Rite Of Passage: I Hope You Dance ๐ŸŽถ


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 โ€“ 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 oneโ€™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!๐ŸŽ‰

 

The Power Of Prayerย 


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.

Acceptance and Happiness

Acceptance and Happiness
ื“,ื ื‘ืŸ ื–ื•ืžื ืื•ืžืจ, ืื™ื–ื” ื”ื•ื ื—ื›ื–ื”ืœืžื“ ืžื›ืœ ืื“ื, ืฉื ืืžืจ “ืžื›ืœ ืžืœืžื“ื™ื™, ื”ืฉื›ืœืชื™” (ืชื”ื™ืœื™ื ืงื™ื˜,ืฆื˜). ืื™ื–ื” ื”ื•ื ื’ื™ื‘ื•ืจ–ื”ื›ื•ื‘ืฉ ืืช ื™ืฆืจื•, ืฉื ืืžืจ “ื˜ื•ื‘ ืืจืš ืืคื™ื™ื, ืžื’ื™ื‘ื•ืจ” (ืžืฉืœื™ ื˜ื–,ืœื‘). ืื™ื–ื” ื”ื•ื ืขืฉื™ืจ–ื”ืฉืžื— ื‘ื—ืœืงื•, ืฉื ืืžืจ “ื™ื’ื™ืข ื›ืคื™ืš, ื›ื™ ืชืื›ืœ; ืืฉืจื™ืš, ื•ื˜ื•ื‘ ืœืš” (ืชื”ื™ืœื™ื ืงื›ื—,ื‘): “ืืฉืจื™ืš”, ื‘ืขื•ืœื ื”ื–ื”; “ื•ื˜ื•ื‘ ืœืš”, ืœืขื•ืœื ื”ื‘ื. ืื™ื–ื” ื”ื•ื ืžื›ื•ื‘ื“–ื”ืžื›ื‘ื“ ืืช ื”ื‘ืจื™ื™ื•ืช, ืฉื ืืžืจ “ื›ื™ ืžื›ื‘ื“ื™ื™ ืื›ื‘ื“ ื•ื‘ื•ื–ื™ื™ ื™ื™ืงืœื•” (ืฉืžื•ืืœ ื ื‘,ืœ).

 

I had a fascinating group with the patients in both of my Positive Aging Groups this week. This is what happened in my first group.

 

The group began with patients discussing celebrities in the news. In particular, they talked briefly about a celebrity who changed from being a man into a women.

One patient reported that he read in the newspaper that the woman now regrets her decision.

Patients observed that even when people seem to have everything anyone could want, they are still unhappy and dissatisfied with their lives.

 

In response, I shared with the group an antidotal story about Michelle.

Michelle is a MHA that I worked with in the past. She was born male and changed from Michael to become Michelle. Now in her late 50โ€™s Michelle also regrets her decision to change from a man into a woman.

 

During our shift together, Michelle shared that she was very unhappy as a man and she was so certain that she would be happier if only she was a woman.

Now, 20 years later, Michelle has a different perspective on the source of her mental anguish and pain.

During our conversation, Michelle shared, โ€œI made a mistake. My problem had nothing to do with being a man or a woman or my external apparatus. The real problem was between my ears. I was the problem.โ€

 

Our discussion and the pain that Michelle shared with me that night has stayed with me since then.

Michelle had to come to the realization the hard way that true happiness comes from self-acceptance.


So, I introduced the topic of the group as: how is it possible to feel good about yourself and accept yourself as you are? And, if you could have everything you ever wanted, would that make you happy?

Patients observed that there is nothing outside that can make someone feel good inside. Patients also shared that it is impossible to ever satisfy another personโ€™s needs or all of oneโ€™s wants.

 

As a group, the patients reached the conclusion that happiness is a state of mind that comes from comes from being happy with what you have, not from what you acquire. The goal is to recognize how much you do have and appreciate it and share it with others without over-extending yourself.


The group was very successful and even one of my most cranky patients actually asked if we could extend the time of the group from 1 hour to an hour and a half.

 

The next day I had a similar discussion with my colleagues.

 

The 3 of us are all in the process of moving or relocating. We shared tips on affordable communities that also have good school districts.

 

Then, Mabel, a fourth nurse that we work with joined us.

 

I find Mabel to be a challenging person to work with. Although she is very capable and competent, Mabel loves to be the center of attention and sees herself as the hardest working and the most burdened nurse at our work site.

I find the role that she has assigned herself to be odd. Mostly, because it is not true. In my opinion, we all work hard.

 

Generally, I alternate between ignoring her snide comments, or soothing her by validating her with a โ€œthere-thereโ€ or โ€œOh yes, you are so hard workingโ€ฆ..โ€

 

Another difficulty that I have with Mabel, is that I find her snidely anti-Semitic. She will frequently make comments that imply that I am so much richer than her, or alternatively I am too cheap. Now, neither in my opinion happen to be true. I make less money than her, and therefore, I spend less money than her.

 

Our styles are very different too. I am not a flashy dresser. Our patients frequently have altered moods and thought disturbances. They can be unpredictable. Therefore, I prefer to blend into the woodwork.

 

Mabel, however, is cut from a different bolt of cloth. She is always dressed extremely fashionably and well put together. Mabel is the kind of person who likes to be the beautiful one. I am happy to let her play that role.

 

So, once Mabel joined our discussion she began making her usual snide remarks about the state of my financial affairs, โ€œCarol is so rich. She can afford a very fancy house.โ€

 

To me, the implication was โ€œCarol is a rich Jew, and I am a poor Haitian.โ€ I wanted to challenge her directly, but, I did not.

 

Instead, I thought about the group from the day before and the section from Perkei Avot (Ethics of the Fathers): โ€œWho is rich? He who is satisfied with what he has.โ€


This time, rather than get defensive, I agreed with Mabel, โ€œYou are so right! I am very rich! I am rich because I am happy with what I have. Being wealthy or poor is a state of mind. There is never enough external stuff than will give anyone inner contentment.โ€

 

Anyway, that ended the conversation, and she concurred with the wisdom of seeking inner wealth rather than outer wealth.

 

Emotional attachment to possessions or approval distract us from our true purpose in this world. Our true purpose in this world is to transform the physical into the spiritual. We are spiritual being having a physical experience, not physical beings having a spiritual experience.

If we are happy with what we have, we can live contentedly within our means and according to our deepest priorities. Therefore, we have to feel wealthy on the inside and accept ourselves on the outside if we want to have peace of mind.

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.

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: โ€œsmall children, small problems, big children, big problems.โ€

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 daughtersโ€™ 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.

Yaffaโ€™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 โ€œalmost normal.โ€ 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 peopleโ€™s children grow up and become more independent. The path of my children is different. Over time, I see that the gap between my childrenโ€™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.

 

Peace Of Mind

 
As someone who works in mental health, the nature of giving, receiving and feeling loved comes up regularly.

Very often, patients report feeling angry, dissatisfied, and hopeless.

When we discuss these issues further, patients come to realize that true joy comes from giving to others, without expectations of receiving in return.

When we give to give, we feel love for others and loved by others. 

When we give to get, it is a recipe for resentment and disappointment.

A meaningful life filled with purpose and service is the secret to serenity, peace of mind and true lasting happiness.

Ultimately, happiness is a choice.  It is a daily disciple to focus giving and sharing rather than taking or getting.

Daily writing exercise:

  

What did I do for others today?

Was I willing to inconvenience myself to help another person today?

Was I willing to let othersโ€™ needs be satisfied before my wants?

Did I help another person without waiting to be asked?

Did I do something nice for someone I dislike? 

Did I do something nice for someone anonymously?