Jun 11

Go ahead, freak out

Let’s face it. You weren’t expecting ADHD, Autism, bipolar disorder, FASD, or any health issues classified as a neurobehavioral disorder. No one does. It comes at you suddenly, from behind, and with great force. It’s more than being blindsided; it’s like falling out of the boat, without a life-jacket, and without knowing how to swim. Oh, by the way, there are piranhas under that dark surface too. It’s unexpected and terrifying.

So what do you do when you’re not expecting a developmental or neurobehavioral diagnosis?

now_panic_and_freak_out__by_jweinstock-d3hvgozFreak out!

Go ahead. I’m not kidding. Freak out! Panic! Have a pity party.

Feel sorry for yourself, your child, and your family — it’s natural. Take some time to wallow in the fact that your in-utero plans for your child’s future have possibly changed altogether. I know that’s not the advice you expected, but you have to acknowledge and validate those feelings so you can move beyond the shock and grief and eventually reach a good place.

When you’ve cried until there are no more tears and taken in the “Why Me Monster” as though he is your new BFF, come back to the real world and start researching to discover your next steps to get on your way to successfully parenting a child with neurobehavioral special needs. Take as long as you need — there aren’t rules for this and the information will still be there when you’re ready.

First Things First

Okay, stop panicking now. While it feels like it initially, a behavioral disability diagnosis is nothing to panic about. In fact, I challenge you to celebrate the impending clarity that comes with diagnosis. There’s a certain amount of relief to finally knowing why your child is struggling.

There is one essential thing to remember when your child is first diagnosed. You are not alone. Say it with me, “I am not alone. I am not the only parent who struggles with this special brand of parenting.” You may even want to post it on your bathroom mirror and treat it like a personal affirmation for a while. It certainly won’t hurt. Parenting a child with special needs can be very isolating so you will need to consistently remind yourself that others know a similar journey.

Acceptance of your child, just the way they are, is crucial, now more than ever.

Grieve the Loss

I’m sure you visualized your child gloating about their latest “A,” or crossing the stage during college graduation at some point during your pregnancy or adoption process.  It’s an innate instinct to want the very best for our children and to visualize their life’s milestones very early.

A special needs diagnosis often initially feels like an abrupt end of many of your dreams for your child. Finding out your child has a disability establishes the possibility that all your dreams for them may not come true. But it doesn’t mean their dreams aren’t possible.

Let’s face it, receiving an ADHD, Autism, bi-polar, FASD, learning disability, etc. diagnosis for your child is tough. No, it’s not a terminal illness or a physical handicap, but that doesn’t mean you shouldn’t feel sorry and grieve. Your pain is valid, even if it isn’t as intense as someone else’s. You just found out your child has a neurological disorder — that something didn’t quite go right when their brain was developing — and that entitles you to a period of sorrow. If you weren’t upset about it, that would be something to worry about.

It’s natural to grieve when your child is diagnosed with any disability. Your world has changed — either your expectations have been shattered or you have come to the realization that the madness chaos is here to stay, at least somewhat. While it’s necessary to go through that period of grief, you also have to get beyond it. Feeling sorry long term doesn’t help the situation one bit.

Take a little time to be sad, angry, scared, heart-broken. Sit in a room alone for a couple days. Take a bubble bath until you shrivel. Cry. Scream. Recoil. It’s okay to be irrational for a few moments and let these feelings surface.  It’s even healthy, dare I say. Take a few days, maybe a week, to process and work through your feelings — then move on because wallowing is not going to help you or your child.

I sat in front of the T.V. alone in my bedroom and stared out the window for a couple days after my son’s ADHD diagnosis. I cried a lot and I have a faint memory of eating lots of ice cream. I tried not to think about ADHD, yet it was all I thought about for days. Years in fact, if I’m honest with myself.

Gratitude and positivity are the only roads to genuine happiness. For that is how we survive, and eventually thrive. It is easy to feel hopeless when parenting a special needs child. I decided wallowing in my sorrow wasn’t doing me, my son Ricochet, or anyone else any good. Denial and tears were not going to erase his ADHD and they weren’t going to teach us how to do the best for him either. So I chose to direct my compass toward the positive and I moved on to gathering knowledge, the next crucial step.

(Image from jweinstock on deviantart.com.)
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Feb 08

Guest post: Autism and My Child: Getting Familiar with What I Already Know

Mama Bear is the mother of 3 young boys, the oldest suffering from Bipolar 1 Disorder and the youngest diagnosed with depression and possible Aspergers Syndrome. I write a blog to let go of my pain and to help support others by letting them know they’re not alone. Her blog is here: http://mysonhas2brains.blogspot.com/

mapMy recent experience in having my youngest son assessed for autism spectrum disorder has taken me for a bumpy ride. At first, I went through a period of grieving that made it hard to eat and sleep. This was surprising since I never went through this stage with my oldest son when he was diagnosed with a mood disorder. Sure, I was devastated at times, but I didn’t struggle with a feeling of loss so abruptly. I think it was due to my desperate need for my oldest son’s rages to stop and my understanding early on that he had a brain problem. Where with my youngest, I had always believed it was just a stage that he would eventually outgrow. Next, I struggled with my guilt and shame for not seeing my son’s symptoms sooner, I felt like a terrible mother who now had 2 kids cursed with a disorder. As I started getting down to business, preparing for our appointment with the Neurologist, I was forced to face all the unknowns and to explore a world I was unfamiliar with. What followed was a long, slow exhale and a feeling of peace. Continue reading

Dec 12

Holy MTHFR!

If I say MTHFR, then Methylenetetrahydrofolate Reductase are the two words that pop into your brain, right? No? Well, hopefully after reading this, you’ll see more than that swear word that caught your attention.

If I next mention bipolar struggles, rapid mood swings, depression, anxiety, heart disease, strokes, macular degeneration, miscarriages – and any of these issues hit home for you, then read on, because you might just want to know about MethyleneTetraHydroFolate Reductase – better known by its abbreviation – MTHFR.

MTHFR is a gene and like all genes, it acts as a light switch – turning on or turning off various body processes. In this case, MTHFR takes folate (vitamin B9) and methylates (converts) it into methylfolate (5-methylTHF). Hardly seems like a big deal, does it? Yet, if you belong to an autism, Pandas, Lyme or chronic fatigue group, you’ve probably noticed a big buzz around this thing called methylation. While the past decade has seen MTHFR studied in terms of cardiovascular disease and cancer, it turns out it might also be a very big deal for those raising kids with developmental, neurological or behavioral symptoms and for those fighting chronic infections.

Methylwhat?

Continue reading

Jul 26

Technology Bridges Autism: Carly’s Voice

Carly Fleischmann was unable to communicate. Diagnosed with autism and related disorders by the age of two, she screamed, threw herself to the floor, smeared feces, moved constantly, and barely slept at night. An attentive family plus hours of daily therapy helped teach her rudiments like walking and feeding herself. Experts advised her parents to consider residential care.

But one day during a therapy session when she was ten years old, Carly reached for the computer. Slowly, using one finger, she typed

help

teeth

hurt.

Her therapists were astonished. It took months and much coaxing to get her to use the computer again (at that time, an augmentative communication device). But she began to recognize that communication was essential. Technology made it possible.

What emerged from her arduous single strokes on the keypad showed a girl who wasn’t mentally retarded, as her doctors suspected, but someone spirited, insightful, and intelligent. She wrote about wanting to have fun with normal kids. She asked to do things she’d always wanted to try. And she tried to convey what it was like to live in an autistic body. She explained that behaviors (like banging her head on the floor and bleating loudly) erupted from her like liquid would burst from a can of Coke when it had been shaken and opened. She said those behaviors helped block the sensory input of sight and sound that constantly overwhelmed her.

A few years ago, a segment about Carly’s new-found communication aired on 20/20

Now Carly uses technology to communicate with a world that’s ever more open to her. She keeps up with a busy Twitter  feed and Facebook fans. She answers questions, promotes autism awareness, and says that she feels part of a larger community by connecting with people through social media.

Technology allows Carly to share what she calls her “inner voice.” Check out Carly’s Cafe, an interactive web video, to experience a coffee shop as she experiences it. And take a look at the memoir she wrote with her father, Carly’s Voice: Breaking Through Autism, to better understand this bright engaging girl whose world unlocked thanks to a keyboard.

May 18

Guest post: For Special Needs Kids, “The Golden Rule,” Rules

Erin MacMillan-Ramirez is a graduate of the University of Southern California Rossier School of Education Master’s in Teaching online program which has recently added on a  Special Education Program. She lives in Houston, Texas and is currently working on a book about Autism and the education system in America. 

What do Spock (Star Trek), Mork (Mork and Mindy) and Abed (Community) all have in common? They are all television characters. They all rely on logic and take verbal interactions literally. They are all childlike innocents, and in the real world they would all be diagnosed with Asperger’s Syndrome. Mork would probably receive a diagnosis of ADHD as well. They are also written as the butt of every “error in logic” or “social misunderstanding” joke on their respective shows. Their natural curiosity, lack of social or verbal filters, and misunderstandings of social cues and sarcasm create the perfect set-up for great practical and verbal jokes on television shows. In the real world, it’s not very funny when people make fun of kids with special needs, but it happens all the time. Continue reading

Apr 03

Understanding Bloomers

A recent article by Linda Carroll, Outgrowing Autism? Study Looks at Why Some Kids “Bloom” highlights a new Pediatrics study of 6,795 California children showing that “about 10 percent of children who are severely affected by autism at age three seem to have ‘bloomed’ by age eight, leaving behind many of the condition’s crippling deficits.”

This article got my attention because my own twins, although never diagnosed with autism spectrum disorder, showed symptoms associated with Asperger’s by age 18 months but now, having just celebrated their eighth birthday, those symptoms seem like a distant bad dream we’d all like to forget.

Could I be the proud mother of a couple of bloomers?

Carroll’s article goes on to explain that when researchers looked at the characteristics of the bloomer’s families they found a few commonalities: bloomers tended not to have intellectual disabilities and their parents had more education and financial means to get early, intensive therapy. Mothers (fathers weren’t studied) had at least a high school education and came from a “higher socio-economic class.”

The anthology Easy to Love But Hard to Raise is full of parent’s stories, including my own, that share our ambitious, creative, and persistent search for solutions to our children’s behaviors and disorders, alongside the myriad of feelings that came with their diagnoses.

Parents who have been through it might question the use of the term “grown out of it” because it implies that the child might have shed their diagnosis simply with the passage of time. This article from February that studied 1,366 parents of autistic children suggests that 33 percent of children may downgrade their diagnosis to Asperger’s or shed their autism diagnosis altogether by age seven, but not without intensive parental support. Other previous studies have suggested that number lies between 3 and 25 percent. Parents of ETL kids understand that our children have improved because of our early, tenacious efforts and the help of teachers and professionals.

Another article published in Pediatrics in January supports the finding that children that “grow out” of autism tend not to have other physical and psychological diagnoses. Children with a hearing impairment were the most likely to shed the autism diagnosis because once their issues were addressed, the other autism-like symptoms resolved. This fact sheds light on the potential for misdiagnosis, which certainly exists when trying to diagnose children of preschool age and younger.

Can the study of autistic bloomers be extrapolated to children with other disorders? The answer seems to be the dreaded “it depends.” Psychologist Dr. Ari Tuckman’s video blog for ADDitude Magazine suggests that some children with Attention Deficit Hyperactivity Disorder (ADD/ADHD) improve because they learn to better manage their symptoms and their brains continue to develop and “tighten up” into their early 20’s. However, the majority of those with anxiety disorders report that severity can increase with age, although medication and cognitive behavioral therapy can help.

And what’s so magical about age seven or eight, the age by which these children are “growing out of” autism? Age seven is the beginning of a brain development phase termed The Period of Concrete Operations, a milestone of sorts, which lasts until around age twelve, where logic, organization, and problem-solving expand and egocentricity declines. Could more children be helped if diagnosed earlier? It’s too soon to tell but most studies suggest that the earlier the intervention, the greater potential for results. Fortunately, the average age of autism diagnosis has gradually come down to age four, but also means that many children are still diagnosed much later.

To help our eight-year-old twin boys, we sought the advice of physicians, naturopathic doctors, occupational therapists, ophthalmologists, and speech and language pathologists, while reading every relevant library book and web site under the sun, investing a small fortune, and spending the equivalent of a part-time job focused on their improvement. Many of my blog posts here have focused on the therapies we’ve tried. My husband and I do have more than a high school education and although we wouldn’t consider ourselves of “higher socio-economic class” we are frugal, resourceful, and willing to learn and faithfully execute the therapies we can do at home, avoiding expensive appointments when possible.

We definitely believe that our boy’s significant improvement over the past four years is due to the incredible, early support, education, and advice we’ve received from teachers, professionals, and fellow struggling parents, and for that, we are eternally indebted.

Although focusing on the 3 to 33 percent that are bloomers may leave some parents whose children are over age eight, suffering from multiple diagnoses, or lacking access to resources feeling hopeless, it’s my firm belief that clearly understanding what enables bloomers to thrive could eventually increase the number of children abandoning a diagnosis in the near future.

Animation courtesy of Gifbin.