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 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

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

May 21

Feeling Bitter and Taken for Granted. GRRRR!

Man oh MAN I’m in a foul mood right now. Angry. Sad. Bitter. And jealous. Here’s what happened that brought it all to the front. Not really THE REASON, but the trigger, if that makes any sense.

This morning I took Little J to his school’s speech therapist’s house for a 2-week intensive therapy session she’s doing with him and another child. He goes to an independent school for kids with special needs and we are really lucky that they are able to think outside the box and do things like this with him and the other kids when it’s possible. He’s there to be company for the other child, to be observed outside the setting of school, and to do focused listening therapy in the hopes that it will tell us something about his auditory processing issues.

I am all for this experiment, but I’ve quit holding my breath in the hopes that this – or any other therapies or medicines or treatments – will have any real, positive effect on him. FASD, or fetal alcohol spectrum disorder, is brain damage caused by alcohol exposure in utero.

Brain damage is brain damage is brain damage. Which doesn’t mean he can’t learn, but that his learning is limited. Slower. If the corpus callosum, the area of the brain that takes messages back and forth between the 2 halves, is small or even nonexistent, and the front lobes aren’t fully formed, which is what we suspect is going on with J based on his medical history and behaviors, there’s no documented treatment that can regrow or re-form those portions of the brain.

So when the speech therapist talks about ‘building new neural pathways’ in a brain that has serious, serious deficits, especially using techniques that have no research in connection with FASD (which isn’t saying much, honestly, since so little has been studied about therapies for people with FASD), I smile and nod, but I’m no longer hopeful. I’ve come to the bitter part of acceptance of my son’s disabilities. The part that most parents of kids with special needs don’t talk about. The part that’s tinged with grief.

So now you know my frame of mind, here was how this morning went down. I got up at 6 so I could make breakfasts and get everyone cleaned up and out of the house for 7:15. When J wakes up he is grumpy and rude, and I was called “bitch” and “idiot” and screamed at a couple of times for telling him to wipe milk off his face and to find his socks.  In between screaming at me he stops, smiles, and runs face-first into my body, saying “hugs.” When he does this sort of thing I find it really hard to reciprocate. At this point in my morning I am just trying to survive. Physical affection towards someone who has been, frankly, verbally abusive, is not top on my list.

While getting him and his brother ready I also had to watch the dogs – J has been bothering them recently. Not in a sadistic way, but in a ‘I’m stronger and bigger than you and I’m going to haul you around and tie you up’ kind of way, if that makes any sense. I really, really, really don’t like it when he does this to our dogs and I’m always on edge when he and the dogs are in the same space. And before you tell me to change the spaces they’re in, please realize that sometimes I have to do things like put on clothes and use the toilet, and the child is perfectly capable of letting himself outside so he can chase the dogs around the yard.

Anyway, we all get in the car, I drop J’s brother off, and J and I head to the therapist’s house, which is 50 minutes away. About half-way through his Kindle stops working and he starts smashing it against various surfaces, screaming swears, and making random nonsense noises. And then we hit traffic. And then I really, really, really start to need to pee. Really, really badly. Plus, I haven’t had breakfast and I can feel my blood sugar tanking. I have some hypoglycemia/blood sugar (probably stress-related) health issues that I’ve not been exactly ignoring lately, but I certainly haven’t been paying very good attention to. Suffice it to say I am not feeling great for the last 15 minutes of the drive.

When we arrive at the therapist’s house it’s all I can do to get out of the car without peeing on myself. I mumble hello-where’s-the-bathroom and stumble inside.

When I come out, much relieved, J is smiling and happy. The speech therapist is smiling and happy and uber calm. They talk about doing chores (which J has to be FORCED to do at home) and taking a little walk (again, a FORCED activity at home) and when she asks if she can give J a little snack of salmon or turkey in a while I can’t help it. I blurt, sarcastically, “Good luck!” Because if I were to suggest a snack like that at home it would not go over well. (Which, incidentally, is why J did not eat lunch or dinner the day before – he simply didn’t like it).

But I bet you a million dollars he eats that turkey or salmon. And I bet you a million dollars he will tell her he likes it. And I bet he feeds that dog and takes that walk and is sweet and kind and has a decent conversation with her, the kind I NEVER get out of him, because he’s too busy telling me how mean I am.

So that’s where I am this morning. Bitter. Taken for granted. And super jealous of his speech therapist, who’s getting to experience my boy in a way I never get to.

 

(image by flickr user Lucia through Creative Commons license)

May 04

Helping Each Other

I love this blog, our Facebook page, and the book, Easy to Love But Hard to Raise because they all focus on connecting and supporting parents of children with invisible disabilities, mental illnesses, and brain-based special needs. Together, we are stronger, wiser, and hopefully a little more satisfied with this defining life experience of parenting kids who need more.

When my twin boys were first being diagnosed as toddlers a few years ago, I discovered my county support network, Parent to Parent of Whatcom County (P2P). Their free services include the emotional support of a trained Helping Parent whose parenting experiences match mine as closely as possible. They also offer hosted social and recreational events, current information on disabilities and medical conditions, and referrals to community resources.

The first essay I wrote about life as an ETL parent eventually appeared in my local P2P newsletter. A couple of years later, a different form of that essay now appears in our beloved Easy to Love But Hard to Raise. I feel as if my experience with P2P is coming full circle. Later this month, I will host a reading and support meeting for the group, the book is being considered for a new Parent Support Book Club they’re developing, and I’m considering becoming a Helping Parent myself.

A couple of weeks ago, our family attended a free P2P-only ice skating event. My boys had been asking for months to go for their first try, but I’d been avoiding it. I didn’t want to deal with public meltdowns and crowds of people that don’t understand us. But with P2P, our experience went far better than I expected, the kids had a positive first experience, and we were surrounded by people who “get it.”

Barbara Claypole White has blogged here before about whether or not to join a support group, and in the end, it’s a personal decision that has to work for you, in your circumstances, in your own life. For my family, P2P has been exactly what we needed. Barbara said it well when she wrote, “Finding the right group—or stumbling into it in my case—is a blessing. We may cry in the middle of sessions, but by the end we’re laughing. And if you can laugh at least once during a day of parenting an obsessive-compulsive child, you’re a momma who can keep on truckin’.”

If you need the support of others near your community, Parent to Parent USA has local chapters throughout the country that just might be a good fit. Check ‘em out, and please, keep on truckin’.