissonance – that means that there are choices that I’m making that I’m consciously aware of not lining up with what I really want.  One of these is having my littles in preschool and kindergarten.  There were good reasons for these choices, but some of those reasons have shifted and become less compelling.

    Dh said he’d really like ds3 to be home with me, effective immediately.  I feel the same way but I really don’t want to tell his preschool teacher and the cheder administration that he’s not coming back.  For one thing, this is the same teacher ds5 had last year (she was teaching four year olds then), and I pulled him out at the end of February.  She’s a dedicated and excellent teacher who has done a great job – I have only positives to say – and I don’t want to insult her.  And I also don’t want to become known as the flaky mom who puts her kids in a framework and then pulls them out when she feels like it.  So my ego/social needs and my need for integrity in how I live my life are conflicting – I don’t want to be looked at in a certain way, I don’t want to make others uncomfortable.

    Then there’s what I do want: to help my children develop all parts of themselves, to have a strong degree of family connectedness, to parent according to my ideals rather than my fears.

    Actually, this is the same issue I faced when I began homeschooling over twelve years ago.  At that time, I had three children in school (2nd grade, kindergarten, preschool) who were all doing very well.  But I believed that they could be doing better out of the school framework.  However, I was really afraid of making a choice that would position me to be seen by others as ‘different’.  It was a huge decision that took a lot of courage, and one that I often looked back at as one I was glad I made, that made a huge difference in what our family became.  It’s interesting to be faced with something so similar at this stage, and yet the factors are all so different.  It’s these factors that cause me to question and doubt myself – a new culture, a new language, a religious identity that is determined to a large degree by your degree of communal conformity…it makes what seems like a familiar decision entirely new and different – and that brings with it fear of making the wrong choice and failing.

    This year I’ve been trying to see if it’s possible to raise school kids with the traits of homeschoolers.  I reasoned that my kids used to do academics in the morning and social stuff in the afternoon.  So perhaps I could consider their school hours their social time, and the afternoons when they’re home as our ‘homeschooling’ time.   So far it’s been pleasant, but it’s clear that homeschooling isn’t just about teaching in a more relaxed manner, or your kids pursuing their interests, or spending lots of relaxed time together.  There’s also the negatives of school that aren’t affecting them, which takes a lot of energy to moderate.  I’ve known this intellectually for many years, but now I’m experiencing it first hand.

    There’s always something to think about, but it’s been really nice this week to just enjoy how things are without needing to make any choices.

    Avivah

  • Online autism conference lectures available online

    I recently became aware of a number of fascinating online lectures that have been made available for free online.  These are from the 2012 AutismOne/Generation Rescue Conference.  Just look at the list of topics – they’re all so fascinating that I want to listen to them all!  Not that I have the time to do that, but I wish I did!

    This year they had a track for T21, since 10% of those with T21 have autism as well.  The T21 talks are listed at the bottom of the page of recordings, just scroll down if you’re interested.  I’ve only listened to three of the T21 lectures, but I appreciated them all.  I’ve spent a number of hours learning about the biochemistry of T21, and I was very impressed at Dr. Anju Usman‘s talk, in which a number of these points were very simply and succinctly explained.

    What I love about things like this is that there is so much known about what is going on with these diagnoses, and there are people who are taking action based on that information.  I just love this kind of information.  You won’t hear it from your doctor.  You won’t hear it from most people around you.  I’m learning to keep quiet with medical professionals because if I even mention anything slightly non-mainstream that I’m doing for Yirmiyahu (eg the pediatrician didn’t like that I give him a special vitamin supplement formulated for those with T21 that includes iron – she would prefer that I only give him the iron supplement that they recommend to all babies, the physical therapist didn’t like that we made an appointment at the Feuerstein Institute for an evaluation- and to me these hardly touch an alternative approach), I’m spoken to in a way that I find disempowering and unsupportive.

    But there is a lot – a whole lot – that we can do to help our children outside of the standard recommendations given.  There is so much information here that will be of value to any parent, regardless of if they have any kind of diagnosis or not – for example, I’d been thinking about what I can do to rebuild ds13’s digestive system, which has necessarily taken a hit as a result of the high dosage of antibiotics he’s been given to treat the hip infection.  Then I saw Biofilm, Bugs and Bowels: Rebalancing Your Child’s Gut, and watching this reinspired me to get back to making fermented vegetables on a regular basis, something I’ve been wanting to do but haven’t had enough motivation to push to the top of the list.  The curried sauerkraut is now in two jars on the counter.  🙂

    There are tracks about: nutrition, biomedical research and treatments, gastrointestinal, chiropractic, vaccines, education, therapies…there’s so much good information out there, and even if we learn just a tiny bit, that tiny bit when applied will help our families.

    Avivah

  • Experimenting with formula replacement options – again

    Finding something to feed Yirmiyahu has been an ongoing saga.  A while back I posted about needing to supplement nursing since he wasn’t gaining weight, and I made a homemade goat formula that I was very pleased with.  He was gaining weight on it, I was delighted that he was getting high quality real foods and he looked great.  Then we couldn’t get raw goat milk, so we used pasteurized goat milk instead.  Then the company that produced it had some kind of restructuring and the goat’s milk disappeared from the stores for a time.  My milk supply kept dropping and the supplemental bottles had become his mainstay.  So I had no choice but to buy formula.

    Somewhere in there, Yirmiyahu got sick.  I assumed it was a cold that would pass, but it didn’t – his breathing became noticeably raspy and stayed this way beyond the time a virus should have passed.  I felt this was due to a milk allergy, though the doctors told me it’s because he has Down syndrome.  I asked them why his breathing was normal for the entire time that he exclusively had mother’s milk, and they said it was just a coincidence.  Yep.  Three different pediatricians saw him and all recommended we use a nebulizer, which we tried but it wasn’t helpful.  When I told his physical therapist my concern, she said as long as he gains weight, it’s not such a big deal – but if you’ve ever struggled to breathe, you know that it’s far from a small deal.

    When the goat milk became available in the store again, I immediately went back to it.  His breathing remained noisy.  I tried the dairy formula, and I couldn’t tell if it was a coincidence that he seemed a little better or not.  I tried again a couple of weeks later, and after just one bottle of pasteurized goat milk formula, he was obviously more raspy.   I reluctantly back to the formula since I still didn’t have access to raw goat’s milk (the herd had been dried out, as was the herd of a friend who had been contacted on our behalf) – but his breathing still wasn’t good.

    I took him to a naturopath for cranio sacral work several weeks ago and she right away commented on his breathing.  I told her that I felt it was caused or at least affected by a dairy allergy, and after a few minutes of observing him, that was her assessment as well.  She watched him drinking his bottle and noticed that he began squirming and showing signs of discomfort, and she showed me small red bumps on his knees and behind his ears that were signs of what she called ‘asthma of the skin’ (this is a translation of the Hebrew, I don’t know what it would be called in English; an Israeli friend told me it’s not eczema but didn’t know what it is in English).  She suggested a non dairy formula and I told her I really didn’t want to try soy, but she felt it would be better than dairy.

    So off we went to buy the soy version.  You don’t know how hard it is for me to feed my baby formula, it’s just so much not the way I believe that babies should be fed.  (If you’re wondering what I mean, just look at the ingredient list – the top ingredient is some kind of sugar, skim milk powder for the dairy version and then lots of vitamins added in.)   And to give the most nutritionally vulnerable member of our family this stuff…..but his breathing really worried me.  Within three days of the soy formula, his bottom was bleeding, he had red rashy marks on the top of his head and the skin all over his face looked bumpy.  No more soy.

    At this point I became determined to build up my milk supply again so that he could have my milk.   I notified my family that this would be my top priority.  I spent an entire day in bed with Yirmiyahu, just nursing, pumping, eating and drinking lots of fenugreek tea (to increase milk production).  I was trying to pump about every 1.5 hours, since I learned that what I had been doing previously (every three or four hours) wasn’t enough.  I continued doing this for the next several days to the best of my ability, working around appointments and the things I needed to do.  And there was hardly any increase in my supply.  At this point my reality and my desire to nurse Yirmiyahu collided and I had to have a very honest talk with myself about what I was capable of.  Back to the dairy formula for lack of a better choice.

    Last week I had to take Yirmiyahu for blood work and his pediatrician told me his breathing was worrisome.  I agreed and told her that I planned to switch him to a different milk substitute as per the suggestion of our naturopath.  She became very annoyed and told me for these issues you don’t turn to a naturopath, you go to a doctor.  She then suggested we give Yirmiyahu two different medications daily via an inhaler- one medicine four times a day, one to be given twice a day (one is a steroid).  How long was he supposed to get this until it made a difference, I wanted to know?  She said they were to be given daily the entire winter.

    We bought the medications and dh gave it to Yirmiyahu for a couple of days while I was in the hospital with ds13.  When I got home, he told me that he was concerned at the reaction to this that Yirmiyahu seemed to be having.  My strong feeling was is that we need to remove the allergen first and then see if there was still a breathing issue.

    And that brings us to today – I began giving Yirmiyahu almond milk and will be observing his reaction for the next week.  I hope that this agrees with him; if I could get raw goat’s milk again I’d go back to it in a second.  Hopefully this is the point where he starts to get better!

    Avivah

  • Don’t give up on your dreams just because it makes others uncomfortable

    >>I’m glad you didnt (at least seem) to be upset by my comment. (She’s referring to the comment quoted in the beginning of the post, ‘Am I out of touch with the realities of raising a child with T21?‘)  (The reason I felt bad about what I wrote wasn’t because I took any of it back, but because what was the point? What’s the point in bursting your bubble and trying to get you to look at the negative instead of looking at the world with rose colored glasses.)……I guess that was exactly my issue with your last post- it seemed very much like you were romanticizing it.<<

    I’m going to post a response but a private email came in on this in the meantime, and it’s so similar to my perspective that I’d like to quote it here:

    >>As for romanticizing kids with special needs I would love to point out to your commenter that everyone else gets to romanticize / have rose colored glasses about their kids, why can’t we have them about ours. The medical community here is working as hard as possible to keep our “expectations” reasonable as are our friends and community.  But they get to have unreasonable expectations of their “typical kids”. !!!  Not every kid is going to be a Dr/Lawyer or even employable. There are plenty of 20 somethings who can’t find themselves…. I don’t think there is any chance that mothers like us have a chance of being too optimistic with all the gloom and doom out there.<<

    It’s so interesting to me that some people – I’ll assume they’re all well-meaning – feel the need to make sure I’m ‘realistic’.  I wonder why that is.  Do they really think I don’t have an awareness that there will be difficulties as my baby gets older?  Believe me, I’d know that even without being told! Do they think that I don’t have challenges right now?  I can assure you that I do.  Do they believe I’m harming myself or my family by choosing to find happiness in the life that I have right now?  I can’t see why that would bother them.

    Last year my children entered school after homeschooling their entire lives, and shared some of their observations with me.  One dd said that she learned that it’s not considered cool to have a good attitude – she was struck by the pervasive negativity in conversations that she heard taking place every day.  I told her then, it’s not just high school girls – it seems more socially acceptable to grumble and complain, and in some ways seems people prefer it that way.  It’s common and it’s predictable and that makes it comfortable for listeners.      

    I don’t talk about my expectations for Yirmiyahu.  Not here (other than my recent comment that we expect him to live an independent and productive life as an adult) and not in real life.  That’s because I’m not interested in hearing that it’s not possible.  When professionals (to date that includes doctors, a social worker, and a physical therapist) have told me about what to expect – even what they intended as encouragement was negative – I’ve kept quiet and nod my head to acknowledge that I hear them.  Then I continue believing that things can be better than their predictions and looking for encouragement from those who are further down the path that I hope to take.  And fortunately, those people do exist!

    If you’re going to share your dreams, it has to be with others who can support you, who can believe in what you believe in.  You have to guard your dreams from ‘dream stealers’ – people who for whatever reason will pull you down and tell you it’s for your own good.

    A couple of days ago I was finally able to schedule an appointment at the Feuerstein Institute in Jerusalem for an evaluation for Yirmiyahu.  It was so nice to hear someone – who has years of experience working with children with Down syndrome- talk about how bright they are, how capable, about all they can accomplish – and how critical it is to actively and consistently support them to enable them to overcome the challenges that come along with their extra chromosome.  I wasn’t told, ‘It’s nice that you’re so idealistic, but you really should understand all the limitations of a child with Downs.’  Not at all.  What I was told is that belief in our children is a major part of their success.

    I’m reminded of a story of a student asked to write his life goals as part of a school assignment.  He got very into it and wrote a detailed plan for the ranch he would own, etc – when it came back, the teacher had given him a failing grade.  She told him, ‘You’re the son of migrant workers- there’s no way you can ever accomplish this.  It’s totally unrealistic.  Rewrite your paper to have goals that are more in line with who you are, and then you’ll be able to get an A.”  The boy took back his paper and said, “You keep your A, and I’ll keep my dream.”  This story was shared years later by a wealthy man living on his own ranch, living out the details he had penned so many years before – the boy who refused to sell his dreams short.

    Those who think I’m naive, unrealistic, that I’ll change my tune when my son gets older – I know you mean well and I appreciate your concern.  Nonetheless, you can have your reality and I’ll keep my dreams.

    Avivah

  • Am I out of touch with the realities of raising a child with T21?

    I received the following comment to my recent post, ‘Down syndrome – our special gift‘:

    >>I hate to be a downer, but its all very easy and good to say that someone with down syndrome is a special gift when they’re a baby, but when they’re 40 or 50 and never grow up, are constantly a child that will need to be looked after, even when you’re old and will need someone to take care of you… how, then, can you say “I got a lamburgini”? I really think you’re not in touch with the realities of what it means to have a kid with downs syndrome. Yes, as a baby they smile a lot, but theres limits to how different they are from all other babies. Its when, as they grow up, they don’t really grow up much and always need more care than other kids, even well into adulthood… Well, I’m interested if you’ll still be singing the same tune then.

    Can you tell me- what are the special benefits of a 20 or 30 year old with down’s syndrome? Or a 10 or 15 year old?<<

    I’m sure there are others who think I’m deluded to feel grateful for the child we have, as he is, and so I’m glad this was asked so I can share a bit more of why I feel the way I do.

    To the person who wrote this comment and others who are wondering the same thing:  I wonder if you have children who have reached their late teenage years or beyond?  I’ve found that those with older children have an understanding that a child being born typical is no guarantee of later results.  It’s nice to think that your newborn baby will bring you nothing but joy and gladness, and sometimes it works out like that – and often it doesn’t.  From my  observations I’ve seen that most families I’ve met (and spoken to about what’s really going on in their lives) has experienced significant challenges with at least one child, and milder challenges with the others. By significant challenges  I’m referring to depression, molestation, addictions of all sort – in addition to the more common learning disabilities, rebellion or extreme unpleasantness.  Plenty of these children are extremely bright.  High intelligence is no guarantee of anything – right now on the news there’s the horrific story of the extremely intelligent young man who entered an elementary school and started killing little children and their teachers after killing his mother.

    Or what about parents of children who are born healthy in every way but at some point have serious health challenges?  Or whose child was born prematurely or suffered a birth related injury that causes brain damage, or at a later age suffered an injury that caused brain damage?

    My point is that your question makes a false assumption that all parents won’t be faced with very real and even frightening situations regarding their children.  I can’t emphasize this point enough because this reality puts the above question into perspective.   There will be challenges from your children – major challenges at some point – and there’s a false security that comes from pretending otherwise.   I hope I’m being clear about this before I proceed to responding to the specifics of what was asked.

    Yirmiyahu, five months
    Yirmiyahu, five months

    I don’t think that Yirmiyahu will ‘constantly be a child who will need to be looked after‘ when he’s 40 or 50.  Those with T21 who were raised in past generations didn’t have many of the benefits available to children born in this generation.  Never before have things looked so good.  My expectation is that Yirmiyahu will be able to live an independent and productive life as an adult.  Is this living in a dream world or in denial?  No, this is is a reasonable outcome based on all we know now about Trisomy 21 and what adults with T21 are currently accomplishing, what can be done to help our children reach their potential, and this is how we will raise Yirmiyahu.  As world famous brain specialist Dr. Reuven Feuerstein has been known to tell parents what they can look forward in the future for their adult children with T21 – ‘his/her wedding!’

    Children with T21 usually have cognitive delays.  Delays doesn’t mean that they never move forward – it means that they get there more slowly.  A baby with T21 will usually crawl later, walk later, talk later – but they get there.  We plan to mainstream Yirmiyahu as he gets older – a child with Down syndrome might enter a typical first grade classroom at the age of 7 instead of 6, and graduate high school at 20 instead of 18.  He may need academic modifications in order to be successful.  I can accept that.  As far as potentially lower IQs, I haven’t seen high IQs correlate with increased success or satisfaction in life, and people with a lower IQ can still have a meaningful life.

    >>Can you tell me- what are the special benefits of a 20 or 30 year old with down’s syndrome? Or a 10 or 15 year old?<<

    I’m not there yet but I believe we’ll find them – keep reading and I’ll keep you posted when Yirmiyahu is 20!  🙂

    >>I really think you’re not in touch with the realities of what it means to have a kid with downs syndrome.<<

    You’re entitled to your opinion.  I think you’re overly negative about what it means to raise a child with Down syndrome.  🙂   That’s okay, I’ve also seen some older children and adults with T21 that would have given me a similarly negative impression if that’s all I had to go on, and it’s because I’ve researched this so much since Yirmiyahu was born that I was able to put that in perspective and now have a better sense of what the landscape really looks like.  There are lots of reasons to be optimistic and encouraged about raising children with T21 in this century.

    If you have a child or relative with T21, what has been your experience?  I’d love to hear the perspectives of others.

    Avivah

  • Down syndrome – our special gift

    Today I was reading a lovely booklet that I picked up yesterday at the Child Development Center where Yirmiyahu has physical therapy (he’s now going once a week).  It’s intended for new parents of infants with Trisomy 21, with encouragement and inspiration based on Torah sources.

    As nice as it was, one aspect of it bothered me somewhat – how having a child with Down syndrome was repeatedly referred to as a nisayon (test/trial), and the encouragement offered was accepting this perception as the reality.  I understand that a lot of parents have a hard time with the news that their baby has T21, and they can find comfort in seeing their painful experience as having deeper meanings in the spiritual world, and that’s not a bad thing by any means.

    This reminded me of a conversation with dd18 a few days ago, when she shared with me about a book she was reading.  The gist of it was ‘why do bad things happen to good people?”, and an example of a bad thing was having a child with a disability.  Dd said that it bothers her to think of our baby being seen as a bad thing when to us he’s just pure sweetness – we think he’s the most wonderful baby in the world!  Our entire family is so in love with him and though he’s only five months old, he has been such a joy to us from the very beginning.

    After Yirmiyahu was born and we announced the news that he has Trisomy 21, some people told us what a great attitude we have, commenting on our advanced spiritual level and amazing faith.  They heard what we said but they didn’t understand what we were saying.  We weren’t on a high spiritual level and we don’t have deep levels of faith.  Our perception wasn’t, “Oh, this is so hard but let’s put a good face on it and tell ourselves that it must be for our good.’   We really felt like he was a special gift to our family.  The difference between feeling you’ve been given a gift or being given a challenge are very significant, and how you respond will correspondingly be different.

    If your friends all were gifted with Chevys and you received a Lamborghini, would you feel like you were missing out because you got something different from them?  Would you feel that you were saintly for accepting your car without complaining because you wanted to have what everyone else had?  No, you’d be thinking how lucky you were to get a Lamborghini and be so grateful to the one who wanted you to have something extra special!  What if you needed to pay more for premium gasoline and take your Lamborghini in for more frequent check-ups to keep it humming smoothly?  You’d understand that a more finely tuned machine requires more delicate handling and would willingly pay the price to maintain it well because that’s part of having an Italian luxury sports car!  Well, that’s how I felt about Yirmiyahu – we were the family to get a Lamborghini baby.   I truly believe we were given a baby filled with so much love -was not to test us, not to punish us, not to grow us through a challenge – but because G-d wanted us to have the joy of having a very special gift.

    We live in a world in which there is so much competition, and we may want to be better than others but not different in any other way.  So having a baby who looks different and is expected to have a delayed developmental curve seems like a bad thing.  But when we’re so busy looking at what we don’t have, we can neglect to notice what we do have – and children with Down syndrome have some unique gifts, gifts that bring tremendous light into the lives of those around them.

    I don’t want to seem like I’m living with my eyes shut, I’m in denial, or have plastered rose colored glasses on my face.  I know that there will be challenges.  There have been challenges.  There have been and will continue to be challenges with all of our children.  That’s parenthood.  But my primary feeling is that G-d gave us Yirmiyahu to make our lives richer and happier.  Saintly I’m not but grateful…absolutely.

    Avivah

  • Importance for infants of crawling on the stomach

    I’ve learned a lot since Yirmiyahu was born five months ago about infant development.

    When I first began researching, I saw repeated references to the importance of tummy time.  And I had no idea what was so important about tummy time!  Though my first nine children spent plenty of time on the floor and slept on their stomachs, I couldn’t have told you why it was important developmentally or imagined the long term benefits in a variety of areas.

    I shared about the crawling track that we built for Yirmiyahu when he was ten weeks old, and very briefly summarized why time on the stomach is very important to a baby’s development.  Crawling is a critically important stage that babies should go through that has short and long term benefits on their physical and cognitive development.  I planned to post with more details about how crawling benefits a baby, but then found the following two articles.  It took me some time to piece together the benefits from various references here and there, but these two articles put it together in one place.

    The importance of crawling on the stomach

    Baby crawling – how important it really is

    Don’t think these are relevant only to those who have babies with delays.   As a parent of a child who is expected to have a different developmental curve, I want to understand about what is healthy for development and why, but this is good information for typically developing infants as well!

    Avivah

  • Time to start applying to seminaries

    Have I ever mentioned that it’s never dull in our house?  It’s really not.  I keep waiting for a quiet period but it seems that lasts for a few days at the very most!

    Along with the high school applications/interviews/testing that has to be completed in the next week and a half for ds13, we have learned that the deadline for submitting applications for most seminaries is Chanukah.  You know, one thing I thought would be nice about having my kids in school was that I’d be clued in to things like this because everyone else would be preparing for the same thing at the same time.  However, it hasn’t played out like this since we’re looking into different options for ds13 and dd16 than their classmates so we’re having to figure it all out on our own.

    After recently requesting the applicationfrom the seminary that dd16 is most interested in, it arrived in the mail today.  (We skipped her up a grade this year and she’s now in her final year of high school, which is how we got to this point so quickly.  :))  We researched several choices that we thought would be suitable for her, and narrowed it down to one program in England.  Yes, I do think it’s very ironic that we’re living in a country with so many seminaries, and we’re looking into something out of the country.  From everything we’ve heard, it would be a really good fit for her, and we all appreciated the specifics we learned from the informational booklet included with the application.

    I told her last night that we’ll try to get the application completed by Friday and get it into the mail right away.  Once they process the application, they’ll notify us about the interview process with a representative in Israel.

    Fortunately, dd18’s seminary application isn’t due for a while (yes, she just had a birthday – for those who noticed the change in digits :)) so we have a bit of a breather on that!  She visited the specific school in Jerusalem that she’s interested in and is pretty sure that’s where she wants to be, and I’ve spoken to the head of the program briefly to ask about the specifics.  I think it will be great for her.

    Having both girls in seminary and ds13 possibly away at a dorming school for high school (though we’re hoping the new local option will work out for him) in addition to ds19 who is already living away from home is something that will definitely shift how things look in our home.  For now, though, we’re enjoying having almost everyone still living at home.

    Avivah

  • Loving a Child on the Fringe

    I thought this article was so beautiful that I just had to share it!

    Called Loving a Child on the Fringe, the single mother of a four year old daughter shares a bit of her journey into motherhood of a child with Trisomy 21 who wasn’t at all what she expected or wanted – but finds herself unexpectedly enjoying the journey that she never wanted to take.

    Avivah