When grownups don’t speak: Why we can’t celebrate our daughter

It’s that time of the year again, that time when we think back on everything that has happened since last time we celebrated New Year’s Eve. It’s been a pretty eventful year for my family. That includes some negative experiences, but I’m trying to focus on the positive. At the same time it makes me sad not being able to share the good news with others. I am after all very proud of my daughter.

Talk About Curing Autism (TACA) is an organization that helps parents raising children on the autism spectrum. They have been celebrating the successes and victories their children and teenagers have had this year. The parents responded to this challenge:

What accomplishment are you celebrating this year?
Send your child’s photo, their first name and their accomplishment, to
Holly@tacanow.org so that more families can celebrate with you, cheer your child on from afar and find hope for their own family thanks to your child’s successes.

Here are some excerpts from the answers:

  • Four year old Sean still didn’t speak any words in February this year, but thanks to a gluten and caseinfree diet, different types of therapy and support from TACA he has learned many words during this year, including mommy, which he said for the first time in August.
  • Vincent and Victor (I think they are twins) managed to watch their sister perform in the Nutcracker this year for the first time in ten years. They were able to sit still through the entire show and they were also focused on what happened on stage. This is a known challenge for parents of autistic children, and just as big a victory when they succeed after both parents and children have been working hard for years.
  • Tyler is a five year old boy who started talking and playing with other children in 2015. This was a major victory as he had previously been worried children his own age would hurt him. He had made some bad experiences in his class room, but everything changed for the better this year. The family thank TACA and other families for their support. You can read more on the TACA facebook page.

Our daughter has made remarkable progress this year. This is actually an understatement because she keeps reaching new milestones. There are multiple reasons for that, but I’d like to mention a dairy and gluten-free diet, a good cooperation with doctor and school, as well as activities like ballet and therapeutic horse back riding. We have clearly done something right and I believe we can keep the momentum for 2016. I have been pleased and relieved with the advances we have seen this year, and I have written about it on my blog. I didn’t think this would be negative as my angle was a positive one, but it turned out to be.

We were reported to The Child Protection Services last summer, and one of the justifications for the concern was that I had published a photo and my daughter’s first name on this blog and on facebook. It was also held against us that we had mentioned her disability and the things we had done to combat her challenges. I wish we could add her photo and name to the others on the TACA facebook page, and thus celebrate her success this year, but we dare not because we know we risk another report to CPS. This would supposedly be a violation of her privacy. The report last summer also claimed that using words like handicap, disability and challenges publicly was a violation. According to the critics it teaches her to become a victim. We have to stop talking about her, as if we are ashamed of our daughter.

Autism is about people that don’t communicate quite like others, and they are nonverbal longer than than other children. It is sad when other adults stop talking about autism. We may pretend that we live in a world where we are all within a normal variation of the human genome, but that’s not quite the reality my daughter is likely to face. The fact that we don’t talk doesn’t make something go away, but it is likely to make it worse. I hope it will improve in 2016, but my plan is to help my daughter fight her own battles. It would be nice if grownups talked and listened more to parents and autism organizations in 2016. That could reduce the need for combat skills.

We may be forced to be less public, but giving up is not an option. I have great hope that our momentum will continue in 2016.

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3 thoughts on “When grownups don’t speak: Why we can’t celebrate our daughter

  1. John,

    I am so sorry, and also outraged on behalf of you, your wife, and your daughter that you are not free to publicly celebrate your daughter’s accomplishments openly as other parents do.

    It is so sad that other people are ashamed of their disabled family members. It was such attitudes of shame that in the past resulted in families hiding and basically incarcerating their disabled family members in attics because they felt that the disability made the family “look bad.”

    It is so sad, John, that in 2016, these attitudes are still with us…….to the point that individuals would use the CPS as a means to hide, deny, and shame their disabled family member (and her parents) into obscurity and shame.

    I admire and applaud your refusal to bow to this out-dated, narrow-minded, small-hearted, mean-spirited, and destructive attitudes and attempts to force your child into a 21st century “attic of shame.” I applaud the ways in which you go about resisting the discriminatory means to bully your family into silence, yet simultaneously protecting them from the onslaughts of ignorance and meanness.

    I wonder if the individuals who seek you silence and shame you realize that they have awakened the heart of a warrior, if they are serving as the fire that creates an unrelenting activist in you?

    Wouldn’t it be ironic if someday, the little girl they are so ashamed of grew into a fighter, an activist like her father, who refused to be silent? Wouldn’t that just be so ironic……..that the very efforts that are expended to silence her, shame her, hide her, limit her may someday serve as the very catalyst to maybe even be a spokesperson and activist for other disabled people (like Temple Grandin)?

    Sometimes, John, our opposition fails to realize that the fires and trials and tribulations and adversity they send our way, hoping to deter us, to discourage us, are what strengthens our steel, hardens our will, and sharpens our tongues, our wits, our sheer survival? But then……those who never face this kind of opposition, would never grasp such a concept.

    I leave you with the following:

    “It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.”

    Theodore Roosevelt

    I can’t wait to see what strides your little young lady will make this year! Her family on the other side of the ocean is very proud of her……….and we don’t feel the need to be ashamed of her disability.

  2. Thank you for those kind words. My wife has been talking about her family and extended family in the USA for ages. I usually just nod my head as if I completely understand, but I don’t really. I have always known what her family, and you, meant to her, but this relationship has been a mystery to me. My in-laws were nice to me, but apart from that there seems to have been a mutual agreement to keep a distance. I have to admit that I can be rather skeptical to people myself. I’m a bit like my daughter’s cat. People are alright when I am in the right mood. I guess we were never in the right mood at the same time.

    I sometimes think I do, but I’m not always convinced that I want that kind of bonding myself. There is usually a price to pay, but I am starting to see what my wife meant, a kind of at least. I have a tendency to be very rigid about boundaries and rules, which includes family matters. I have been struggling to see brothers/sisters in law as my siblings, and I certainly have struggled getting used to the idea of having a singularly long sister (extended family). One family is enough work. Most people have to deal with two and now we start looking elsewhere as well. I suppose it only feels like that because we are so far apart and never talk. I am not good at sustaining contacts, so I have to start over again every time.

    I have thought sometimes that perhaps it would have been better if we moved to the USA. We would after all have more support there and my wife would get to be with her family again. Maybe I’d be pleasantly surprised myself, but we decided to stay where we are. It is nice to know we have support from afar. Thank you again.

  3. John,

    You are welcome. I can how it is hard for you to understand Eva’s close relationship with her brothers and sister. From reading past blog postings you have written about your childhood, and the negative responses you have received from your own family members to the challenges that you and your wife and daughter faced over the year, it makes complete sense to me that you have difficulty relating to the sorts of relationships that Eva has with her siblings and with me.

    Your siblings, as I understand it, do not behave in a loving, supportive way, unless you conform to their demands to hide your child’s disability and be ashamed of her, or to be silent about the racism that you and Eva have encountered. How can you relate to such relationships that Eva has, if you never had an opportunity to have those relationships? Your experiences are not really with loving siblings. People who really love you do not require such things, or punish you, your wife, and child because they don’t agree with you. Such experiences with sibling relationships pre-dispose you to having difficulties forming such relationships. And that’s not your fault. Sadly, you didn’t get choose your siblings. Nor is there any way for you to force them to change, to treat you differently, or truly love you. That’s their choice. Maybe they’re just not capable of loving another person. But that doesn’t apply to you. Obviously, you have no problem loving others, as you have had no difficulty bonding with your wife, daughter, and mother and treating them in loving, compassionate, and supportive ways.

    And while we’re on the topic of family and in-laws, your Arkie Sister would like to celebrate the achievements of her Norwegian Niece:

    I will refer to her as T, as some people think it is wrong to mention her by name.

    CELEBRATING T, age 10

    1. She made two new friends, one of whom is in 7th grade and is therefore older than she is.

    2. After starting out struggling with some of the moves because of her fine/gross motor skills delays, we started her on Vit. B12 treatments, and within weeks, she was dancing as well as the other girls. As a result, she was able to perform her part in the Christmas Concert, which was aired on local television.

    3. She is now functioning at grade level in every subject except math. ( actually, she is above grade level in English)

    4. T started horseback riding in October, and she will be performing in the end-of-semester riding show. She is very, very skilled with handling the horses, can mount without assistance, has learned to make her horse trot and canter, and her confidence level, already high, has soared even higher.

    5. T choreographed a ballet dance routine, which she performed at the class parent-student Christmas party in the school gym.

    Since you all can’t post her accomplishments publicly……..I thought I would. It’s not like they can report me to the Barnevernet (CPS) ! It’s not fair to T that her parents aren’t allowed to do this for her. Maybe the work you are doing now will help her generation make some changes that allow Norwegian parents to bring their disabled children into the 21st century! 🙂

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