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 12

Repost: The Critic

contemplationAs much as I think I have “accepted” my children’s learning challenges, I forget that I still have The Critic living in me as well. The voice of acceptance is calm and even soothing at times. It has been cultivated and reflects flexibility and surrender to what is in me and my children, rather than rigid ideas of what “should” be true. “The Critic”, on the other hand, is loud and harsh and, at vulnerable times, unrelenting. Three kids with ADD? Yeah, right! You’re just a bad mother. ADD? Not! Rather, it must be LMS (lazy mother syndrome). Maybe you are imagining all this because you are in the mental health field. Maybe you jumped the gun in terms of assessment and intervention and maybe all this HELP has actually created the problem. Maybe it is your hyper-vigilance with the oldest, the Sudafed you took for a bad sinus infection when pregnant with the second child, or the way the youngest baby turned blue as she left the birth canal and needed oxygen… Or, most benignly, maybe it is just your screwed up DNA.

It does not matter that we have consulted with experts in the field many times over the years to see if the ADD and related learning problems are our imagination, the validation we desperately need to avoid self blame. It doesn’t matter that we have been told that this is genetic or simply how they are wired. I still find myself living with chronic doubt. I don’t like to admit that The Critic is always nearby, but it is. Continue reading

May 02

Repost: Hello, My Name is Eve, part one: What were you expecting?


This repost is by Kay Marner, the co-editor of Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories. Through editing the book Kay found a pattern in the experience of parenting children with neurobehavioral special needs. She frames it as the experience of an everyparent, “Eve.”

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When I was pregnant with my first child, I spent untold hours with my nose in the book What to Expect When You’re Expecting.

Throughout my son Aaron’s first year of life, What to Expect the First Year was always close at hand, on the table by the rocking chair where I fed Aaron, sang to him, read to him, and rocked him to sleep for naps and bedtimes. Then, before I knew it, I’d switched to What to Expect the Toddler Years.

Sound familiar? Do you remember those days? Wasn’t it magically reassuring to follow along—and even read ahead–in books that explained every stage of development, and answered every possible question—sometimes before we knew to ask it? Continue reading

Jul 01

A Forever Teacher

parent Teacher post 7-1-13Parents are their children’s first teachers.  I took this seriously and began teaching and reading to my children as soon as they left the womb.  I just didn’t expect to be still doing it 27 years out.  I’m talking about teaching here, not guiding or offering advice.  I mean helping my daughter read her mail, or better yet, making sure she doesn’t throw away her important mail claiming it is only credit card applications.  Spelling words for her so that she can fill out applications and inspecting the checks she writes to be sure they are properly written.  But I didn’t start this until Marie graduated high school and junior college.  Before that, it was enough to get her through the academics.

I believe that homework is a necessary part of any education, but it can become exhausting with a special needs student in the house.

In elementary school, the dining room table was always a mass of folded or spindled or torn papers.  Pencils, erasers, and erasable pens, rulers and homework planners, workbooks and textbooks were scattered everywhere.  That was where five children accomplished their nightly homework.  Well, most of the children.  Marie would leave the table with the rest of them, but she wasn’t finished.  I would sit by this chaos closing my eyes and rubbing my forehead, as if it could all disappear and I could have some free time.

I would sigh and reach for another cup of tea. Marie’s the oldest, yet academic work is difficult for her. And, she’s a hurrier. In elementary school, Marie would look at a paper and decide she knew what to do. From my relentless “Read the directions first!” sometimes she’d look at the first word—or even the first letter—and plug in whatever word happened to be in her head. She just wanted to say she was done, like the other children.

But she’s not like the other children.  She needed reinforcement and repetition. And this all took time—endless hours of correcting, reading, and explaining again and again.  Downtime that I could have spent enjoying the children, playing a game with them or going for a walk.  Quiet time reading a book of MY choosing, or spending time with my husband.  Visiting friends or shopping in peace.  But at my house, at that time, the world revolved around Marie and her education.

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 22

Guest post: A Letter to the Future Teacher of My Exceptional Child

 

always_believe

Dear Teacher,

My son will be entering kindergarten this fall. Two years ago, I used to envision myself dropping him off for his first day of school with a tremendous sigh of relief. I would bring him to your classroom, where he would run off and be engaged in any number of different activities, and I would then head over to the Boo Hoo Breakfast, where all the other parents would lament over where the time had gone and I would pretend to be nostalgic but inside just feel relief. This was the fantasy I indulged in until a year ago. I figured I was like a mother giraffe that kicks its calf onto its legs until it staggers into survival. Now I know that when I leave him with you, there will be no great relief. Every day that I send him into the tribe is a day I worry about how he is doing, what he is doing and how you are doing with him. When my phone rings or my inbox has an e-mail, my immediate thought will be, “It’s about him.” Continue reading

Feb 20

Guest post: Been there, done that, where’s the t-shirt?

adhdt-shirt

I fly at least once a month for my job and each time I arrive at the airport, I am met with the announcement of what color Homeland Security has assigned to our potential travel threats. The color red equals a severe threat of attack, while blue offers a “guarded” risk.

Everywhere we drive, colors represent something similar, as well. From the first time we start to drive, we recognize that the color red, whether on a stop sign or light, dictates that we should stop, while yellow guides us to slow down or proceed with caution.

At least once a month, I see someone post something on Facebook about being “dumb enough to wear a red shirt in Target” and after seeing some version of that sentiment for about the tenth time, I started thinking.

What if I was able to wear a brightly colored shirt that enabled me to alert those around me that I was in the company of a small child with ADHD? What if I had the luxury of presenting myself with a universally-recognized color garment that told people to “proceed with caution” both in how they regarded my child and how they addressed me? Continue reading

Feb 19

Guest post: The Shoes that Matter

A life long resident of upstate New York, Kristin Osborn lives at the foot of the Adirondack mountains with her husband and two kids, 11 and 4. Kristin is a graduate of the State University of New York’s creative writing program and has been working as a manager in medical sales for 10+ years. Being a mother to a son with ADHD has finally given her the outlet to start writing again, as being able to put her feelings into stories is a therapy that’s hard to match.

red_shoes_muohace_dcI have been following the site for a few months now and it has really helped me to deal with my feelings about being a mom to a four-year-old with ADHD. I know so many people ask questions on here, but for me, it’s helped me to just write down my thoughts about my experiences. It’s even helped me to consider starting a blog, just so I can have an outlet. I bet some people can agree! Here’s something that happened just last week:

Last week a Dora the Explorer fruit snack took an 800-mile trip with me. Through a thirty-minute wait at security and through two flights, that chewy little purple smush hung on tight. I travel a lot for business and so because I have a small child with ADHD, I relish those overnight trips by myself. I get to wear clothes that are clean and that also match and I get to eat in restaurants where the food doesn’t come served exclusively on a red tray. Continue reading

Feb 01

Guest blog: Dating & Raising an “Easy to Love” Child

Today’s guest blogger is a 35-year-old mom with a 5 year old kiddo with ADHD and ODD. Her child has been on medication since August.

Note: ETL stands for “easy to love,” which is short for the title of the book: Easy to Love but Hard to Raise.

holding hands

If you asked me to define myself a few years ago, I would use the following words, “failure, divorced, single mother & thirty-one”. At the end of 2009, I asked my ex-husband of seven years, to move out of our home and filed for divorce. He unfortunately got himself heavily into drugs months before his eviction and as a result, he was a danger to me and my child, “M” who was 2 at the time.

M was always a “spirited” child from birth. As 2010 arrived, M was showing more signs of ADHD and M’s behavior was not for the faint of heart.  M’s acting out, biting, hitting and uncontrollable anger was exhausting and difficult. As M’s behavior worsened, I felt alone. It was hard for other family members and friends to understand M’s actions and often times; I was looked at as “the problem”.  I was emotionally drained. With working full time and dealing with single motherhood and my ETL, I wondered two questions. (1) if I would ever be able to get myself out there and (2) who would want to be a part of my madness?  For those that are single mothers and raising ETL kiddos, there is hope.

I decided to take a tiny leap and took the dating world on slowly. I tried EHarmony and went on a series of many bad dates.  Either the chemistry was not correct, date did not take hygiene seriously or moved too fast (wanting to meet kids after first date). I actually had one person that wanted to do a “family” date after two dates. That may work for other women, but not me.  Not only were the dates bad, but what single working mom really has the time to date, especially a mom of an ETL kiddo?  I came to a fast realization that (1) I barely even have time to shave my legs in the shower without M knocking down the door (2) makeup and trying to look cute are overrated (3) Babysitters are few and far between (4) uninterrupted sleep may outweigh a date (5) having thirty minutes to myself definitely outranks a date.

I admit, I had a negative outlook on the whole dating thing and it was not until I crossed paths with someone special that I realized dating might be okay.  I ran into someone I knew a long time ago and for me, there was instant chemistry.   Even though there was chemistry, our paths would not cross again for five months and when they did, I knew that this person, “B” was special.  We took things very slow and did not involve M for many months.

Once M was involved, things got interesting at times. There were times that M had massive tantrums and many therapeutic holds ensued in front of B, who never judged me. Throughout 2010 and 2012, M’s behavior was a see-saw of ups and downs and when there were downs, it was not fun.  It took a few years and a therapist to get M evaluated and on medication.  Even with M’s medication, M had shares of tantrums and moods. There are two evenings in particular that stand out.  One evening, M was in a mood and I had to give M the emergency meds for the first time. M was angry and having a massive tantrum that involved hitting and biting and a therapeutic hold.  Once the meds started working, M calmed down but it was about 30 minutes of “fun”.  While this was going on, B did not judge me, intervene and most importantly, did not leave.  When all was calm, B was outside and I stepped outside to tell him it was safe to come back in and B gave me a hug. I was in emotionally drained and in tears and B told me I was a good mom.

Another time, B came over for dinner. While I was trying to finish dinner and set the table, M started to get in a funky mood.  It escalated at dinner and I had to remove M from the table and put M in time out. I had to hold M’s door shut and M had a big one. M destroyed the room, screamed bloody murder and was throwing objects at the door.  B asked me if I needed help and I told him I have it handled and to enjoy his dinner.  Even though I did not find it funny at the time, I find it comical now, as this is my life at times with M.

Even though it took some time, I was able to find someone that does not judge me or M. B is good to M and provides a positive male role model for M, which I am grateful for.

Raising ETL kiddos is hard, draining and emotionally exhausting but there is hope! Through my story, I want to leave you with the following: 1) Single ETL mommies can date and have a successful relationship 2) your ETL kiddo will be able to handle someone new in their life 3) take things slow and take your time introducing kiddos in the mix 4) try to take time for yourself whether it is gym time, nap or relaxing 4) Humor can make the worst day a better one 5) Things may not be perfect but you can be happy.

Nov 26

Sometimes My Child Needs A Different Mother

I’m frustrated and sad because I don’t know how to help you with this. I don’t like to see you in pain, but I don’t know what to do.”

Have you ever wondered if your child would do better in life if they had a different mother? Perhaps we all have. I have often had the thought that I am too soft to be good enough as a mother, that I have too much empathy that has gotten in the way of me giving my three children what they need. But having this thought as it applies to my oldest two children has been occasional and minor, where as this thought has, at times, been overwhelming when it comes to mothering my youngest daughter, Sarah.

Sarah is now in the seventh grade, her second year of middle school, the hardest year of middle school for most girls, and almost every school day over the past three months has been a challenge. My girl has had major mood issues her whole life, anxiety that manifests as angry outbursts, and ADHD. She has had many interventions over the years, but the most effective, it seems, has been riding horses. With horses she is able to relax, to be accepted, to learn about communication, among many other things. But medication has also been necessary and something she fights every day. Continue reading