Rite Of Passage: I Hope You Dance đźŽ¶


Recently, we had a rite of passage. Although only Raizel had a graduation ceremony, both Yaffa and Raizel graduated from grade 8. In September, they will start high school.

Raizel was very excited! In honor of her graduation, I bought a new hair iron for her and straightened her hair. Oh my – was she so happy! A curly girl, Raizel loves to have her hair straightened.

straightening Raizel’s hair
My husband, however, was ambivalent about the graduation ceremony. But, not for the reasons that one might expect. It was not the wistfulness of watching one’s children grow up nor the nostalgia over the end of childhood.

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For us, the graduation ceremony was bittersweet. It was the reminder that as parents of special needs children, our path through life is different than other parents. Our children grow older, but they do not grow up the same way that other children do.

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When Raizel was in yeshiva, there were many social festivities and events to celebrate this rite of passage. Raizel enjoyed every one of them! My husband never complained about the expense, or distraction from academics that they entailed.

But, now in public school,  Raizel could not graduate with her classmates of the past 4 years.

Some of this was due to the decisions we made. In theory, we  could have let her finish out the year, as the school suggested.

But, we did not. Her needs were not being met, and the lack of attention was affecting other areas of her life.

I am grateful that she was happy about graduation with her new classmates. It’s a sign of resilience. As her mother, I want Raizel to adjust to change with grace and equanimity.
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And, although the circumstances changed, Raizel was still able to experience a graduation ceremony. It was different, and not what we planned, but equally good. 


This is one of my favorite songs. I feel that it captures some of the desires I wish for our daughters as they grow up.

My blessings for you dear Raizel and Yaffa is that you will be able to savor and appreciate all the gifts that you have been given. Always believe in yourself. May you always have hope for the future.


I pray that you will have faith in God and trust that He is always taking care of you. You are never alone.

Adon Olam
We love you!

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Congratulations Raizel and Yaffa!🎉

 

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Educational Challenges With Special Needs Children 

Educational Challenges With Special Needs Children

Today, I had a conversation with a very dear friend, catching her up to all our news. I told her that Raizel is no longer in yeshiva. In fact, there was no local yeshiva that was even willing to accept her as a student for next year.

Often, I get criticism for this decision. Some members of my family, and good friends will tell me that I should have lied so that she could have been accepted SOMEWHERE.

This friend told me that better she should be in a class with lower functioning children than in public school. She said, “she will lose her connection to our faith.”

But, what will she think about herself if she is placed in a class with children who are not her peers and lower functioning? What would that do to her self-esteem and identity?

To my friend, and many others, it is better to be practicing our faith and integrated into the community, rather than to learn how to function at one’s maximum level of potential.


Other people I know, put themselves into huge debt, in order to finance a religious program. A religious program that in our case would not even meet our daughters’ needs and would require additional supplementation and expense.

I have learned though experience that everyone needs to decide for themselves what is best for their family. We all make choices in our life. Some of them will be good, and others will have consequences that we could not foresee. There is no one size fits all.


My husband and I made the difficult decision to place Raizel in a program that will hopefully maximize her ability to function in life, rather than feel socially comfortable.


Wrapping children in a cocoon will work in the short run. Eventually , however, all children grow up. At some point, every person needs to decide who they are and what they believe in.

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As parents, I believe that our greatest challenge is to teach our children how to function in life, be discerning and to think critically and independently. I prefer for Raizel to face these challenges while we are still able to have some influence over her, than in some unknown future date.

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When we spoke to many Rabbis about our dilemma, the advice we were given over and over again was, “you have to build a vessel (k’lee) for the Torah. Without a proper vessel, it will not matter how much Torah you pour in. It will be like a sieve, and just poured down the drain.”

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There are no easy answers. Every day, I pray and ask God to guide me and show me the correct path to travel. I hope and pray that I do what is right and pleasing in His eyes.

Reference:

I found this online and I thought others might enjoy it too:

prayer for one’s children

Here are the 2 links that I found this prayer on:

https://artscroll.com/images/siteimages/prayer.pdf

https://artscroll.files.wordpress.com/2010/05/prayer.pdf

The Power Of Prayer 


I have been known to joke that sometimes the only exercise I get is pushing my luck, and carrying too much weight on my shoulders. But, sometimes, the burden can be too great to carry.

Earlier this week, I had a mini-meltdown. I felt I was shouldering too much responsibility for managing the household and caring for the girls. I had very firm words with my husband and Raizel.

The resolution was that Raizel would start to take responsibility for washing the dishes and emptying out the dishwasher.

In the meantime, I wrote up a schedule for myself and shuttered as to how I could possibly do it all. Clearly, I needed help.

So, yesterday, on my way to work, I found myself driving behind a car with a vanity plate which said, “GODFIRST.” I was so struck by the message that I took a picture of it:


The whole day, I kept thinking about “GODFIRST.” What did it mean? How could I put God first?

And so, I began to have a conversation with God. Out loud, I spoke to God, and I asked him to help me. I told Him how everything was too much for me. I needed Him to carry me and find the solution for my difficulties.


Well, this is what I came home to:


A beautiful, clean kitchen!

When I came home, I texted Jay,

Did you clean up??? Wow! Thank you! That was true love.

Raizel and Jay together cleaned up the kitchen for me. I felt that was one of the most beautiful and loving things that my husband could have ever done.

I feel so grateful to Hashem (God). He took care of me. It brought tears to my eyes.


When we put God first, and really talk to Him, God listens. And, we never know what the solution will be. We have to place God before us always.

The Birthday Party

The Birthday Party

 

The Birthday Party

This week I had one of the most moving moments in my professional life.

I work in Geriatric Psychiatry. As part of my job, I facilitate 2 groups on Positive Aging.

Last week, one group began with a patient sharing that it was his son’s birthday that day.

What emerged was that this was his anniversary of becoming a father. A seminal moment in anyone’s life.

So, I decided to do the group on “what do birthdays mean to you?” And on, “how do you celebrate your  birthday now, compared to when you were younger?”

 

Aging & Birthdays

 

Then, I added to the mix one of my favorite questions, “how old are you chronologically?” And, “how old do you feel inside?”

 

What does it mean to be old?

It was a fascinating discussion.

Many of the patients shared that birthdays were not that important to them.

As they are aging, the group members shared that they are challenged by many health conditions.

Consequently, the patients feel more and more that they appreciate the gift of being alive each and every day.

Everyday is special, not just their birthdays.

Many in the group also shared that as children, they did not have a lot of material wealth. So, gifts and parties were not common.

But, one particular patient, Bob, shared that he never had a birthday party. No one in his family ever acknowledged or celebrated his birthday.

Although all the other patients voiced that birthdays were not as important to them as celebrating life — I think the thought that someone NEVER had a birthday party really touched them.

One patient, Henri,  responded to Bob, “we need to celebrate your birthday. Next week, I am going to bring you a cake!”

Henri also asked me to remind him about his commitment when I saw him during the following week.

Although I did remind him, just in case, I brought in cookies, happy birthday napkins, soda and other paper goods to work for the group as a backup.

It turned out to not be necessary.

When I walked into the group room, I saw that everyone in the group had brought in something to celebrate Bob’s birthday!

The group bought a card, 2 gifts, drinks and a birthday cake! They even bought a candle and sang “happy birthday” to him.

Since birthdays are about sharing good wishes, I also asked my patients, “if you could have anything you want, what would you wish for?

Here is a picture of their responses:

 

If you could have anything you want, what would you wish for?

It gave the patients great pleasure to give and support each other.

Truly, this was a touching and heartwarming moment!

The funny thing was, I told this story to my friend, Adelle, on my way home from work. Adelle then said, “you know, today is my birthday too!” An example of positive aging, Adelle proudly turned 70 on the day of Bob’s birthday party.

And now, today happens to be my birthday as well. I do not publicly admit my age. But, inside, I tell everyone that I am 87.

(I then remind them to tell me “you look great for your age!”)

In the Jewish tradition, a birthday is a propitious day for giving blessings to other people:

May we all be blessed with love, health, material satisfaction, friendship and peace, and many happy birthdays.

Many blessings,

Carol

*In order to protect the privacy of my family, friends and patients, please be aware that their names and personal identifiers have been changed.

Making A Place For Jewish Children With Special Needs & The “Almost Normal” Gray Zone

  
  

Not all of my posts are going to be deep. But, not all challenges of raising children with special needs are emotionally complex. Some just require opportunity, planning and execution.

The impetus for this post was a conversation that I had this morning with a mother of a boy in Raizel’s grade, Barak.

In general, the educational needs of children with special needs are variable. They require individualized instruction and each child’s individual level of capacity is unique. 

There are children like Yaffa, who have disabilities that are visible and distinct. These children are more likely to have more basic educational needs. 

My goal for Yaffa is to give her an opportunity to learn about our faith at the level she is capable. My second goal is to give her a love of our traditions and a sense of emotional connection to our community. 

Educationally, in some ways, Yaffa is less challenging, than her “higher functioning” sister. A loving and delightful child, Yaffa is not a behavioral challenge.

Barak and Raizel look neuro-typical, and “almost pass” as “normal.”  They have special needs that prevent them from learning in a regular classroom, and they require additional support. 

But, they can learn. 

In Raizel’s case, she requires behavioral support and adaptations to accommodate her different learning style.

I call this “The Challenge Of The “Almost Normal” Gray Zone.”

  

Making a place for Jewish children with special needs in the “almost normal” gray zone is very difficult, for a multitude of reasons.  

I am in the “pre contemplative stage.” I would love to create a Jewish Education and Socialization Network for these “almost normal” children with special needs in our community.

My idea is to run it based on the homeschooling model of education. 

Each family creates their own curriculum for their child’s religious educational needs. 

However, my goal is to have parents pool their resources and have these children learn together in small groups. 

By learning together after their school day, these children could connect and socialize with each other. Indirectly, they could create a small sub community. 

I see this post as a possible social network opportunity. Perhaps it will enable me to find other like-minded parents in similar situations? Perhaps this post will be the beginning of creating a social-learning network community for other Jewish children with special needs who go to public school by necessity? 

 

We are led in the direction of our intensions. I am hopeful. 

  
  

Looking For The Good

I have been very challenged by Raizel recently. Her behavior at home has been very difficult. This past Shabbat, it reached a crescendo.

Briefly, as a family, we have experienced many changes and stressors in the past year. I think anyone of them would be objectively difficult for anyone.

As I  have shared, recently we made the difficult decision to place Raizel in public school. Now, Raizel no longer attends a yeshiva, like all of the other children in our community.

Thankfully, she is doing better and  more resources are available to meet her needs. But, it is a terrible feeling of rejection — no appropriate local yeshiva even accepted  Raizel for high school.

My husband’s health status has changed significantly in the past year as well. He is not the same person with the same capabilities.   I remind myself daily that I am grateful he is alive.

Due to my husband’s health, we made the difficult decision to sell our house. We are now in the process of downsizing to a smaller and more manageable home. There are lots of moving parts involved, and everything is in a state of transition and flux.

Raizel is not fully aware of herself and how her behavior affects others. What did emerge is that Raizel is clearly suffering from all the changes we are experiencing as a family. It doesn’t excuse her behavior, but I see her as the canary in the coal mine. This was a cry for help.

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So, we decided that every night, we  would write down our 5 G’s.

The 5 G’s is my daily writing exercise that I have developed over the years.  I practice it personally and use professionally with my patients. Since I have started using it, it has made a big difference for me. I have seen a big change with my patients as well. Over time, I have learned how to change my negative thoughts into positive thoughts. And, I can find something good and positive in all people and in every situation. Raizel has agreed to do this exercise with me before bed. So, we are experimenting.

Here are each of the 5 G’s. There are several variations that I have created, but this is what we are doing right now:

 

We write down 3-5 gratitudes every day.

Gratitude
Gratitude

 

Next, we list 1 or 2 things that we did that we are proud of, or that make us feel good about something we accomplished.

Sometimes, I find that my patients sadly struggle to find anything to feel proud of. So, I ask them to list something that they did that day that demonstrates a good or positive quality about themselves.

Growth
Growth

Oddly, it is difficult for Raizel to come up with something that she did well or that she is proud of too. So, I am glad that we are doing this together.

The next 2 pictures are variations of the same thing of looking for the good and appreciating the kindness of other people.

This version is a little simpler for some people to understand:

Good: what was the best or nicest thing today?
Good: what was the best or nicest thing today?

This one has more of a direct connection to the idea of goodness:

 

Looking for the good in others
Looking for the good in others

We do not answer all of the questions. Just one or two. I try to write down 2 things that Raizel did that day that I really like and appreciate. Raizel has to do the same for me.

In the past, I would not tell her that I was doing that. However, I noticed that on her own, she started to do more and more often the very things that I wrote down on my “good eye journal.” It really changed my relationship with her.

I had stopped focusing on including her in my “good eye journal” so I am happy we are doing this together.

I think that looking for the good is very reinforcing, even when the other person doesn’t know what you are doing. When we notice the good, we see more and more good. When we notice the negative, we see more and more negatives. This is a very simple technique with very powerful outcomes.

Glitches & Gains
Glitches & Gains

 

This is also very effective. Rather than focusing on my daily petty annoyances, I try to see and appreciate what is good about even the things that bother me.

Goals: S.M.A.R.T.
Goals: S.M.A.R.T.

With my patients and myself, I try to list daily S.M.A.R.T. goals.

S.M.A.R.T. Goals are: Simple, Measurable, Attainable, Realistic and Timely.

I feel that this creates realistic expectations and sets me up for success. Every day that I feel like I have accomplished my goals helps me to appreciate and validate my successes.

So far we have been doing it for 3 days. Incredibly, Raizel already notices the difference. Raizel said, “I feel happier.”

So, I am hopeful.

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Here is a PDF of just the pictures:

5 G’s pictures 4-14-2016

Coping With Children With Special Needs As They Age

Some people express surprise that I am so open about my children and their challenges. I often wonder, what does that mean?

I am open about my children, because this is my life. This is my reality. I have a choice: I can either accept it and move on, or resist and be stuck.

  
I try not to compare my circumstances to other people. It is very clear to me that I am on a different journey than the general population. I focus daily on being grateful to be a mother and for the blessing of children.

As my girls are growing up, coping with the challenges of raising them is changing too.

There is an expression: “small children, small problems, big children, big problems.”

I remember when Yaffa was a baby, her cardiologist quoted that proverb to me. It sent fear and trepidation into my heart.

When the girls were babies, Yaffa was so sick. Between the feeding tube, the heart surgery, the ear surgeries and frequent illnesses, we were “frequent flyers” at the hospital. I became a nurse because my experience taking care of Yaffa. I feel like her nurse all the time. The thought that these problems could become bigger did not make me happy.

I am not sure that their problems are getting bigger per se, but, they are becoming more complex. 

I have always struggled to find the balance between meeting my daughters’ educational needs with their emotional and spiritual needs.

It is the norm in our community to educate children by sending children to a religious school or yeshiva. These schools are privately funded. The financial costs are high, but the spiritual benefits are incalculable It is seen as the best way to pass on the spiritual traditions of our faith and maintain a strong Jewish identity.

It is more difficult, for many reasons to educate Jewish children with special needs within a yeshiva. So, many Jewish children with special needs attend public schools.

Yaffa’s disabilities are visible and her developmental accomplishments are more predictable. Public school is the best place to address Yaffa’s complex medical and educational needs.

We supplement her Jewish education through summer camps, weekend social activities and a Sunday school program. The people in our community are also wonderful.  We have many volunteers who come to the house to play with her which helps to connect her to the community. For the most part, it works, and we are happy with this arrangement.

Raizel however, is a different challenge. Raizel falls in the gray zone of “almost normal.” Her disabilities are invisible. They are much harder to address. Raizel also has the awareness that she is different, but does not understand why.

For children who have learning disabilities, and/or neurological deficits, it is difficult to understand the world. These children lack the skills to express themselves well, cope with change and be resilient. Coupled with impulsivity, lack of insight, lack of awareness of cause and effect and an inability to self soothe, growing up is hard, and functioning in the world is confusing.

Raizel wants nothing more than to be in yeshiva, participate in summer programs and follow the conventional path of the other children in the community. We are pained by our inability to find an affordable and appropriate yeshiva that will accept her for high school. For this reason, we recently made the difficult decision to withdraw her from yeshiva and put her back in public school. The summer camp, which has an inclusion program for children with special needs, is reluctant to take her back too. They are insisting that we participate in intensive therapy first. And, if the therapy is insufficient, then what?

As her mother, this is very painful. More than anything, I want my children to have a sense of place in this world. I want my daughters to feel connected and cared about by the community. If Raizel is socially ostracized, and unwelcome in the schools and camps, how can she have a solid identity and a sense of belonging? Is Raizel more likely to be accepted outside the community than from within? Are my wants unrealistic?

Other people’s children grow up and become more independent. The path of my children is different. Over time, I see that the gap between my children’s growth and development is getting wider compared to their neuro-typical peers. It is a daily disciple to readjust my expectations and increase my acceptance.

I want so much to prevent pain and suffering for my daughters. And yet, I cannot. Every day, I must remind myself that that God, in His infinite wisdom has a plan for my daughters that is good and better than anything I could imagine. I am not in charge. It is a daily process of letting go of expectations, surrendering to what is and trusting in a benevolent universe.