Who Are You Going to Call at 3 a.m.?

Fighting Stress, Support for Parents of Children with Special Needs, ,

8184302_s (1)As a parent of a special needs kid, your brain often runs on overdrive. During your busy days of getting kids up and going; getting yourself to work; shopping and meal planning; getting your kids through a seemingly exhausting day of school, therapies and homework, and taking care of household chores before falling into bed, your mind is often in autopilot mode, just active enough to get all your jobs done. For many parents, falling asleep is easy, you’re too tired to stay awake for another moment.

It’s not until 2 or 3 a.m. that your worry brain decides to rev up, your eyes pop open, staring at the ceiling in the dark, your thoughts running a mile a minute.

F. Scott Fitzgerald described this phenomenon in The Crack-Up: “In a real dark night of the soul it is always three o’clock in the morning.”

Why We Worry at Night

Scientists still haven’t come up with a solid answer for why we wake up in the wee hours and paint our worries on the dark bedroom ceiling. One explanation is that when we relax at night, the defense mechanisms that shield us from worrying, unhealthy thoughts are also lulled to sleep. This leaves our “worry brain” free to roam.

Another possible explanation is that, because the distractions of busy everyday life are silenced in the middle of the night, our mind has time to run an inventory of all the problems that need attention. In parents of atypical kids who are already anxious, these feelings become more exaggerated during the middle of the night. The quiet isolation and lack of distractions – 2 things you long for during the day – become your enemy at 3 am, as you long for the peace of restful slumber but for your busy mind reminding you of your worst worries, most pressing problems as well as irrational problems.

And what do we worry about? The wellbeing of our kids, first and foremost. This is especially true for parents of special needs kids.  Sleep is important. Fatigue and lack of sleep in parents has recently been identified as a key factor to lowered parenting efficacy and satisfaction.

One parent of two children — one with a life-threatening illness and the other with high-functioning autism — noted that she worries more about her child with autism in the middle of the night. Will he be okay at sleepaway camp? Will the bullies leave him alone? How will he ever grow up, grow away, and live independently? When will he discover girls? Will he go to college?

These are just a few worries of one mom. I’m sure they sound familiar to many parents reading this. During the day, there are a variety of strategies you can implement to help cope with your worries about your child. You can call a friend, arrange an appointment with your child’s therapist, talk to your own counselor, go for a long walk or just veg in front of your favorite TV show. But lying in bed in a dark room, your worries can seem insurmountable, inescapable and even propel some people into panic. Middle of the night panic disorders are not uncommon in people who are already prone to anxiety.

5 tips to handle your middle of the night worries:

1. Prepare for sleep:

Falling into bed mindlessly may be the most common temptation when you have finally done the majority of your to-do list for that day. Don’t do it. Instead, prepare a bedtime ritual that will soothe you and ground your mind and body to ensure a more long lasting sleep. A warm bath, a cup of camomile tea, a cuddle session with your pup or loving partner. Be sure to give yourself a mental hug for making it through another very busy day. Feel as if you didn’t do enough? Remember Scarlett Ohara’s words: “Tomorrow is another day.”

2. Gentle stretches before bed:

Chances are, you didn’t get a chance to take good enough care of your body in your busy day. Gentle pre-bedtime stretches such as child’s pose, gentle seated twists, or legs up the wall will allow you to re-center yourself back in your body. Note the emphasis on the word ‘gentle’. This is not the time to think about how you need to get more aerobic exercise or why you can’t seem to do the splits like you used to. Take it easy and ease your mind back into your body with some gentle releasing moves.

3. Worry Diary:

If you can’t remember your 3 a.m. worries in the warm light of day, keep a worry journal next to your bed. When a worry pops into your head, write it down. Look at your worry journal during the day, and you’ll find they won’t seem so bad. You might be surprised at how much relief this simple exercise can bring.

4. Practice gratitude and compassion

As you prepare to go to sleep, take a few moments to review your day. Breathe deeply and feel gratitude for another day accomplished. Ask yourself, what is one thing that happened today that you are particularly happy or grateful about? Take a few moments to become aware of how that feels. Think about your child. Is there one thing that he or she did today that was growth or was it a difficult day? Remember to feel compassionate for yourself in this moment, shouldering the burden of taking care of this magical child with both good days and harder days. Tell yourself that tomorrow will be a new day and if you can, try to imagine putting your worries to bed on a shelf across the room. Remind yourself that those worries can be picked back up in the morning if you choose but now your mind is going off duty. Finish your meditation with a few slow deep breaths as you attempt to empty out your mind and prepare for sleep.

5. What to do in the middle of the night:

Avoid going to your phone or tablet.  Don’t turn on any electronics because the blue spectrum light emitted from such objects is know to impede sleep.  Instead, get up and walk around the house. Fix yourself a soothing cup of warm milk or a bite of a banana.  Prepare to go back to bed, most people will fall asleep again within the hour.

If you feel comfortable, share some of your worries in the comments below. In future posts, I’ll try to address some of these worries so your pre-alarm-clock hours become more calm and restful.

Until then, sleep well!

Put On Your Oxygen Mask First

Support for Parents of Children with Special Needs, , , ,
Which way is your compass pointing?
Which way is your compass pointing?

“I have to admit that I’m suffering from a severe case of battle fatigue . . . If you work with families, please try to minimize the soul shattering disappointments you hand out . . . At least let me believe you’re trying to figure it out.”

That was the final blog post of Kelli Stapleton, who on September 3 attempted to kill herself and her autistic teenage daughter by filling their van with carbon monoxide.

Kelli Stapleton called her blog “The Status Woe,” and in it she described the despondency, frustration, and sense of hopelessness she and her husband experienced raising their daughter, who was frequently violent.

Most of us, thankfully, will never be in Kelli Stapleton’s situation, no matter how difficult the challenge of raising our kids. However, the relentless day in-day out demands of raising atypical children can be devastating to many parents’ lives.

Until recently, the emotional health of Moms or Dads has rarely been noticed, much less explored as a critical factor that affects the child’s well being. Both inside and outside of families, the attention is typically focused on the needs of the child. That’s understandable, but it is also a big mistake.

THE STRESS OF CARING FOR YOUR ATYPICAL CHILD ADDS UP

Parents tend to forget to take care of themselves; that is a fact of parenthood – but they may not notice that they are not the only ones who suffer when their emotional needs are ignored. Their children suffer too.

When parents first discover that their child is atypical, either receiving a diagnosis or a realization that their kid is ‘beyond quirky’ and will need more interventions, their instinct is to buy books about the disorder and search the Internet for everything they can find on the topic, be it ADHD, a behavior disorder, autism spectrum or a learning difference.  It doesn’t immediately occur to parents that they also need to take care of themselves and reflect on how this new information is going to affect their well being, equilibrium, outlook on life or emotional resources.  A parent’s sustained focus on the child’s well being is hardwired. We are pre-programmed to nurture and protect our offspring. The sense of self-sacrifice is built into our DNA. It is the normal, anticipated reaction, but this nurture instinct is also taken for granted.  Until parents start to burn out. And let’s face it, raising atypical children is often exhausting, discouraging and isolating.

Doctors, pediatricians, teachers, and all types of therapists all depend on parents to be the primary managers of their children’s treatment.  Like the parents themselves, these professionals seldom wonder how is the parent doing.  Often, the parent is handed a laundry list of therapies, interventions, medications or schools to try.  It’s overwhelming.

6 QUESTIONS YOU PROBABLY WON’T HEAR FROM YOUR CHILD’S  DOCTORS:
How are you doing?
How is your family holding up?
Do you need more respite care?
What resources do you have when things get too tough?
Who do you call upon for help?
How can I be of more help to you?

THE BIG IDEAS THAT NOT ENOUGH PEOPLE ARE THINKING ABOUT:

“How is this parent coping? What are the emotional ramifications of having this atypical child? Is this parent receiving enough respite care? Can I depend on this parent, or is he or she cracking under the strain? How can I help support this parent?”

Since these are the questions you probably will not hear,  parents, you must ask them yourself, and you must find the support for yourselves. It sounds like yet another job but it’s critically important.

IS IT SELFISH TO WORRY ABOUT YOUR OWN WELL BEING?

It isn’t selfish, narcissistic, or a waste of time. Your child needs to see a model of happy, competent, and optimistic parents. If they don’t see this attitude at home, where will they learn it?  It takes an enormous amount of mental resiliance to see your children through their day; it’s important to get your own needs taken care of, too!

YOUR CHILD DEPENDS ON HAVING A WELL FUNCTIONING PARENT AT THE HELM

It is entirely possible for your child to succeed in this world with ADHD, or a learning disability, or high-functioning autism, or a myriad of other disabilities!!
It is much less possible for your child to succeed with an outlook that is sad, defeated, and hopeless. We owe it to our children to work on our own mental health not only so we can be stronger people but also so we can be better parents. As they say on airplanes, “If the oxygen masks drop, put on your mask first, then help your child.” That is how you both survive.

YOUR NEW SELF CARE MENU

I believe that all parents of atypical kids need to examine their lives and start creating a self-care menu. This will be your oxygen mask, guaranteeing that you get enough air to breathe and to think clearly. Ask yourself right now, What are a few things that could make me feel more in control or make my life more tolerable? Am I making time for these things?

  • Is it the comfort of friends?
  • Is it having a night out with your girlfriends?
  • Is it getting a weekly massage?
  • Is it Saturday date night with your partner, where neither of you talk about your child?
  • Is it taking a class that has nothing to do with your child’s condition?
  • Is it talking to a sympathetic therapist or counselor on a weekly basis?
  • Is it hiring the housecleaner more often?
  • Is it a refreshing walk in nature?

Your self-care menu should include appetizers (a ten-minute walk around the block) and main courses (like the list above). These are not treats, they are sustenance!

One thing you will instantly realize is that in order to get your soul nourished on a regular basis, you will need to expand your circle of support. Seek the help of your friends, extended family, a faith-based group, or a group of parents like you. It does take a village to raise a child. In the case of atypical kids, it takes an army.

On Kelli Stapleton’s website, her friends have taken over the blog while Kelli is being held in jail without bond. (Kelli’s daughter is recovering at home with her father.) The “Friends of Kelli Stapleton” write:

“We do believe Kelli deserves a fair chance to share her story—which most of [you] know has been difficult and faced with adversity from so many different angles. We hope that by bringing attention to this difficult issue, we will help those families who are in similar situations.”

Kelli Stapleton’s actions were horrific—but they were not unimaginable. The most loving and devoted parents in the world are only human. And humans need air.

Positively Atypical! is dedicated to helping parents stay positive and loving toward their children, themselves and those around them. Please forward this to any parents who might benefit.

Parents, Here Are Your 6 Teachable Moments!

Parenting Atypical Kids, , ,

Parents, Here Are Your 6 Teachable Moments!

19221587_sA teachable moment is supposed to be a moment when your child’s attention has landed on something you want him to learn—and he is actually ready to learn it. More often, parents use “teachable moment” as code for “catastrophe.”  As in, “William dropped all his stuffed animals in the toilet and then flushed it. Ah, that was a teachable moment.”

In everyday life, the challenge for parents is to recognize teachable moments and follow through. It’s not really a matter of waiting until your child is ready to grasp the lesson. It’s a matter of repeating the lesson so often that, sooner or later, it sinks in and becomes second nature.

Here are the skills I believe parents of atypical kids should try to teach their children, along with the right moments to do the teaching.

1. Eye contact: You and your child run into someone you know or are introduced to someone new. Your child stares shyly downward and says nothing or mumbles, “my airplane got lost.”

Your teachable moment: BEFORE your child is approached, remind your child what is expected.  SAY: ‘Neighbor Joanie is walking over to us, remember to look her in the face and say hello’.   If your child is not doing so, don’t be shy, say it aloud: “Look her in the face and say ‘Hello’ ! Good for you!” Every child is capable looking someone in the eye when they are introduced, even if it takes years of training. Don’t hesitate to keep reminding.

2. Manners:  Every child is capable of saying please, excuse me and thank you—again, even if it takes years of training.

Your teachable moment: Every single time your child asks for or accepts any item, task, or favor. Also: You must model this behavior by saying please and thank you yourself, every single time. Your child can learn to do this, and it will make so much difference later on in his or her life.

3. Simple conversation skills: Your child should be able to hold up his or her end of a basic conversation, including asking questions: How are you? What do you like to do in school? Who are your friends? What are your hobbies?

Your teachable moment: Driving in the car is a great time for parents to rehearse these conversations with children so they are at ease with the questions and ready to roll. They can help you make up the questions and, of course, they get to answer the questions too. Model having back and forth conversations with imaginary people or friends, don’t hesitate from adding some humor to it, kids love to laugh at absurdities, like what to say to Mr. Elephant at the zoo or Mr. Ralph who, of course, owns Ralphs grocery store.

4. Planning and organizational skills:  How to clean out a backpack. How to neatly put papers in a folder without them getting crinkled. How to lay out clothes the night before (also builds good planning skills). How to prepare lunch with their parent the night before.

Your teachable moment: After homework is done but before TV privilege time. Now is the time to run through all the necessary prep work for the next day.  The trick is forcing yourself to take the time to teach these skills in a patient and relaxed way at the end of a long day. It’s always so much easier just to do it yourself, right? Don’t! Your little Johnny needs to pack up his own backpack and put it right by the front door all my himself. He can do it!

5. Nutrition: Children must eat foods that are not white. I lost count as to how many parents have told me that their child will only eat exactly 3 foods, over the years. How did that happen? Eating a healthy diet is the most important brain-building activity.

Your teachable moment: Start young. Give them nutritious food before they have an opinion. The world of natural food is delicious! Whole Foods offers cooking classes for kids or you can buy simple cook books with pictures and experiment.  Do not succumb to every plea for orange-dyed snacks, and oversalted, oversugared pseudo-food that only benefits food industries but certainly not your child.  DO NOT. EVER. PLEASE.

6. Entertainment: Do not introduce your child to iPads or iPhones until at least age 5.  You have control until then.  Use your parental control and your wisdom. Please.  One parent I know equated the iPad to vodka for an alcoholic. It can be that addictive. Why would you want to do that to your child? From age 0-5 is the time for a child’s sensorium to develop, including sensory relationship with the world. That does not include using a finger to swipe for immediate gratification, but does include crawling, touching, tasting, sensing and interacting with real people in real time.

Your teachable moment: Any moment when you are stressed and it would be so much easier just to hand over the device. No, make that BEFORE you are stressed.  PLAN AHEAD.  Are you going to be in the car for a long stretch? Doctor waiting room? Long meeting? Long car pool line? Remember drawing on a scratch pad with crayons? Picture books? CDs? If you can’t listen to Radio Disney for one more second, try movie soundtracks or children’s classics like “Peter and the Wolf.”  Plan to have conversation topics or plan songs from your childhood to teach your child while waiting. Teach them finger games or other ways to entertain themselves for those few minutes.

There are many more teachable moments that are available to parents if they can be mindful and alert to their children’s behaviors.  What are some teachable moments that have worked for you?

Parents: Don’t Let Your Disappointment Defeat You

Support for Parents of Children with Special Needs, , , , , ,

Screen Shot 2013-09-22 at 6.06.00 PMIt’s a taboo feeling you don’t dare discuss: you’re disappointed by your child.

If you are like most parents of atypical kids, you may believe you’re supposed to take your child’s atypical development in stride and be grateful for your uniquely wonderful son or daughter—regardless of the behavioral, learning, or medical challenges you have to deal with every day.

You may think you’re not allowed to feel angry, resentful, or sad.

You may try to suppress your disappointment and condemn yourself because you believe it means you’re selfish and unkind. And you may never, ever talk about your “shameful” feelings with your friends or even your partner.

But denying your feelings can be bad for your mental health and could be dangerous for your child.

A recent study found that children with disabilities are at almost double the average risk for child abuse. How is this horrible statistic possible? One reason could be that parents who do not face their own feelings about their special needs kids are more likely to take out their resentment and disappointment on the children themselves. This doesn’t always mean physical abuse. There are other more subtle ways your buried disappointment may be harming your child.

How Disappointed Parents Take It Out on Their Kids

In my practice as a neuropsychologist, I’ve witnessed lots of parents with myriads of unpleasant feelings that they aren’t ready to deal with yet. Parents may love their children and work hard to get them the best care but often, their unacknowledged feelings get in the way. Here are a few common parental emotional responses to three types of special-needs kids.

Dyslexic child and ‘fix-it’ parent. This is the parent who is accustomed to solving difficult problems at work. He comes home every evening increasingly fed up by his child, who is experiencing repeated failures at school and whose self-esteem is falling. Dad decides to fix it by reading with his child every night, thereby “teaching him how to read.” Before bed. Every night. Dyslexia requires very specific teaching methods provided by trained professionals, but Dad either doesn’t know this or refuses to believe it. He feels angry and unnerved by the apparent failure of his child—he is not used to failure and doesn’t like it. He ends up in my office wondering if his child is lazy and manipulative.

High-functioning autistic child and the socially conscious parent. The set up for disappointment is the child’s lack of social skills. While many high-functioning autistic children are smart in school, they inevitably push other kids too hard, blurt out embarrassing statements in the most inappropriate places (“Mom, my butt itches!” “Look at that fat ugly person!”), or pick their nose during school choir performance. The parent feels humiliated and angry. Parents may be unintentionally gruff with their child, lecture them, or lash out.

Developmentally delayed or low IQ child and high achieving  parent. In a family of high achievers, the arrival of a child who is cognitively delayed almost always causes some disappointment, frustration, and embarrassment. A parent may think, How does he not understand that he is acting like a two year old? Why does he persist in throwing a tantrum…or playing with nursery-age toys…or not understanding what we’re talking about at the dinner table? Parents can descend into sarcasm, anger, or physical punishment, especially when they think their child is doing these behaviors to ‘test’ or ‘tease’ their parent.

You might think these parents must be heartless, but they are not. They are typical parents engaged in raising what they had hoped would be typical children. And the feelings emerge. What to do?

5 Ways to Tackle Your Disappointment, Starting Now

You can’t pretend your way out of disappointment—your child knows you too well. Even a seriously impaired child will inevitably ask the heartbreaking question, “Mommy, why are you so mad at me?” But there are actions you can take today to come to terms with your feelings and learn how to manage them.

1. Be honest with yourself—and then talk about it.

Examine yourself, and be totally honest. Do I harbor anger, resentment, disappointment, or embarrassment about my child? Many parents do—dig deeper if you can’t find it. Remember the cancelled ski trip? The tantrum at the neighbor’s birthday party? Find a confidante and talk about your feelings. (Make sure it is someone you really trust, because this could become fodder for gossip.) Better yet, schedule a few sessions with a therapist. The therapist can guide you toward self-discovery and suggest healthy outlets for your feelings, along with ways to rejuvenate. There are many low fee or no fee therapy centers so it needn’t place another financial burden on you.  But it can help a lot.

2. Find out more about your child’s strengths and limitations.

Many parents are better able to calm their emotional responses after they read a full diagnostic assessment that includes their child’s strengths as well as limitations. Learning more about your child’s condition may help you adjust your expectations, recognize signs of progress, and manage your emotions.  If you are not satisfied with your current evaluation, seek a second opinion. Hopefully, you will be helped by a professional that can offer you more than cookie cutter recommendations and can provide true insight.

3. Every night, think of one thing that makes you proud of your child.

Think about it before going to bed. Remember, you will need to think about that one thing the next day (maybe a lot). I’m sure your child has many things to be proud of. Start thinking about one thing at a time, and the list will grow.

4. Find a support group in your area.

Whether your child’s condition is rare or commonplace, there are support groups for almost everything. Many parents find that learning to commiserate, laugh, cry and share stories is the most healing therapy.

5. Know when to get help.

If you feel that your emotions or your spouse/partner/shared caretaker’s emotions get out of control, or you worry when reading this that you have crossed the red line into abusive behavior with your child, GET HELP NOW. Do not continue to avoid the need to take care of your feelings in order to help your child. Talk with a therapist or start with www.childhelp.org for more information.

Positively Atypical! is dedicated to helping parents stay positive and loving toward their children, themselves and those around them. Please forward this to any parents who might benefit.

Umbrella Parents, Part 2: How Much Is Too Much?

Dealing with Teachers and Schools, Helicopter parents, Support for Parents of Children with Special Needs, , ,
Sometimes you have to retract the umbrella to find out what your kids are capable of.
Sometimes you have to retract the umbrella to find out what your kids are capable of.

Last post, I defined “umbrella parents” as parents who have to do what it takes to get their child’s needs served, even if it means looking like a ‘smother mother’ to other parents. I have always advocated parents being fully in the ring with their kids—and urge them to do whatever it takes to get their child’s needs met at school, camp, sports teams and elsewhere.

In that post, I also talked about executive function development and how it is often delayed in atypical children. This makes it essential for good parents to pave the way for their kids. Teachers, coaches, counselors and well-meaning parents of other children can be unintentionally cruel unless they are instructed otherwise. Your child clearly needs strong parental support as he or she is growing up.

But when does protecting your child become a habit rather than a necessity?

Or, as the exhausted mother of a teen put it, “Just exactly until when do we have to keep doing all of this?”

What Are Habituated Parents?

Umbrella parenting takes a lot of energy, planning and anticipating daily twists and turns of life. But eventually, it’s time to let go…. slowly. Sometimes this doesn’t happen fully until young adulthood, but it’s never too early to try to release the reins and see what happens, if only for a moment. Otherwise, parents risk becoming habituated to their children’s dependency and forget that the goal of umbrella parenting is to ultimately let go.

Here is an example of what I mean by a habituated parent:

Herbert is 11 years old. He’s so anxious about coming to me for testing that he is lying on the floor of the waiting room at his mother’s feet. She apologizes for him but does not make him sit up. He is, you see, anxious.

Herbert sullenly shuffles into my office and slumps into the chair. Mom checks that he has his backpack and enough snacks, and then tells him she loves him twice before leaving.

Who is the anxious one here?

Herbert slumps passively through his days while Mom takes care of all his needs. He is not developing the skills he needs to navigate the world independently or advocate for himself. Mom is too afraid for him to teach him what he needs to know. She has forgotten to retract the umbrella once in a while to help him learn to fend for himself.

Retracting the Umbrella

Instead of worrying yourself ragged like Herbert’s mom, try stepping back now and then, just a little.

You may start to notice that your child is capable of much more than you thought he could do. This change may come in stages, or progress at a more rapid pace. Take your cue from how things go in school. I find that many parents have no idea how independent or resourceful their child can be at school (or how polite and interactive), because he regresses as soon as he gets home.

Your child may be aware that she has a problem but is unable to act on the coping strategies she is learning right away. Once she matures that extra little bit, things suddenly click.

You may be surprised at how much your child can manage on his own, when you start to retract that umbrella bit by bit.  If you have been a vigilant umbrella parent for a while and are wondering if it’s time to step back,  take that baby step to see how it goes. Remember: even a small step can be a major accomplishment for your child. Give it a try and  be sure to share with us and with  other “positively atypical” parents and friends about your experience.

Next Post: Key teachable moments for every child.