Category Archives: Support for Parents of Children with Special Needs

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: 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.

When Is “Too Much” Just Enough?

Dealing with Teachers and Schools, Helicopter parents, Support for Parents of Children with Special Needs, , , , ,
Umbrella Parents
Umbrella parents always know when the rain is coming, and are ready with a metaphorical umbrella.

You know the ones.  The moms or dads with chronically worried faces, who pre-empt every group parent meeting to talk about their child’s special needs, and seem oblivious to the eye-rolling of parents around them.  The ones who wait outside the classroom at the end of each day to make sure their child is bringing home the right books. The parents who take the longest in the parent-teacher conferences.  “Helicopter parents.”   “Smother mothers.”

You know them because they are us and they are you. Parents of atypical kids do stand out from the rest; they take care of their children in ways that other moms and dads don’t have to, risking criticism from other parents and weary sighs from teachers.  They look like they are helicopter parents, but here is the truth that only you know:

They are doing what it takes to get their kid through the day.  Sometimes “too much” is just enough.

Hello, Umbrella Parents!

Instead of helicopter parents or smother mothers, I like to refer to these devoted moms and dads as umbrella parents. Good parents know what their children need, anticipate those needs, and take action. They are like weathermen who know when the rain is coming and are ready with a metaphorical umbrella.

When a child is diagnosed as atypical, I always explain to parents that they will need to be more attuned to the child’s needs than the average parent, at least for a while. Helicopter instincts are a very practical response to dealing with your special needs child.

Why? Because most atypical children experience some impairment and delay of their executive function.  Executive function is a broad term for the process that takes place in frontal lobe of the brain: the ability to anticipate, plan, problem-solve, organize, and self-monitor one’s social behaviors.  That pretty much sums up the job description of a parent, doesn’t it?

Umbrella parents don’t hesitate to protect their kids

When parents know that their children will have problems in particular areas, not only is it important to intercede, pave the way for them, and inform those adults who teach them, it is critical.  Teachers and coaches are busy running programs with lots of kids, and the problems of a single child just don’t stand out—until they do.

At that point, how the coach or teacher treats the child can lead to a series of humiliations, unfortunate discipline tactics, and subsequent self-esteem problems for the child. Coaches, counselors, and some teachers can be too aggressive in their tactics unless they are informed and instructed about better methods to deal with a child who is different.

So parents, do not hesitate to be your child’s advocate! Stand up, call it out, pay no attention to the other parents who think you are helicoptering. You are protecting your child!

The 5 W’s of  Umbrella Parenting

When your child is beginning a new class, team, or other activity, you have the chance to set the stage for a positive experience for your child and a good relationship with the teacher or coach. It is your chance to replace the “helicopter” label with “attentive and available.”  Just remember the 5 W’s:

  • Who? Who should be in the meeting? When you ask to meet with the teacher, coach or activity leader, it’s best if you bring along backup. The more people to support you, the better.  A spouse, neighbor or even your child’s therapist.  There is strength in numbers; moms rarely get heard as well as a professional who is saying the same thing.
  • What? What should the parent bring to the meeting? A note from a doctor or a one page recommendation list could help the process.  For example, a note could say: “Andy suffers from an auditory processing disorder. This means that he may not hear your instructions the first time. Please do not yell at him for this, but do repeat it a few times if he seems confused.  You could also meet with him before the game to see if he has any questions.”You could also attach a brief printout about the disorder for him to read. Note that what the doctor is saying is exactly what you will say, but somehow the doctor or therapist note provides more weight to your requests.
  • When? When should the meeting take place? The earlier the better. I often advise parents to meet with teachers a few days before school starts to debrief them on your child’s needs.  Depending on how many adjustments your child needs, you may want 15 minutes up to a half hour.Ask the teacher for “15 minutes of your time” just to briefly explain the situation and why you, the parent, will be hovering a bit throughout the year.
  • Where? Location matters. You will want privacy, away from other parents.  You also may not want to involve your child if he or she is not ready to talk about his issues (stay tuned for a future blog post on this)
  • Why? The point of this first little meeting is to set the stage with the teacher, explain what the situation is, and communicate that you are a calm, attentive parent and want to help the teacher so that your child is not disruptive and also is getting what he or she needs.

Stay tuned for my next post, when I will talk about the flip side of umbrella parenting: over-indulging your kid, soothing your own nerves instead of his, and when and how to let go.

Doing some research and helping come up with a prioritized action plan can help you cope with your child's diagnosis.

Chin Up – Diagnosis is Not the End Game!

Child's Diagnosis, Parenting Kids with Special Needs, Support for Parents of Children with Special Needs, , , , , , , , ,
Doing some research and helping come up with a prioritized action plan can help you cope with your child's diagnosis.
Doing some research and helping come up with a prioritized action plan can help you cope with your child’s diagnosis.

Hearing your child’s diagnosis for the first time is an experience that will stay with you forever. Even if you have long suspected that something isn’t right, knowing it for sure can throw you into a state of paralysis.

It’s a neurobiological response: the enormity of the news temporarily overrides your ability to act or make decisions. Your mind is swamped with frightening questions: What does this mean for my child, for our family, for me?

More families are going to have to confront diagnoses such as ADHD, autism spectrum, and learning disorders such as dyslexia. This is partly because the DSM-5 has broadened the definitions of some disorders, as I mentioned in my last post.

But parents should know that any diagnosis is only a reflection of their child’s developmental process at one point in time. With appropriate interventions, a child who displays a certain set of behaviors at age 5 can be very different at age 15. Or age 25. Children can and do grow and develop.  Keep that in mind as you are absorbing your child’s diagnosis.

3 Steps to Accepting Your Child’s Diagnosis

1. Be aware of your feelings.  Your reactions to your child’s diagnosis are hard-wired, based in the same evolutionary part of the brain that triggers fear when an animal is threatened. If you are initially feeling paralyzed or in denial, it’s a normal response.

Your emotional reactions to your child’s condition will have a big impact on the child’s well-being, so from now on try to be mindful of how you are feeling and how it is affecting your behavior in the presence of your son or daughter.

2. Ask yourself, “Does this diagnosis fit with the child I know?” If what the doctor is saying is not consistent with what you know about your child, something may be off. No one knows your child better than you do.

It’s true that most parents go through a phase of disbelief and denial about a diagnosis, but underneath the denial there is usually a feeling of, Yes, that’s him. He always struggled with language. Or, Yes, his frustration level has always seemed unusual to me . . . He has always seemed like he doesn’t really know how to make friends. . . He isn’t reading and all his friends are. . . .Yes, there is something wrong.

If the diagnosis feels accurate on a gut level, it probably is.

Occasionally, however, the doctors don’t get it right. But most often, they do get it right, but it makes you angry and your instinct is to push back and say “That’s not my kid!”  I will discuss anger as a reaction to having an atypical kid in a future post. But, for now, take a mental note of your feelings and keep alert.

Maybe you wonder if you should  get a second opinion? If you don’t trust your own instincts, seek the opinion of someone else who is frequently around your child—a spouse, grandparent, sister, aunt, neighbor, or best friend. But also please remember that professionals who are trained in diagnosis and treatment have your child’s best interests in mind and don’t give out diagnoses randomly.

3. Take action: Work with your diagnostician to prioritize an action plan. Many children are diagnosed with more than one condition. The parents will receive a list of recommendations that can be 5 or 10 items long and include things like a psychiatrist for medications, an educational therapist, speech therapist, occupational therapist, soccer coach, and family therapy. And you will get books and articles to read as well as recommendations for several ‘cutting edge’ therapies. It’s a lot to take in!

Obviously, parents cannot do all these things at once, and they end up feeling horribly overwhelmed.

So go back to the person who diagnosed your child and ask for a prioritized action plan and a timeline. What is most important? What needs to happen when? For instance, many people recommend tackling intensive remediation during the summer, but you know  that this won’t work for your child. She needs to be outside playing.

Ask the diagnostician to consider the needs of the whole child rather than just writing prescriptions. If the diagnostician cannot do so, you may want to take your results to another therapist or doctor and ask that person to prioritize your plan.

In this blog I’ll continue to give you advice on managing your child’s treatment and —just as important—keeping yourself calm, focused and cared-for during the months ahead.

So, chin up, chest out, right foot forward, you can do this!

Has your son or daughter recently been diagnosed with one of these conditions? How did you react? Tell me your story in the comments — and don’t forget to sign up for blog updates in the sidebar!