Avivah Werner

Category: Parenting

  • The seminary decision saga is winding to a conclusion…

    There has been so much going on with dd17 (as of yesterday :)) and her seminary saga.  Let me catch you up and then tell you where things are finally at as of today!

    Months ago, dd applied to Gateshead seminary in England.  She was interviewed in April and accepted.  However, she decided after the interview that she’d rather go to a local Israeli seminary.  We don’t know much about the options here, and after meeting with dd’s high school guidance counselor, decided to follow up on the two seminaries that she suggested.

    Of the two suggestions, one is a larger seminary with 90 students in the first year program, the other is much smaller with just 30 students.  Dd interviewed at the larger seminary first, and the principal was very taken with her.  Then dd had an interview scheduled at the smaller seminary and was waiting to see what it was like before making any decisions.

    After interviewing at the smaller seminary, she felt it was too small for her and wasn’t going to have enough enrollment for the training program of her choice to open, architectural design.  (Israeli women’s seminaries have religious studies in the morning and career training in the afternoons.)  She decided to go to the larger seminary since they would definitely have the necessary enrollment; at her interview she hadn’t had a good feeling and originally wasn’t interested but when she popped in for a visit on a different day she got a much better impression.  Weeks went by and dd got a letter about three weeks ago notifying her that she was scheduled three days later for career aptitude testing.  The track she had chosen was the most vigorous of all their offerings, and students are only accepted into this program after showing the necessary skill and aptitude via the testing.

    Dd took the test in Hebrew – we asked to get it in English but they needed more advance notice to order it – and did well anyway.  Quite well.  We were notified a week later that she got the highest score of all the girls who took the test.  However, despite the high interest in architectural design, most of the girls who took the test didn’t pass, and of those who passed, most didn’t do well.  Dd was among very few who scored high.  As a result of the testing, her track won’t be opening this year.

    This was a big disappointment to her, and that meant that two weeks ago, less than four weeks to the start of the new school year, she was faced with a choice.  Should she stay with this seminary, which she had a really good feeling about, and do a career track that didn’t excite her?  She really didn’t like that idea. So we started searching for another seminary.  We heard about one that would definitely have architectural design, but since it was vacation no one was answering at the office.  In the meantime, dd spoke to a friend who told her information about this seminary that made us decide it wasn’t where she wanted to be, and also mentioned another seminary that would definitely have the program she was interested in.

    I was fortunate to reach the secretary the day that I called – she said due to summer vacation she was only there for a few hours and wouldn’t be in the office again for another week.  I explained the circumstances of our late inquiry to her, and asked how we could speed up the application process.  She said she’d fax the application to us, and if we could fax it back before she left for the day, she’d begin processing it that day.  (That means they check out the girl to see if they’re interested, before scheduling an interview with her.  If they aren’t interested, they don’t give you an interview.)  At at this point I was told they won’t be offering architectural design this year, and instead will have industrial design.

    I told dd about this and she said it’s obvious that God is trying to tell her something, since it’s not normal that none of the programs that all opened last year aren’t opening this year.  With no time to research what was involved, dd decided she’d change to the industrial design track.  Dd rushed to get everything in and we got a call a short time later saying she was approved for an interview, but the principal was on vacation in the north.  I asked, “Would it be possible for dd to interview with her while she was still in northern Israel?”  Maybe – I should call back Weds. evening.  I did that (that was the night dh came home – I called her from the train on the way home from the airport!) and the principal said they had just returned to Jerusalem that evening after several days in the north.  I told her I was disappointed since we live in the north and it would be much easier for dd if she didn’t have to travel to Jerusalem (which I had explained the secretary but apparently that part of the message wasn’t passed along).  The principal told me she would be in Haifa for two days the following week, and we scheduled dd’s interview for this morning.

    Dd had a really nice interview with the principal.  She said the most interesting thing she was asked was what kind of person she wanted to marry.  Dd told her someone with good character who has strong Torah values.  The principal asked, “Do you want to marry someone in kollel?”  Dd told her, “I can’t say because I don’t know who the right person will be.”  “But,” persisted the principal, “would you want him to be in kollel?”  Dd said, “If he was in kollel, I’d want him to be serious about it.  I wouldn’t want to marry someone who’s in kollel just to be able to say they’re in kollel.”  The principal asked (you can tell she was trying to figure dd out since she’s a very refined and spiritual young lady, and her her responses weren’t matching what is expected of girls like her), “Do you know anyone learning in kollel?” Dd answered, “Yes, I know lots of people in kollel.”   (Dd didn’t say that her father learned in kollel for ten years.)  “Well, do you respect them?”  “Yes, but it’s very hard and it’s not for everyone. ”  The principal asked her if she understood that the approach she would be hearing there was pro kollel as the ideal, and dd said she understood.  Later dd told me she realized her answer to this might make the difference to her being accepted or not, but she needs to be honest about who she is rather than give the answer she knows is expected.

    The principal concluded the interview by telling her that they never notify candidates of their acceptance until at least a couple of days after the interview so they can gather more information about the applicant, but in this case she was going to make an exception and told dd on the spot that she was accepted!  That was really nice since there’s already been so much uncertainty and it’s helpful to have some closure.

    It was good that dd had already taken the career aptitude testing, since the results could be transferred to her new school immediately – this was important for them to have and smoothed the late application process along.  The principal told her about the industrial design program and dd is really excited about it, even more than the architectural design.

    I try to live my life with the understanding that everything is guided by God, which is easy to believe when things go the way you want but much harder when nothing seems to be going your way.  This is a paradigm that I’ve seen dd has really worked to internalize that has come up again and again during this process.  It makes dealing with uncertainties and difficulties much more manageable.  Dd kept telling me obviously there was a reason nothing was working out, and now she can see that she’s ending up in a place that is better for her in all ways than the other options, and she’s really excited about it.

    In two and a half weeks her program begins.  There’s no dormitory so we have to find a place in Jerusalem for her to stay.  This is a big concern but she said she’s trusting that somehow we’re going to find a place.  There are shared apartments for rent which would be ideal since it’s easy walking distance to the seminary but that’s a big financial stretch for us at a time when we’ve had a tremendous expenses at the same time our income was cut by half.  She’s reluctant to do a live in nanny kind of position, since the program she’ll be in is very intense, and she won’t have much available time to work.   We’ve heard that there are often older women who are happy to have someone stay in their home for the company, but I don’t know anyone in that situation or even know who to ask about it.  Most Israeli girls stay with friends or relatives if they don’t live in the area.  So often I have this feeling of being behind the eight ball here, having no connections that Israelis take for granted to smooth the way in so many areas.

    Time isn’t on our side but God is, so this will be one more step in this process in which we do our part, and we’ll see where things come from- so often it’s from a different direction than what we anticipate!   (If any of you have suggestions, please share them with me!)

    Avivah

  • Finally…together again!

    Some people I’ve met upon hearing my husband has been gone for four months assume that he has some lucrative work opportunities that are keeping him away so long.

    No, not at all.  But we do have a priceless investment in the US, our dd18, and dh went to the US to be with her for medical reasons.  Four months is a long, long time but he and I both felt this was important and necessary, and neither of us have regretted this decision at all.

    A lot of people have asked me about how I managed and the answer is, you do what you have to do.  It hasn’t been easy and dealing with all the consequences of the situation on this side of the ocean by myself has sometimes been very difficult and unpleasant.  But you do what you have to do.

    Finally, finally – dh is home again!

    I went to the airport alone to pick him up last night, so that we’d have time to talk ourselves before he saw everyone.  I also didn’t tell the littles that dh would be home until the next day, because I knew they would get hyper and wild due to the excitement and being overtired.  I wanted them to be asleep when he got home so he could spend time with the older five kids, and then he would be able to focus on the younger kids first thing the next day.

    It worked out beautifully.  We enjoyed the quiet trip home together, the older kids enjoyed time with him – then ds4 woke up from a deep sleep and had such a sweet smile on his face when he saw who was home!  Dh scooped him up and held him for a long time, and the smile didn’t leave ds4’s face the entire time.

    This morning ds5 and ds7 woke up and were discussing between themselves that ‘Today Daddy is coming home!”  Ds4 woke up and sleepily said, “Nu uh, Daddy already came home.”  They told him he was still sleeping and he was having a dream, and then knocked on my bedroom door to verify that they were right.  I was asleep and when ds5 called out, “Is Daddy here?” I thought they had heard from someone that dh was home and just wanted to know if dh was sleeping, so I answered, “No, he went to shul.”  They were shocked and excited – that wasn’t what they were expecting to hear! – and ds20 took them to shul to meet my husband, who was very pleasantly surprised to be greeted by his happy and cute sons!

    Yirmiyahu is very easygoing but doesn’t like being held by someone he doesn’t know, and after dh not being here for four months, he has no idea who he is.  So he smiles at dh from the safety of the arms of someone familiar.  As soon as dh comes close enough to for Yimiyahu to think dh might hold him, he tightly clutches the person holding him.  I keep seeing him scoping dh out, watching him intently like he’s trying to figure out what he’s doing here!  This is how it was until he got used to ds20 when he came home a couple of weeks ago, and I think within two or three days he’ll be as happy to be with dh as with everyone else in the family.

    Though I know there will probably be some sort of resettling process for everyone, it feels normal to have dh home again.  Normal but very wonderful at the same time!

    Avivah

  • Turning errands into adventure and fun with littles

    Often people say that there’s not much to do when the kids are home on vacation unless they organize major outings.  I want to share about a day I recently had with the younger boys, since it’s an example of how easily regular errands can be turned into fun with just a small shift in perspective!

    For the day in question, I had the following scheduled: a visit to the naturopath first thing in the morning and an appointment in the afternoon with an ENT for ds4 and ds5 to an ENT.  In addition, I needed to get paperwork from my health clinic (in one outlying neighborhood) and more paperwork from National Insurance (in a different neighborhood).   I turned all of this into an opportunity for fun and adventure with the kids, while getting everything needed done!

    As I was dashing out the door in the morning to go to the naturopath, ds7 asked me if he could come along.  I hesitated for a second, then told him to quickly get on shoes and come!  We took a bus to the naturopath, where he played with Legos in her living room during Yirmiyahu’s session. When we finished, rather than take the bus I suggested we walk to the health clinic to pick up the paperwork.  (Walks are a great because you can see things you don’t see when you’re driving.)

    On the way, we passed the home of someone who was apparently decluttering since a number of things were outside being given away.  With the dearth of thrift stores here, our enjoyment at finding bargains finds an outlet with opportunities like this :), and ds7 had a good time going through the boxes, coming away with a number of things (including a small set of Knex and pickup sticks).  I didn’t know how we’d carry everything home, since I was wearing Yirmiyahu and was carrying a purse, and then in the things being given away we found bags!  Perfect.

    I had never walked to the clinic before and didn’t know quite how to get there, so ds suggested we cross at a certain place.  I was willing to go along with that, and we came out to a park where we found grapes growing wild.  Ds picked a bunch of these (putting them in one of the containers we had found) and snacked on them as we continued to the clinic, We got the paperwork and headed home, him happy with his adventures and acquisitions, along with having me to himself for the morning.  None of this was planned; it was what we happened upon during our spontaneous walk to the clinic.

    When we got home, ds4 and ds5 were disappointed that they missed out on the fun!  I reassured them that I’d take them on a special adventure later in the day when we went to the doctor.  (The week before I had been in that area and noticed a couple of things they would enjoy.)

    When getting ready to go, I told them to put on their bathing suits and swim shirts – like this they would be ready for water play and still be dressed in clothes that looked normal for traveling on public transportation.  We went to the appointment, then stopped at the National Insurance office to get our paperwork but rather than just hop on the bus home after finishing our scheduled errands, I told them we were going to have an adventure!

    We walked through the pedestrian mall and I told them to keep their eyes out for fun.  They shouted with excitement when they came across fountains bubbling out of the sidewalk.  Of course this is why I had them put their bathing suits on earlier, and they spent an hour playing there.  Since the height and patterns of the fountains was constantly changing, it was very fun for them.

    When it was time to go, I suggested they run a little further along the pedestrian mall and see what else they could find.  They ran until they found a large and beautiful parrot outside a pet store, as well as a cage with a ferret and another cage with baby hamsters.  They spent another hour playing with these (the ferret and hamsters through the cage bars), and had a wonderful time.

    Finally I said we needed to head home.  They asked if we could go to the library.  I rarely take them to the library because the hours they are open didn’t work well with their school schedules and energy levels.  I told them that if we walked home, we would pass the library on the way and could stop in there. Did they think they could walk that far?  Yes, they all wanted to do that.  So we went to the library, spent some time choosing books, then continued walking….all the way home.  Going from the ENT to our home was a substantial walk (a couple of miles) and for our tired boys to do this at the end of a long day was very impressive.  Ds4 was literally sleepwalking while holding my hand when we got to our street.

    Here are my two tips for finding fun in your every day life:

    1) Look at the things around you through a child’s eyes.  Anything unusual or different can become something for them to explore.  There were playgrounds we passed on our walk that could become potential fun outings for another day.

    2) Leave extra room in your schedule when you go somewhere with your kids – as our boys were playing in the fountains, I watched as most of the other children who passed longingly watched them as they were hurried by with their parents.  The reality is that we are busy people who often have to rush from one thing to another – this is often how it is for me.  But the irony is that sometimes we rush by the things right in front of us, thinking that we have to take our kids special places in order to have fun.  Even things that aren’t

    Kids can have fun anywhere they’re given the opportunity!  So open up your eyes and be open to possibilities!

    Avivah

  • Questioning reasons for giving up baby with Down syndrome

    Yesterday I saw a post on a Jewish women’s board that a healthy baby boy with T21 was available for fostering.  I said if he was in Israel we would be willing to take him, but it turned out that he’s in Brooklyn, NY so another lucky family will get the privilege of raising him.

    I wish people were given accurate information and support after the birth of a child with T21; it would make such a huge difference in the decisions that are made about their futures before they’ve hardly made it into the world.  I understand people being afraid of the unknown and overwhelmed at what they think is going to be involved in raising a child with T21.  Feelings aren’t facts and fear is a very powerful motivator.  Unfortunately the difficulties in raising a child with Down syndrome is in most cases dramatically overstated.  I’m not going to blithely tell you that there are no challenges – but every biological and foster parent I’ve spoken to with a child with T21 has said the reality was much better than they had been led to believe.

    My anguish over the post that I read wasn’t over the need for a foster family.  Sometimes people are overwhelmed and don’t have the resources to meet a child’s needs.  What made me really sad were the comments following the post with the request for a foster family.  This was a board of religious Jewish women, and the overwhelming sentiment I came away with was that giving your child up because of a disability like this is understandable.  What difficulties do they think are involved in raising a child with Down syndrome?

    Yirmiyahu, 1 year
    Yirmiyahu, 1 year

    In this case, the baby was healthy.  In about half the babies born, there are heart problems.  Ten percent of babies have transient leukemia (Yirmiyahu was one of these), which means there are highly elevated white blood cells at birth and is treated with antibiotics.  Fortunately, we live in a time in which heart problems like these are able to be taken care of surgically.  Yes, it’s hard to have a child who undergoes surgery or needs to be taken regularly to medical specialists.  Many babies who don’t have Down syndrome have medical issues that include needing heart surgery- but I don’t see parents being advised to give them up for other families to raise.

    People point to medical issues when they say that it’s so hard to raise a child with Down syndrome (I’ve seen this a LOT on a support board for those who have aborted babies with T21 – less than 10% of babies with this diagnosis get a chance at life).  In my opinion, this is a straw man.  It’s an acceptable reason for giving up a child though the medical issues aren’t really the problem.  If they were, you’d see people commonly giving up babies with medical issues, but you don’t, even when the issues are much more serious than what children with T21 may face.   Giving this reason keeps us from looking a little deeper and a little harder at our beliefs about parenting, the purpose of life and our roles as  human beings in this world.

    Our family summer 2013 050

    1) We’re afraid to be different.  We’ve been conditioned to think that if everyone else is doing something/has something, we want to do or have something similar. We want to fit in. We want to be socially comfortable and we think that means being just like the people around us.   We don’t want a child who looks or acts differently than most of the kids on the playground because of our desire to fit in.  We want a child who will make us proud in ways that are typically assumed to be valuable or at least not cause people to look at us differently.  As a speaker known for her depth and insight once said, there are three main factors in every decision we make: what will others say, what will others say, and what will others say.

    So we have to ask ourselves: does a meaningful and impactful life comes from trying to blend in and be like everyone else?  What kind of life do you want to have?  A life that matters or a life of following the crowd, blocking out your inner voice and ignoring your potential to impact the world in your unique way?  If we want to live a life we love, we’ve got to stop being afraid of what everyone else says and thinks.  As I tell my kids, people don’t think about you nearly as much as you think – they’re too busy thinking about themselves.

    2) We’re afraid to have difficulties.  In our generation we expect life to be smooth and when there are bumps we feel we’ve been ‘unfaired’ against.  Life really isn’t like that.  Life is filled with daily difficulties, small and large.  We’re meant to be challenged so that we can grow and develop our inherent potential that would remain latent if we were untested.  It’s not always pleasant but it’s good.  Hard and good aren’t mutually exclusive.

    3) What is your role as a parent?  Is it to nurture to the best of your ability the child that is born to you, to help him actualize the seed of potential inside of him?  Is it to bask in the approval of others or turn him into a nachas machine?  If it’s to nurture him and love him for who he is, then parenting a child with T21 is pretty much the same as raising any other child.  Every child will require you to stretch yourself to find ways to meet their unique needs.

    Our family summer 2013 051

    Some needs truly demand a lot more time and energy than others, and parents really need more resources than they have.  However, I believe that if parents were given a more accurate picture of the reality of living with Down syndrome in addition to letting go of some limiting beliefs, we would see requests like the above seeking a home for an infant with T21 dramatically drop.

    Avivah

  • Vehicular heat stroke – summer safety video

    Every summer, children all over the world die after being forgotten in cars.  The two year old son of a close friend of ours almost died several years ago when a friend who was doing carpool for the parents that day forgot he was in the car.  She wasn’t used to having him with her and locked the door behind her when she went into a store to do her shopping.  That’s how easily a responsible and caring person can forget a little child and put their life in danger.   She found him unconscious when she opened the back door to put her shopping bags in the car and started screaming for help.  He was immediately taken to the hospital, and though his situation was very serious, thank God he survived with no lasting injuries – but even a couple of minutes more would have been fatal.

    A car gets very hot, very fast on a sunny day.  A young child can die on a hot day in as little as fifteen minutes in a closed car.  Please be super careful with your children!  And be aware of other little children who may have been left behind.  If you see a young child in a closed car, don’t assume that they’ll be okay or their mother will be back in a minute.  Do something!  Get help immediately, break the window – every minute counts and can be a matter of life or death.

    There are always those who can’t imagine how anyone could forget their child, but don’t think that it’s beyond you.  Things happen and people can become distracted.  Some tips to help you remember to make checking for your child a habit (I saw these on the comments below the film) include:

    – put your purse next to or with the strap through the car seat  – for moms I think this is the very best idea

    – strap in a stuffed animal in the front seat next to you every time you travel with a child, as a reminder to check for the child

    – make it a habit after getting out of the car and taking a few steps, to turn around and check if your child is still there

    Please watch the short clip above, and take this message to heart. There are too many horrible deaths in this way every summer and with the increased awareness of us all, we can prevent some of these tragedies.

    Avivah

  • Modifications to our family cheer by the littles 🙂

    The last time we sat in our van as a family and chanted our family cheer that we traditionally said for years before setting our on an outing, I felt sad knowing that family trips like this wouldn’t be taking place any more since we were selling our van (and everything else!), and moving to Israel where we planned to do without a family vehicle.  The older kids probably didn’t mind the passing of this family ritual since they felt self-conscious when friends came on trips were us and at those times they definitely endured our cheer more than enjoyed it.  But it became a part of our family history and was a nice part of our routine even when the older ones felt they’d outgrown it.

    After almost two years, our family resurrected our family cheer last week.  I was taking a walk with five of the boys, and I began to spontaneously chant our cheer, slightly adapting it for our new circumstances.  (I basically lifted this from something in one of Steven Covey’s books.)  Here it is:

    We’re the Werner family,

    Walking (used to be’ driving’) down the street

    When we stick together

    We can’t be beat!

    (Said together enthusiastically three times, the first time followed by ‘Again!’, the second time followed by ‘One more time!”, finishing up with a loud ‘yay!’)

    Tonight I was walking home with the three youngest boys, and ds4 and ds5 began to sing our cheer together.  After they finished, ds5 asked me, “Why do we say we can’t be a beet?  Because we’re not purple?”  It’s so cute when you hear things through their ears!  I explained what the saying ‘we can’t be beat’ means.

    About a half hour later, I heard ds5 chanting to himself the cheer again, finishing with “We can’t be cornflakes!”

    Then he and ds7 started coming up with a few other variations – one that I remember is instead of ‘walking down the street’, they turned it into ‘walking down a treat’, which turned into ‘walking down the chocolate’ – there seems to be a food focus, doesn’t there?!  They were having fun making up their own modifications!

    It’s a really nice feeling to have brought our family cheer back into existence to the enthusiastic participation of our younger set!  Each little thing like this is a step towards reclaiming the cohesive quality of family life that we’ve missed with the kids in school.

    Avivah

  • Guess who’s turning one today?!

    I can hardly believe it’s already been a year since Yirmiyahu was born.  So much has happened and time has gone so fast, and at the same time, I wonder how a year has already gone by?

    It’s been an intense year filled with many challenges, the likes of which I hope I never have to go through again.  But as far as Yirmiyahu himself, he has been a bundle of sweetness that has brought untold joy to us all.

    For my readers, what did you think when I shared that we had received the diagnosis of Trisomy 21 after Yirmiyahu was born?  Did you feel sorry for us, flinch at our bad luck and feel we deserved consolation?

    I didn’t.

    Though it seems most parents are initially devastated by the diagnosis, I wasn’t.  One reason for this is that I didn’t accept for even for one second what the doctors told me to be the final word, as a sentence for what our baby’s life would look like. I knew that they couldn’t predict his future, despite their solemn faces as they delivered the news and told me all the things he’d never be able to do, all the problems he’d have, all the things they were so sure that they knew.  I knew that this baby would have his own journey, just like each of our other children.

    There was so much they didn’t tell me – I imagine that every year the list of things that they didn’t tell me will grow.  They didn’t tell me how our hearts would open wider and become more understanding and accepting of people and their challenges.  They didn’t tell us how our paradigm of the world would shift.  They didn’t tell us how much excitement we’d feel over every step of his development – his first smile, when he rolled over, sat, supported himself on both knees, held a bottle, waved goodbye, said ‘mama’ to me ….

    They told us he’d be mentally retarded, and the social worker reassured us by adding that kids with Down syndrome love to hug and kiss people and don’t know they’re different.  This supposed consolation was worse than the doctors’ gloominess – this is what I had to look forward to?  None of them told us about the sparkle of intelligence and curiosity in his eyes or the depth of love in his heart.  They didn’t tell us how much he’d be able to learn, or stress how critical to his development our emotional investment in him would be.  They didn’t tell us about the impressive accomplishments of so many people with Down syndrome, things that would give parents so much encouragement and hope rather than fill them with discouragement and despair.  And they could never have told us how lucky we were to have this wonderful child become part of our family.  They couldn’t tell us what they didn’t know.

    A baby with Down syndrome has some differences from a typical baby.  And that’s okay. It’s okay to be different.  We’re all different in some ways, and part of our growth as human beings is to widen the circles of those that we accept and include in our lives, even when they don’t look or act just like us.   But a baby with any kind of disability is still much more alike than different from all other babies.  They thrive on our love and acceptance and appreciation.  They have futures that can’t be predicted in advance regardless of their diagnosis or lack of diagnosis.  The future is open to us all and it’s up to each of us to make the most of it.  The doctors forget that.  But we as parents know better.

    There are many milestones ahead of us. Crawling, walking, talking, reading.  There will be times of struggle and worry, times we doubt ourselves and times we are afraid for his future.  Like with all of our children.

    I am so happy and grateful every single day that Yirmiyahu is part of our family.  As he is.  Because as he is, is just perfect.

    Happy birthday, Yirmiyahu!

    Avivah

  • Yirmiyahu on all fours!

    While we’ve been  busy with our kitchen preparations, look who learned how to support himself on all fours!

    on all fours - 11.5 months

    I never really gave much conscious thought to physical stages of development with any of the nine children before Yirmiyahu.  But since he has low muscle tone, having the strength to support himself on all fours is a big milestone!  Yirmiyahu has been rolling and scooting himself forward and backwards and around in circles, but being able to be on all fours is the first step to creeping (that’s the official term for crawling on all fours).  It’s such a gift to have the opportunity to be aware of and appreciative of each stage.

    It’s amazing how exciting something so seemingly small can be.

    "Wait, aren't you supposed to pick me up now?"
    “Wait, aren’t you supposed to pick me up now?”
    "What if I make cute faces at you? Then will you pick me up?"
    “What if I make cute faces at you? Then will you pick me up?”
    "Read my body language - pick me up!!"
    “Come on, you know you want to!  Pick me up!!”

    Sorry, no more pics after that – he got scooped right up for a big hug!  There’s not much tolerance around here for leaving cute babies alone!

    Avivah

  • Speech and communication assessment for Yirmiyahu

    This past Thursday was my last day at Shalva in Jerusalem, something that I had very mixed feelings about.  I don’t enjoy the long travel time to get to Jerusalem, but once I’m there I enjoy it so much.  The therapists are so encouraging and warm, about me as a mother and about Yirmiyahu.  It’s nice to be with other moms with babies with T21, and it’s just overall a really warm environment.

    Yirmiyahu (11 mo) in Shalva's sensory room
    Yirmiyahu (11 mo) in Shalva’s sensory room
    You should see how much he loves this when it has bubble and lights at the same time!
    You should see this when it has bubble and lights at the same time!

    Then there’s the local child development center, where Yirmiyahu goes for weekly (soon to be twice a week) therapy.  As appreciative as I am for the services being offered locally, the environment is really different.  Here’s an example.  This past Thursday, the speech therapist at Shalva and I were discussing the feeding issues with Yirmiyahu.  I mentioned that I started giving him Chewy Tubes to chew on, and the therapist exclaimed appreciatively and impressed, “Wow!  You have everything!”  She’s told me a number of times what a great mom I am and appreciates the time and energy I put into researching options to help Yirmiyahu.

    Now here’s how the same conversation would go at the child development center.  I mention the feeding difficulties and tell her I gave him Chewy Tubes to gnaw on.  She would say (we didn’t have this conversation but it’s been exactly the same in every conversation): “What is that?”  I explain. “What makes you think that’s a good idea?”  I explain.  She asks me, “Did someone recommend this or did you just decide on your own to do this?”  Sometimes she just says, ‘hmm’, and sometimes she tells me the research doesn’t support whatever it is I’m talking about.  You get the idea.  It’s just a very different kind of conversation in the two places.  In one I end up feeling appreciated and in the other I feel defensive and almost attacked.

    Today I had an appointment at the child development center and though our regular physical therapist wasn’t able to be there today, the speech therapist already scheduled to join our session was.  I’ve gotten used to a certain kind of attitude though I don’t like it, so today was a really nice surprise.  Even a few minutes into our meeting, I already had a good sense of rapport and warmth with her.

    Then we had the assessment, which was a total pleasure. She began by asking me to tell her about Yirmiyahu, so what could I say?  Except the truth, that he’s amazingly cute and communicative and intelligent.  I know, you’re not supposed to say that a baby with T21 is intelligent because the traditional medical model tells parents that these kids are born mentally retarded which is a total lie and sorry, I have to rant for a minute and say these doctors are going to be held accountable in some lifetime for the stunted potential of all the children whose parents treated like them they were retarded as a result of what they were told.  I just spoke to a mother like this a few days ago and I thank God that I happened to meet her and give her some hope because after speaking to the doctors, she had absolutely none and having a more realistic and hopeful picture will change the quality of her life and her baby’s life.

    Anyway, back to me and the therapist.  I’m a straightforward person so despite knowing that people will think I’m in denial or living in a dream world, I tell her the truth, that he’s very bright.  She asked me, “Really, you think he’s intelligent?”  I tell her, ‘Absolutely, and very attentive, aware and curious.’

    Yirmiyahu gazing at his sister, mesmerized by her flute playing
    Yirmiyahu gazing at his sister, mesmerized by her flute playing
    Loving his sister's flute!
    Loving the full body musical experience!

    And guess what?  Throughout her assessment she kept commenting spontaneously not just about his cuteness, but about how curious and aware and attentive he is.  At the end, she told me that his communication is very good, specifying all the ways she noticed this. I asked her, “Do you mean for children with T21, or for typical children?”  And she said that his communication skills are on the same level as a typical infant, and that she can’t find a single area of concern.  The feedback at the child development center tends to be lukewarm, and meeting this therapist and having this feedback was really a very nice shift.

    I’m hopeful that we will have more of these kind of interactions as time goes on….but it was really a poignant and sad feeling to say goodbye to the wonderful staff at Shalva where this was typical rather than unusual.

    Avivah

  • Eleven months – some Yirmiyahu cuteness to share

    It’s impossible for me to tell you how much happiness Yirmiyahu has brought to our family since he was born eleven months ago, or to figure out how so much love and light can shine out of one little body.  All of his siblings love holding and playing with him, from the oldest to the youngest.  Here are some pictures in honor of his eleven month birthday (that’s just an excuse to show him off, you know :)).

    Yirmi snacking on tissue
    Fun to play with, good to taste!

     

    Our family summer 2013 007

    My Mommy said she wishes I would enjoy eating the food she gives me as much as I liked this!  
    Once Yirmiyahu learned to sit us, ds7 decided it was time to teach him to play ball
    Once Yirmiyahu learned to sit us, ds7 decided it was time to teach him to play ball
    Yirmi, happy with ds14
    Yirmi, chilling with ds14
    Super flexible - who knew how fun feet could be??
    I’m super flexible- who knew how fun feet could be??

     

    At ds5's birthday party at kindergarten - having fun watching the action
    At ds5’s birthday party at kindergarten – having fun watching the action
    On the way home from the party with ds4
    On the way home from the party with ds4

     

     

    I didn't get a goody bag like ds4 but I'm happy anyway.
    I didn’t get a goody bag like ds4 but I’m happy anyway.
    Ds7 reading to Yirmiyahu
    Ds7 reading to Yirmiyahu
    Yirmi getting involved in story
    Yirmi getting involved in story
    "Hmm, this is interesting."
    “Hmm, this is interesting.”
    "I love when Eliyahu reads to me!"
    “I love when my big brother reads to me!”

    Avivah