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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Sep 16

When The Other Generation Is Easy To Love But Hard To Raise

old-63622_150I love my dad – more than I can describe. He’s always been there for me, always the first to offer a hand when life threw me a curve ball. What he lacks in outward emotions he makes up for with ready offers of support and a safety net of stability. But my dad is growing old – very old. He is stone cold deaf without his hearing aids, his eyesight is failing, his knees are shot, his 89 year old body is tired. His diuretic makes him reluctant to travel too far from a restroom or take too long a car ride. So by this past spring, his trips beyond the house consisted mainly of doctors’ visits and a weekly card game at the senior center. My mom, his wife of 63 years, died three years ago. Dad misses her constantly. You can see it in his eyes. A religious man, he wakes up each morning just a little disappointed that his prayers weren’t answered and they weren’t reunited during the night.

After my mom died, my dad moved in with my sister. Because I live 600 miles away, I started calling him once a week when I knew my sister was out – I figured he could use the company more on that night and he could also talk louder without bothering anyone. He did most of the talking – generally idle chatter with the occasional talk about memories, the afterlife and once in a blue moon, his feelings. But when I called a few months ago, I sensed that something was different. Something in his tone wasn’t right. He told me that he was moving out of my sister’s house and into an assisted living facility. My sister had told him she could no longer care for him.

Continue reading

May 19

Eyes Open

So your ETL, forgets his homework – more than a few times.  Should you help him organize his locker?  Email  teachers and ask for assignments to be sent to you?  Check agenda for fourth time?

Or, there’s  problems with  friends.  Should you check Face Book to see what’s going on?  Should you call parents?

Even worse, your ETL is an adolescent and finds himself in trouble with the law.  Should you help him get a lawyer?  Should you help navigate the consequences or help with fines? Continue reading

Feb 26

Guest post: Losing a Hero

old_mans_handsGrief is a great, big monster that jumps out from under the bed and scares the living crap out of you. You don’t see it hiding under there, even if his large, hairy, zombie toe was sticking out just a little. Even if a ghoul straight out of the Thriller movie was in your closet when you opened it up before bed. You ignored it. You’re just not ready, and I am talking about how we adults process and handle grief.

Imagine someone taking your 8 year-old, ADHD world by a string and giving a violent shake and bouncing down the stairs. That’s what happened to our son when my father, his beloved Papa, was diagnosed with stage four glyoblastoma brain cancer and died (what seemed like seconds) 5 weeks later, in November 2011. Continue reading

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 19

You Matter

MC900434914-1If you’re reading this, chances are you are mourning the lives lost in Newtown, Connecticut.  As the nation begins to emerge from shock and horror, as we pass into a phase of soul searching and debate over gun control and mental health care, dozens of teachers from Sandy Hook Elementary School will start the new year by walking into a school in the neighboring town of Monroe and do something unfathomably courageous. They will greet the hundreds of children who must return to school for the first time since the shooting. They will give reassuring hugs, they will keep a keen eye out for both physical and emotional well-being, they will dedicate every ounce of their being toward making the world right again for those in their care. They will fight the tears that threaten to gush forth, they will suppress their own sorrow and fears so that their children might eventually learn to feel safe again.

I cannot imagine the courage these teachers will have to muster. But I can imagine the love and commitment that drives them. It is the same love and commitment all caregivers have for those who need us.

There have been numerous calls to action to honor those whose lives have been forever altered by this nightmare, most notably Ann Curry’s call for everyone to perform Acts of Kindness for those around us as a way to pay tribute to those who’ve been lost to us. One act I’m going to do is to write thank you notes  and deliver them to the Newtown Superintendent, asking her to deliver them to the school staff. Here’s what I want to say:

Thank you for your courage. Thank you for the love you give every day. Thank you for giving the gift of yourself no matter how hard it is sometimes. The people in your world are richer because you are here. You make a difference. You matter.

I read this to myself over and over, wanting it to be concise yet wanting it to speak volumes. Then something occurred to me. This is the same note I want to send to a few of my friends who struggle with depression. With the dark and cold months ahead, I worry that they’ll forget how important they are to their kids, to their grandkids, to me. This is the same note I want to give to my husband to make up for all the times I get too busy to make the time to show him how much I love him. This is the note I want to give myself because I’m trying to be a good friend to me. This is the note I want to give to my son and to my daughter. No matter how often I tell them, they can’t truly comprehend how rich they have made my life, how much they inspire and teach me, how deeply I love them. I want to indelibly write this into their brains so they never, ever doubt just how much they matter. This is the note I want to send to every child who feels disconnected, who feels that no matter how hard he or she tries, (s)he is just too different to ever fit in, to ever be understood.

You matter.

I care.

And so I send you a note today, as a caregiver of children who really, really need you:

Thank you for your courage. Thank you for the love you give every day. Thank you for giving the gift of yourself no matter how hard it is sometimes. The people in your world are richer because you are here. You make a difference. You matter.

 

Nov 17

The Village (You are NOT alone)

There are literally hundreds, if not thousands of people who are involved in my child’s life. At the same time I think it’s really easy to feel isolated as the parent of a child with the type of special needs that my son, Little J, has. His over-arching diagnosis is Fetal Alcohol Spectrum Disorder, or FASD, which includes behaviors similar to ADHD and mood disorders – what some people, including me, consider to be “invisible” disabilities.

If you are parenting a child with an “invisible” disability, like I am, and you go out in public and your child has a tantrum or an outburst or rages or otherwise acts up, you are instantly judged as a bad parent. People just don’t understand a child who looks perfectly “normal”, yet whose brain-based disabilities impact behavior and emotional regulation. I cannot tell you the number of times I’ve been told that I just need to spank my child – by perfect strangers and acquaintances alike. Family and friends don’t get it, and although they may care about you and your child they can also be quick to judge – based on assumptions they’re making about your parenting, or about witnessing isolated incidents, or through caring for your child for a couple of hours when he was “perfectly fine for me.” Professionals – even those whose profession is helping a child like yours – need to be educated about your child. And support is hard to find. Add that to the exhaustion and unrelenting stress of trying to find answers to your child’s problems as well as the day-to-day management of your lives and it’s easy to become a hermit. A lonely, stressed-out hermit. Continue reading

Oct 30

Guest blog: Life in Shadowland (or, Things I Wish People Understood about Having a Child with a Neurodevelopmental Disorder)

This is a repost of a guest post by Kelly Schmidt, written back in July. I’m reposting it because it seemed to resonate with a lot of people. Kelly is mom to Nathaniel, and Ph.D. candidate in a developmental psychology program. For Kelly’s full bio, see the  bottom of her post.

 When Kevin and I were married 10 years ago, we understood that there were no assurances that we would have a child because I have an endocrine disorder that causes fertility problems.  Nobody was more surprised or excited than us when we learned 2 months after our wedding that we were expecting.  I chose the name “Nathaniel” very deliberately because it means “Gift from God”.

Nathaniel has a BIG personality.  His smile is high wattage, his giggle is contagious.  He is scary-smart and has an amazing memory.  Sometimes he is so thoughtful and concerned about others, he takes my breath away.  He has a very strong faith and knows more about the Bible than many adults.  He loves sports (especially basketball), Legos, video games (much to my dismay), and reading (which makes me proud), and his brother Joel.  He likes to draw cartoons, help make pancakes and cookies, and talks about Pokemon and Mario Bros. endlessly.  He is 110% boy.

Nathaniel also has behavioral and psychiatric disorders.  The behavior disorder is called Attention-Deficit Hyperactivity Disorder, also known as ADHD.  The psychiatrist calls his psychiatric disorder a “Neurodevelopmental Disorder” but since insurance companies don’t reimburse for treatment of that, she calls it “Mood Disorder Not Otherwise Specified (NOS)” for billing purposes.  He has some features of bipolar disorder, oppositional defiant disorder, anxiety disorder, and even Aspergers syndrome.  He doesn’t meet clinical criteria for any of those disorders, however, because he is typically not symptomatic anywhere else but at home.

Home is where the explosions occur.  Home is where there is defiance, anger, and violence.  Home is where frustration boils over to punches, requests lead to rebellion, and yelling and tears are almost daily occurrences for all members of the family.  Peace is fleeting.  Quiet, dreadful anticipation of the next meltdown or outburst is the norm. Continue reading

Sep 05

Repost: You are not alone!

This is a repost from the spring. Since then, much has changed in my life, but this feeling – that I am not alone, never alone in my feeling about being the mother to a child with sometimes baffling behavioral special needs – is still ever present. Since April, when I first wrote this, our blog readership has almost doubled, our Facebook community has literally doubled, and more and more people every day are finding us. As the person who runs this blog and Facebook page I’m faced with the need to accommodate our Easy to Love family by creating a forum – one where folks can post anonymously, if needed, but also a place where we can grow as a community.

In any case, I thought this was a good post to re-share at this time of community growth. This was the first time I talked to a group of parents about my experiences raising a child who is easy to love but hard to raise, and it was a powerful experience for me.

Thursday night I had the privilege of speaking to a group of parents at the Chesapeake Bay Academy, a special needs/learning challenges school in Virginia Beach. I was invited there to talk about our book. I thought long and hard about what I should say to these parents. I didn’t want it to be a book infomercial. I also didn’t want to read a lot, since listening to someone read is kind of boring. But I wanted to convey the main message of the book: as the parent of a child with an “invisible” special need, you are not alone. Continue reading

Jul 05

Guest blog: Life in Shadowland (or, Things I Wish People Understood about Having a Child with a Neurodevelopmental Disorder)

Today’s guest post is by Kelly Schmidt, mom to Nathaniel, and Ph.D. candidate in a developmental psychology program. For Kelly’s full bio, see the  bottom of her post.

 When Kevin and I were married 10 years ago, we understood that there were no assurances that we would have a child because I have an endocrine disorder that causes fertility problems.  Nobody was more surprised or excited than us when we learned 2 months after our wedding that we were expecting.  I chose the name “Nathaniel” very deliberately because it means “Gift from God”.

Nathaniel has a BIG personality.  His smile is high wattage, his giggle is contagious.  He is scary-smart and has an amazing memory.  Sometimes he is so thoughtful and concerned about others, he takes my breath away.  He has a very strong faith and knows more about the Bible than many adults.  He loves sports (especially basketball), Legos, video games (much to my dismay), and reading (which makes me proud), and his brother Joel.  He likes to draw cartoons, help make pancakes and cookies, and talks about Pokemon and Mario Bros. endlessly.  He is 110% boy.

Nathaniel also has behavioral and psychiatric disorders.  The behavior disorder is called Attention-Deficit Hyperactivity Disorder, also known as ADHD.  The psychiatrist calls his psychiatric disorder a “Neurodevelopmental Disorder” but since insurance companies don’t reimburse for treatment of that, she calls it “Mood Disorder Not Otherwise Specified (NOS)” for billing purposes.  He has some features of bipolar disorder, oppositional defiant disorder, anxiety disorder, and even Aspergers syndrome.  He doesn’t meet clinical criteria for any of those disorders, however, because he is typically not symptomatic anywhere else but at home.

Continue reading