Monthly Archives: January 2017

A baby boy with Trisomy 21 is available – will we be his new family?

parenting, Trisomy 21

Last week I shared that our application for special needs foster care was approved but that we’d have to wait a few months until we attended a two day training in the late spring before we’d be allowed to bring a baby home.  So I let you know that our fostering will likely be on hold for a number of months.

At the end of the same day I wrote my post, I got a call from the placement social worker.  She told me there is a baby who matches our profile and she asked us to come in right away the next morning to discuss it!  I asked for some details but she refused to tell me anything – she said she can only tell me in the office as part of an official meeting.

Dh and I got there, read through the file and agreed we would theoretically be willing to bring the baby into our family.  The next step is to arrange for us to meet the biological parents and see if we are all compatible.  (This case is almost identical to the situation with Baby M except that this time everything is going through legal channels; my concern is the same now as it was then – that our family won’t be seen as a match by the biological parents since we aren’t chassidic.)  Since the baby is almost 5 weeks old, is still in the hospital but has been medically approved to be released, we were told his placement is a priority.

After five days, we’re still waiting to hear about if there will be a meeting set up with the baby’s parents.  (The parents were given our names by their social worker so they can ‘look into us’.)  Dh will be starting a new job in the beginning of February and at the meeting I told the social worker that once he begins, it will be a while until we will have the flexibility to come in for meetings and appointments.

(Each time there is a baby available that you might be a match for, you have to go in for a meeting to read the file.  And then another meeting on another day to meet the parents.  Then another meeting or two on yet another day to meet the baby and doctors.  This is in addition to all the meetings we had with the social worker during the application process.)

There are two days left until the end of the month!  Will they be in touch with us before then?  Is it possible for things to move that fast?  I really can’t even begin to guess what direction this will go in.  I know how I would like this to work out, but I also know that G-d is better than I am at working things out perfectly.  🙂

gds timing

The day after we were called in I was feeling quite edgy because of the uncertainty, waiting to hear that a meeting was scheduled.  I just wanted some definite detail to hold onto instead of all this misty nothingness.  I hardly slept that night and when I woke up it was with a terrible headache that stayed with me for hours.

Somehow I was able to recenter myself and just say, okay, it will be what it will be.  Maybe it will happen, maybe it won’t.  Maybe it will happen at the very last moment and maybe it will be a few months from now with a different baby.  Maybe it will never happen.  It’s a good thing that I was able to do that because that was a few days ago and my anxiety level would have been sky high by now if I hadn’t!

On yet another related note, this evening I received a forward from a blog reader about a baby with DS whose family is seeking a foster family for him.  Even though we’re supposed to be on the brink of meeting with these other parents, I responded to the email because I believe if something comes your way, then G-d sent it to you for some reason.  It might not be the reason that I think or hope it comes to me, but there’s always some reason!

So here I am, living in the moment but at the same time wanting to keep you in the loop. 🙂

Avivah

Our foster care paperwork – we’re approved but …

parenting, Trisomy 21

A couple of weeks ago I got a call from the social worker who is responsible for our foster care file.  She apologized for delay in processing our paperwork, and said that the supervisor was requesting more information about us after learning that Yirmi (age 4) is being homeschooled.

Homeschooling isn’t a common choice in Israel and hearing Yirmi isn’t in a school framework triggered the supervisor to look extra closely at our case.  She wanted to know: have we ever homeschooled another child, if so, who, why, and how long.  They made additional inquiries beyond the standard application – they wanted to know if he is being taken to the well baby clinic for checkups and to the child development center for therapies, and requested additional medical references to speak to (in addition to those references who are usually requested whom they had already spoken with).

After a long conversation in which I provided all the additional information that was requested as well as a conversation with our pediatrician (who when pressed for a response if there’s something suspicious since we don’t take Yirmi to the child development center for therapies said, ‘What don’t you understand?  She’s the best mother ever and I would want to be a child in her home!’) , our file has now been approved.

So what happens now?  Is it imminent in the near future that we’ll be welcoming a new child into our family?  It doesn’t seem like that, since we were told we’ll need to attend a two day foster care workshop before they will let us bring a child home – and the next workshop we can attend won’t be earlier than the end of April.  So unless the agency decides there’s a baby who needs a home and is willing to let us defer attendance of this workshop until after we foster a baby, we’ll be waiting for a while.

waiting

(Not all foster care agencies have this requirement – a friend who does foster care in a different part of the country was surprised by this requirement, since neither she nor her friends who do foster care had to do this for their agency. )

I feel very at peace with this situation as it is.  We’ve done our part and if and when there’s a need for our help, it will happen at that time and only at that time.  I’m not trying to second guess G-d’s plans and timing!  When something changes, I’ll be sure to keep you posted!

Avivah

When child doesn’t want to do something – when to push and when to back off

parenting,

It’s been almost two years since we moved from Karmiel in northern Israel; last week we went back for a visit for the first time!

My husband and I went for the bar mitzva of a close friend’s son, together with the seven youngest kids (ds18 and down).  It was so, so, so lovely.  Karmiel is a beautiful place with wonderful people, and we really enjoyed being back there.

At the same time, being there reaffirmed for us that moving to a bigger community was really the right decision for our family.  One of the benefits of living in a much larger community is that there are many more resources.  There are a plethora of extracurricular activities here and for me that’s important because it expands the social and learning opportunities available for our homeschooled kids.

Ds10 just started horseback riding lessons – in Karmiel this was only an option if you had a car to get your child to the stables that were not accessible by public transportation (which we didn’t – and still don’t – have). Locally there is a van that takes the kids there and back, making this doable for us.  He’s only had two lessons so far but he already loves it!

Ds9 is very athletic and expressed an interest in gymnastics early in the fall.  I thought that was a great idea – he has a lot of energy and I’m a big believer in giving kids opportunities to use that energy in a healthy way rather than suppress it or shame them for having so much energy!  But the group I found wasn’t what he had in mind.

Last week I learned about a different group that and they were willing to allow him to come for a trial lesson.  This was a mixture of floor exercises and acrobatics, and I was really glad to have found something I thought would be a perfect fit for ds!

However, ds9 wasn’t as enthusiastic as I expected him to be when I told him about the class.  Not enthusiastic at all.  Actually, he was completely resistant.  He said he didn’t want to go into a class where everyone else has been meeting for months, he was nervous about what kind of kids would be there, and in general didn’t feel comfortable with the idea.

So what to do?  To push him because I know he’ll love it once he does it, or respect that he says he doesn’t want to?

Both.

There’s a fine line between encouraging your kids to do something outside of their comfort zone, pushing too hard or not encouraging them enough.  It’s a bit of an art to know when to push more or when to back off!

The first place to begin is to really listen to your child so you understand what his concerns are.  Give him the chance to fully express himself and then reflect back what you’ve heard. Don’t rush to explain to him why what he’s saying isn’t valid; for example, telling him how he’ll love the new activity once he does it.  It’s not until your child feels heard that he can hear you.  When a child feels heard and understood, he often has much less of a need to maintain his position and is more open to considering something else.

I listened to dd9 tell me his concerns.  I told him I could understand why he would be nervous, and shared that sometimes new situations makes me nervous , too.  Later I shared that for me, it’s the beginning that is the hardest and then it gets easier and easier the more I do something.   Rather than tell him what to do, I tried to keep the focus on my experience, allowing him to draw conclusions if he wanted to but I didn’t actively draw any connection between my experiences and his.

I told him that I only would want him to do this activity if he thought he would enjoy it, and if he didn’t think it would be fun, there was no reason to go.  I really meant that.  I wasn’t trying to manipulate him in any way.  If he didn’t want to go now but later wanted to try it, he could let me know and I’d try to facilitate that.

I also let him know that the trial lesson had no long term commitment attached to it, and he could go once and never go again.  He asked if i would sit in the class with him if he went, and I told him if it was allowed I’d be happy to do that. He wavered, but then firmly told me he didn’t want to do it.  That was fine.

With no pressure on him to make a decision, a short time later he asked me a few more questions and I saw him thinking about it.  An hour after the first conversation, he came over to me and said he wanted to try it out if I would stay with him in the first class.  On our way there, he told me his stomach felt jiggly; I shared with him that my stomach always felt funny inside on the first day of school and other ‘firsts’.  Kids don’t need you to make the discomforts of life go away, but they do want to be validated.

When we got there I introduced him to the instructor, and let the teacher know that ds was a bit nervous that he wouldn’t know how to do the things that others had been learning for months until then.  The instructor said new students were joining regularly; in fact there were two other boys trying out that evening!

Knowing who the teacher was and hearing the teacher’s response was reassuring for ds.  It helped him feel more prepared for a new situation – if you can it’s helpful to give kids a chance to familiarize themselves in a new situation before they need to participate.  I encouraged him to watch the last ten minutes of the class of younger boys before his class began, to give him a chance to see what kind of activities they did, to watch what kind of activities the instructor did and just to get a visual comfort with the room.

The class began and within five minutes his eyes were glowing with happiness.  As soon as the class ended, he enthusiastically told me he wants to sign up for the rest of the year.  This was less than four hours after I first let him know about the class and he had adamantly insisted he didn’t want to go.

boy-doing-a-somersault

I shared all the details of how I dealt with this situation because it’s the details that helped him move past his fear and discomfort to a place of being willing to try something new.  I didn’t force him to do anything; I didn’t try to convince him how fun it would be.  I repeatedly listened to him share how he felt, validated it and only shared additional feedback after he felt heard.

This is how I handle resistance of this kind with my kids.  Fear sometimes gets in the way of us all trying new things that we might benefit from, so I try to encourage our children to move past their fear.  Not by pushing them to burst out of their comfort zones, by by encouraging them to gently stretch the walls of their comfort zones.

Does every child always go along with my suggestions?  No.  And I wouldn’t expect them to.  Sometimes the response makes it clear that the child really isn’t interested, is too intimidated or has too much fear to be able to go into a new situation.  In cases like that, I put it aside and recognize that we can come back to it at a later stage.  ‘No’ right now isn’t ‘no’ forever.

Avivah

How and why I use flashcards to support language development

homeschooling, parenting, Trisomy 21

A favorite activity of our four year old, one that he requests at least once a day is…. flashcards.

Yes, really.  Flashcards.  I know, you wouldn’t expect flashcards to be so compelling, right? 🙂 But he really likes them!

I started using these when Yirmi was 14 months old.  I began by printing out words and pictures from the Brill Kids Little Reader computer program; each card is the size of half of an A4 sheet of paper.  One side has the word printed on it in a large font, the other side has a color illustration of the word.

20170117_063857-2

20170117_063850-2

Over time I printed out a number of these sets and laminated them.  Sets include categories like foods, colors, transportation, nature, seasons, parts of the body, and household items.  Ideally I would have used these systematically several times a day, using one set a week and switching out an old word for a new word each day.  Sometimes I did more and sometimes I did less, and I reminded myself that whatever I did was of value.  I found it easiest for me to do first thing in the day since it was before I got distracted with with lots of other things.

Our basket of flashcards
Our basket of flashcards

As a very relaxed homeschooler, it might seem strange that I would embrace something so seemingly formal as a learning tool.  However, if we approach something as a fun and enjoyable activity without the heavy weight of expectations, kids will often perceive the activity as fun and enjoyable – regardless of how ‘schooly’ it might seem.

I use flashcards as a tool to teach reading and support language development, language comprehension and speech development.  The brain grows from use!  Stimulation and input are very important to a child.  Don’t get caught up in looking for visible results – if you’re sharing quality information, it’s beneficial whether you see tangible results or not!   (I don’t know what Yirmi’s reading ability is since I don’t test him, but there’s no question his receptive language is excellent.)

When I introduce new words, I explain what the word means and how it is used.  So he can tell you, for example, that a ‘stethoscope’ is used to listen to your heart.  Usually the words are nouns or verbs and are pretty easy to explain; some are harder concepts like ‘hibernation’, ‘relaxation’ and ‘humidity’ but I do my best. 🙂

Once he’s familiar with the words, I don’t explain them each time we look at the card.  I read the the word printed on the front, then turn it over, saying the word again while looking at the picture, then turn it back to the word and reading the word out loud again.  It’s a fairly quick process.

small flashcardsAs Yirmi got older, we moved onto cards that were smaller, the size of standard index cards.  In the summer I finally shifted away from using printed picture cards and now the new cards I prepare only have the word handwritten on one side.

While I considered this option from the beginning, I felt it would be more enjoyable and better for comprehension to have the pictures on the back side of the card.  The only downside of that approach was that it took much more time to prepare the cards and I didn’t prepare nearly as many as I would have without needing to go to that effort – we have only about 300 or so cards with pictures.

What I do now is super simple.  Using a dark marker, I write the word in large print on a small white index card.  Recently I went through a children’s book he enjoys and picked out words that we don’t yet have in our sets; preparing the new set of 32 cards took about fifteen minutes!

Most days we ‘do words’, as we call it, once a day.  I’ve kept it a relaxed and positive experience both of us.  For Yirmi,  it means I follow his lead as to which group of words he wants to read together and stop before he’s ready to stop.  I want to keep it fun; I don’t quiz him and I don’t turn it into something he’s ‘supposed’ to do.  For me keeping it relaxed means letting go of the voices that tell me I’m not doing it right by not doing it more often or in a certain order.  Just like I tell you that it’s important to let go of beating yourself up with unrealistic expectations, that’s what I tell myself!

Yirmi has recently been repeating the words as I flash them, so it’s been a great speech opportunity (he has an expressive speech delay called apraxia).  I now slow down as I read the word and ennunciate the word clearly and slowly, techniques we’ve all picked up from the Gemiini video modeling program that he uses daily for speech.

We enjoy reading flashcards together, snuggled up on the couch or in my bed – it’s nice that we can integrate something so beneficial so easily!

Avivah

Burnout, too many expectations and not enough self-love

parenting, personal development, ,

I constantly hear about burnout, both in  my professional life working with parents and in my social life.

There is so much expectation, so much strain and anxiety and so much shame that people are feel about not  measuring up, not being able to do it all.

Underlying all the various ways this issue is expressed, I’ve noticed an underlying self-imposed urgency.  ‘It’s not self imposed,’ you may protest.  I then hear how these things really are so so SO important, with the sentiment expressed that if the speaker doesn’t do them, something bad is going to happen.

What is going to happen if you don’t do this particular thing for your child?  When I suggest that a lot of the pressure the parent is feeling might be unnecessary and excessive, the response is usually “But don’t kids need to…go to sleep at a given time, brush their teeth, eat the right amount of nutritious foods, get to school on time, do their homework???”  The list of what responsible parents ‘should‘ do doesn’t end.

And the pressure that parents put on themselves doesn’t end either.

Could we possibly  learn to lighten up and let go of some of that tense perfectionism that is rooted in fear?  Can we trust ourselves and trust our kids instead of a checklist?  Really, we’re not going to fail them or ourselves if we don’t do this long list of things on a regular basis.  If we do the things that really matter – which comes down to providing a nurturing, loving home for our children – they’re going to be okay.  They really are.

Not because you’re the perfect mother.  Not because you line up all your ducks in a row and manage to execute flawlessly every day.  No.  You don’t and you can’t.  And you don’t need to.

Can you embrace loving yourself as you are right  now?  Right now, with all of your imperfections?

I’ll tell you something that might be intuitive.  Or it might be counterintuitive.

Do you want to be a more effective parent?  Do you want to be more loving, more effective, more emotionally and physically present?  Try treating yourself with kindness and compassion, with appreciation for your efforts and forgiveness for your lapses.

The more love you show to yourself, the easier it is to love those around you.  When you learn to nurture yourself appropriately, it becomes much easier to nurture your children.  When you stop continually raising the bar so high for yourself, accept your mistakes and appreciate your good intents, it’s natural to do the same for those around you.

We are so harsh to ourselves.  So, so harsh.  Do you think you’re being responsible to push yourself more, to tell yourself why you need to do more, to be more?  No, it’s not responsible.  It’s harsh.

Listen to me.  There is nothing more valuable to your children than being raised by a mother who loves and accepts herself.  Do you know how powerful it is to be loved unconditionally?  Most of us don’t and we don’t know how to give that to our children.  But it’s not too late – because you can give yourself that gift.

Start with small ways to love yourself.  Go to bed earlier.  Take a ten minute shower instead of a five cupofselfloveminute shower.  Sit and enjoy your cup of herbal tea.  Little things that reflect the kindness and compassion that you deserve.

Allow yourself to slow down or do less without feeling guilty about it, without feeling defensive or apologetic, without the habitual self-shaming of telling yourself you really should be doing something else.  Something more valuable, more important than taking care of yourself.

There’s not much that’s more important than appropriately taking care of yourself.  Your capacity to give to others is rooted in the care you take of yourself, and the love you learn to give yourself will flow out to those around you.

For today, lovingly put yourself first.  You deserve it, and your family deserves it.

Avivah

Understanding the question that wasn’t asked

parenting, Trisomy 21

Today I read a letter to the editor in Mishpacha magazine (Dec. 7 issue) regarding a Q&A session at the Agudah Convention.  The letter writer admits to being confused by the answers of the panelists to the questions presented – again and again the answers didn’t seem to specifically address the question that was asked.

For example, when asked about letting a child go to a Super Bowl party, the response was about creating warmth, love and joy in the family.  The panelists didn’t seem in touch with the questioners.

He went on to say that he was later struck by the realization that it wasn’t the panelists who didn’t understand the question.  They had deep insight into what the core issues were that were behind the questions and their answers reflected that understanding.  He stated the problem was the questioners didn’t understand their own problems.

Not long ago the parent of a young child with Trisomy 21 called me.  She had questions about how to further her child’s development, and wanted to get specifics on my curriculum for ds4.  I told her I’d be happy to share my perspective with her but wanted her to first understand that my approach is one of integration, and doesn’t look ‘schooly’; I don’t have a curriculum for him.  She said she’d still be interested in coming to visit with her son to speak with me.

She brought her cute little guy  over and we settled in to chat.  After about an hour, she said in frustration, “I see your son is doing well but you’re not telling me anything specifically that would be helpful.”  I was nonplussed for a moment.

For an hour I had shared with her books I read, taken them out and offered to loan them to her, shown her Yirmi’s flashcards and explained why and how we use them, talked about how we work on language every day, explained the process of physical development and supporting core strength before encouraging more advanced activities.  I talked about mediating the world around one’s child constantly, explaining, describing, engaging him.

And most importantly I had again and again stressed that your child and his disability isn’t a problem.  It simply is.  Acceptance is so important.  The nonverbal message to your child is that he is perfect as he is while supporting his unique needs appropriately.  This is a huge, huge attitude shift that a minority of parents are able to embrace but I think is critical.

After a pause, I told her I had shared many specifics but since we defined the problem differently, she wasn’t recognizing that I had answered her questions in detail because it wasn’t what she was expecting to hear.  I suggested she continue to follow the traditional therapy model since she seemed more comfortable with that.  I stressed that different things work for different people and while I share what works for us, what is important is that each family finds an approach that is right for them.

She stayed another half hour and before leaving surprised me by thanking me and telling me that my approach was empowering and reassuring! She called me a week or two later and thanked me again, telling me it had given her hope and perspective, and was very calming.   I was so glad she was able to absorb some of what I was really saying – a paradigm shift can take a lot of time to digest and integrate.  It took me many months to come to fully embrace and understand the application of the ideas that I shared with her, and I continue to come back to it regularly and rethink how it applies in different situations.

When the panelists answered the question about attending ballgames with suggestions for strengthening the home environment, it was because they understood that kids who always want to be somewhere else is the problem, and the solution isn’t to say, “Yes, go to the game” or “No, don’t take them to the game.”  The solution is to create a home environment that is warm and loving, so your home is a place your child wants to be!

When I was asked about how to get a child to walk, talk and what therapies to purse, I stressed the importance of believing in your child.  Is your child okay as he is or do you think you need to fix him?  What unspoken beliefs are you raising him with?  The way you view your child and his disability can be part of the problem or part of the solution.

A child with Trisomy 21 is born into a world that has an abortion rate for children like him of over 90% (and quickly rising with the advancement of earlier and more accurate testing) – the birth of a baby with T21 is widely seen as a tragedy.  He is surrounded by the non-verbal message that he isn’t enough, that he is defective.  It’s a world of judgment and this judgement is the reality that our children face almost every time someone looks at them and recognizes their diagnosis by their features.

In our home, I want the formative messages to affirm my son’s worth and value, to build a sense in him of his wonderfulness! This is what I consider to be the critical foundation that all further supportive actions are based on.

Avivah