Keeping kids on the spectrum safe can be a challenge in the warm weather months. This article addresses some of those concerns.
Will painting five previously unique diagnoses as “autism spectrum” complicate matters or lead to streamlined access to care? Parents and clinicians alike will have to wait and see. Click to read more on Janeen’s Goodtherapy blog.
ASD Parents’ Silent Threat
As a mental health therapist, I see a variety of symptoms in my office on a daily basis. But there is one constant cluster of symptoms that I see most. It includes the following:
● flashbacks and intrusive thoughts
● exaggerated startle response
● difficulty sleeping
● anxious and/or angry moods
● sense of fear and/or hypervigilance
Additionally, some of these same patients also describe
● emotional numbness
● feeling as though they don’t care about anything
● feelings of detachment
● a lack of interest in normal activities
● headaches, fevers, body aches, and physical numbness
Due to the coverage in our media lately, with soldiers returning from Iraq, you probably guessed that I’m talking about Post Traumatic Stress Disorder, (or PTSD). In basic terms, it occurs when soldiers experience such a high level of stress and threat to their physical well-being, that their nervous systems never have a chance to return to baseline after leaving the battlefield. Only, I don’t treat soldiers, I treat parents. The battlefield…their own homes and communities. And the enemy isn’t Al Qaeda, it’s Autism.
I’ve often heard the term Warrior Moms/Dads associated with parents raising children with autism, and I couldn’t agree more. The ASD parents I know are some of the strongest, most resilient, persistent, fighters I have ever met. They kick butt and take no prisoners. But they never get to leave the battlefield. Even R&R is hard to come by. And it turns out, you can’t be a triumphant warrior and escape the fallout. Consequently we have a large number of wounded warriors among us. For some, the most disturbing memory was the initial diagnosis, and they’re haunted by flashbacks of being bullied by doctors who said they were crazy to think their children regressed after age 2. For others, it’s the never ending stress of the battles we fight with the school district, insurance companies, pharmacies, labs, or grocery store clerk. For our family, and too many others, it’s the fear or the actual experience of having your child wander off and go missing.
In order to qualify for a diagnosis of PTSD, the symptoms must persist for over a month. Those experiencing symptoms for less than a month, get the diagnosis of Acute Stress Disorder or….ASD. (Yes, I see the coincidence in the acronym and no, I’m not making that up.) I have a 14-year-old son with autism who regressed around age 2. So, I’m guessing after 12 years of recurring trauma and hypervigilance, my husband and I have cycled through PTSD/ASD a few times each. (My husband, who is extremely competitive, tells me he’s ahead by one.)
The good news is, treatment is being researched and refined more than ever in history. EMDR (Eye Movement Desensitisation and Reprocessing) Therapy is a relatively new approach to treating PTSD and anxiety with stunning results. Next time, I will address how EMDR works and why it’s especially effective for these warrior parents. In the meantime, if you or someone you love is experiencing symptoms, or you have further questions, contact me: janeen@PuzzlePeaceCounseling.com.
I recently read a study claiming that mothers of autistic children were almost twice as likely to suffer from depression than their typical counterparts. As a “card-carrying member” of this particular club, this did not surprise me. I found myself strangely comforted to see that connection being made in a clinical trial.
Years of researching the genetic and biomedical connections in autism made me aware of the chicken/egg argument. Was it my family history that played a part in my child’s condition? Or did my child’s condition cause mine? In my personal situation, we have lots of eggs AND chickens. There is a family history of autoimmune and mood disorders, AND I have a child whose behavioral issues would’ve made Lovaas himself throw up his hands in despair.
My house is a proverbial chicken coop. Or a funny farm…depending on how much you value political correctness. I, for one, still use the word “Autistic”, which in some mom circles is the equivalent of relegating my child to a padded room and straight jacket. An idea that has crossed my mind on my worst days. But, I digress.
Either way, I am finding more often than not, the spectrum mothers I befriend and counsel are either taking or have taken a mood altering medication. I actually cannot think of one mom off the top of my head who does not fit this profile, and I have worked and talked with hundreds of moms. Not that there’s anything wrong with that…I’m all for better living through chemistry. But it begs the question, “How well are we taking care of ourselves as parents?”
Everything is relative; The child who repeatedly asks the same questions and cannot seem to stop perseverating on the topic of United States presidents can be just as taxing as the child who swiftly kicks a hole in the drywall of your living room for no apparent reason. On a weekly basis. And even after you fix them he finds new places to make them. And you start to wonder if you should just hire a contractor “on retainer”…but I digress again.
Most moms I know are so busy running their kids to OT, PT, ABA, and the rest of the alphabet soup of therapies, that they leave no time for themselves to rest, reflect, ponder or even pray. Now, I am not saying these moms should be faulted in any way. I certainly remember all too well, what I was told by the “professionals” after first hearing the “A” word; There was little that could be done for my child, but what could be done to move my child forward was intensive, one to one therapy during a small “window” of opportunistic time. What choice did that leave me, really? My child is three, so I start doing the math. If I can involve him in 40 hours a week of therapies for the next two years then he may have a shot at regular kindergarten. Maybe I could even start saving for college instead of a group home. There’s not much of a choice involved. You get Nike with the autism and just do it.
But no one warned me of the pitfalls. And to tell you the truth, if they had, I would venture to guess that I wouldn’t have heeded their warnings. If someone had told me my marriage was going to break into tiny little pieces, I would’ve told them our relationship was strong enough. If they would’ve told me that I was going to drown in enough debt to finance three new cars, I would’ve said I‘d worry about it later. And if they would’ve told me I would be clinically depressed, curled up on the couch in a fetal position two years into it, I would’ve told them they were the one’s who were crazy.
In a strange way I’m glad “they” didn’t tell me any of it. As painful as they were, and as much as I would never want to re-live them, it is these experiences that made me, well…me. As a result, I embarked on a new journey of mental health…this time for myself.
There are few times in life when unsolicited advice is appropriate; One, when you’re a mom, talking to your own kids, and two, at a baby shower where someone is about to become a mom. Recently, my sweet cousin, Jaime and her husband made the exciting discovery that they were expecting twin girls. Since the two of us live at least 900 miles away from one another, I was unable to attend her shower. Therefore, I decided to include the following letter with the baby gift I recently sent.
I couldn’t be happier for you! Two baby girls will be both a blessing, an adventure, and the greatest learning experience of your life. You and your husband definitely possess all the gifts and talents necessary to take on this wonderful new chapter in your lives. However, no matter how prepared we think we are for parenthood, the ugly truth is, we’re never really ready. Life is funny that way. Some of the most amazing lessons I’ve learned have come through the challenges of parenthood. So I hope that you will keep this letter (and my phone number 😉 in a safe place and look at it every so often on days when your girls have you wondering, “What was I thinking!” And you WILL have those days. Below are the top five things I have learned and wished I’d learned sooner in my parenting journey. I share them with love and humility.
Learn how to ask for help. Life is hard enough to go through it thinking you can do it all yourself. Add a newborn baby to the mix, and the stress is compounded. Add twins, and you really do need a village. Be mindful of who is in that village and call on them when you need it. Got great parents who can help with nurturing and spoil those kids rotten? Yep, I know you do so check that off your list. Identify a few friends who can “talk you off your ledge” on days when you feel like jumping. Asking for help is not a sign of weakness, it’s a sign of strength. Reach out to other moms who have “been there, done that”. It takes a smart woman to know her limitations. I spent far too many days either being a martyr or thinking I had to “do it myself if I wanted it done”. It’s not worth it.
Don’t forget about your husband. The level of love you will have for your kids is something that can’t even be described. And you are about to experience it. But between the stress of no sleep and the learning curve of child care, there will inevitably be days when you and your husband look at one another and wonder what attracted you to them in the first place. Accept that he will do things differently than you will when it comes to the kids. For years I viewed this as a negative thing in my own marriage. However, over time I have learned that our differences are what make us such a good team when it comes to raising kids. Identify each of your strengths and be aware of your weaknesses. Make it work for you. Be patient with yourself, and with him. Do whatever you need to do to make the marriage work. Time away from the kids is crucial. Sometimes a good marriage counselor is what is needed to get you over the hump. Whatever you need to do, do it.
Self-care is crucial. Listen to me…this is not an option. It is required. It feels counterproductive to what you think parenting is all about. But trust me, no one else is going to take care of YOU but YOU. You must be mindful of setting aside time for yourself, doing what makes you happy and taking care of your own needs. This is NOT selfishness, it’s self-preservation. There is a reason why the flight attendant on an airplane tells you to put your oxygen mask on first before helping others. If the plane is going down, you need to be able to breathe…especially if you’re the pilot.
The goal of parenting is not to make your kids “happy”. As a counselor, I am witnessing the fallout of parents who have made the goal of raising kids, to either make them happy, or care for all their needs. Many do this without even realizing what they’re doing. Consequently, I’m treating a lot of co-dependent, helpless young people who don’t know how to have their needs met or set goals. As with any new endeavor, keeping the final goal in mind will ensure that you’re on the right track. There are seasons in parenting. When they’re babies, they will need to have their needs met by you. As they grow, the focus changes from meeting their needs to keeping them safe, teaching them how to care for themselves and how to do for themselves. Eventually the goal is to let them fly like baby birds from a nest. Makes you sad to think about, right? Don’t worry, it will get easier. Your heart will break several times in the process; that’s a given. But the anguish and trials of puberty will make it much easier to let them go when it’s time.
Perfectionism has no place in parenting. Let go of the ideals you have in your head about what it will be like or what you’re “supposed” to do as a mother. As I often tell my patients, “Don’t should all over yourself.” We mommies can drive ourselves crazy thinking there is a “right” way to do something and maybe we’re not doing it. Let that go. You will find your own way of doing things and the important thing is that it’s what you’re comfortable with. You WILL eventually be able to wear makeup and jewelry again. You WILL eventually listen to music other than The Wiggles. You WILL eventually lose the baby weight. You WILL eventually get comfortable with being occasionally uncomfortable. If you gain only this insight in raising your girls, you will lead by example in teaching them so much more about accepting themselves for who they are. Being real is so much better than being perfect.
With much love and many prayers for a healthy delivery,
While driving my eleven-year-old daughter to theater camp last week, she asked me, “Mom, why do people pay you to give them advice when they can just talk to a friend?”
As a mental health counselor with a growing private practice, my first inclination was to defend my profession. However, when I took a moment to consider the source of the question, I was struck by her insightful curiosity. Despite a person’s age, there are many impressions of the counseling world that are either skewed, misguided or just plain incorrect. I’d like to address a few of the common misconceptions I’ve come across in my professional experience.
Myth #1: Counseling is for crazy people, and I’m not crazy.
I hear this one far too often. “Crazy” is a relative term, I often tell my patients; You don’t have to have a mental health diagnosis to have experienced feeling “crazy” at one time or another in your life. All of us have been there. This misconception about counseling is often expressed by people who are hesitant about examining their thoughts and emotions, for fear of what they might find there. Often it’s not as bad as they feared.
Myth #2: Counselors are advice-givers.
When I explained to my daughter that advice was something I rarely gave, she was surprised. I explained that I help people come to their own conclusions about what’s right for them, help them identify patterns in their life that may not be working, and assist them in making positive changes. My daughter was confused, because she didn’t realize people had the freedom to be able to do that. Like many of the people who first begin the counseling process, she assumed the only reason someone would tell another person their problems, was to be told what to do. There are occasions when I will coach someone on a technique, or point out an inconsistency in their behavior when it doesn’t bring them closer to their goals, but I view these as “teaching to fish” moments. I rarely “hand out fish”.
Myth #3: Telling my personal business to a complete stranger has no value.
Yes, when a new patient comes into my office for the first time, we are obviously strangers. It takes courage and trust to disclose a great deal of personal background information, and share your innermost thoughts and feelings. But it is no more invasive than a trip to a medical doctor where you are asked to remove your clothing, don a dressing gown that doesn’t close completely in the back, voluntarily disclose your body weight, and leave behind your most private bodily fluids for assessment. So, why do we accept and latter process so much more willingly? Sadly, our society has come to value caring for the physical body over the mind and spirit. Consequently, what we are unfamiliar with, we create assumptions about, and inadvertently devalue. We are quick to run to a doctor at the first sign of physical illness but rarely examine our emotional state, decision-making processes or coping skills. Yet every day, more research points to how these things can directly effect our physical health.
The counseling process can be a scary one, and I admire each of my patients for their courage in being willing to examine their innermost thoughts, feelings and motives in an effort to improve their lives. They are not crazy, they are courageous. By the second or third visit, we are no longer strangers; we are partners working toward a common goal that they themselves have identified. And those embarrassing dressing gowns that don’t close in the back, are not required.