June 30, 2010
Summer Solstice
It’s the first official day of summer, and Justin and I are barreling down Route 33 in our usual “ten minutes late” mode to his semi-monthly appointment with his psychiatrist. No, we’re not making the pilgrimage for my son to discuss my failings as his mother, although I wish fervently he could articulate his disdain, and would happily spend fifty minutes listening to him regale me with my transgressions. In fact, we are really going just to touch base with the good doctor and receive refills for the two prescriptions Justin is taking, prescriptions neither his regular pediatrician nor his developmental pediatrician for some reason feel competent to prescribe for him. They informed me of their collective hesitancy about a year ago, hence one more professional was added to Justin’s arsenal. My son is a regular contributor to a myriad of physician’s 529 plans.
As I conjure up my best Jersey driving techniques in the hope that I will arrive prior to the three other families who are probably also scheduled for our 4:00 appointment, I permit my mind to drift back to other first days of summer, those that were mine. I grew up just twenty minutes north of our intended destination in a small beach town a mile square, one that has been lovingly referred to as a “bubble” on many occasions. The first true day of summer did not necessarily coincide with the calendar back then for me. It did however involve a closed educational facility, a sweaty bike ride or drive to our beach club, aloe for the burns I would incur from flagrant negligence toward my skin, and sometimes, if I was really lucky, a trip to DQ in our neighboring town (before they sold out and became “Cone Zone”, for God’s sake). Childhood, and its rewards, was far simpler back then, and it didn’t take much to make me happy. On no occasion did the onslaught of my summer vacation herald a trip to the shrink. I guess I should be grateful.
Unfortunately, Justin’s life is frequently punctuated by doctor’s visits, and since this one has been postponed twice by the clinician’s office I am anxious to get it over with so we won’t have to fight traffic and return during the summer season. After a harrowing experience navigating the last few miles of our journey (I had finally adhered my “I love someone with autism” bumper sticker in the hopes that my native drivers would take pity on me and not permanently embed their vehicles up my ass, but my dreams are not to be realized), I actually remembered to make the quick right I usually miss after the auto supply store. After ascertaining that indeed, once again, the miniature parking lot is full, I negotiate a reasonably legal parking spot on the street which I believe still resides in the same zip code. After a brief skirmish where for some unknown reason Justin is insisting on bringing all one hundred of mommy’s favorite CDs into the doctor’s office (I win this one), I am able to hustle my semi-petulant son across the parking lot and down the subterranean stairs to the underground offices, where we wait somewhat patiently to be buzzed into the facility. This last impediment to access is new, and I wonder what has precipitated the sign that reads “please wait to be buzzed in for safety’s sake”. I wonder if this new feature came about as a result of a patient’s reaction to the parking situation.
We wait in line behind a woman who is expressing a deep discontent over the fact that her child’s supposed father has once again failed to provide the necessary bodily fluids for a paternity test, and although my son is straining towards the waiting room door with an elasticity reminiscent of Gumby, I have to flash her a sympathetic look. Father’s Day may still be a recent memory, but some dads just really suck.
After a few minutes it is finally our turn, and miraculously I still have one of Justin’s extremities in my possession. I make the same query I do at every doctor’s visit, “how many ahead of us?”, and I am told one in the office, and one in the hopper. Unless one of these patients is in crisis that translates to under half an hour, which is a completely attainable goal for Justin as long as we have access to the nearby waiting room. I have come with my usual accoutrement, an arsenal which includes not one but two DVD players in case one decides to die, a retinue of disks for said player, three or four hand-held games, juice boxes, and several assorted snacks. These implements, coupled with the books, videos, and iPhones Justin will try to steal from unsuspecting parents, will happily keep him occupied until the time of our appointment. I quickly bend down, gather my mommy bags, and usher Justin into the abnormally (even for this office) packed waiting area. There are at least eight kids and as many adults cavorting around a room not much larger than my modest walk-in closet, and as I attempt to carve out some space for Justin one woman makes immediate eye contact with me. I smile, say “inner circle of hell, huh?”, she laughs, and we have instant rapport. We both know we’d rather be anywhere than here on this summer solstice.
Despite the chaos raging around him Justin settles in for a snack and “Up” on his personal small screen, and soon has an audience to boot. He is gracious in sharing his film, but I notice he is eyeing several iPhones within arm’s reach of his seat, and I am immediately on guard. My son is an excellent multi-tasker, and would think nothing of confiscating some poor parent’s entire life while simultaneously enjoying the wonders of Pixar. I am so engrossed in this mission I barely register the soft voice of a secretary I haven’t seen before, one who gently tells us that everyone who is not here for the 4:00 appointment must leave the room. I engage my peripheral vision while maintaining my primary view of Justin, and notice about half the room, including all of the children, begins to exit, including my new friend and her three kids. I quickly divert my eyes back to my son when I realize one of his “fans” is eyeing Justin’s small movie screen, and after a minute intervention I settle back in my chair and try to relax. I am within inches of reading a Redbook article on the recycled grapefruit diet and finally solving my weight problems for good when another secretary walks in the room, looks at me, and asks if I’m here for the 4:00 meeting. Finally, comprehension dawns.
Oh my God. This is a support group meeting. They are using the waiting area for a support group meeting. They are going to try to get me and Justin to sit in that crappy hallway and wait for our appointment. If we leave this room Justin will either think it’s our turn to see the doctor, or that we’re going home. This is going to be SO unpleasant.
Perhaps I should stay for the support group after all.
I acknowledge to myself that this is not our psychologist’s secretary, that she is probably just the “waiting room lackey”, and has no idea what is about to ensue. I summon up the last remnants of polite behavior I still possess, and ask her “where exactly will you be putting us, the mom and son with autism who’s forte is neither waiting nor change?”
I don’t put it in exactly those terms.
She expresses her regret that we have to move, and suggests two chairs at the end of the hallway, or two seats farther down the road, in a lovely section of the building near the lavatories. I comfort myself with the notion that at least the latter is above ground. There will be light, and proximity to toilets. It can’t be all bad.
When Justin realizes he is neither next in line to see the doctor nor about to escape to my car to rifle through mommy’s CD collection, he implodes. As we make our way down the hall my newfound acquaintance tells two of her kids to get off of the chairs placed at the end of the hallway, smiles at me, and ushers her children to settle on the floor near the psychologist’s office. I am now certain she is the appointment prior to mine. Her kids look pretty happy. I’m hoping they’re not secretly hoarding mommy issues.
For the next fifteen consecutive minutes my oldest son rails against the fates, the injustice of having been barred from his preferred location. I sing to him, which briefly pacifies the beast within. I offer him his generally preferred toys, all of which are subsequently reviled. Justin’s primary reinforcer at the moment is egress, and no potato chip is going to pacify that need. To his credit there is not one pinch amongst the tears, not one grab, just angst. I permit him to express his discontent, and doors up and down the corridor close. For over a year this child has waited in the appropriate receptacle for his appointments calmly and with good humor, with far more maturity than his mother. On several occasions he has waited for almost an hour, allowing me to read him almost every beleaguered book in the now coveted waiting area. In the past, he has been a paragon of patience.
Now, he is pissed. So am I.
After fifteen interminable minutes the appointment before me concludes, and we are summoned. Justin makes a brief run for the exit, but I manage to corral him into the boxcar of the psychologist’s office. He promptly attempts to dismantle his scale, lamp, and makes a quick attempt at reconfiguring his computer. I intervene, but my attempts are half-hearted at best. The doctor asks us how Justin is doing, and while I wish to reply “isn’t it obvious?” I hold my tongue, let him unfurl his repertoire of queries. I explain to him that Justin needs a waiting room if he’s going to have to wait for an appointment. The good doctor responds that it’s a communal building, and if they schedule support groups in that room, it’s out of his control. I respond, in my most grown-up, restrained voice, that my son has autism, he needs the familiarity of routine, a place to contain his impulsivity. I remind him that Justin has attended beautifully in that space for over a year, no matter how backed- up the doctor’s appointments have become. I suggest, respectfully I might add, that if I can’t be guaranteed a safe place for my son to wait prior to an appointment, a visit his parents are paying for I comment silently to myself, that we might not be able to return here in the fall.
In the most dulcet of tones, Justin’s psychologist responds “well, you need to do what you have to do”. He is calm, docile in his response. I call it “shrinkspeak”.
Now, I’m really pissed.
As as we run through our staged script, our litany of request and response that rarely deviates, the one thousandth suggestion for a behavioral plan for my son’s closet interventions, the unrealistic offering of the DDD to secure a behaviorist, I decide not to refute these declarations, these deviations from reality. Instead, I quietly construct my own litany of statements.
For six years, we have been crossing the thresholds of physicians from multiple disciplines. There have been myriad cancellations, hours of our lives spent waiting for a ten minute visit, often conducted without the merest eye contact, the smallest modicum of compassion. I have been told on numerous occasions that if I don’t like a behavior, that if neither a medication, nor a behavior plan has quelled the offensive action, that I need to learn to live with it. Brutal as it sounds, it’s honest. I can actually live with that response.
But my son, my child who works so diligently to control his outbursts, to conform to the paradigm of a “good boy” to please his mother, deserves a waiting room. This is your practice. You treat many children with autism. You are well aware of their need for regimen, their desire to be sequestered, no matter how briefly, from the world. I am paying for this service. It is the most basic component of a doctor’s visit to provide this sanctuary. It’s your job. I don’t care who owns this building. Fix it.
And all of you, with your medical degrees and your tendency toward God complexes, if you can’t ameliorate the unpleasantness of a particular situation, if it’s truly beyond your control, I have a suggestion for you. You learned it in kindergarten. It’s not difficult to do. Trust me, I utilize these words every single day.
Just say you’re sorry.
June 29, 2010
Gratitude Attitude
Through my Tuesday and Thursday posts I’d like to provide a more widespread forum for parents, family members, and practitioners of children with disabilities to provide practical tips for parents, as well as a place to share their views on raising a child with a disability. These contributions will be their ideas and stories, and not necessarily reflect the sentiments of those of autismmommytherapist.
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Gratitude Attitude
This week I’d like to thank my mom for all she does for her grandchildren, as well as extend a thank you to grandparents everywhere who are a fundamental part of their grandchildren’s lives. Thank you for all you do!
Tuesday Tips: “As a grandparent, what can you do to help?”
By Susan Preston
- Be a good listener and soundboard for the parents. Be cognizant of the enormous strain and impact that a diagnosis of autism places on a family.
- If you can, conduct research to assist during all the decision-making times. Become knowledgeable of the special education rules and regulations that govern special needs children. Parents often don’t have that time when they are coping with the everyday challenges of raising a special needs child. Attend IEP meetings to offer your emotional support to the parents. Remember, you are an important member of the “team” too.
- Offer babysitting time, even if it’s only for a few hours, so that Mom and Dad can have some autism free moments to nurture their own relationship. They surely need it! The benefits are twofold. As a grandparent you then develop your own relationship with your grandchild, as well as assisting the parents. An added benefit is that your grandchild has you all to themselves—no sharing of time required!
June 28, 2010
Mommy Time
Due to the fact that autismmommytherapist must keep both of her kids alive until summer school begins, she will only be posting Tuesday/Wednesday/Thursday the weeks of 6/28 and 7/5. Thank you for your patience!
June 25, 2010
Dance With Me
It was a simple request, “Come dance with me, mama.” To others it might seem complicated, as it was communicated without a sound, conveyed without the complexity of vowels and consonants, the intertwined cadence and pitch of speech. My eldest summoned me instead with his eyes and outstretched hand, which quickly encircled my own. You see, Brahm’s lilting lullaby had filled the room at the climax of Justin’s before bedtime video, and this is our song. When this piece is played I am commanded to perform. I don’t require a second invitation.
When my oldest son was small, compact enough to fit completely in the safety of my encircled arms, we used to dance to this together, twirling and swaying across the room of his “under the sea” nursery, his arms wrapped tightly around my neck, our cheeks flush against each other. At times it was the only way I could calm him, tame the tide of discontent that seemed to permanently emanate from my son, no matter what I did to assuage it. I was never certain if it was the notes, the deep pressure from our embrace, or the warmth of skin upon skin that would pacify him. Perhaps it was all three combined. At that moment, it didn’t really matter. At least for the duration of this song Justin would be content, and the maestro’s melodies, for a few glorious chords, could shut out the world. Sometimes, that was all we needed to get through the day.
Before, I was the one who compelled him to dance, who put the well-worn CD on our player, who interrupted his tantrums in the hopes that he would find solace in our mutual embrace. Now, he is the one who invites me to join him, to sway to the rhythms of Brahms, to engage with him. There is a variation on a theme, for now he is far too big for me to cuddle within my limbs. I kneel before him, clasp one hand and stretch it away from us, grasp his other hand and hold it close to my heart. With children, I feel our lives are defined by this combination of keeping near, yet constantly moving away. Knowing when to push him is perhaps what I struggle with most.
But for now there is no struggle, no tiny body to placate, to sooth. There is just the music, our eyes reveling in the comfort of this tradition, and small steps replete with joy.
At long last, we have this dance.
June 24, 2010
Guest Blogger Thursday
Through my Tuesday and Thursday posts I’d like to provide a more widespread forum for parents, family members, and practitioners of children with disabilities to provide practical tips for parents, as well as a place to share their views on raising a child with a disability. These contributions will be their ideas and stories, and not necessarily reflect the sentiments of those of autismmommytherapist.
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Today’s guest blogger is Jess from A Diary of a Mom. Jess shares with us a post that she originally published in May of 2009. The post is written as a letter to a dear friend whose child has recently been diagnosed with autism.
Jess has been overwhelmed by the response to the post over the last year. It has made its way around the world and back and has been passed from parent to parent and friend to friend. Whether you are new to this ‘club’ or a founding member, we hope that you will find some comfort in Jess’s words.
My dear friend,
I am so sorry for your pain.
Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.
I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.
I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.
I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.
I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.
I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.
You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.
When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.
When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.
That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.
You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.
You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.
You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.
You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.
You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.
You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.
You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.
You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.
A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.
You will question your faith. Or find it. Maybe both.
You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.
You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.
You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.
You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.
You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.
You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.
You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.
You will think you can’t handle it. You will be wrong.
This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.
You will be OK.
You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.
You will be OK.
And I will be here for you. Every step of the way.
With love,
Jess
Jess can be found at Diary of a Mom where she writes about life with her two beautiful daughters *Katie* and *Brooke* and her husband, *Luau*
June 23, 2010
Have a Field Day
My youngest rolled out the side entrance of his school, trundling along in his wagon, flanked on either side by the other members of his pre-school special education class. As a mom I am excited to see him, grateful to watch his smile overtake his face as he realizes that yes indeed, his mommy is there to watch him perform in Field Day. As a teacher I am wondering why he was chosen as one of two students whose exit from his classroom required a vehicle. Was he a particularly good boy that day? Did he perhaps ask nicely and was subsequently rewarded with the front-row seat? Is it just that his teacher is worried that getting him from the exit to the field without running ahead is such an odious proposition it’s just easier to place him in the red plastic receptacle?
I suspect strongly the decision was based on the latter scenario.
Either way, he is thrilled with both his escort and the upcoming event, and he can barely wait until his wagon slows to a stop before he leaps out and runs into my arms. I quickly embrace him, then direct him to return to his class and waiting teacher. He looks me in the eyes and says “Mommy, come”, and in that moment there truly is no other option. I take his hand and walk with him to sit amongst the other children and their assorted parents, and attempt to make him focus on what his teacher is saying, not the fact that his mother is parked next to him. It becomes a losing battle.
I have to admit I find the prospect of redirecting his attention humorous, for just that very morning when I had asked him if he’d like mommy to come to school for Field Day he had responded with a resounding “No, mommy stay home”, which was a tempting command given that our pool had recently been opened. I chose, however, to do the mature thing. Instead of donning my bathing suit I opted to enter my oven of a car in what seemed like mere minutes after he left for school, and nobly attended my son’s end of year event.
Oh, the sacrifices we make.
Of course, despite the allure of chlorinated water there’s nowhere else I’d rather be, particularly as Zachary seems to be enmeshed in a “mommy phase”, mired in what I’m certain will be a brief detour from his permanent residence in “daddyland”. My youngest and my husband have been inseparable from birth, perhaps because his father works from home and Zach has access to him sporadically throughout the day. Perhaps he senses Justin has previously staked out his territory on me, and is not inclined to enter into battle with him over their shared mother. Perhaps, of course, he just likes my husband better. I’ll never really know.
But today my smallest son only has eyes for me, and if I’m completely honest with myself, it’s fun to be the favorite. Throughout the morning I am ordered to assist him in hanging wet clothes on a washline (a chore I’m certain no one on this field has ever witnessed before). I willingly assist him in his ill-fated attempts to negotiate the field while inhabiting a burlap sack, stopping every few feet to place my giggling son upright, an act he continues to find hilarious all the way to the finish line. I encourage him to follow the directions of his well-trained aides as he traverses the grass in zig-zag fashion, heavy-handed with sodden sponges I am hoping he doesn’t release on his teachers. I have to remind him that running to me for a hug in the middle of the obstacle course is not good form, and convince him that my participation in the culminating tug-of-war event is not warranted. I win that battle, as long as I remain within sight of my boy. The negotiations afforded him a win as well.
All too quickly, the feats of strength are concluded. After the requisite photo shoot is completed I approach him, take his hand, tell him how proud I am of him, and remind him he’s going back to school for a bit, and I’m going home. This declaration is not met with a great deal of enthusiasm, and I watch my son avert his gaze from me, and hang his head dejectedly. We walk quietly with his class back to the main building, and when we reach the juncture where his path veers towards the school and mine toward the parking lot I hug him, give him a brief kiss, and tell him I’ll see him soon.
Zachary turns away, grabs his teacher’s hand, and throws his matching limb across his face as he bursts into wracking sobs. Intellectually I am aware that being separated from me for twenty-seven minutes is not indeed tragic, that his reaction is not commensurate with the situation. Emotionally I am the slightest bit gleeful, as I realize how far he’s come in his attachments, his ability to express emotions, even his capacity to demonstrate sadness at separation. A year ago, he wouldn’t have cared that I was leaving, much less that I had been there at all. I would find out later that his tears lasted as long as it took to get him seated for a treat at his favorite table. There is nothing a “grandma brownie” cannot cure after all.
As I head to my car with keys and camera, replete with photos capturing perhaps every moment of the morning, I am struck by this thought. For years I have been attending school events with Justin, strategically anticipating exactly how long I can participate before he decides he has had enough, and that leaving the facility with his mother is a far more reinforcing prospect than spending even one more minute in school. I have chosen on occasion to forego some parties because of his desire for a premature departure, and I have done so with a heavy heart. Sometimes, I just knew he’d get more out of the experience if I wasn’t there.
Today, however, was peaceful. I watched my son fully participate to the best of his ability in a half-dozen athletic exercises, he remained on the field, and listened to directions (more or less). Save for his brief foray into despair at the end of the morning he was nothing but pleasant, compliant, and enthusiastic. There was not one minute of anxiety on my end, no plotting how to circumvent an impending desire to vacate the premises, no angst. He behaved beautifully.
And his mother, for once, just had fun.
Next year, I just might join him in that burlap sack.
June 22, 2010
Gratitude Attitude
Through my Tuesday and Thursday posts I’d like to provide a more widespread forum for parents, family members, and practitioners of children with disabilities to provide practical tips for parents, as well as a place to share their views on raising a child with a disability. These contributions will be their ideas and stories, and not necessarily reflect the sentiments of those of autismmommytherapist.
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Gratitude Attitude
This week I’d like to thank all of the people who gave up their precious time to edit my manuscript, which in its most primitive version, was a labor of love indeed.
To Marcia Adirim, who slogged through that first attempt, gave me invaluable insight, and remained my friend. As I’m writing I often say to myself “WWMD”, and I am not referring to Madonna.
To Charlotte Taylor, for her wisdom, her friendship, and for always just “getting it”.
To Jeanne and Brian Carr, the former for asking me questions I would never have thought to answer in the text, and the latter for helping me edit the “whiney”.
To my husband Jeffrey, for reading every word and reliving the experiences, whether he wanted to or not.
And a special mention to a dear friend and wonderful writer, Kaitlin O’Riley. Kaitlin not only introduced me to punctuation, but was kind enough to pave the way to her literary agency as well (my success there still remains to be seen…). She writes excellent historical romance novels, all of which despite my penchant for straight fiction and sci-fi I have read and relished. If you have a moment, please check out her blog at: http://blog.kaitlinoriley.com
Tuesday Tips:
“What to tell a friend whose child has just been diagnosed with a disability”
Mary Craig
1) Research, research, research then advocate, advocate, advocate!!
2) Learn your child’s rights under Wright’s Law & the “No child left behind” mandates.
3) Remember every day that nobody knows your child like you do, expert or not!
4) Others (family members, friends, babysitters, etc.) need to know how to care for your child because the day will come that you’ll be exhausted and you’ll need a break. Let them help you because a happy, relaxed mommy is the best mommy to deal with all the fun autism stuff.
5) Try not to lose your husband/significant other in this whole process, because these kids were born out of love and they need us to do our best to try & keep the love alive for them, and for ourselves.
Mary’s Blog – Illuminate, Decorate & Fascinate
http://illuminatedecorateandfascinate.blogspot.com/
Babette Zschiegner
“What to tell a friend whose child has just been diagnosed with a disability”
1. She will need to try and remember not to “lose” herself. If there is something she enjoys doing just for herself she should try and keep at it… whether it is yoga, running, reading, listening to music.. whatever it is she should keep that time for herself. It is so easy to completely immerse yourself in the world of autism.. with all of the diets, therapies, research, and just playing chauffeur and advocating for your child that things you think aren’t as high on the priority list tend to get pushed to the side including your own health. When she can take care of herself then she will have more of the energy required to take care of all of her child’s needs.
2. Make time for her significant other… schedule dates and go on them. Try to remember to talk about other things besides her child’s autism. They did have other things in common before right? A strong partnership goes a long long way when it comes to raising a child with autism.
3. Most importantly she should know that things can improve. Things that are difficult for her child today, like birthday parties or sand on their feet, might become favorite pass times in the future. An autism diagnosis comes with many challenges but it is not without it’s share of special joys. You really take a greater appreciation in what many would consider to be the small things.. writing their name, first words, tying shoes… because they are extra difficult for many kids with autism… these successes become all the sweeter and can become causes for celebration! Enjoy each triumph no matter how small it seems!
Babette Zschiegner
Coach for Parents of Children with Autism
June 21, 2010
Love Letter
Dear Justin,
I trust this letter finds you happy and healthy. I hope by the time you receive this I will have been gone for many decades, that this last missive in your mother’s attempts to parent you from beyond the grave will be delivered to you when you are old, but still well. Forgive me, but really, why should death preclude me from continuing to control everything?
You may have been wondering all of these years why your brother periodically reads passages to you from me, although if I’m honest I know he’ll never be certain how much you really understand of what you hear, how much of the sentiment of what I write will pierce through your autism and nourish your soul. The idea to pen this series of letters came to me years ago when I read about a young mom, tragically afflicted with terminal cancer. She created videos for her toddler daughter to be spaced throughout her lifetime so that her child would know her just a little, and would at least bask in the certainty that her mother’s love did not end with her death. I wrote all of these letters instead of videotaping myself because I feared that seeing me would confuse you, perhaps incite you to ask for me post-mortem, the thought of which I emotionally cannot bear. I wrote the lion’s share of them before I grew truly ancient, because although most of your great-grandparents lived to be almost obscene ages, you never know when it will be your time. I didn’t want to be caught unprepared.
Planning was your mother’s forte.
It was my fondest desire prior to relinquishing my physical self to the mortal world that your last decades on this earth would be productive, safe, engaged. I am certain that your poor little brother, whom I have pestered innumerable times over the last twenty years to watch over you, will be your stalwart companion, your protector, your friend. You two have always been close in your own unique fashion, a fact I attribute far more to your inherent interest in one another’s well-being rather than any scenario your father and I were able to construct over your collective childhood.
For over forty years I have watched him teach you, defend you when necessary, and stand up to you when the situation called for it as well. We tried to promote a bond between you, to make Zachary see that the gifts that came into his life as a result of your autism far outweighed the burdens that inevitably resulted from it. He has assured me many times that in its own way autism enriched his experiences, imbued him with patience and a facility for compassion he would not have possessed otherwise. He has also shared with me that no matter what the disorder taught him in his life, he will always wish for you that autism hadn’t completely overwhelmed yours.
I understand how he feels.
When I was a relatively younger woman I once read an article about a study conducted in the extremely isolated regions of Sweden, one which contributed to scientists’ collective understanding of the study of epigenetics. After following many families of farmers during several successive generations of feast or famine, the scientists realized this one incontrovertible truth: that everything those farmers ate, smoked, drank, and accepted into their bodies became an integral part of their DNA, their gift to bestow upon future progeny. It turns out that even the choices we make for ourselves prior to our childrens’ births have irrevocable effects, leave lasting impressions on the arc of their lives.
It is my most profound hope that coupled with the choices I made that my love for you, which began long before your cells divided and multiplied in the floating sanctuary of your personal test tube, was passed down to you as well. I hope the strength of my commitment to you became mired in your DNA, a permanent fixture in your cells, a cocoon within which to wrap yourself since I’ve been gone. If there is any vestige of justice left in this world, the differences in your brain will not have permitted you to fully mourn me, to experience the anguish I would have felt at your loss had you gone before me. Instead, I hope you have only remembered the love we had for one another, that unbreakable connection that with luck has sustained you, enveloped you when you were sad, these decades past. I choose to believe that in some fashion I have remained with you, that our bond to each other has transcended death.
So, as I’m writing this last love letter to you I will have to summon some modicum of faith, permit myself to trust that your middle-aged years, your descent into the realm of the elderly, and your arrival there have been for the most part a journey encompassed by hard work, various social opportunities, and frequent visits from those who remain who love you still. I have requested that your brother leave these letters bound in a book for your caretakers to peruse, with each entry marking a new passage in your life, an acknowledgement that you yourself are moving closer to your own final moments. I hope the people who have cared for you, fed you, clothed and housed you, and at the very least enjoyed you to some degree, have read these on occasion. Photos tell a story, but nothing paints a picture more illuminating than words.
If my wish came true, and in their few idle moments they were able to reflect upon these letters that I have left for you as solace and succor in your remaining years, I hope those who live with you will understand this. That before them is an old man yes, one who can intimate an entire conversation with his eyes, but cannot emit one with his mouth. That this elderly gentleman is quite contrary at times, but can be reasoned with, does comprehend the subtleties of demand and request, and will comply in his own time. I hope they fathom your innate intelligence, push you always to accomplish more, solicit from you your best self in all domains. You are capable of so much. I hope that fact has been recognized, and honored.
Finally, my deepest desire in creating this legacy of your life is that your care-givers will be cognizant of how loving you are and were, how affection was always a staple of your personality. I hope my words will convey to them how demonstrating your love for those in your inner circle dominated your days. I wish them to see that once you were an adorable child, toddler, and infant who always eventually conquered his anger and his incompatibility with the typical world with a mighty hug. I hope that my anecdotes of your childhood, the extra time I had to build into our morning routine for your embraces, the way your arms would encircle me at night as I sang your baby song to you and you patted my shoulder in appreciation, will stay forefront in their minds even when you are difficult. I pray that they will see you as a whole being, an entity capable of the full range of human emotion. I hope they will have loved you, even a little.
I do not believe that we will see each other again. Unfortunately, although I’ve tried, my mind has not afforded me the comfort to fully embrace that belief. In the end I think my lack of faith in the afterlife was its own blessing, as it continually pushed me to make every moment we had together count, to elongate and enrich our connection as often as possible. Believing death to be a permanent sleep, which I am certain I will enjoy, made me a better mother.
I have long ago gone into my “good night”, and I wish you safe passage into yours. I will say to you what I whispered in your ear every evening I cared for you, whether you were infant, teen, or grown man. I leave you with this, my forever sweet son.
Sleep well, Justin. I love you with all of my heart, and all of my soul. As always, you are my good boy.
Rest.
June 18, 2010
Back in the Saddle
I fell off of a horse yesterday. Not a proverbial one, nor am I making an oblique reference to a wagon, for those of you so concerned about my frequent mentions of alcohol. No, I took a tumble from a completely stationary animal embedded firmly into the weathered wood at the Point Pleasant Beach carousel. You might be pondering why a forty-three-year-old woman was indeed engaging her equestrian predilections in the first place, and I respond that I was doing so because my youngest son asked me to race him on said carousel, and I am so grateful he can ask me anything at all that I generally try to accommodate his requests. I am certain he will develop into a lovely child.
The ride itself was wonderful, and of course, I let Zachary win. It was the dismount that did me in, my taking for granted that my flip-flops would afford me the same purchase of the stirrups that my sneakers usually did. When the ride began to slow to its inevitable end, as rides always do, I gracefully swung my leg over the saddle, and artlessly ended up on my ass. After I hiked my beach dress down over my neither-toned-nor-tanned-enough thighs and retrieved my errant ticket book from the concerned dad who’d had it flung at his face, I had time for three successive thoughts. Oh goody, I don’t think I broke a body part, either integral or extraneous; at least Zach was still strapped in on his horse, and most importantly, my fall didn’t interrupt his flirtations with the three-year-old girl next to him; and finally, I don’t give a damn if anyone saw my awkward tumble, but why did that dad have to be so cute?
This is not my first brush with death at our local boardwalk. Last season I faced my own mortality with Justin, walking backwards amongst the crowds trying desperately to eek out twelve more consecutive seconds of adult conversation after a chance encounter with one of my dearest friends. This profoundly idiotic choice resulted in a near concussive event as my skull eventually connected with the boardwalk’s prominently placed railroad crossing sign. After uttering two expletives in rapid succession (that’s a good day for me) my son proceeded to yank my t-shirt down to my waist so he could kiss me multiple times to “make it better”, and since I had one hand clamped on Justin’s wrist I had my own Sophie’s Choice to consider: cover the boobs, or continue to search for blood and assess my chances for intracranial bleeding. I chose the boobs. I’ve watched enough Grey’s Anatomy to know if it’s a subdural hematoma, I’m doomed anyway. Especially if it’s sweeps.
For the longest time my fear of impending mis-steps resulting from bad choices regarding the care, education, or medical approaches we utilized with our oldest son often left me in a paralyzed state. In the early days after Justin’s diagnosis I was often overwhelmed by the plethora of options the Internet held before me. Should his main therapeutic intervention be Applied Behavioral Analysis, or Floortime? Should I try the GF/CF diet, or not attempt to wean him off of the three food items he currently ingested without my using the football hold on him? Do we continue to vaccinate him, or hold off on further injections in fear that in the case of this child, the small but vocal minority is correct that immunizations trigger autism? Is it okay to secure that babysitter for our irascible toddler even if we’re not certain both parties will still be alive upon our return from Applebee’s?
Back then, and for years to come, choices (and sometimes, the lack thereof) ruled my days. I was so sure that if I picked badly for Justin, selected the wrong school for him, was unable to acquire the perfect autism consultant for our home program, or didn’t adhere to the equivalent of the Behavioral Ten Commandments EVERY SINGLE TIME that I would be damning my child to autistic hell. I put a great deal of pressure on myself to get it all right, to leave no stone, speck, or microscopic organism unturned. I attempted motherhood perfection. I was relentless.
Over time, maybe six months into our family’s permanent autism detour, I began to realize my yearning for perfection in the treatment of this child was affecting my marriage, my health, my ability to sleep for more than three consecutive hours at a time, and my relationship with my child. Eventually I figured out that my hopes of achieving a type of treatment nirvana were self-indulgent, a way for me to feel more control of a situation in which I did not, nor do not, have a great modicum of control. The best I could do for Justin was envelop him in hours of quality therapy, immerse him in consistency, and wrap it all up with a vast quantity of love. The best thing I could do for me was not obsess over every decision or choice I made for him. I came to realize that at every crossroads I should listen to my gut, choose, and move on. It took some time, but I finally understood that to be the best mom for Justin, I had to first tend to my tattered soul, and be gentle with myself and my decisions. This was the most important choice I could make both for him, and for myself.
I continue to struggle with what sometimes appears to me as the overwhelming finality of some of my options, but I’ve discovered at least with the second child I’ve made some progress. Perhaps it’s because he’s found his home on the much milder side of the vast autism spectrum, or perhaps it’s because with the return of his much longed-for language he is fully a participant (and quite a bossy one at that) in many of our decision-making ventures. A number of my friends would take care to point out to me that my calm demeanor reflects in large part his less-that-human status of second child, but I think they’re just suffering from first child envy. It’s true. We do get all the good stuff.
I will continue to work on reducing the angst of my choices with Justin, and anticipate I will be fully evolved with it by the time he’s fifty. Of course I’ll be dead by then, but I’m working on overseeing things from beyond the grave, and I figure I have about forty years to bring that dream to fruition. It’s good to have goals.
And for any parent out there new to autism in its many shapes and forms, please take a deep breath, and remember to let it out. Your child needs you whole, and no matter how involved they are with the disorder, they are still whole, still yours, too. In the days and months to come you will be stretched past any limits you once thought you had. Don’t forget to reign in once in a while, set your own limits as to what you can do, and care for yourself also.
Try, as much as you can, to be well.
June 17, 2010
Guest Blogger Thursday
Through my Tuesday and Thursday posts I’d like to provide a more widespread forum for parents of children with disabilities to provide more practical tips for other parents, and a place to share their views on raising a child with a disability as well. These contributions will be their ideas and stories, and not necessarily reflect the viewpoints of those of autismmommytherapist.
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Today’s guest blogger is Shivon, welcome!
Good Enough
“When I waited for Ryan at the end of the school day, I would study the Good Mothers. They were amazing and marvelous, right out of a magazine. They brought cupcakes when they were assigned to bring cupcakes. They remembered gifts for the teachers on Valentine’s Day and Christmas, always wrapped in color-coordinated paper and ribbon. They exercised regularly while the kids were at school. They left successful careers to devote themselves to motherhood. They were patient and kind. Around them I felt the way I did in press boxes early in my career: I was out of my league, unable to grasp how to be as good as they were. ~
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R and I had a “discussion” a few nights ago…well it was more like R talked and I listened.
While his approach wasn’t gentle, it was definitely an eye opener and very necessary. He says that I have become consumed with Diego’s autism and that my quest for perfection is going to send me right into a nervous breakdown. He told me that he is so concerned about me, that he thinks of it constantly.
He is right, I eat, sleep and breathe autism and have done so since we got a name for D’s issues. Logically I know that this isn’t good for me or my family, they need me at 100% and I can’t be at 100% if I am not doing anything for myself. I can’t tell you how many hours I spend researching various therapies while beating myself over the head for not being able to do more and I guess at the end of the day, that is my real problem, always feeling like I need to achieve perfection.
Not only with Diego but with all I do.
I am constantly plagued by thoughts of: the house is never clean enough, I don’t spend enough time with Lyric, I am not keeping myself up like I used to, not enough adult time with R, I’m not doing enough at work, not being a good friend….etc…you get the picture.
The problem with expecting perfection is that I let myself down often.
Why do I need to be perfect?!?!
I don’t expect perfection from anybody else!!
Who knows, but after talking to R it is all too apparent that my quest for perfection has to end. Being hypercritical of myself is leading to other issues with our relationship and that isn’t good. Somehow I have to be alright with the fact that I can’t achieve perfection.
This is way easier than it sounds, but I know it is crucial to my happiness.
So how does one become ok with being “good enough”??
Hell I don’t know, so I discussed it with Juan. Juan is the therapist that consults with me about parenting Diego. I went to see him last Saturday and the second he asked me if I was ok, the tears started flowing. I apologized and told him I had a very hard week and he simply said “don’t be sorry”. Then all of a sudden it all came out, everything I have been thinking and feeling since D was diagnosed with an ASD. I don’t think I have ever been so forthcoming with anybody about it prior to this. Juan is a very stoic man, who quotes psychological literature often and rarely says anything out of emotion, and I like him this way, seeing as how I have enough emotion for at least three people. Two people like this trying to problem solve would just be silly.
Anyway, Juan began to tell me about Dr. Daniel Winnicott’s school of thought on the “good enough mother.” You can read more at the link, but basically I am not doing my children any favors by doing everything for them. Being “good enough” means giving them the tools to deal with obstacles in life as they arise. This is in stark contrast to what I do now. If I don’t stop what I am doing, I may end up resenting my beautiful monsters and turning them into narcissists.
So with this concept of “good enough” starts a new journey, not only with parenting, but in life. Juan and I sat down and came up with some concrete ideas about how to feel alright about being “good enough”.
I can’ t control everything, so therefore I should do all I can in any given situation and then ride it out. If the result isn’t what I want, then it is back to the drawing board. I am excited about this and really think it will make me so much happier in the long run.
Happy Mommy=Happy Family
What is good enough to you??
Shivon
