A child is born with severe developmental disabilities in Baltimore. The doctors gently convey to the parents that their child will not only find school difficult, but his life will be profoundly affected by his disability, and he will never be able to live a “normal life.”
It is heartbreaking, but no amount of tutoring will make a child with profound intellectual disability able to function in a regular classroom. We like to think of therapy as a magic pill, but a child with severe deficiencies in a particular area will not be fully “cured” with any amount therapy, though he may be strengthened and benefit from it greatly.
It is primarily these developmentally disabled and intellectually disabled children whom Menucha serves.
Menucha parents are busy shuttling their child to and from different therapies, knowing that it is crucial that the child receives the therapies in order to reach his or her fullest potential. To make things more difficult, however, the services that Menucha children require are often very specific. As a result, the children often require therapies that are not as commonly known or available, such as Applied Behavior Analysis (ABA) and the like. Also, the child’s medical needs often cannot be met by their family pediatricians, so their parents must travel long distances to obtain specialized medical care.
Menucha supports and informs parents so that they can navigate the world of severe special needs in the way that will best serve their child. Menucha’s director serves on several local and state committees that enable Menucha to obtain information which families would not otherwise have ready access to.
Children with intellectual disabilities require so much care, often at great financial cost, that sometimes their families simply cannot get by without at least a small amount of help from government-funded programs. While the small amount of funding which the government provides is not enough to even begin to cover the costs of raising a child with severe special needs, every little bit helps. The funding process can be confusing. Knowing how to obtain the funds, and figuring out whether or not you qualify can be frustrating. Menucha clarifies and eases the process for our parents so that funds can be obtained, making life just a little easier. (Please note that these funding sources are listed on Menucha’s website. Keep in mind that the resources are only accessible to children [and sometimes adults] with developmental disabilities. Go to www.MenuchaInc.org and click on “Resources”.)
So many things that we take for granted, such as friendship, are so hard to come by for a child with special needs. A huge deficit in the lives of individuals with developmental disabilities is social interaction and the feeling of belonging to a community. Menucha provides volunteers to ease the child’s loneliness and to give the family a break.
Many children with special needs must go to non-Jewish schools. This prevents them from learning about the beauty of Judaism, the holidays, and Jewish tradition. Menucha’s evening program provides dinner and enables the children to daven and learn about the yomim tovim so that they can participate in them to the best of their abilities, just as their siblings do.
Parenting any child is challenging. Parenting a child with developmental disabilities is exponentially more so. Parents themselves need support as well in order to have the strength to care for their child year after year, as the child grows and the parent ages. Through Menucha, parents can receive a mentor to advise, guide, and encourage them when needed. Menucha’s annual Shabbaton and other programs throughout the year enable parents and families to join together and receive chizuk from one another.
The siblings of a special needs child are affected as well, and Menucha has addressed his reality through the Siblings with Simcha program. A social worker would lead the siblings in games and a pizza dinner was served. The children receive much-needed support to help them deal with the difficult reality of having a child with profound special needs in their family. Just this month, Menucha received a grant from the Maryland Developmental Disabilities Council. This grant will be used to treat Menucha parents to a night out where they will be guests of honor at a dinner and get pointers on how to support the typically developing children in the family. At this event, parents will be addressed by a frum psychologist from New York who is familiar with the dynamics of Jewish families.
This Yom Kippur, as in years past, Menucha children were safely watched by trained certified nursing assistants.
Being a child with special needs is riddled with obstacles. Menucha strives to remove some of those obstacles and enhance the life of every Menucha child and each member of his family.
