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A Mother of a Child With a Disability Speaks Out

A Mother of a Child With a Disability Speaks Out

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Jacob Grossman, 17, right, with his Friendship Circle buddy Jake Guria, 16.
Jacob Grossman, 17, right, with his Friendship Circle buddy Jake Guria, 16.

Today, I met with a most inspiring mom, the mother of 17-year-old Jacob, who lives with Fanconi anemia, a genetic degenerative disease. Hearing Rachel Grossman of Buffalo Grove, Ill., speak gave me a renewed appreciation for health, something we can easily take for granted. She inspired me to recognize our gifts and to live every moment to its fullest. IJacob is medically fragile internalize her message again and again, as her words ring powerfully in my mind.

Jacob is medically fragile. He has had two intense transplants during his short life: he is a survivor of a bone-marrow transplant, and is living off a borrowed kidney. Additionally, he takes 15 medications daily. Jacob has to be fed with a feeding tube and catheterized five times in a 24-hour period.

Following are Rachel’s words about her child:

“We are fortunate for the advancements in medicine. In past years, he was constantly in tremendous pain. Now, with new medical adjustments—albeit with all the hurdles they present—he is a new person. Are his medical needs challenging? Yes. Time-consuming? Yes. But they are my life. They are his life. They are our life. Jacob is a walking miracle.

“Looking at his past years, and at his future, I am grateful for every day we have together. I am lucky to have had these 17 years of life with Jacob, and I anticipate more meaningful years together.

“I never dreamed that Jacob would be graduating from high school. I never looked into employment options for him since those opportunities seemed far beyond his reach. And now, thank G‑d, we are nearing those stages! It’s a whole new set of challenges to work through. Vocational programs and independent living choices can be overwhelming and challenging since availability is so low. Being that Jacob’s medical needs are complicated, his options are even fewer than what is available for individuals with other special needs.

“It can be challenging socially and emotionally for Jacob. Jacob is a junior this year. After next year, his friends will go off to college, and he will stay back. His friends are reaching milestones that he will never be able to reach. But he reaches other milestones that only he is able to reach. Each advancement is extremely rewarding. What seems like a baby step can be the finish line of a marathon for Jacob—the marathon of his life that he is so adept at.

“I take life as it comes. Every moment is a treasure that I cherish, that we cherish. I do what I need to do. This is the life I was given, and this is the life I live with. I do my best. We all do our best. Jacob needs a mom and a dad, so we, along with his older sister, Talia, try to be the best family we can be fo him.

“We are forever grateful to wonderful organizations such as Chai Lifeline and the Friendship Circle for their support and care. Having a buddy visit with Jacob on a weekly basis and having him join holiday events within the community in a safe and welcoming setting gives him a sense of acceptance and provides meaningful venues for social interactions.I take life as it comes Such outlets are too often lacking for children and teens with disabilities. Individuals with disabilities deserve friendships just like, if not more than, typically developing people. And their contribution to society is powerful and far-reaching. Their genuine love and friendship can cheer up anyone’s day.

“His favorite hobbies and interests are all about music and Judaism: Someone is needed to lead birkat hamazon? Jacob is first to volunteer. Jacob would love to grow up Orthodox and live in a religious neighborhood. If it were up to him, life would be intrinsically bound up with G‑dliness in a revealed and practical way.”

As the Lubavitcher Rebbe explained in the 1970s and `80s—at a time when individuals with disabilities were often shunned and institutionalized—a person with special needs is more in touch with his or her soul. These special souls are in tune with their Creator and possess a bond far greater than the average person.

Yes, indeed, Jacob has a lofty soul. His soul is perfectly intact and pure. Jacob reminds us all of the unique and precious gifts G‑d has granted us—and continues to grant us on a constant basis. Let us seize the moment and do our very best to make a positive difference in this world.

Bassie Moscowitz directs The Friendship Circle of Illinois together with her husband, and is mother to a growing family. She enjoys music, cooking and writing in her spare time.
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Ralph Mi April 20, 2017

I think that if I had a disabled child, it would go a long way to know that everyone would be kind and inclusive to my child, even after I'm gone. In fact it wouldn't distress me if they competed to see who could be the kindest. Reply

Anonymous September 29, 2016

Thank you for an update I wanted to thank you for the update on your son and the compression tee shirt. My thought was trying it in the house BEFORE you go somewhere just to see if that makes a difference. One thing that helped my daughter with my grandson was to always explain where he was going, why and how he could help himself by being quiet. Sometimes the fact they understand what you say and get respect for being spoken to like everyone else is a wonderful thing. May the New Year bring good to you and yours. Reply

Anonymous September 29, 2016

an update Hi , my son has used the compression T-shirt now for over a month as mentioned in my previous post. It probably varies depending on the child's sensory challenges and age, but I found that while it helped alleviate his anxiety eg. refusing to get out of the car (this problem lessened) it did not help with reducing his hyper-activity, running without warning when out etc. The T-shirt was worn only when we went out as he wanted to remove it after returning home understandably. Reply

Anonymous August 16, 2016

To anonymous Aug 12 Re:compression T shirt Thank you for the info, I will post an update on it to let people know.
We've managed to avoid medication so far , as working on his sensory issues with occupational therapy and cutting out sugar etc helped a lot.
It's good to try out a non-invasive remedy at least to find out.
The weighted vest is not practical in summer either so we'll see how the T shirt goes,but only using when we go out to crowded places for a specific duration of time.
He is normally quite calm, we are fortunate in that sense. Reply

Adonai's Anointed Pittsburgh August 14, 2016

Aaaawe. O. Wow. Thank you. Reply

Anonymous Margate August 12, 2016

Praying for All with Special Needs My son, now 26, cannot live at home. He has had a difficult life. He lives in a group home and goes to a sheltered workshop run by an Orthodox woman who is a Shoah survivor, and for whom we pray daily. I only ask G-d for strength for all those caregivers out there, struggling. I will not address the theology of the issue. "The L-rd will give strength (oze) to His people; the L-rd will bless His people with shalom." First, the strength; then, the shalom. Amen. Reply

Anonymous August 12, 2016

To the person using the compression vest I would like to know if the compression vest helps. My grandson used what is known as a weighted vest as a little boy without noticeable difference. I do think using heavy or weighted blankets and quilts are calming for sleep. I would make sure the vest you're trying doesn't compromise his breathing so if he is verbal ask and if not please watch him. . The best thing helping my grandson was risperedal. It calmed him down, let him sleep well and focus so much better. It was amazing. Now that he has turned 13 it doesn't seem as effective. My daughter will be taking him to the doctor to hopefully adjust the level and Gd willing he will get back to himself. I know what you go through once your child is bigger and stronger than you. It takes so very much. Thank you for trying to help others. BH Reply

Anonymous August 12, 2016

Thank you for this article. People are more accepting these days, although we are still quite isolated it gave me the time to grow and appreciate those who do try to reach out to us. My child(teen) will try what is called a compression T shirt soon hopefully it will keep him calm in public places as he is bigger and stronger than me now. I hope this may help other moms too. Reply

Bassie Moscowitz Northbrook, IL August 11, 2016

I am humbled BH
Having met many parents of children with special needs during the past ten years, I am continuously humbled by their exceptional dedication and faith.

Many parents have related to me that they feel they are much better people because of their special child. The appreciation for the gift of life, coupled by the innate, genuine love of these pure souls is priceless.

Each individual is unique and special, with varied needs from one another. The medical, emotional, or physical challenges brought upon the families can be intense.

May you each have the strength and stamina to persevere and continue doing the incredible job you are doing! Reply

Jennifer Ionescu Leland August 10, 2016

Bassie,

Thank you for this article. I have two children with autism. You have provided me with so much hope. I am divorced. I thought I was raising my children on my own and I felt so inadequate. Thank you for reminding me that Hashem knows to whom He entrusted these precious souls, and He does not abandon us to just do the best we can but instead He stays by our side. Thank you. May Hashem bless you. Reply

Anonymous August 10, 2016

They say there are no coincidences I am grandmother to a special needs child. His mother (our daughter) and he live with my husband and me. He is severely autistic and although he was verbal till age two, his word disappeared. Every day is a challenge and sometimes I am so hopeful and other days, like this one, I feel such despair. Not only for him, a bright boy in a tortured body but for my divorced daughter who is lonely with no friends or husband. And I admit I feel sorry for myself too. My grandson, TzviHersh, is beginning puberty and his sweetness and little childish ways are turning into hurting himself and us the past several months. The work for helping him is hard, but his new behavior frightens me. Reading your words lifts me up, if only for this moment. May Hashem watch over all of us. I feel the need to thank you for what and how you wrote. I wish I weren't so frightened and had your courage. Thank you so much, dear woman. Reply

Anonymous Israel August 10, 2016

Stepmother to a special needs child Very much relate to taking life as it comes and realizing that, whatever happens, we are all doing our best. And it helps me to remember that because our childen have special needs, we are special parents and special families, especially to Hashem. Reply