For a long time, I didn’t feel a great need to share about Dolev’s autism. I felt my special needs parenting was for me with myself and him. Still, when helped Shira start a special needs parenting blog to share her knowledge and experience, I suddenly felt that I too should come out of that closet.
Special Needs Parenting – a child wrapped in love
Dolev was born in July 2013, our eldest child. He was the first grandchild of both my parents and Shira. Everyone fell in love with him. The grandparents, uncles and aunts, and of course his parents Shira and I.
We quickly realized that something was not quite right.
This baby wouldn’t stop screaming and crying. It was really hard to calm him down. We used quite a few methods to try to balance his sensory regulation.
He barely slept. “Sleep” is not a very good term to describe those few minutes when he would close his eyes here and there during the days and nights. Shira and I were very exhausted.
It was a very hash time for us and our relationship. We were always fighting.
In general, the baby’s behavior did not match what we expected:
- Dolev seems to be in more pain than a normal child (sensory regulation disorder)
- There was a kind of eye-crossing that came and went (a sign of epilepsy)
- His smile came late and was lopsided.
- There were many more small early signs of autism. Alone, these did not turn on warning lights in those around us
Shira and I were in agreement that it was too extreme. However, in the early stages, we experienced a lot of criticism from the environment.
Our parents said that both of us slept very little as babies. The family-center nurses said that we don’t understand because we are new parents. Despite all our instincts, we listened to them. And it took us a long time to request a diagnosis.
Listening to our parental instincts and taking the child for diagnosis
At about two years old, we went to a wedding with Dolev. He went to the dance floor, where he saw a picture magnet board. As soon as he saw it, magnets were taken down and arranged in a row. This was something he used to do with all kinds of toys at home. But this time, it triggered my suspicions again and I checked on Google.
Doctor Google straight-up “diagnosed” him with autism. I showed the family, and they went on the defense. “How can you do such a thing to him?”
But Pandora’s box has reopened.
A few months later, Dolev went through the complex diagnostic process. He finally received a diagnosis – classic autism.
Receiving the first diagnosis in the family – Autism Spectrum Disorder
I remember that upon receiving the diagnosis I was not really surprised. I didn’t take the news hard at first. Then, after two weeks, I started to feel a loss. I went into a kind of mourning for a child who is still with us.
However, this mourning period was short. I quickly accepted the situation. And together Shira and I started planning the next steps.
It took me years to read the diagnosis again, and realize that his developmental state was really not good.
Second diagnosis – dealing with epilepsy
Then at the age of two years and eight months, Dolev experienced a major epileptic seizure.
The seizure added another layer to Dolev’s complex story, and to our special needs parenting.
We switched between medication after medication, but we couldn’t sustain a medicinal balance for more than a few months.
Then, at the age of five, Dolev was rushed to the emergency room after a seizure caused a serious fall. He was hospitalized for observation. There we consulted a neurologist about possible treatments for epilepsy.
He told us that he was not so sure that Dolev would even survive to the age of six.
Fortunately, he is already 9 years old. He is healthy and does not take anti-epileptic medication. He goes to a small classroom, which is integrated into a regular school.
The meteoric progress in Dolev’s development is probably rare. From very low functioning to moderate-high functioning autism. But I want to give kids who might also be able to get the same thing, the opportunity to try.
Special needs parenting – maintain their privacy or to come out?
It wouldn’t be accurate to say I didn’t talk about it at all. I spoke about it with colleagues and friends in one-on-one conversations. But I chose not to publish the matter on social media. The intention was to protect my children’s privacy.
I didn’t want the exposure of my special needs parenting to hurt them. After all, my job is to protect them from hostile elements, perhaps preserving the honor of the family. Also, I didn’t feel that anyone would really be interested.
So what changed?
It starts with the fact that Shira wasn’t avoiding talking about it on her social media. As her partner, this invalidated most of my arguments anyway.
Shira’s sharing led to action.
Shira’s conversations revolved around many topics. For example, how to wean a non-verbal child from diapers. Or even, how to get a developmental diagnosis.
As time went on, I began to understand a few things:
Firstly, Shira is very good at what she does. There is a lot of good in her volunteer work.
Secondly, the method doesn’t make sense. She would talk to three or four people a day. Each conversation would be between half an hour to an hour and a half.
So I need to find a way to help her bring this information to people more effectively.
Setting up the Blog
So I got her consent and opened this blog.
She doesn’t like to deal with such technological things. We initially talked about starting a YouTube channel, but that came later.
While we were planning what topics she would write about, I began to understand that my voice also had an important place.
As I am also active in raising our children. And I try to complete the picture she paints with my point of view. I began to understand that there is also a place for a man, a father, to talk about special needs parenting. To talk about the happy moments and the more difficult ones of fatherhood.
By writing this blog, we hope to make essential information available to parents of special needs children. Some of our posts are localized to Israel, and some are more global.
This includes things like:
- how to exhaust disability benefits in Israel
- how to recognize signs of autism
- How to prepare for a developmental diagnosis for suspected autism
- And also, some of the more personal aspects of the special needs parenting experience. Such as preserving the relationship, self-help, and dealing with depression.
But we are not parents to children with just autism. Our children are more complex, so our stories bring a wider experience. For instance:
- the safekeeping of a child with epilepsy
- looking at genetics
- family planning
- Paying attention to their non-special needs siblings
- or dealing with digestive issues such as EOE.
We are also constantly getting more education, hoping to be better at helping our own childen. This should also provide our readers with better solutions for similar problems.
Writing about stem cell therapy
In an act of desperation, in 2019 we took Dolev overseas for an experimental treatment. We were warned it might kill him, but he was already dying.
Fortunately, the doctors here were wrong.
Stem cell therapy completely changed Dolev’s quality of life. We went back several times and his brothers had treatments as well.
Stem cell therapy stopped Dolev’s epileptic seizures and boosted his communicational abilities. It dramatically reduced developmental gaps after each treatment. It is important for us to share and explain the issue.
It’s a major impact on our lives, and this is also represented in our activism. We are working hard to bring the treatment to Israel. Making connections between stem cell researchers abroad and here.
For example, we were able to bring about the opening of the study in Sheba in which umbilical cord blood is transplanted for children with autism or cerebral palsy. We are already working on the next project.
Many of our blog posts focus on this complex topic.
Today we also provide a medical tourism facilitation service for these treatments.
At this point, I want to thank our readers for being here. We hope to deliver everything we are planning in the best possible way.
I also want to thank my relatives, who support me and accompany me. I apologize if I cause pain or embarrassment by sharing. Shame is not the goal. I believe I can provide positive value in sharing.
My experiences are personal and mostly written in retrospect. Some topics will be unpleasant to take out and may not be pleasant to read.
I hope that voicing my point of view in the blog will help other fathers to take more pride in their role in their special needs parenting.
It takes a village to raise a child
I recommend looking for support groups with experienced special needs parents. For this purpose, we have opened another Facebook group for parenting skills. This is in addition to our Stem cell therapy support group for families looking for information about the treatment based on umbilical cord blood or stem cells. Both of these groups are mainly for Hebrew speakers but you are welcome to join if you think it can benefit you.
For those who are not active on Facebook, join our silent WhatsApp group, where you will receive notifications about events we organize. Again most of these will be in Hebrew, but you can catch the odd English lectures. You can find recordings of these on our youtube channel.
The Autism Essentials Israel blog is written by Hagai and Shira Reiner, two parents of children with special needs – autism, epilepsy, and more. We focus on the essentials of raising special needs children in Israel, but much of our content will be relevant globally
Sign up to our newsletter to receive our articles directly to your email!
עוצב באמצעות WordPress.com