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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May 24

Thoughts on diagnoses / Grief

When my son was 4, I took him to the only psychiatric clinic I could find in my area that said they would diagnose ADHD in a child as young as he was then. I took him because I KNEW there was something wrong. Something off. Something beyond the “mild sensory processing disorder” that we’d been told he had a year before, by a clinic that wouldn’t accept our insurance and that wanted $180/week for therapy. He was wild – crashing into everything (the sensory processing), screaming, not falling asleep until midnight or later every night, refusing to comply with anything we said, and destroying every thing he touched, either intentionally or unintentionally. At that time all I knew to call it was ADHD – and within 10 minutes with the child psychologist she was ready to refer us to the psychiatrist so that we could get medication for our son. Within 12 minutes I was sobbing in her office – my answer to her question, “How are you doing?”

Since then there have been more diagnoses, more doctors, more evaluations, and many, many different medications. Some of the therapies, like his weekly visits with his OT for handwriting, have helped. Some, like the 3 different talk therapists we took him to, haven’t. At home we’ve vacillated between hardline responses to his behaviors, which have created frustration and misery for parents and child, and an attempt to ignore everything except extreme safety issues and basic respect for his family, which works best but requires a HUGE effort to remain calm (or at least seem calm, which is much different than actually being calm) and which tends to give me a raging tension headache at the end of most days.

Unlike the other diagnoses we’ve heard doctors give to Little J, this one seems very, very different.

So now we’re headed towards another diagnosis: FASD, or fetal alcohol spectrum disorder. I wrote about it a little bit on the Mom’s View of ADHD blog already, and I’m sure I’ll write about it more and more as the summer progresses and we go through the evaluations and the process of coming to terms with it all. Unlike the other diagnoses we’ve heard doctors give to Little J, this one seems very, very different. For one, unlike ADHD, there is no medication that will help my child get over the brain damage he received as a result of his birth mother’s alcohol consumption when she was pregnant with him. Strategies that kids and adults with ADHD can use to help them function really well in life aren’t likely to help Little J. Medications like the ones he’s on – a stimulant and a mood regulator – can help, but they aren’t going to make him magically “normal.” And from what I’ve read, there is no therapy – no talk therapy, occupational therapy, or any other therapy that will suddenly make his brain whole and fully functioning. The only kind of therapy that will probably help him is therapy and education that his dad and I get – he’s not going to change the way his brain works, so we need to change the environment he’s in. This is hard. This is – literally – life changing. And it’s also really, really sad.

I know I sound down. I am. Although we are seeking this diagnosis because we’re seeking answers, it also seems like a more final diagnosis than the ones we’ve gotten in the past. Little J can grow and change, but because he has brain damage there is a limit to how far he can go. The other diagnoses didn’t seem so limited to us. Standard procedures do not apply.

Adrienne Ehlert Bashista lives in central North Carolina with her husband and 2 boys, ages 8 and 11. She is a contributor and co-editor to Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories. To read all of Adrienne’s posts on this blog, please click here.

(image from Psychology Today)