Avivah Werner

Category: Parenting

  • Sharing the wedding of a dear friend’s daughter

    I had a wonderful time at the wedding of my close friend’s daughter in Jerusalem last night!   She lives in the US and we’ve only seen each other once in the last fifteen years (not including last night), and it was very special to be able to share this event with her in person.  It was a beautiful, beautiful evening, very poignant and emotional for me after knowing the mother for almost thirty years and the bride since she was an infant.

    I was expecting that I’d hardly know anyone outside of the family members of the bride, but I was very pleasantly surprised that it wasn’t the case! First, I had the pleasure of meeting a blog reader and her mother-in-law.  Then while I was speaking with them, I saw a friend for whom I made sheva brachos about 21 years ago, accompanied by her three teenage daughters (she still remembers spending Shabbos at our home when she was in early pregnancy with her oldest, now 20).  I saw her briefly at a get together arranged when I visited Israel in Feb. 2011 (before making aliyah was on the agenda), and before that it had been at least nine years since we saw one another.

    Then while talking to her, someone suddenly exclaimed, “Avivah!” and I turned to see someone excitedly approaching me who I couldn’t immediately identify.  You know when you’re not expecting to see someone you haven’t seen for a long time so you need a minute to place them?  A moment later I realized she was a neighbor and friend who I last saw 15 years ago – she then moved to Brazil and I hadn’t had any contact with her since then.  She had no idea I was in Israel, and I had no idea she was in Israel – it was a very wonderful mutual surprise!  We spent quite a bit of time catching up.

    Then when walking to the chuppa, I glanced at someone who simultaneously glanced at me, and we both said, “You look familiar!”  Turns out she was Yirmiyahu’s physical therapist at Shalva for the few times he went, over a year and a half ago.  What a lovely woman.  When the meal began, I happened to sit next to someone who recognized me from the homeschooling talk I gave in Telzstone in June.

    It turned out to be a very social evening that I thoroughly enjoyed, but all of these interactions were really the cherry on top of being able to be there when my dear friend’s oldest daughter got married.  I stayed in Jerusalem overnight and the next day we (me and the mother of the bride) were able to spend several hours chatting, which was amazing.  A good friend is an incredible gift and I am very blessed.

    And I’m also happy to be off of all those buses….I’m becoming an increasingly disgruntled and weary traveler.  🙂  I need at least a month of no long distance bus travel before I can mentally think about making that trip again.  Ugh.  I seriously feel like spending a day in bed.  I won’t belabor how difficult this trip was for me, but truly  every second of the traveling was worth it to share this life event with my friend!

    Avivah

  • Accompanying dd18 to orthopedist and police station

    I spent a long day in Jerusalem yesterday, beginning with the bus ride there at 6 am.  I really could have taken a bus an hour later and gotten there with plenty of time to spare but dd19 was going on the earliest bus so I took the chance for some extra time with her and the only cost was waking up an hour earlier!

    The purpose of my visit was to accompany dd18 to the orthopedist to check on how her bone is healing.  When I told dd I was planning to come with her to the appointment, she told me it was ridiculous for me to come all the way to Jerusalem for a five minute doctor’s appointment.  (She knows what’s involved time and energy-wise for me to make the trip to Jerusalem – it’s a full day of traveling.)  I told her that I wasn’t asking her opinion about if it was a wise thing to do, just letting her know I’d be there!

    When we got to the orthopedist’s office, he spent less than a minute looking at her arm before telling us the bone was healing straight.  Then he spent the next few minutes of our visit on the phone, during which I joked with dd that she was very generous when she had estimated she’d have a five minute visit!

    We stayed in the clinic for quite a bit longer since I wanted to get dd’s cast replaced since it had been put on quite loosely, they had then sawed it open at the top along the length (maybe they had a concern about her arm swelling?) and it was beginning to break after just a week.  The orthopedist said it wasn’t necessary, it just needed to be repaired and referred us to the nurse to have it taken care of.  When we got there, the nurse took a look and when I told him it was supposed to be repaired, asked which doctor we spoke to and went to go speak to him.  The nurse came back and said the doctor said to replace it.

    Hmm.  Well, it’s what I wanted so no complaints there.  Then he told us we had two choices for a new cast – the traditional cast, or one that would be lighter, thinner (to more easily fit under clothing) and waterproof.  I asked him what the downside of the second cast would be since it seemed like an obvious choice, and he told me we’d have to pay extra for that cast.  Naturally.

    It was worth it to me to spend the money if it meant dd would be a bit more comfortable and so he gave her the new cast, which is made of a material that became available just a year ago.

    Then we headed to the police station to file the paperwork from the hospital.  I anticipated this would be a very quick errand but was totally wrong – we were there for over two hours.  Some of that was waiting for an investigator to be available and most of it was going over the accident in detail, repeatedly being asked the same questions again and again.  (And after all of that, tonight dd18 called to say that the investigator who came to the scene of the accident right after it happened – someone different than she spoke to at the station- said he has a couple more questions and he wants her to go back in to the station to answer them.)   After this she was giving an authorization form to give the hospital so that we aren’t financially responsible for the ambulance and hospital costs incurred as a result of the accident – the insurance of the car that hit her will cover it.

    As a result of the long time we spent at the police station, I ended up taking a bus home three hours later than I originally planned, and got home at 7:45 pm but it was worth it to be there with dd18.  Yes, she could have done everything herself and she would have.  But she went through much too much having to take care of herself after being hit by a car.  I had some peace of mind at the time that she was being taken by ambulance and assumed that meant she would be looked after.  I was wrong about that.

    She was taken to the emergency room and left in the waiting room until they opened at 8 am (there’s the second emergency room that’s open 24/7 where they took the other man in the ambulance who was hit by the same car and injured more seriously), then sent back and forth between different departments to get xrays, then a cast, then back to the original department again. No one accompanied her, pushed her in a wheelchair, nothing.  I was aghast and so upset when she told me about this two days later.  I’m very grateful to the young lady who got to the hospital to be with her as fast as she could, but she got there just a short time before dd was released so dd was on her own almost the entire time.

    Dd18 commented when we were at the clinic where the orthopedist was, “It’s very hard to get anyone’s attention in places like these.”  She’s right, it is.  That’s why you need someone to be there to advocate for you, because when you’re in pain and especially when in a state of emotional trauma and can hardly process what people are saying, you shouldn’t have to do these things for yourself.

    It was a full day and I always find a visit to Jerusalem exhausting, so today was a slower than usual day.  Tomorrow I’ll be going to Jerusalem again for something I had planned before dd had this appointment – actually, my end destination is Ramat Beit Shemesh, so I’ll be taking a bus from Jerusalem to there.  II’m looking forward to joining some homeschoolers at their weekly meetup there!

    Avivah

  • DD18 hit by car, prayers appreciated

    I got an early morning call from dd18 this morning, and in response to my cheery, “Good morning, M!” which she seemed not to hear, she said, “Um, don’t be worried (I started to feel cold inside as soon as she said that knowing something bad was coming) but I just got hit by a car.”

    She was calling as they were getting her ready to transport to the hospital.  She was waiting in Jerusalem for her bus when a car spun out of control, leaped the curb and hit her and another man at the bus stop.  The man was standing three feet from her; he was hit first and more seriously injured.

    Thankfully, the bench where she usually sits was wet so she chose to stand to the side instead, saving her from a very serious injury – the bench was directly hit by the car and demolished.

    Dd says she was only lightly injured and I hope this is true.  She says she’s mostly okay but right after an accident, a person often doesn’t feel their injuries and I’m waiting to hear after she’s checked out at the hospital how she’s really doing.

    I called dd19 who is in an outlying area of Jerusalem to let her know what happened, and ask her to go to the hospital to meet dd18 so she won’t be alone.  She doesn’t have a direct bus so it will take her some time to get there.  So then I called the dorm counselor where dd18 studies and asked her to arrange someone to be with dd18 in the hospital.  I wish I could be with her but she needs someone now and I’m a few hours away.

    It’s now 8:30 am and I’ll update as the day goes along.  I would appreciate prayers for Michal bas Avivah Michaelah.  If I’m able to get the name of the man who was hurt, I’ll share that as well.

    Edited to add: dd’s dorm counselor met dd at the hospital as soon as she could get there. Dd’s wrist was broken and after giving her a cast was released.  She’ll need to follow up with an orthopedist to check that the bone is setting straight.  Dd19 spent most of the day with her.

    A friend from Karmiel happened to be leaving to Jerusalem this morning and I gave her homeopathic and flower essence remedies for dd to help with the shock and emotional trauma, which dd began taking as soon as it got there.  She’s spent hours sleeping but is still unusually tired.  Her head and arm are hurting – I know it must be a lot because she mentioned it and since she doesn’t complain, for her to mention something means it’s significant.

     I’m going to make an appointment with our osteopath as soon as I can get her an appointment; when I was hit by a car the osteopath told me to wait for two weeks before getting a treatment so it won’t be any sooner than that, and is likely to be Chanuka time since she has a long waiting list.  

    Thank you all for your prayers and good wishes – this was very unsettling and worrisome for us all but I’m so grateful it wasn’t more serious.

    Avivah

  • Kindergarten until 4 pm – right for my child or not?

    A mother asks about how to make the decision about keeping her child in full-day kindergarten:

    >>I have four boys. While I’m a homeschooler at heart, I learned that it wasn’t for me. My oldest was home until he was five, my next, until four, and my three year old just started this year. I’m at home with the baby.

    My current concern is for the middle two. The six year old is in kindergarten and there is a new law that kindergarten children must stay until four. I bent over backwards to get an authorization to get him early. So I pull him out at 1:30, and he is the _only one_ leaving early. The only one.  I mean, it just felt strange, and he was having fun, and I felt bad.

    My three year old is in the preschool directly next door, and I get him at 2, so we wait at the park until that time. And I found out that he is also the only one leaving early!!

    …I was really looking forward to spending the rest of the day with them – I really don’t think that a five year old doesn’t have to be gone from 8 – 4. It’s just too much …

    So my options are – keep going the way it is, pulling him out early, hoping it gets less awkward along the way.

    – keep them both in gan til four. (!) this is expensive and we can’t really afford it, even if I wanted to.

    – stop fighting with the municipality and keep the older one there until four, and schlep back and forth with the baby thee times, in the heat and in the winter. 

    For (a number of ) reasons, I feel like I have just been fighting an uphill battle for so long. I wish I could change my brain and “be like everyone else!”  My husband and I were talking about keeping them both out until four. I said, if I do that, I’ll just send out the baby and get a job. Which seems crazy to me but if I’m going to do it, I may as well really do it, no?<<

    I’ll sum up one aspect of this question: how do you make a decision when your values and the logistics in your life are competing?  No one can answer this but you.  But when I’m faced with situation like this (and believe me, I have been), I go back to the beginning.  That means I ask myself, what are my beliefs?  Then I ask myself, what are my goals?

    This is of course a really personal process and there’s no right answer for everyone.  The right answer for you is the one that resonates with your beliefs and goals.  Take some time to think about what you want your family to look like, what kind of mother you want to be, how you can be that kind of parent, and begin to develop your long term and short term vision for your family.

    Over Sukkos when I sat around the table with my husband and all of our children, I reflected that all those years when I thought I was putting so much into my kids, I had no idea that the dividends would make my efforts look miniscule.  Now I have the gift of hindsight and can unhesitatingly say:  whether you work or stay at home, homeschool or send your kids out to school, spending time with your children is a great investment!

    What to do when you know what you want but you’re tired of fighting to get it?  When your vision is slipping away and you tell yourself it wasn’t that important because the effort involved in pushing against societal pressure is wearing you down?  When it seems easier to let go of what you want rather than to reclaim your vision and stay true to it?

    I can’t tell you whether leaving your kids in playgroup/kindergarten for a longer day is the right thing for you or not.  But I can say that if you don’t live in accordance with your conscience, it’s very painful in the long run.  This question is about living in alignment with what you care about, and this is why getting clear on what is really most important to you is critical.

    It hasn’t always been smooth or easy doing something different than most people around me.  And it hasn’t always been easy for my kids. There’s always a price you pay, whether you live according to your values or not.  The discomfort of feeling different is often part of the price for your vision.

    A guest once asked me, “How did you have the courage to go against the stream?”  She understood the societal pressure we faced in the Orthodox Jewish world as homeschoolers.  For me, the hardest part was making the decision in the beginning.  Once I did, staying connected to my vision (and as time went on, seeing the benefits to our family) is what gave me the strength to continue.

    Once you get past the initial difficulty of committing yourself to a given course of action, it gets easier.  But you have to know what you believe, know what you want and trust in yourself.  It’s easy to get discouraged when you feel like what you’re doing isn’t really making a difference; in the close up view, it’s really hard to see what difference it makes if you take one path or another.  Clarifying your vision is like having a telescopic lens.

    Here are some things to think about:

    – What is your paradigm of parenting and why?

    – What are the benefits and cost of having your children gone longer? At the top of a piece of paper, on one side write ‘pros’ and on the other side write ‘cons’. Seeing it in black and white can be really helpful.

    When it comes to longer school days for children, keep in mind that the longer kids are away, the more restless they are when they get home.  There’s generally a lot of stress for a young child in being in the preschool environment.  This will directly affect the day to day demands of you as a parent.  It’s easy to get caught up in managing behaviors instead of proactively connecting.

    As additional food for thought, I’m including a short clip with Dr. Gordon Neufeld, in which he answers the question regarding what age should a child ideally start school.


    Avivah

  • Sukkos roundup and getting back to routine

    sukka 1Another beautiful yom tov has come and gone!

    It’s been two years since all of our children have been home for Sukkos.    I loved sitting around the table with everyone and particularly cherish our family time spent singing together.  I love, love, love this!

    On Sukkos we celebrated dd13’s birthday, which means she’s now 14.  She was five when I started this blog.  How time flies, hmm?

    Last week we also participated in a Sukkos lunch/chagiga for the English speaking families here in Karmiel.  We’ve had several of these type of events together with the goal of developing a sense of community: one person hosts and everyone brings a dish to share.  This time about ten families participated.  The food was wonderful, the company was wonderful, and the music and singing was wonderful!  Karmiel attracts really, really nice people.

    On Simchas Torah, our older boys (ds21 surprised us by staying home instead of going back to yeshiva) danced up a storm.  Yirmiyahu (2) charmed the womens’ section by smiling, waving and blowing kisses each time he passed by in the arms or on the shoulders of yet another dancing brother.   Ds15 performed a feat that will leave people talking for a long time to come and caused my heart to go faint made me very nervous.  He told me afterward that when I was signalling him with my eyes to stop that my eyes were almost popping out.  Maybe that’s an exaggeration but maybe not.  🙂  He danced with someone much heavier than him on his shoulders – that sounds much less dramatic than it was.   All’s well that ends well.

    Dh was honored with Chassan Bereishis on Simchas Torah and since here in Israel we only have one day yom tov, that meant that Friday we got busy baking for the kiddush on Shabbos!  My girls did a great job doing a lot of baking in a very short span of time while ds21 took down the sukka and got everything put away with ds12 (and a couple of younger boys to help, too)!  We hosted the kiddush with a friend whose husband was honored with Chassan Torah.  It was really nice.

    Today was our first day back to our normal schedule.  As much as I loved the holidays, there’s something very grounding about getting back to a routine!  I started a new chore chart for this year but there wasn’t much time to get everyone used to it before the holidays.  So the excessive complaints this morning were predictable – as if they’ve never been asked to do these jobs before!  For me, I’m busy tackling Mount Washmore.  🙂

    I’ve been thinking lots about our homeschooling focus for the coming year and determining what I want to adjust for each of the five kids who are homeschooling this year.  You might think that after so many years of homeschooling that I run on automatic but for me, running on automatic for an extended period isn’t a good thing.  It feels dry and uninspired.  It’s been very helpful and energizing for me to think through what I want to accomplish this year, what are my specific goals for each person and why.  The big picture always stays the same for me but the details of how to get to that goal often shift.

    I was just contacted today by a writer for the Hebrew language Mishpacha magazine about doing an interview with them about homeschooling.  I always have a million and one thoughts on education and child raising, so we’ll see in what direction it goes!  I’d love suggestions from you about what kind of questions you’d want answered if you were reading this article.

    I’m now looking forward to hunkering down in the long stretch between now and the spring and moving towards our homeschooling goals!

    Avivah

  • Tips for supporting a child with Down syndrome

    Now that Yirmiyahu is two and in my last post I shared the assessment from the professionals at the Feuerstein Institute that he’s doing unusually well, I thought I’d update on what we’re doing to be supportive of him.  Hopefully this will be of some help to someone else wondering what steps can be taken to help a child with Trisomy 21.

    With a long standing passion for nutrition and alternative health, it’s my conviction that what you eat really, really matters.  It affects many more things in the body than we can imagine, and scientists are constantly discovering more and more connections.  I also believe that children with T21 need more specific support than the neurotypical child, and will continue to need more support throughout their lives.

    Diet – what we do is very basic.  Yirmiyahu eats a whole food diet that includes proteins, fruits, vegetable and fats (mostly coconut oil and olive oil, some butter) and limited grains.  This is the same as everyone else in the family though we’re more careful with the fats he gets.

    We use very minimal amounts of processed foods and don’t give him foods with gluten (wheat protein) or casein (milk protein), both of which are very difficult to digest and can affect the body in negative ways.  We limit these with our other kids but are more careful with Yirmiyahu.

    For the first two years he didn’t get any sugar;  now he gets a Shabbos treat along with the other kids if he answers a parsha question (the question we start with for all of our kids when they are little is, “What day is today?” “Shabbos!”  Yes, he knows the sign for Shabbos.  :))  Again, this is similar to our other kids.

    Nutritional supplementation – I have a strong preference for supplements that are as close to how they were created in nature but we live in an imperfect world and that’s not always possible.  Our experience has been that the symptoms associated with T21 require more targeted treatment than what food based supplements offer.

    Fermented cod liver oil – okay, this stuff is awesome!  It has vitamin D, DHA,  essential fatty acids (and a host of other stuff I’m not mentioning), it strengthens bones, teeth and the immune system.  It’s a superfood that everyone could benefit from.

    Probiotics – probiotics are great for everyone, but for someone with a less optimized digestive system, these are critical.  We switched from lactose base probiotics to soil based probiotics several months ago.  I now use Prescript Assist; a little bit goes a long way.  I give him about a 1/4 – 1/2 of a capsule daily.  Homemade lactofermented veggies are another  wonderful source of probiotics but Yirmiyahu isn’t yet a fan of them.

    Saccharomyces boulardii – I love this stuff!  Remember Pac Man, the arcade game of the 80s? That’s what this reminds me of.  This probiotic yeast gobbles up the bad yeast and isn’t killed by antibiotics.  This isn’t something I’ve read of anyone else using in the T21 or natural foods world but it’s very valuable for us.

    Blood tests when he was in the intensive care unit as an eight month old showed Yirmiyahu had candida.  Since I had researched candida extensively several years before I knew exactly what this was, but asked the doctor for his thoughts on what it was and what the consequences were.  He told  me not to worry about it, it didn’t matter.  Well, it mattered to me since this overgrowth of fungal yeast will manifest itself in many ways as it increasingly breaks down the body.

    Yirmiyahu had a good diet but he constantly had loose stools that seemed to burn his skin – his bottom would be bright red and often bleeding after he had a dirty diaper no matter how quickly we changed him.  I tried different things to improve this but the best I could do was slather on a thick layer of zinc oxide cream, which didn’t do anything to improve the underlying problem.

    When I added saccharomyces boulardii to his bottles, within a very short time his stools normalized and his rash disappeared.  Since I changed his probiotic to Prescript Assist at the same time, it took me a while to be sure which of the two was responsible for the improvement.  I began leaving out the probiotic and it became clear this was what was making the difference for him.  Since I began giving this to him at the beginning of the summer, he’s had only one bad rash.  What used to be a regular sight has thankfully become unusual and I hope this continues.  I love this stuff.

    This is especially helpful for us since Yirmiyahu gets antibiotics twice a day and I can put it into his bottle together with the antibiotics, unlike probiotics which are neutralized by the antibiotics and have to be given at a different time for them to be beneficial.  I ‘m unhappy about these antibiotics but have some peace of mind that I can minimize some of the negative side effects by using this.

    PQQ – this is a relatively new kid on the block in the scientific community and is Yirmiyahu’s newest addition.  Every person with T21 has neurons that are constantly dying – you understand this is a big concern, right?  That means you can’t assume that your child as he is now, will have the same mental capacity in twenty years.  It’s well-known that Alzheimers is a huge issue for people with Down syndrome as they age.  That’s bad, bad, bad but thankfully there are steps we can take at this young age to counteract this.

    PQQ is one of them.  PQQ not only slows mitochondrial decline, it helps grow new mitochondria.  This is a big part of why I supplement – not to see immediate results, but to help Yirmiyahu maintain his cognition now and avoid the inevitable cellular damage later down the road.  He’s on a starter dose of .5 mg per kilo daily.

    A very nice bonus is that within a couple of weeks of beginning PQQ, Yirmiyahu became noticeably more verbal.

    Multivitamin – we used to give him a multivitamin formulated specifically for people with T21, but switched when he was about 14 months to a different multi that was recommended based on his specific bloodwork (actually it’s an autism multi – GI Pro for anyone who may be wondering).

    I’m doing a thorough blood work up later this week and will likely make some changes to his current protocol based on the results that come back.  I suspect something is going on with his thyroid because the soles of his feet are dry; he had this symptom in the past (it took a long time until I learned it was a symptom of hypothyroidism) and it cleared up with supplementation.  I’m not sure what I’ve changed that his feet are dry again; I suspect it may be because I stopped the additional methylfolate, selenium and B12 I was giving but I don’t know if it’s a combination of all three or one particular supplement that is responsible for this.  (All of these are in his multi and I thought he was getting enough through this. )

    His thyroid testing when he was about a year old showed elevated TSH and by the time he was eighteen months, we got into a much better range thanks to supplementation.  We also corrected his hypothyroid symptoms; he had become very weak and lethargic.  The doctor said it was normal for T21 and his blood work was normal; I sent his blood work to two people in the US for feedback and made adjustments to his supplements based on their feedback.  He wasn’t properly absorbing nutrients because of his extra chromosome and it was thanks to the addition of supplements that this was corrected and very soon he was back to his energetic and active self.

    Ideally his thyroid should be tested every six months (this is a typical recommendation for someone with T21) but this time it’s been somewhat delayed since I wanted growth hormone testing done along with monitoring his blood cell count (we keep an eye on signs of leukemia because of his history), and needed to get that referral from the endocrinologist; I had to wait three months to get the appointment with the endocrinologist that I wanted.  This week when we do the blood tests, hopefully he’ll only need to get pricked one time.  I wish these tests weren’t  necessary but since they are, I try to minimize the discomfort to him by combining as much as possible at one time.

    For us, supplements have been very important in helping Yirmiyahu stay healthy.

    Hanging exercises – when Yirmiyahu was an infant, we began encouraging him to bear weight by putting his fists around our thumbs as we lifted him a tiny bit.  Now every time we pick him up (unless we’re in public, since people will tell us we’re doing something dangerous), we let him grasp our thumbs and pull himself up.  This little habit has brought big benefits to Yirmiyahu.

    It’s strengthened the muscles in his hands, which is critical for fine motor function.  it’s also strengthened his abdominal muscles.  He climbs up ladders, slides – he’s totally independent in the playground; despite being so small he manages to climb things intended for children taller and older than him.  Recently he shocked and amazed the pediatric endocrinologist when he grasped the edge of the wall mounted sink in her office and began swinging from it.  I didn’t think anything of it, but she told me to turn around and watch what he was doing, exclaiming, “Look at him!!  Look at him!  Look what he’s doing!”  She couldn’t believe a child with T21 could have so much muscle strength at such a young age.  Ideally I would have him using the monkey bars daily to further develop this but I don’t have them available and so for now, our thumbs it remains! 🙂

    Early literacy program – we use a computer program called Brillkids for early reading that Yirmiyahu really enjoys.  When he sees me sitting at the computer, he signs ‘words!’ and tries to climb up onto my lap!  This program includes categories of commonly used words – transportation, foods, colors, toys, actions, people, animals, etc – and it gives him regular familiarity with concepts and this translates to better understanding the world around him in addition to hopefully setting a foundation for reading.  I try to do the computer program twice a day with him and more when possible but five times a day is my max (this is at his initiation).  We’re up to lesson 70.

    Signing – I’ve taught Yirmi a number of signs and this has been very helpful for him to be able to express himself since his cognition is way beyond his verbal expression, as is true of all young children.  The words I’ve taught him are those that are useful for him day to day – for example, when I noticed how frightened he became when he heard fighter jets roaring overhead, I taught him ‘airplane’, ‘loud’ and ‘scared’.  Now he has a way to tell us what he notices and what he’s feeling – when he hears them from a distance, he will tell us he hears an airplane, or that it’s loud, but only tells us it’s scary when they’re very close.  He also can tells us when something else scares him.  I need to spend some time thinking about what vocabulary would be helpful for him now, so I can look up those signs and teach them to him.  Signing is a wonderful tool.

    Communication – I talk to Yirmiyahu a lot and explain what we’re doing as we go along, and have been doing this since he was young.  Most of this is intuitive.  I have one of the books by Dr. James McDonald called Play to Talk, and this helped me tweak what I was doing to be more effective.  He writes a lot about how a parent or sibling is the best play partner for a child and it’s through play that a child learns the most.  He gives clear guidelines for how to make interactions with your child a meaningful opportunity for communication and connection.

    Craniosacral work – I take Yirmiyahu about once every 5  – 6 weeks to a wonderful osteopath who does craniosacral work on him.  She works on different specifics each time depending on what area of the body she sees needs the most balancing.  She almost always works on his respiratory system since this is a part of his body that has always been weaker.  This week she did a lot of improve circulation and to help flush out his system (important since people with T21 are less able to get rid of toxins on their own).   When he was an infant, one eye would periodically get goopy, but after she began working with him to release the underlying block in his facial structure, this disappeared.

    I’ve asked her to work on his palate since it remains high and narrow even though it’s improved quite a bit since he was born.  This is important since the pituitary gland is above the palate and I want that to function as well as possible.  It was easier for her to work on this when he was younger since now when he bites down, he has teeth!  She does most of the facial work externally and very quickly; most of her time is spent on the rest of his body.

    Siblings – my kids are crazy about Yirmiyahu and I can’t overstate how important they are in his life.  He has constant playmates and plenty of opportunities to see and model typical behavior, which is no doubt why his social skills are so good.  He doesn’t have to be taught to take a turn or throw a ball to someone – it’s part of his daily life!

    **Disability Is Natural** – The mindset that underlines everything I do and how I do it is based on accepting Yirmiyahu exactly as he is right now and believing in his abilities.  I was gifted with the book Disability Is Natural when Yirmiyahu was very young.  Quite some time ago I commented to my husband that over the years, my paradigm of what I assumed to be true and what I now believe had shifted in several key areas that changed my life – pregnancy/birth, education and health/nutrition.  With all of these I grew up accepting what everyone did as the norm until something prompted me to explore an alternative viewpoint, and each paradigm shift dramatically changed my life.   I commented to him rhetorically, “I wonder what the next life-changing paradigm shift will be?”

    This book was it.  This prompted my next huge shift in thinking about a topic I had never given much thought to.  It is so powerful and I think it should be required reading for everyone on the planet. 🙂  Seriously.  This will give you so much food for thought and affect your parenting of all of your children and others you interact with in a positive way.  Fortunately, the author has a website with a free newsletter so you don’t have to spend a penny to read more – http://disabilityisnatural.com/.

    When I read this book, I kept thinking, this woman thinks like me!  (I did keep wondering how with her personality she dealt with the constraints of the school system and the necessary advocacy – and then in the end she wrote about discovering homeschooling and stated that she wished she had done that from the beginning!)   This paradigm has helped me to find the inner balance of being proactive in addressing Yirmiyahu’s needs and fully accepting who he is.

    Avivah

  • Feeling confused…why is Yirmiyahu doing so well?

    Yirmiyahu, age 2
    Yirmiyahu, age 2

    I’m back from a long day in Jerusalem!

    Our visit to the Feuerstein Institute went well.  The eight staff members I met were all professional, warm and caring.  Yirmiyahu was part of a group of five children; I knew he would be the youngest but didn’t realize there would be the big gap there was.  This is the youngest group of children at the Institute right now.  He’s 26 months, and the other four kids were all 3.5, almost 4.  So he’s really, really much younger.

    Fortunately this didn’t pose an issue for Yirmiyahu!  Far from it.  He did great.  Even though he woke up at 5:30 am and was tired from traveling and a disrupted sleep schedule, was in an unfamiliar place with unfamiliar people – ie far from his sparkling best – he participated fully in each session.

    There’s no question that there’s a lot to gain from being at a place like the Feuerstein Institue, but I decided not to pursue further participation at this point for a number of reasons.  A big part of that decision is that even though Yirmiyahu is so much younger than the other children in his group, he’s more advanced than all of them.  Initially when I had questioned putting him in a group of kids who were older (not realizing how much older they would be!), they said it would advance him to be around older kids.  But I don’t believe that will be true in his case.

    There would definitely be benefits but as of now, the other considerations outweigh them.

    Since Yirmiyahu was very, very young I have felt he wouldn’t benefit from being in a special education setting, and that conviction was strongly reinforced yesterday.  I don’t look at him as a child with special  needs and don’t treat him like a child who is limited – because he’s not.  Despite my belief that it’s best for him to be with typical kids, I agreed to put him in this group of children with developmental delays because of the incredible reputation of the Feuerstein Institute.  But I felt increasingly uneasy as he sat around the table with the other children.  It felt like a mismatch for who he is and what his needs are.

    I paid close attention to everything each therapist did in every group and how they said it because I wanted to soak in as much as I could to hopefully apply their strategies at home – and I was continually struck by how similar it is to how I speak to Yirmi.  That was a big eye opener to me and I began to understand what the evaluator meant when she told me at his six month evaluation that I was intuitively doing the things with him that they usually have to teach parents.  I spoke to a mother during a break and asked her about the experience at the Institute.  One of the things she said is that there are some people who intuitively do these things with their kids, it’s natural to them and they don’t see what the big deal is.  It seems I’m one of those parents.

    At the end of the day, I was speaking to a different mother whose daughter was in Yirmiyahu’s group and asked her something specific about her daughter.  She told me, “You’re not going to have an issue because your son understands everything!”  I asked her how she could possibly have noticed that, and she said it was obvious that of all the kids he was the one who understood in every situation right away what he was being asked to do and did it.

    Also at the end of the day, the occupational therapist exclaimed, “Your son is amazing!”  She asked if his therapists locally are going crazy by how well he’s doing.  I asked her why she said that – I don’t know any kids with T21 in person who are his age to gauge his progress and anyway, I try to avoid comparing my kids to anyone else so I don’t have the perspective to see what she’s seeing.

    She responded that she sees many, many kids with T21 and he’s unusually advanced.   She seemed surprised that this wasn’t blatantly obvious to me.  I mentioned that the way the therapists spoke in the sessions was similar to how I speak with Yirmiyahu, and she said it’s clear that I’ve been mediating (to use a Feuerstein term that means to actively help your child process and make sense of the world) since he was born.  I often hear comments that he doesn’t look or act like he has T21 which I mostly disregard, but the feedback from staff members at this institution is based on many years of experience so that counts for more than the casual comments of someone in the park.

    I’m frustrated with my lack of clarity about all of this.  When people told me over the years that my kids were so well-behaved or kind or responsible, I thanked them and knew what efforts I had made that led to that result (along with a huge dose of heavenly assistance – our efforts are never soley responsible for our success).  I could tell you how to do it, too.

    But in this situation, I don’t have that same feeling of confidence, of knowing that I did this and it led to that result.  I know what I’ve done and could give you a list if you asked me but I couldn’t tell another parent with the same confidence I can when it comes to parenting issues, do this and you’ll get this result.  I keep wondering, could it really be this simple to successfully raise a child with T21?  It can’t be, right?

    I don’t want to downplay what I do with Yirmiyahu.  But I see what I do with him as mostly being a responsive mother just like many mothers out there and have a hard time imagining that this is unusual.  I don’t sit around doing therapy.  I don’t sit around practicing speech.  I don’t sit on the floor playing educational games every day and I don’t read him books every day.

    Staying close to his siblings during waking and sleeping time :)
    Staying close to his siblings during waking and sleeping time 🙂

    Mostly I just love him.  I talk to him like I talk to all of my kids, I know he’s smart and capable and I expect of him what I expect of all my kids.  And he gets lots of love and stimulation from all of his siblings.

    I remember predicting to myself in the early days (when he was less than a week old and in the NICU) that when he got older I would hear how lucky I was and that he must have been born high functioning.  I was prepared to hear it was luck and I didn’t anticipate the professionals being so verbal about it being a direct result of my efforts.  It’s nice but I’m uncomfortable with it.

    Yirmiyahu, 2 years old
    Yirmiyahu, 2 years old

    I feel a lot of humility and gratitude for how well Yirmiyahu has done.  Even though there are things I’ve done and I know they matter, it seems like it should take a lot more than the efforts I made to see the results that surprise people so much.  (I don’t see anything surprising, he’s doing well but I don’t think he’s a superstar.)

    Is it possible that because I loved him as he was from the time he was born, actively mediated the world for him, believed in his abilities and kept my expectations high, that he could be doing so well?

    Food for thought.  I’d love to hear your thoughts and experience!

    Avivah

  • Finally – an opening at the Feuerstein Institute! Now what?

    flash-placeholder[1]When Yirmiyahu was six months old, I took him to the Feuerstein Institute in Jerusalem for an evaluation.  At that time I put him on the waiting list for services there, and was told he would probably get in at the beginning of the school year.  Last year.

    So here we are a year and eight months later, and I just got an email saying they have a space and do I want it?  It’s in a group setting and begins this week.  He’ll be the youngest of five children with various developmental delays, and the three hours will include speech therapy, occupational therapy and instrumental enrichment (this is a Feuerstein term, it’s nothing to do with musical instruments).  The first two therapies they said differ from typical therapies because of their focus on cognition.

    You might expect me to be jumping with joy but the truth is I felt a lot of ambivalence when I got the message.  First of all, it’s expensive.  I was told that I should get some kind of money back from the insurance company but I don’t know how much and I don’t know when I would see that money.  It definitely wouldn’t all be covered and I don’t know what’s going to be involved in getting a refund through the health care system.

    In addition to that expense is the cost of traveling to Jerusalem every week.  That’s  not cheap and it’s also not a short and easy trip.  This is my biggest concern.  Yirmiyahu is thankfully a very healthy and active toddler.  His willingness to sit on the bus lasts about ten minutes and the forty minute bus ride to the pediatric endocrinologist last week required a lot of active involvement on my part to keep him from climbing down.  Three hours on a long distance bus that won’t allow for getting up and walking around is really, really exhausting.  That trip would be followed by a local Jerusalem bus for another half hour of travel.  So it will be a minimum of seven hours of traveling, not including wait and transfer time, for a three hour appointment.  It’s a full day – I would leave Karmiel at 6 am and hope to be back by 4:30 pm.

    And then I thought, this is the only place in this country that believes in our kids the way that I do, that knows what they can do and supports that.   I expect Yirmiyahu to be an independent and capable adult and it would be so, so helpful to have other professionals actively supporting that, who have the knowledge and experience to guide us. That support would be worth a lot to me.  I still find a lot of encouragement and reassurance from the one evaluation at Feuerstein when he was six months, and there’s a lot to learn from them! 

    I decided to put aside my thinking about the limitations and difficulties involved in participating, and trust that if this is what he needs, we’ll be able to make it possible.  He’s  now scheduled to begin tomorrow.  I told them I can’t commit to a year or even more than a month since I have to see if continued participation is feasible for us, but I’m really looking forward to a positive experience there.

    Avivah

  • Helping kids regroup from the behaviors picked up at camp

    >>Do you have any advice for doing “damage control” after camp/preschool etc? After being home with me all year my kids had a fantastic summer at an amazing camp- but several weeks later I’m still trying to remedy the things they picked up there- name-calling, saying hurtful things to each other, as well as more tantrums and less listening, etc. Camp was great but is it worth it??<<

    I so much understand this question!

    The first time we encountered this phenomenon was when my oldest went to sleep away camp for three weeks when he was 12.  Camp was a wonderful experience for him but it took three more weeks at home until he returned to his pleasant and relaxed self.  The week he came back was the first and only time I ever heard a curse word from the mouth of any of our children.  He was much less pleasant to be around; it was like he forgot how to get along with everyone during the time he was away.

    I’ve experienced this several times since then.  It’s a direct result of kids spending a disproportionate amount of time with their peers.  The behavioral changes reflect the increased attachment toward their peers and the diminished attachment to you and your values.  Camp and school both can lead to this dynamic, but so can long vacation days at home if your child is playing with friends all day long.

    At the beginning of this summer, I set boundaries to proactively address this, and set a limit of four hours a day my kids could play with friends – 11 – 1 and 4 – 6 pm.  I purposely didn’t let them play for four solid hours with friends since the break in between was helpful in them reconnecting to me at home.  Even so, this was sometimes too much for one child and my older kids kept commenting how nice it would be when we get back to our less peer oriented year round schedule.  They’re quick to notice the signs of peer dependence sneaking in!

    Time, connection and reasserting boundaries is the answer to this.  Your kids need to detox and they need your support and love while they slowly discard the behaviors and speech that they picked up while at camp.  Spend as much time in a relaxed and enjoyable way together and try to really enjoy each other.

    Then when you see certain behaviors crop up, address them from a place of love and strength.  Be clear about what kind of speech and actions create the home environment that you want to have.  If you hear someone speaking or acting in a way that isn’t in line with that, gently but firmly help them correct the behavior.  (I’ve written at more length about how to establish and enforce boundaries but it’s been a while and you’ll have to search the archives for it.)

    An example of something I do with my kids is have them repeat what they wanted to express in an appropriate way.  If someone says something like, “You’re so stupid, why are you always bothering me?” one thing you can do is:

    A) Reflect back the feeling – ‘you sound frustrated’, ‘it’s hard to have people using your things without permission’.

    B) Then move directly into modeling how they can better express that – “A nicer way to express that would be, ‘Please don’t touch my things without my permission.’”  Then have them replay the scenario using the words you modeled for them.  You can do something similar with physical misbehavior.

    Then keep doing that for years 🙂 and one day you’ll enjoy the benefits!

    Avivah

  • Miracles happens when “can’t” isn’t part of your vocabulary!

     4:55

     

    “Can’t is not part of your vocabulary.  If you just put your mind to it, you can do it.”

    “If you were never given limits, then you think ‘I can do anything!’”

    Wow, was my reaction throughout the following video.  This is an amazing story in a number of ways – I don’t want to spoil it for you so I’ll just say, it’s five minutes well spent.

    Watching this makes you want to be a parent like this young lady’s adoptive parents – to so fully believe in your child that your child believes in himself, and goes on to do the ‘impossible’.  A little belief in our kids goes a long way.

    Avivah