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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You can find Penny Williams’ books on Amazon:

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

Mar 12

The Other Side of the Schoolyard Gate

Marty the Panther welcomes the children to MES

Marty the Panther welcomes the children to MES

 The Other Side of the Gate

I know how frustrating it can be when dealing with an ETL and the school system. I have seen the process from both sides of the schoolyard gates. I am the Reading Coach at Margate Elementary in Broward County, Fl. I am also an ADHD advocate, parent and teacher who deals with ETL kids on a minute-to-minute basis. All of this experience gives me a bird’s eye view of what’s happening with our kids.
My day is a variety of school activities, from working with small groups of struggling readers, conferencing with parents and helping out with discipline and positive reward systems. I know every ETL child in our school of 900, some very well.
We have a comprehensive program in place for these kids but still have many issues on a day to day basis. School begins at 8:00 and our first behavior code is usually at about 8:05. So we are off and running. We have 5 adults who take turns responding to behavior codes if a child is likely to hurt themselves or others. We retrieve children who have left classrooms without permission. We separate children who need to be separated, we talk to kids about their anger issues, we try to provide a safe yet structured environment for these kids for whom school is so challenging.
Despite ongoing training, we don’t always have the answers. What we have is time, concern, love and empathy for their struggles. I have called parents for advice, asking them, “What do you do?” My office always has 1 or 2 children in it, working, taking time out, talking with me, crying, and occasionally having a tantrum.
Sometimes they just need somewhere to go. Sometimes they have had a remarkable day and get to pick out of the principal’s treasure box, or call home to tell the good news. My office revolves around these kids daily.
There are times when my whole day is spent working with ETL kids, their teachers, and their parents. Paperwork I never finish is lugged home, because let’s face it, it can be done later. Kids are immediate priorities.
I meet every week with the RTI (Response) team. We meet with teachers and parents to discuss current interventions and how they are working. We put new interventions in place and follow up on their success. A coach is assigned to each case to help the teacher with what needs to be done. Some children are tested for learning disabilities if interventions prove to be insufficient.
We also work very hard to promote success. Teachers have been trained to be proactive so as to prevent future problems. Children are placed in classrooms where they will be deemed to be most successful. If their environment is not a good fit, another class is tried and many times this helps a lot.
Our Positive Behavior program is very effective. Selected children (K-5) are put on a contract each school day. Their goal is to earn 10 tickets per day. At 1:00 PM they come down to the Positive Behavior Room with their tickets and a work folder. If they have 10 tickets we celebrate! High five, mark it on their chart and they choose an activity. (reading, board games, legos, handheld video games and video games on the TV. Also air hockey.) If they have less than 10 tickets we talk about their day. They must complete some activities that the teacher has provided before they can play. So if they have 7-9 points it is pretty easy for them to earn points. Once they finish their work they get to play. Children with no points do not get to play that day. At times, we have had to move them to a different class away from the others. At the end of the 45 minutes, dismissal time, children who had 10 tickets get a special reward. They all get a snack for appropriate behavior in the group. There are celebrations for highest number of points in a week and then a monthly award.
We have seen a huge turn around in the kids involved in our program. Teachers report that the point system is working great for them. Of course, we are still struggling with transition times such as during special classes and lunch. But it’s a start!
We feel many of the same frustrations that parents do. What works one day does not work the next and so on. What we hold dear, is the parents who are trying so hard and who show us that we are all on the same page together in trying to provide the very best education for our kids.

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

Oct 18

The Mess I Am In: Balancing the needs of my ETL kid with those of her siblings.

Three kids which includes two teenagers, two girls, one twelve year old. Boy, girl, girl. Say no more. I’m losing my mind.

In years past, I worried that our neighbors would call the police because there was so much yelling, screaming, and crying on the part of my youngest daughter who has ADHD and a mood disorder. Some days our household felt like a war zone. This was not just contained to our home. Our ETL daughter regularly melted down at school and when she got anxious/overwhelmed the result were fits of rage which the teachers/administrators had a hard time understanding. A child who collapsed in a puddle of tears in the corner of the classroom in response to the same feelings seemed to bring about sympathy where as my child’s response resulted in judgment against here and us, her parents.

Things have gotten better. My ETL daughter still struggles with learning issues that are associated with her ADHD and mood disorder and she faces social challenges on a daily basis at school and at home where she feels lonely much of the time, but her melt downs have majorly decreased and are confined (for the most part) to life at home. The melt downs are occasional now, not daily. Her anger more contained. Continue reading

Sep 24

Humor? Really? You Have to Be Kidding

I have always prided myself on having a good sense of humor. I can make other people laugh. I can stand in front of an audience of 200 and create laughter that warms my heart. I can poke fun at myself and sharpen my wit at my own expense. So why is it so hard to always be upbeat when you’re dealing with an ETL child?

There are so many emotions that you encounter during the day when you are dealing with kids that are not cookie-cutter easy bake kids. Embarrassment comes to mind. Public places, friends with children who “do” all the right things, sitting in church. Guilt, another favorite emotion. What did I do wrong? How come it looks so easy for everyone else? Should I try medication? Was it that glass of wine I had during my pregnancy? Who does he take after?

Continue reading

Sep 14

Letting Our Kids Suffer

by flickr user andyarthurLast night I attended my first parent group as a parent. Professionally I am a clinical psychologist and have been doing parent groups on and off for years for those parenting teens with eating disorders. This all came to a halt a couple of weeks ago when I started a two year sabbatical from working to be home with my own three adolescents. So when word got out that a parent support group was starting at my 15 year old daughter’s alternative high school, I thought Why not go? After all, you can never get too much support while parenting teenagers.

The group facilitator, a school co-director and talented adolescent therapist, introduced the idea of letting your teen sort things out by themselves. We all went around and talked about how difficult it is to see your kids suffer, how everything in your being wants to take their pain away even though logically you know that struggle is part of life, a valuable part of life. All of the nine or so parents there could relate to this concept. It might help for you to know that all forty of the teens at the school (tiny, I know) are there because it did not work out in “regular” schools, whether public or private. The students at this wonderful, creative, wacky, nurturing, and sometimes counter-culture school did not fit in socially, have learning differences, have had some trauma, or struggle with anxiety or depression to some degree. These are kids (and parents) who have already been through a lot. I am one of those parents. Continue reading

Sep 07

Stay at Home Mother: First Day on My New Job

On the upside, I sit in my favorite coffee shop at 10:30 in the morning on a weekday writing for the first time in months. When I bought my coffee a few minutes ago, I put 25 dollars on a gift card (a gift to myself) suggesting that I expect to be able to do this on a semi-regular basis. I wear flip-flops, black yoga pants and a dark green t-shirt. Sun glasses propped on top of my head, I suppose I am wearing the uniform of a stay at home mother and I must say, it is comfy. Just how I like it.

On the downside, I have been weepy all morning. You see, this is the first official day of my new job. For the next two years I have walked away from paid employment. I am someone who hopes not to lose my mind, someone who hopes to improve on the balance in our family of five which includes a dad who works long, long hours, me, two teenagers in high school, and one preteen with ADHD in middle school. I hope for basics like cooking more nutritious meals (or cooking at all), being a mother who can breath, more support for completing homework, a presence when a random teen decides to open up, flossing my teeth, some yoga, as well as developing my writing. If you are snickering at my unrealistic expectations, I understand.

Last Fall I wrote for this blog about my ambivalence about working and mothering three intense kids, one who I comfortably think of as high need. At that time, I decided to stick it out with my job as a psychologist who, for the past decade plus, has worked with kids and teens at a local medical center. Even after my decision to stay at work, however, I continued to be preoccupied and torn in two different, demanding directions. Then one day in June, with my husband’s full and loving support, I sat at my desk at work and thought if I don’t just do it, I will remain stuck and nothing will ever change. I decided not to stay in my job based on fear, but to make a change despite the fear. So, right then and there, I wrote a letter of resignation and sent it off to my manager. When we met later that day, I told my manager that I could stay until September in order to facilitate a smooth transition for my patients and the department.

The relief of this decision lasted about one day. Maybe two. This was then replaced by a constant state of feeling terrified. Continue reading

May 31

ADHD in HD: Brains Gone Wild, by Jonathon Chesner {a rad new book for teens & young adults with ADHD}

Free Spirit Publishing’s latest release, ADHD in HD: Brains Gone Wild is—by far—the coolest book about ADHD in existence. It’s so “melting your face off with the flames of awesomeness” cool, that I can’t imagine a cooler book coming along anytime soon. It’s written by Continue reading