Parents of Special-Needs Children

Rita Molnár lives in Budapest with her husband and two sons, both of whom have autism
spectrum disorder. Here is my interview with her.

First of all, what are your sons' names? How old are they? 
What types of autism do they have?

I have two sons. The older one is named Áron, and he will turn 12 in October. The
younger one is called Norbert. He will be 10 years old in January. My sons are diagnosed
with autism spectrum disorder. (It was called pervasive developmental disorder before
2013). DSM (Diagnostic and Statistic Manual of Mental Disorders) defines autism as a
single spectrum disorder with a set of symptoms in the areas of social communication,
behavior, flexibility and sensory sensitivity. I would say my kids have severe autism, but
there is no such thing. Instead of calling people with autism high or low functioning, DSM
distinguishes three functional levels based on the amount of support they need.
According to that, my kids are at Level 3, which means they require a great deal of
support.

How did you find out they had autism? What were the warning signs?
Was it easy to diagnose?

As a baby, Áron cried a lot, which was very frustrating. Since I was a new mother, I
worried about him all the time. He cried when I tried to nurse him. He cried when we put
him to bed. He cried more when we picked him up. The doctors said he had baby (or
infantile) colic, but otherwise he was healthy. When he turned 2 months old, things got
better. He babbled a lot and always wanted our company. He loved to hum children’s
songs, and his favorite thing was twirling balls or other objects. Mostly, he kept to
himself. I had doubts, but he was my first child, and I didn’t have any company with a kid
the same age to compare. He was one and a half when we went to playgrounds. That was
where I realized it immediately. Other kids played or swung together, while mine was
constantly running around and did everything just for 10 seconds. I talked about my
uncertainties, but my family claimed that nothing was wrong, that I was being an
overzealous mother. Our district nurse visited us regularly, and she told us that Áron had
developmental delays in speech and gestures. She said it might mean nothing, but we had
to take him to a developmental screening. The Early Intervention Center in Budapest
became our second home for the next 7 years. There was a long waitlist, and our
problems were not considered severe. Meanwhile Áron showed some progress in the
areas of speech and behavior, but he wasn’t flexible and had compulsions. For example,
he would always walk the same route, he did not like boarding certain vehicles like trolley
buses, he did not like putting on new types of clothes (like boots on the first snowy day of
winter), or he insisted on putting on his left shoe first. He was aggressive and kept hitting
me, but only me. He became very sensitive to noises. He got scared easily and screamed.
We didn’t know at the time, but it’s quite unusual to give an ASD (autism spectrum
disorder) diagnosis to a child that young. They said he suffered from pervasive
developmental disease. Over a year later he got a diagnosis of ASD, which meant we were
entitled to a higher children benefit.

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Our second child Norbert was 5 months old at that time, so he grew up under the close
observation of the family members and special-needs teachers, since I had to take
Norbert with us whenever I took Áron to therapy. Norbert was great at imitation, which is
rarely seen in children with autism. He also asked for help properly, which is seldom, so
that gave us hope. Still, his eye contact got worse, which was a bad sign. He was
diagnosed with autism at 2½ years old. The chances of autism among siblings are high.

What are some misconceptions people have about autism?

My favorite one is “They will grow out of it.” I have to explain all the time that autistic
children will grow to be autistic adults, although this is very painful to think about. My
second favorite misconception is when so-called experts say that autistic kids need love
and patience, or being loved more will help them. Well, we love them to death, but they
are still autistic. The third one is that homeopathy / diets / medicine / acupuncture /
shamans / holy water / bioresonance therapy / meditation / yoga / pi water /
kinesiology / vitamins / fitotherapy or craniosacralis massage therapy will cure them, and
we must try these cures. As if we haven’t tried everything within our means already!

Sometimes they ask, “What are his special skills, talents and abilities?” From watching the
film Rain Man, they figure autistic people have photographic memories, math skills, or at
least musical ability. They don’t know that half of all autistic people are mentally disabled.

Sometimes they blame it on our parenting and personalities. When Áron was 2, my sister
blamed me for talking too much, saying this inhibited his speech. I also love clever pieces
of advice like sing for him more, talk to him more, be more loving, or be more consistent.
Or, on the contrary, I should force them to eat food they can’t stand, punish them until
they behave or talk properly, and so on.

What is a typical daily routine for you and your children?

School days and holidays have different routines, but Norbert, gets up really early, around
5, anyway. This is necessary on schooldays, because I have to make their meals. They are
on a special gluten- and casein-free diet. (These are proteins in flour and milk products.)
This is the only miraculous cure we use. Áron eats only four types of main dishes, so he
has to take his own lunch to school, while Norbert eats mostly the dietary lunches
provided by the school cafeteria. He also takes some boiled potatoes for backup in case
he doesn’t like what they offer. I prefer them to take freshly cooked food, so I prepare
their lunch usually in the morning.

Meanwhile the children have breakfast. Norbert is a morning person, usually dynamic at
this time. He eats fast, watches TV, and reads his books (meaning he turns the pages,
because he can’t read and speak at all). Áron wakes up grumpy, screams, or goes into his
regular tantrums. He eats slowly and complains about not having enough time to listen to
his music. He is able to speak in short sentences, but usually what he says makes no sense
to other people. It’s called “word salad”, but we can understand him. He picks up phrases
from songs or poems that he likes.

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They are not potty-trained – well, actually, Áron is, but he’s having a regression in that
field. I have to change their diapers. I have to have them take medicine, their vitamins,
and their dietary supplements. I have them brush their teeth, which is basically me
brushing their teeth for a better result. I pack their backpacks and have them get dressed.
Áron is very independent, but I have to help Norbert a lot. Meanwhile, I need some time
to get myself ready somehow. Then, I get them to stop screaming about going to school.
We should leave our place at 7:15. The kids go to the same school and to the same class.
They don’t get on the tram (especially Norbert) unless I give them some of their favorite
snacks (e.g., small pretzels or gummy candy). Both taking them to school and picking
them up in the afternoon are kind of tiring. My husband and I share these tasks. Usually, I
take 2 mornings and 3 afternoons.

Do you receive any support from friends or family members?

Is your husband able to help out?

We don’t have a big family around us. I have a mom who still works. My husband’s
mother is retired, but she has health problems. Both my father and my husband’s died
before we had any kids. The grandmothers (and also my mother’s sister) help a lot. They
take care of them if they are sick and can’t go to school. Sometimes they take care of
them on weekends, so I can go to the movies with my husband. They are not able to take
the kids to school or to a playground, because that occasionally requires physical strength
which they don’t have.

My husband, who is a special education teacher, shares the parenting tasks. Actually, he
does more than his share, because sometimes I have to work long hours. Both of us work
only 6 hours a day, which really comes in handy. He is very good with kids, very patient
(not like me) and indulgent.

Do your children receive any special education or counseling? 

What kind of expert care is available in Hungary?

Áron went to regular kindergarten, but when we tried to find a school for him, we
decided on special-needs school. Since Norbert is not potty-trained and non-verbal, we
didn’t have a choice. He had to go to a special-needs school.

There is a wide range of available therapy in Hungary if you have money. Nothing in this
field is covered by Hungarian Health Care. Autism is a health problem, but special-needs
teachers work in education, not in the medical field.

We have been in this situation for 10 years. In this period we have tried Son-rise (which
was very good, but we didn’t have the required time and money), Floor-Time (also good,
more realistic requirements, but still costly), GFCF diet (which I mentioned before, also
costly), TSMT (a sensory integration therapy, which was very useful, but it required so
much time and commitment, we couldn’t really do it, and it was costly). There is also
hippotherapy, which is horse riding. I didn’t find it useful at all, but it was free and Áron
loved it). ABA (Applied Behavioral Analysis) is said to be useful, but we haven’t tried it,
because it’s expensive. Then, there are al the holistic treatments, which we don’t trust,
and GAP dieting, which has health risks for the child.

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None of these therapies I’ve mentioned are proven to help autism. The officially approved
therapies and methods are the TEACCH programs (and PECS communication), social skills
classes, and occupational therapy. There are institutes that hold classes for parents and
parent self help groups about these methods, and they are mostly free. Áron goes to play
therapy session once a week for two hours, which he loves very much. It’s a bit costly, but
we are able to pay for this one.

Have you had trouble with caretakers or educators?

Do you have any good tips for cooperating with them effectively?

Over the 10 years, we have had some trouble with caretakers. Two years ago, at the same
school we’re attending now, the kids were in the same class for the first time in their life,
and we had the worst team of special-needs teachers ever. I wish I had some good tip for
cooperating with them. I tried being nice. We brought flowers occasionally, sometimes
presents, and I kept my mouth shut. I didn’t complain about anything. None of that
worked. Then, I tried being assertive, even arrogant, but that didn’t work, either. Finally, I
went to the principal, who tried to help us communicate better. I ‘m happy I haven’t seen
them again.

Cooperation between parents and teachers should be easy, because our goals are the
same. In the last year and a half, we’ve had great relationships with our teachers. They
communicate well with us and among themselves. They hold regular meetings and share
their views about our kids’ problems. We decide on the goals together. They are always
open to discussion. Not all of them specialized in autism, but the key is not the
specialization. They aren’t easily daunted or discouraged. They are very young, yet smart,
loving, caring, even motherly! We feel very lucky to be in this class.

What has been one of the worst setbacks or hardest challenges so far?

Probably the worst challenge was when Áron was expelled from the first special school
we attended after his second week. They suggested home-schooling for him. They only
allowed him to be there one hour a day. I had to take him there, pick him up, and take
care of him the whole day, so I couldn’t work anymore. It was the most difficult time in
my life, I think. For one thing, I loved my job. It gave me a sense of accomplishment and
appreciation, and I had a good salary. I felt I had lost everything. I had a nervous break-
down. It took me 2 months to realize that the teachers weren’t going to change their
opinion of Áron, no matter what he did. That’s when we started looking for a new school.

Two years ago, our younger child Norbert’s behavior changed dramatically. He was
always nice, happy and balanced like a little Buddha. Then, he became auto-aggressive.
He kept hitting himself. He hit his face, his chin, his temple and his forehead, sometimes
his thighs. He had bruises from blue to green and purple everywhere. He looked like a
professional boxer or an abused child. We were completely clueless and helpless. Finally,
we realized it was necessary to change his medication to heavy doses of antipsychotic
drugs. It was a very difficult decision because of the known side effects. It has helped, but
we still have problems with his aggression.

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There are setbacks in our everyday life as well. The kids can’t stand the dentist, so they
have to have all their dental work under anesthesia. Norbert had a sprained ankle once,
and we couldn’t have it examined with an x-ray machine. Two helpers and a guard were
not enough to restrain him. Simple blood tests are not simple with our kids. Public
transportation can be difficult with them. Same with shopping or being at a playground.
They are unpredictable, so we are under stress all the time.

In her book Ten Things Every Child With Autism Wishes You Knew, author Ellen Notbohm
writes that parents with autism must raise their children with infinite patience and
unconditional love, but this is a very tall order. What are some of the negative feelings you
have had to deal with since your children were diagnosed with autism?

In the parents’ group, they teach you to realize the positive effect on your life that being
the mother of a special-needs child can have. There are some, you know: “It is only with
the heart that one can see rightly; what is essential is invisible to the eye.”

Being under constant stress, everybody reacts differently. The number of divorces in
families with special-needs children is much higher than usual. These families are often
poorer, because one parent sometimes has to stay at home.

It is really scary to realize how many bad feelings I had at the very difficult moments of
our life. I wish I hadn’t had a baby. I wish I hadn’t had the second baby. I wish I hadn’t met
my husband. I wish I had married someone else. I wish I could live somebody else’s life.
I feel I’m in a trap. I’m powerless to change things. I cannot control my life. I cannot plan
anything in my life. I blame my children, because I cannot live the life I’d like to live. They
aren’t grateful, and yet I do so much for them.

I am very worried about their future. What if I get sick? What if I die? Who will take care
of them? Norbert has a high chance of developing epilepsy in a couple of years. How
could we manage that? What if they get so big and strong that we can’t restrain them?
How much do we have to drug them? Where will the four of us be in ten years?