The Haggadah speaks of four types of children, to each of whom we are obligated to teach the story of the Exodus. The final example is the שֶׁאֵינוֹ יוֹדֵעַ לִשְׁאוֹל, the child who does not know how to ask. Typically, we think of this child as one who is too young to ask even the most basic of questions. Others say that this is a child who does not care to ask. Perhaps, though, the Haggadah is describing a very different child – a child who, due to his disability, is unable to ask. The Haggadah reminds us that we also have an obligation to do all that we can to educate this precious child.
Eight months before making Aliyah, we were blessed with our fifth child – Yehuda Yair – who brought much light to our family. For the first five years of his life he was a typical child. But then everything changed almost overnight. He almost completely stopped talking, forgot almost all he had ever learned, and had a complete behavioral regression, requiring 24/7 supervision. Like any good parent, we did our best to try to find out what had happened and how to help him. He was diagnosed with PANS/PANDAS, autoimmune encephalitis and an additional diagnosis of late onset autism. All of these are quite rare, particularly for someone who was a normally developing child for five years. Meanwhile, he has undergone many medical treatments, all with the hope of regaining at least some of his prior function. Hoping, working and praying for a miracle, we gave him a third name – Nissim. Sadly, there has been only slight improvement. For reasons only He knows, Hashem has decided that Yehuda Yair Nissim will remain a low functioning autistic child.
One of the many blessings of living in Israel is that we live in a country that takes seriously the need to educate all children, including those with special needs, as well as the need to assist their families. Currently, we receive support in several ways:
- In Israel, all children are entitled to education, and children in special education are served until age 21. Yehuda attends a religious school in Jerusalem for children with autism, where there are typically three staff members with six children. School is year-round, other than a two-week break at the end of the summer.
- As a parent of a disabled child, we receive a monthly allowance from National Insurance that helps pay for additional services and compensates us for my wife’s inability to work outside the home.
- Our oldest son is a paratrooper in the IDF, yet the army grants him extra days off so that he can come home and help care for his younger brother.
- It’s not easy having a nine-year-old who needs 24/7 supervision. Shabbat is a particular challenge. In Efrat, an incredible group of teenage volunteers take special needs children like Yehuda every Shabbat for a 90-minute program – providing both children and parents a needed respite. Many other communities provide similar opportunities for special children and their families.
- In Israel, parents of autistic children are entitled to at least 15 “vacation days” where their child can spend a day and night with another family or at a special program (like Shalva). The idea is to give parents a break. In our case, it is hard to take advantage of this as Yehuda is an anxious child unlikely to cooperate with going away for a sleepover. We decided to request special permission to bring someone to our home for some Shabbatot to help take care of Yehuda, which would allow us to experience a more normal Shabbat. Permission was granted.
In Israel, the State cares for people with special needs for their entire lives. We know Yehuda’s older siblings will do all they can to help him, while caring for their own families. Hopefully, Yehuda will progress to the point where he will be able to live semi-independently in a group home. But regardless of the extent of his needs, we know there is funding and a framework to help him throughout his life.
Nothing is perfect. We wish there was even more funding and support for special needs. And no amount of support can change the difficult reality with which parents of profoundly disabled children must live. Still, we are blessed to live in Israel, where even the children who cannot ask have a place at the table – and a nation to care for them.
Rabbi Shmuel Jablon is the Executive Director of Shapell’s / Darche Noam and Midreshet Rachel v’Chaya in Jerusalem. He and his wife were recently blessed with their third sabra grandchild.