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

Jul 12

Guest blog: Why is “getting” our kids so hard?

Kim Stricker is a Chicago area elementary education teacher, writer, and mom to two tween boys.   Kim shares the unconventional experiences of parenting an adopted child with ADHD and Asperger’s, as well as his younger bio brother, at her blog, http://www.lifeslikethis2@blogger.com .  She is also a parent advocate and blogger for http://www.empoweringparents.com.  

“You just don’t get me.”   These are the words spoken to me by my twelve year old son last weekend.  The words were said in the middle of one of our endless verbal battles of why he should do something I have asked versus whatever it is he wants to do at that moment.  He is right.  I don’t get him.  In fact, I haven’t really got him since he was about two.

My son’s natural temperament is choleric.  A theory dating from BC meaning he likes to be in charge of everything,  is moody, and highly disorganized.  Add the official tags of ADHD and Asperger’s; he is too busy and doesn’t care what the rest of the family or world thinks either.  I don’t get him.

I want so very much to parent him and have him reciprocate a tenth of our family’s naturally good humor, kindness, and patience.  However, those moments are very few and very far between.  We do celebrate the small steps he is finally able to take with the aid of medications and therapies.  He asked my husband how his day was last week.  We were beyond thrilled for days.

I don’t get why his brain doesn’t seem to enable him to learn from mistakes,

 I think if I can get him more, I could perhaps get more of him, increase his rare smiles and maybe even get the ever elusive hug.

consequences, and solid parenting.  I don’t get why he is embarrassed by my actions; yet his disrespectful behavior is not at all embarrassing to him.  Countless parenting books, doctors, and interventions leave me stymied.

How do I get him more?  Friends offer advice like expect and focus on the positive and ignore some of the behaviors.  My husband and I walk around reminding each other he has special needs and kids do well if they can.    I think if I can get him more, I could perhaps get more of him, increase his rare smiles and maybe even get the ever elusive hug.

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