Autism Diagnosis: Dreaming a New Dream

victoria-feinerman This is a guest post by Victoria Feinerman.

When our son, Z, was 13 months old, we took him to the pediatrician. We were concerned that he had only learned a couple of words, never pointed to items of interest, and failed to look at things pointed out to him. The doctor replied that we should return when Z was 18 months old, to give him a chance to learn more language.

Time passed, and there was no progress. Z stopped using the few words he knew. By 17 months, we were convinced that something was terribly wrong, and we returned to the doctor and told him we could wait no longer. He referred us to Hitpatchut HaYeled (Child Development), where a pediatric neurologist informed us that our son has a communication problem and referred us to further testing at another Hitpatchut HaYeled branch.

After our meeting with the neurologist, we came home and looked up “communication problems” online. And as we read the description of autism, our world turned upside down. The kid described online — that was our kid. Now I think of that time as the beginning of mourning period number one.

A month later, the pediatric neurologist at the new “Hitpatchut HaYeled” informed us that our child likely had autism, confirming our fears. This was the start of mourning period number two. A month after that, we had a final diagnosis: Autistic Disorder. So started mourning period number threee.

Why all these mourning periods? Sure, it’s sad when your child is diagnosed with an incurable lifelong disability, but mourning? No one died, right?

Wrong. Someone did die: The kid we thought we had. He is gone forever. The kid who we thought would run around with friends at the park, attend our older kids’ school, go to summer camp, participate in school plays . . . He’s gone.

Yes, he was an imaginary child who never existed other than in our minds, but we believed in him and loved him, and upon his departure we mourned him.

And so, mourning, we started our hectic new lives. We continued working, parenting, running a household, and meeting our responsibilities to extended family and friends, while going to a never-ending series of follow-up tests and appointments. We traversed the red tape of Bituach Leumi (Social Security), the tax authorities, the municipality, and the Welfare Ministry. We had a team of five therapists start a therapy program in our home, 30 hours a week.

It was particularly difficult to hear therapists praising Z’s progress, when the skills he’d learned were basic things that any regular kid could do. We were expected to celebrate Z’s ability to hand someone a spoon when asked to do so. Certainly the kid we thought we had could have done that.

We continued mourning for around a year. But something happened as time wore on. We let go of the kid we thought we had, and we gradually came to know the kid we actually do have — and discovered how wonderful and special and precious he is.

We celebrate each new skill he acquires, each step he makes towards independence and success, without comparing his achievements to those that our thought-we-had kid would have accomplished in the blink of a nonexistent eye.

I think most parents discover at some point that their kid is not the person that they had fantasized — a famous doctor, a renowned scientist, the next prime minister. A child is who he or she is, not who their parents dream they’ll be. We just discovered this sooner and more dramatically. This is not to say that we have no dreams for our son, just that they have changed.

Our wish for Z is to be all that he can be, to fulfill his potential. And who is to say that his potential is any less spectacular than that of the kid we thought we had, that figment of our imagination who never actually existed to begin with?


Victoria Feinerman is the mother of four beautiful children, the youngest of whom has autism. She works as a professional voice talent, recording voice overs from her home studio. You can visit her at vicsvoice.com.

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Comments

  1. Thank you Victoria for writing this post. As you rightly point out, each parent has some mourning to do when dealing with their own kids. Which does not mean that kids with particular needs shouldn’t get specific treatment just like your own kid does. How old is Z now?

  2. Hi Ilana-Davita,
    Z is almost 3 now. He has come a very, very long way, B”H, though there is still a lot of work ahead.

  3. This is a beautiful and thought provoking post. I can learn alot from you for dealing with my “neurotypical” children. That I have to let go of the children I thougth I had and appreciate and cherish what I do have. I had all these plans for my kids befor I had them and I have had to learn that they are people with their own ideas, plans and dreams.
    Thank you for writing this and TY MIL for posting it.

  4. Thanks, Ariela 🙂
    I think this definitely applies to neurotypical kids, as well.

  5. I just read a fascinating book that might interest you. It is the memoirs of a man with Asperger’s syndrome – called something like “Look me in the eye”.

  6. Thank you, Victoria, for sharing your story with us. Good luck to all of you.

  7. Ariela, that sounds interesting. I will definitely look it up.
    Hannah, my pleasure, and thank you for the opportunity!

  8. Terrifc post! Thank you.

  9. Nurse Yachne says:

    I’d like to take this opportunity to recommend Martha Beck’s “Expecting Adam”. It deals with expectations, images, prejudice, and magic. It is also the funniest, most renewing book I have ever read. Kind of a hasgacha pratit book for a general audience.

    It will make you laugh at yourself and everybody else. I re-read it at least once a year and it still cracks me up.

  10. Vicky, thank you for this brave post. Yes, it certainly validates everything we went through with our second son, D. I’ve posted my story about him here on MII’s blog but I can’t remember where. Perhaps Hannah can find it for you?

    My experience probably won’t help you much now because our son is now 24, and things have changed dramatically in the last 20 years in all fields of medicine. However, if it helps to reassure you any, we went through almost identical trials and diagnoses when D was 18 months through 3 years. We also went to the doctor, numerous ivchunim, hitpatchut hayeled (when it was still in its diapers. I would meet the doctor in the corridor of the Sharon – no Schneider in those days – and we would knock on office doors until we found an empty room. That was hitpatchut hayeled – me and the doctor!). The doctor was almost an angel in disguise. He never fully diagnosed D though he did specify autistic tendencies, and simply ordered treatment of all kinds: speech, physical, occupational, which we provided both through Kupat Holim and privately where necessary. At one point D was getting speech therapy 6 6 times a week – 5 times a week in gan and once a week in the hospital (through a bureaucratic glitch that worked in our favour for a change).

    D eventually went to a Gan Sfati here in PT, and then graduated at age 7 to a kita meshulevet in Yavneh. From their he moved to Noam, and graduated from the Noam high school with full bagrut, majoring in computers. He went to a mechina for a year, and then 3 years in the IDF in Field Intelligence and tzanchanim. He is now working in an internet company and is about to start studying computers in Ariel. He has had a long-term girlfriend (unfortunately just broken up).

    All this is not to brag (though we get a huge amount of nachas from him) but to show you not to lose hope, and that miracles can and do happen, especially with the right attitude from the parents and the treatment from everywhere you can get it.

    I wish you all lots of koach and hatzlacha raba.

  11. Vicky – you guys are an inspiration with your dedication, your resolve and your love. Great post.

  12. annie, thanks so much for sharing this. It is wonderful to hear about successes; they give me hope!
    lauram, thank you very much 🙂
    Nurse Yachne, I could use a good laugh – I’ll look it up

  13. Ilana, thank you for reading!

  14. Victoria-
    I want you to know that I have two boys, both on the autism spectrum, so what I am about to say comes from over 15 years of experience. MIRACLES do happen and with the right combination of medication, therapy and support, these children are able to go above and beyond anything that anyone expects of them.

    My oldest was diagnosed at 5 with PDD-NOS. Noone ever knew what was going on with him (remember this was 15 years ago) so he never recieved any early intervention. He was extremely bright and hyperlexic,but with understanding of what he read, however terribly speech delayed.But as soon as we knew what was wrong we did what we had to. We live in the US, so we moved to a better school district that would provide him the support he would need and we found good therapists and support services. Since we knew what to look for as the younger one aged we knew that there was a problem and he was able to get the help he needed much earlier.

    We still provide extra support for our boys beyond school, but the oldest is also a junior in college bent on a career where he helps others.(So much for the thought that autistics don’t understand and have compassion) The younger one is going to go to college, but as any typical 16 year old (even though he is not technically one)has no idea what that is going to be.

    I just wanted you to know that sometimes good things can happen and even though they are still delayed behind their peers,(i.e. the oldest livs at home for college and the younger one will as well) it doesn’t mean that one day it will all catch up and be as self-sufficient as any adult. Also please do celebrate every milestone. Just because it is suppsoed to come naturally and it doesn’t, doesn’t mean it isn’t a great achievement.

    As far as the mourning is concerned. I hope that you are not feeling guilty. We ALL mourn the child we had hoped that they would be. It is not a selfish thing on our part. It is the same for any parent who recognizes that their child has been given a harder path than is necessary and one that noone truly knows how it will turn out.In fact the mourning is a topic that we talk about quite alot among my support group.

    If you or anyone you know have any questions or want to know about certain therapies, one of the things I do for people is send them in the right direction for information. I am also a volunteer advocate (which doesn’t really apply to Israel) but we are also a group on twitter called The Coffee Klatch. We are parents of special needs children and we offer each other support worldwide. Go to our website
    http://thecoffeeklatch.com to find out about us. Tell your friends about us too. We are there to help everyone.We discuss every issue and if there is one that you would like to see let us know and we will set up a program.

    I have a motto: Do not project what will be, take each moment as it comes and one day you will look back and see just how far your child has come. It’s amazing how it really works.

    Take care, and if you have a question about anything reach me through my email or through my blog.

  15. I have two children with autistm (ages 7 and 10) and I appreciate your article. I have often wondered what sort of awareness and services are available abroad (I’m in the US) and I’m very glad to hear that there are support systems for your family. Isolation is the hardest part. There was a time when I just couldn’t leave the house, and it’s still a challenge since my daughter is low functioning and non verbal. Please continue to share your story.

    • Stirling, I’m very glad the article spoke to you.
      For quite a while, I could not leave the house either, and it seemed like none of my friends understood why it was such a problem. That made me feel that I was not only physically isolated, but socially and emotionally isolated as well. I can now leave the house, but like you said, it can be a challenge…!

    • All of these comments are helpful and inspiring i have a 12yr old with aspergers and now a 2yr old who isint talking much and there are word she use to know and now doesnt say at all of corse i was concerned but she was tested and i was told to come back in 6mo if she didnt start talking more is there a something eles i should b doig? i am also in the u.s

      thanks for sharing

      • Hi Julie,
        I’m no expert but it sounds to me like you should get a second opinion. There is a doctor in Virginia (?) who is an expert at diagnosing speech delays, Dr. Camarata. If you do a search for him you will also find a lot of info.

      • Please do not wait 6 months. If your child is loosing speech there is alot that you can do for her. First of all do get her into speech therapy. The fact that she has an older sibling with autism should be an indicator for any therapist worth their salt. A good therapist will introduce baby sign language for her and teach her how to use it. My girlfriend’s youngest son had the same issue and the baby sin language helped him until he was able to verbalize properly.

        I do not know where you are located but your state should have early intervention services. I would look into those. There are some good major hospitals that specialize in autism. In Connecticut at Yale with Ami Klim, Kennedy-Krieger in Baltimore, UCLA Mind Institute in LA. Also if you are near any teaching hospitals I would contact the adolescent psychiatric department and ask for a recommendation for an early intervention specialist.

        It is very important to remember that girls present autism differently than boys and most do not know these signs. I am not saying that she has autism, but so many girls with issues of all kinds, are missed because quite frankly they are girls. For more information go to Autism Women’s Network. There are chapters all over the US and even in Israel.

        Also I am a volunteer autism advocate. Contact me at asd2mom@live.com. Maybe I can help even more through email.

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