Our Journey with Yosh
We received a pre-natal diagnosis at five months into my pregnancy, and then did amniocentesis because I was 40 and we wanted to be prepared. We are Orthodox Jews and there our belief and faith helped us throughout Yosh’s life. There was never a choice or decision to be made. Yosh was ours as soon as we knew I was pregnant. I felt a connection to him before he was born and Down Syndrome was information to get used to. That doesn’t mean we didn’t grieve the baby we expected. There was grief, sadness and fear. But G-d knew what he was doing. We were both special education teachers, me for 20 years and Ken just starting out. I worked with pre-school and kindergarten while his Abba (Hebrew for Dad) worked with teens.
After his birth, we spent ten weeks in the St. Joseph’s NICU since Yosh had pulmonary hypertension, pneumonia and a hemangioma on his liver, in addition to severely clubbed feet. We could only hold him for 5 minutes at a time because he was intubated and we could put our hand though the opening and touch his arm. Someone in the community, I’m afraid I don’t remember her name, arranged rides for me to the hospital every day. I sat there and sang to him and talked to him. I don’t know why, but I sang The House at Pooh Corner and Adon Olam most of the time and for years he only wanted those songs when he was sick. There is very little harder for new parents than going home without your baby. My husband, came after work and we left together. I spent 10-12 hours a day at the hospital.
Yosh finally came home with an NG tube. We had to learn how to put the tube in and feed him by tube while trying to get him to use a bottle. He was up every few hours at night from acid reflux. We did Stepping Stones which is a program just for babies with DS. We had feeding therapy at home. Even though all the babies were the same age, Yosh was not learning as fast as the others and that was frightening. We had to learn not to compare Yosh to anyone, even children with Down Syndrome, which wasn’t easy. But we celebrated every little new skill as the major accomplishment it was. He was the happiest baby ever. I had never known I was capable of so much love until Yosh came into our lives.
We always felt there was something special about Yosh. People were and still are drawn to him. There were some surgeries, to straighten his feet, and to remove a benign tumor on his liver, but Yosh sailed through everything with joy. Learning was slow. We did sign language and that helped him communicate but he was still behind even the other kids with DS. But when he walked into a room, he lit it up. He loved being in temple, and still does, wanting to be right next to the bimah, which is the stand in a temple where we put the torah.
Yosh continued to have feeding issues and nothing worked until we through the bottles away and he just started eating. A few months later he went to Camp HASC, a Jewish camp for children with special needs, for the first time and came home biting and chewing. The truth is Yosh learned to eat when he and G-d were ready for him to do so. We quickly learned nothing happened in our time. Yosh had his own schedule.
We always suspected there was more going on than DS, but there were so many other issues and maybe we were afraid to get an official diagnosis but the school sent him to a neurologist when he was 13 and we went on our own to a developmental pediatrician. We got a diagnosis from one of them of autism and the other said ADHD. Yosh loves people and is very affectionate but plays on his own and has certain routines. It finally explained why he was so far behind peers with DS.
Yosh is also a “rock star”. Counselors at HASC and YACHAD fall in love with him. He brings joy wherever he goes. We believe Yosh talks to the angels. and they talk back. It is a belief in Orthodox Judaism that children with special needs are closer to G-d than other people and we see it in Yosh every day.
Not everything about having a child with special needs is easy, even when that child spends his days laughing, singing, and giving hugs. It’s hard dealing with bureaucracy and red tape, getting services, having to see specialists, etc. But Yosh is a joy and always has been and I’m grateful G-d chose us to be his parents.
Neither my husband nor I were born into religious families. He became observant as a teen and I learned faith when I met him. It has made the difficult times with Yosh so much easier to bear. Yosh has been hospitalized more than any young man should be. Five years ago he went into respiratory failure twice and we almost lost him. We spent a month in the hospital. Last year he had a bizarre gastrointestinal problem and again almost died. He came home with a tracheotomy and a g tube. The trache tube is gone, but the g tube is permanent. We learned how to change both tubes, how to suction him and how to use a feeding pump. These are things we never expected to learn, but Yosh is still the happiest young man you will ever meet Ken and I also have this deal between us that when Yosh is sick, only one of us is allowed to fall apart at a time. And sometimes we say to each other “It’s my turn. You need to be the strong one right now because I’m going to crash”. And that works for us. One is holding it together and the other can cry or scream or sleep. And then, it’s like, you’ve had your turn, now it’s my turn to fall apart.
This child who has very little language had this specialness about him….we would walk through a store, he was always a very social boy especially with women, he was always a flirt! Yet, every once in while there was somebody that he had to go up and either shake hands with them or put his hand on them….sometimes, he would go up to someone and give them a hug. I know children with Down Syndrome are famous for hugging but Yosh was never like that – there had to be something going on – and very often the person he went up to (we found out later) was in crisis; cancer or grieving over a lost loved one. It wasn’t always a Jewish person that he went up to, it mostly was women…but one time we were in the supermarket and we went past this man, not someone we knew…and Yosh really indicated to me that he wanted to stop and he wanted to hug him. He was about five. He made the sign for hug and he was trying to get to this man and I was saying, “No, Yosh, we don’t hug strangers…” And the man saw us and he came over. And he said that he had a brother with Down Syndrome that he hadn’t seen in many years and he missed him terribly….and somehow my son knew this! So even though, there’s a belief that children with special needs have the soul of a prophet who has very little left to return to the world for…and because they have a simple task, they are given a ‘simple’ life. Part of me is like…When did I become a person who believes in this? But he just has this other wordliness about him. He has a blanket which he got in NICU that is his his tallis or prayer shawl….he just puts it over his head. When he has his tallis blanket, he needs a prayer book and he moves like the men in prayer.. He has never once picked up an English book, a children’s book or any other of the hundreds of books that we have.
I don’t want people to ever feel sorry or to feel afraid if they find out that their child might have Down Syndrome or a diagnosis of autism….because it is not something to fear. I think we get as much, if not more, joy from Yosh as anyone gets from their typical child. When things are difficult, when he is in the hospital, when I have to deal with bureaucracy and red tape to get him the services that he needs, I have learned that I am a stronger person than I ever believed I could be! I was the shyest, most insecure, mousy person before Yosh. I couldn’t speak up for myself, I could speak up for my students at times. But being part of a social group, just speaking up for myself terrified me. I have learned that when it comes to my son there is term that a lot of us use in the special needs world, that we are “Mama Bears”. That Mama Bear comes out and you better get out of my way because if he needs something, he is getting it! And I am generally polite about it until I find out that the time has come to not be so polite!
About two and a half years ago, he had to have a complete evaluation done (every three years they do a full workup). This new woman was very thorough and she saw that they had never done a neurological exam. And we decided to follow up on this on our own at St. Joseph’s. The neurologist found that he was autistic. The developmental pediatrician felt that it was ADHD. And I learned that autism was the magic word in NJ!
Yosh’s needs did not change. His services, however, went through the roof! All of a sudden, we were eligible for behavioral therapy at home. He was allotted 10 hours a week, we decided to go for six. He was eligible for a case manager to help us with accessing other services. We were given family support services to help my husband and I with how to deal with our stresses…..if you just have Down Syndrome..you got very little, but if you have autism, everyone is scrambling. We had always kind of known that Yosh had to be autistic…as social as he is, he can play on his own for hours…he doesn’t make eye contact easily, he’s very good with his counselors but in a group full of children his own age, he doesn’t realize that they are there…he only started last year to play a back and forth game with another child in school. So instead of it being like “Oh my…child has autism”..it was like “Okay, that explains stuff. We have new information”.
The developmental pediatrician put him on Adderral and that has worked miracles. He is able to pay attention, his language has developed….Within months of being on Adderral, I went to his IEP meeting and his therapists and teachers were jumping out of their skins to tell me the how much he has been doing…the difference in one year was more progress than he’d made in the past six! He is able to tell me how he feels, he is able to tell me what he was Yosh used a combination of words and sign language. He’ll come over and pull at my arm and I’ll know that he wants something. One of these cognitive progressions was that Yosh realized that if I didn’t have my glasses on, I couldn’t get up and do stuff. So, before he’d talk to me, he’d hand me my glasses…and that’s not something he was aware of before. And he sits there and he does the jabbering that he’s doing now and we say “Use your words” and we lead him though it and he can do with the signs “I want eat” or “I want TV”. Or he’ll hand me a ball that has lost some air and he’ll (blow) with his hands. It also used to be that the only thing that Yosh would play with was a ball or a string. And then, he found some of the toys that I use in my work and he loves MagnaTiles! And it’s the first thing besides a ball that he ever played with. And I would sit there and try to get him to do a puzzle and it was torture. (Yosh demonstrates). One time, he put then all together and he stuck them on his head and he said “Hat!”. And this was all so new! It was wonderful.
One of the wonderful things about having a child who is delayed is that when that one thing comes, it is so much more amazing…every Mom waits for the moment when her child first says “Mama”. Yosh was able to say “Abba” by the time he was two because it was an easy sound for him…so Abba got lucky. But he couldn’t make “M”’s. Yosh was seven years old when he first said “Mommy”. And I remember that moment so clearly! He was sitting on the floor of the kitchen and he said “Mommy” and even now, talking about, I get what I call my happy tears…because the moment is so special…when you’ve waited seven years for “Mommy”, you never forget that!
The first time he came home from school – and every day I asked “What did you do in school?” – and one day he told me that he paid attention to the teacher and he colored…in words and signs. Mostly the signs help him to say the word. He’ll do the sign for attention and say “Tention”. These past few weeks, he’s never had such a long burst of progress since he came home from camp. I took Yosh to work with me….he just played with the stuff I brought for him and I said “Yosh, you did a good job!” And one of the things I have had to accept is that Yosh loves his Abba just a tiny bit more than he loves his Mama. He is Abba’s boy and it’s okay because the relationship between them is so beautiful. All fathers love their children but the connection between the two of them…I’m okay with being number two. So when something is really important….because Ken isn’t always there when Yosh has his moments…I tell Yosh we are going to tell Abba what a good job you did. So I said “Good job” and he said “Job Abba” all on his own. And I said “Yes, we are going to tell Abba”. And he said “Yay Yosh”. He’s also his own biggest fan. And as we were walking out of the house, to the car, the wheels were turning in his head….and he went “Job Abba ball”…because Yosh’s life revolves around balls…and what he was telling me was “Well, if I did a good job and it’s important enough to tell Abba, then you should buy me a ball!”. And we went to the nearest dollar store and I bought him that rainbow ball and he knows that he got that for doing a good job!
Groups of women with children with special needs and groups of parents of children with autism are on Facebook a lot….and children have behaviors. Yosh might bite himself but his bad moods last two, maybe three minutes, whereas other children have hour-long meltdowns. We have been to concerts with him…he has gone to rock concerts and symphonies. NJ has an intergenerational orchestra which has high school students through seniors who play together….it’s free so if he makes some noise….if he’s done he will let us know but he’s not phased by crowds or noise or lights so we don’t have the same difficulties…for most children with autism, the world is a big, bright uncomfortable place.
The hardest thing with Yosh is that he is next to impossible to punish! Because you put him in a timeout, and he drums on his lap and he sings. Usually, he just laughs. If his Abba is not happy with him, he cannot bear it…it is so devastating and then he cries and he needs Abba to tell him that everything is alright.
The biggest challenges are the bureaucracy. Yosh is on Medicaid and they say they sent you a letter but they haven’t. Then, you have to put together all this evidence etc. So, it’s always jumping through hoops.
The joys are every morning I wake up to the hugest smile and a hug that nearly strangles me and I start my day with a child who is just so happy and so charging and ready to get out there and start his day….my 18-year-old snuggles and lays his head on my shoulder and he gets as close as he can and he falls asleep on me. At an age when other teens are like ”Drop me off at the corner so my friends don’t see you” and “Don’t kiss me in front of them!” Yosh may not be able to tell me what his day was like but other teens aren’t giving their parents anymore information…everything is “Fine”, how are your friends, “Fine” “Dunno” and I have this child who all of a sudden just feels the need to get up and dance or he’s watching TV and he’ll run into the room and he’ll give me a kiss and then he’ll run out of the room. It’s not that there’s one instance that I can particularly pick out…it’s that our daily life with Yosh is filled this smile that stretches so far…we joke that he’s going to have laugh lines by the time he’s twenty. We have an 18 year old who looks 12 and has the skills of a 4 year old and who makes us happy every minute of every day.
My best advice to new parents is don’t listen to anyone who tells you anything negative. You will get more joy from this child than you can ever possibly imagine. Don’t feel guilty that you are grieving for the child that you expected. It’s normal to feel sad, it’s normal to feel angry. We all feel that and it will come back to you at different moments in your child’s life. But this child will teach you more about love and acceptance…he will teach you to be strong…he will teach that you are a part of G-d’s plan and that this was all meant to be. And that G-d has put this child here for a reason…and sometimes we don’t know what that reason is….we don’t know what His plan is….and we go through hard things…and we may go through more hardships than other parents but we also go through more joys. Let your child be who he is….don’t worry about what other children are doing. Don’t even worry about what other children with Down Syndrome are doing. Your child will do what he is able to do when he is ready for it….and when he does those things, you will be happier than you can possibly imagine. Take each day with the knowledge that G-d made your child the way He wanted him to be and He gave him to you…and you are on an amazing journey and someday you will look back and see just how incredible this was……Search out other families and make those connections because it always helps to talk to someone who has walked in your shoes.