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Aug 12 2014

Why Does My Son With Tourettes Have to Fight to be Accepted?

By at 3:32 pm

Walk-for-life

At my son’s friend’s middle school, a student came down with leukemia after fall semester. Fortunately, he went into remission in spring and was able to return to school. All the students were called to an assembly before he returned to explain why this student would be without hair, what had happened to him, and how they could best make him feel comfortable and assist him with the transition back into school. The school also planned a walk to raise money for childhood leukemia.

This boy walked into school and was immediately accepted. This is the model for which we should strive for all of our children facing any kind of health issue.

Over a year ago, my family faced a frightening medical situation. Almost overnight it seemed my 11-year-old son’s body started to shake and convulse, his speech became slurred at times, he started to repeat curse words over and over, and his body made odd movements and noises. Read the rest of this entry →

Aug 7 2014

Electroconvulsive Therapy Saved My Life & Helped Me Be Myself Again

By at 2:58 pm

Risa-hospital

After months of worsening depression and intense psychotherapy, it was an email I sent to my psychiatrist that was the last straw. I simply told her, once again, how lonely I felt and how much pain I was in. She called and told me it was time to go to the hospital–I had suffered enough.

Just a few hours later I was in the Psych ER being evaluated and then admitted.

Terrified and emotionally exhausted, I was shown to my room. I don’t remember how I slept that night but when I woke and met with my treatment team, I was immediately brought to tears. My doctor was calm and cool while he presented my options. The first was to try a different class of medication, pretty much the only medication I had not yet tried. One issue: I would first need to get off of my current medications and there were dietary issues, such as certain cheeses and chocolate that cannot be consumed. I looked at my doctor with a straight face and told him there was no way I could cut out chocolate. Luckily, he smiled and offered me a second option. Read the rest of this entry →

Apr 1 2014

After Eight Months of Therapy, My Boy Can Walk!

By at 9:58 am

kanowitz2

Usually adjusting to a new normal has a negative connotation–getting used to life with illness or loss. But I find myself trying to adapt to a new normal that is happy and, well, literally normal.

In August, I wrote about how my 1-year-old couldn’t sit himself up and had to start physical therapy to help him get moving. I knew at the time that he’d continue therapy until he could crawl, and I figured that meant a few visits. Eight and a half months later, we can finally stop. Jared can walk on his own.

It goes without saying that I am elated. I don’t have to watch him cry through his visits or struggle to get where he wants to go. I don’t have to wonder if he will need to be put under anesthesia for an MRI, which would have been the next step, a pediatric neurologist told me last week. He examined Jared and couldn’t offer any explanation for why he wouldn’t walk without help. Read the rest of this entry →

Mar 7 2014

It’s Time to Fight the Stigma of Mental Illness

By at 12:52 pm

therapy1

As a social worker, I have always been about combating the stigma of mental illness. As a human being, I have been passionate about it. As someone with an actual diagnosis of depression, it is always on my mind.

Why is there still a stigma?

I do not want my daughter to grow up whispering the word, “depression;” I want there to be open conversations where people can talk about illness–any illness–and not feel isolated as a result. When someone talks about controlling his or her diabetes, that is more accepted than someone talking about depression. It scares people. But why? Obviously society and environment has created this. Why is it that I have to pay hundreds and hundreds of dollars to my psychiatrist because my health insurance has a deductible and then will only cover 80% (which is actually a good deal!)? When will this stop? The more it is talked about, the more mainstream the conversation will become. Read the rest of this entry →

Feb 27 2014

After Raising a Son With Severe Autism, I Have Redefined “Normal”

By at 12:52 pm
elaine-and-neil

Courtesy of Elaine Hall

 

As part of our month-long series dedicated to Jewish Disability Awareness Month, Elaine shares her journey of raising a son with severe autism, from toddlerhood through bar mitzvah age to where he’s at now, at almost 20 years old.

Our tradition dictates: “Be fruitful and multiply.” I couldn’t do either. Each year at Rosh Hashanah, where we read Hannah’s story of her inability to give birth, I cried Hannah’s tears. I prayed, “If you give me a child, I will give him back to you, to serve you all his days.” My prayer was finally answered when I adopted my son from an orphanage in Russia.

I had been raised in a religious ”Conservadox” family in a non-Jewish area of Southern Maryland and had felt different all my life. Now, I just wanted normal. I looked forward to returning to LA and beginning a normal life: car pool, little league, Tot Shabbat. On a blissful flight home across many continents, I had no idea what lay ahead of us.

Reality set in quickly. We discovered that our toddler son had liver toxicity, parasites, malnutrition, and he was spiking fevers of 105. He stared at his hands for hours at a time, spun around in circles, opened/closed and banged cabinet doors, made no eye contact, couldn’t speak, tantrumed for hours, and didn’t sleep. Read the rest of this entry →

Feb 25 2014

I Find Myself Defending Teachers at the Hair Salon (and Everywhere Else!)

By at 3:58 pm

hair-salon

The next time someone asks me what I do for a living, I plan to say that I’m a dental hygienist. Maybe a carpet salesman. A baker? Hmm… that’s an idea. Who doesn’t love cookies? It’s too bad that I’m a terrible liar.

I was mid-haircut the last time the question was posed to me. “I’m a guidance counselor,” I said, with a smile. I glanced around the salon and waited for the inevitable commentary to come. That train is never late.

“Well, you scored an easy gig!”

“Teachers have such nice hours. It’s like working part-time!”

“You have your own office, right?” Read the rest of this entry →

Feb 19 2014

Managing Motherhood & Depression Means Asking For Help

By at 9:56 am

sleeping-child

It was a day I will never forget. Last week, I was at work when I received a call from my daughter’s preschool. I was told that she is fine but she is saying she is very tired and is lying on the couch sucking her fingers (her go-to when nervous or tired). I said I would be right over. Since I work next door to the JCC where she attends, it makes it convenient.

I went over and sat to talk with her asking if anything hurt. She said “no.” I asked her if she wanted to go to dance class and she said “no.” Now I knew something was up, as she loves her dance class and dressing in her leotard and tutu. I asked if she wanted to go home and she said “yes.”

Once we were home and settled I felt and kissed her forehead but she felt cool. We had lunch and she ate heartily. We started watching the movie “Cars” and I turned to her and asked her if she was not only tired but was she missing mommy. I knew the response before she said it. She said “yes, I missed you.” Read the rest of this entry →

Oct 15 2013

I Missed the Autism Early Intervention Boat & That Might Have Been a Good Thing

By at 4:01 pm

autism definition in dictionary

It’s been nearly six years since my daughter was diagnosed with autism. Like many other parents who hear their children have life-long challenges ahead of them, my husband and I went through the seven stages of grief, but I also Googled. Furiously.

While I found no shortage of information, what I found by and large more than anything was that “early intervention” was key to improving the symptoms of autism (personally, I hate calling them behaviors because that makes it sound like it is something which can be controlled). Most websites I consulted say a version of the same thing:

“Early intervention is your child’s best hope for the future.” Getting critical therapy before the ages of 4 or 5 was key to helping them improve the core behavioral symptoms of autism (there’s that word again). I signed up for loads of parental forums on the topic and heard the word I most wanted to hear: cure. Early intervention, many parents said, could cure my daughter of autism.

My daughter had just turned 5 when she was diagnosed, so not only was she on the autism spectrum, but we had missed the cutoff age for her best hope for the future.

We were screwed. Read the rest of this entry →

May 21 2013

How Parents Can Cope with a Tragedy Like the Oklahoma Tornado

By at 4:26 pm

tornado damageIn the field of social work we use fancy phrases like “caregiver fatigue,” “compassion fatigue,” “secondary traumatic stress,” and “vicarious traumatization.”

They all mean somewhat different things, but they’re all pointing to the same phenomenon: the ways in which doctors, EMTS, social workers, nurses, and increasingly, teachers–anyone who tends to the wounded and traumatized on a regular basis–can, and do, get exhausted and burnt out. They may become depressed or angry, they may turn to alcohol or drugs to manage difficult feelings, and they may have a hard time with sleep, focus, and ability to attend to daily tasks, among other things. Read the rest of this entry →

Apr 11 2013

Why I Wouldn’t Let My Son be Labeled Special Needs

By at 2:37 pm

kindergarten boy with crayonMy oldest son didn’t really talk until he was almost 3. He said a couple of words, like “ite” for “light” and the requisite “Mama” and “Dada,” but he didn’t string them together into sentences, which he should have been doing by then. He also didn’t point at things. He just went and got what he needed himself. (I thought it was a good thing, honestly.)

He had an abnormally large head (it was literally off the charts when the doctor tracked it), and he could stand for up to 20 minutes at a time, just watching a leaf blow in the wind. Based on all of the above–and from 5,000 miles away in California, mind you–my mother diagnosed him as autistic. I brushed it off. But, then, our pediatrician suggested we get him checked out, too. Read the rest of this entry →

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