Tag Archives: ASD

FAIL

FAIL
I’m bummed.  Actually, I’m way more than bummed.  I’m greatly disappointed in myself.  I let my frustrations get the best of me this morning.  I’m 99% sure Jackson forgot the turn of events as soon as he walked through the school doors.  But my reaction to things left a bitter taste in my mouth.  I pulled into school with tears brimming.

My vexation almost always results from what I believe should, at this juncture, be routine.  I get flustered with things that Jackson and I (and his OT) have been working on for what seems like eternity.  To me, dressing (and undressing) should be almost second nature by now.  He’s five, for Pete’s sake.  Truth of the matter is, the act of getting dressed or undressed is simply not natural for Jackson.   When it comes to undressing, shoes are semi-doable, providing they’re Velcro and loose fitting.  He’s good with taking his socks off.  Pants?  If they have a fastener it’s a no-go.  Pull over shirts and tees?  Pretty good, but for the life of me I don’t understand how they become stuck on his head, which results in his spinning around in circles.  Getting dressed?  That’s very often, but not completely, a bust.  (Thank goodness we live in Florida where pull-on shorts, tees and bare feet are the norm.)  This morning’s debacle went something like this.  The jacket went on, yet again, without a shirt.  And the pants went on backward, replete with the zipper in back.  Really?  The zipper wasn’t a dead giveaway?  Doesn’t any of this seem strange or uncomfortable, Jackson?

All this happened after spending the first 40 minutes of my morning making futile attempts to literally physically extricate myself from the grasp of a whiny and whimpering munchkin.  He was bent on me not getting up this morning.  He was adamant I needed to come back to bed with him.  Unfortunately I needed to get to work today.  The end of the month is fast approaching and I have a lot to do between now and the 31st.  Plus, a shower was needed, as I hadn’t had one in a few days.  I know, TMI…

I lost it.  Not literally, but my jaw was set and my teeth were clenched as I set about undressing Jackson and getting him dressed and out the door.  He had to sense I was frustrated.  My touch wasn’t gentle.  It was hurried and silent.  I prayed aloud for the Holy Spirit’s calm to wash over me.  We made our way out the door and into the car and rode in silence for the nearly 25-minute commute to school.  Now here I sit.  My spirit is broken and I can’t think of anything I want to do more than race to school and scoop Jackson up and hug him.

I’m so grateful tomorrow will be a new day and I’ll get a do over.  And blessedly God’s grace and tender mercies will be new too.  Thank you, Lord, for not giving up on me.  I’m so unworthy, yet Your love is faithful day in and day out.   Thank you.  Thank you.  Thank you.

 Lamentations 3:22-24

22 Because of the Lord’s great love we are not consumed,
for his compassions never fail.
23 They are new every morning;
great is your faithfulness.
24 I say to myself, “The Lord is my portion;
therefore I will wait for him.”

 


Sacrifice

This post isn’t about me, per se.  It’s a message for someone.  I don’t know who the person is (or people are), but I believe God has pressed it upon my heart to put the following encouragement out there, not necessarily as someone who has been-there-done-that, but as someone who daily IS there DOING it.  I’m talking about parenting a child with special needs—great or small, whatever those needs may be.  Whoever you are, God wants you to know you are not alone.  Not only am I in the trenches with you, but there are countless others out there who get it—and get you.  Of course everyone’s situation is unique, however, those of us battling it out in the parenting trenches know your internal, physical and spiritual struggles.

If my admittedly failing memory serves me correct, parenting a child with special needs is not something I neither signed up nor signed on for when I inked my parenting contract with God.  But then again, few people do.  (There is a very special place in heaven for those whose hearts God has set to seek out and parent children who have special needs.  Bless you.)  As the parent of a child with developmental challenges, pipedreams are no longer in my wheelhouse.  That’s not conjecture; it’s fact.  I’m not seeking sympathy, I’m simply telling you my reality.   I can’t see past today.  My son consumes me from the moment his eyes flutter open at the crack of dawn until he finally drifts off to sleep at night.  His days are fueled by a great deal of anxiety and nearly every second of my day is spent caring for or interacting with him in one way or another.  And the few hours I’m afforded during the school day are spent at my office doing full-time work on a very part-time schedule.

One of the many things I’ve learned firsthand over the years is this:  you cannot effectively parent a child without sacrificing yourself.  Every family’s situation is unique, however, parenting a child with developmental and/or physical challenges greatly magnifies the sacrifice required of parents and caregivers.

I’m less than happy and more than a little embarrassed to admit that oftentimes I look at friends and acquaintances (and even my husband/business partner) through green eyes of envy.  I had—and continue to have—so many dreams and aspirations I fear will never come to fruition.  But I’m learning to have peace with this possibility.  At times it’s been a tough pill to swallow, but our mighty Comforter is balm to my wounded ego.  When I get a case of the feel sorries, He reminds of this:  Jesus’ birth, life and death were foretold; His sole purpose was to be mankind’s Savior—our Redeemer.  He came to earth to be The Sacrificial Lamb.  Period. He didn’t juggle many roles in His short time on this earth.  Nor did he try to find a way to mitigate His purpose.  He had a singular objective.   Jesus never questioned that.  Never.  Ever.

Now, I am absolutely, positively NOT comparing my sacrifice or anyone else’s for that matter, to the ultimate price Jesus paid for you and me.  However, I firmly believe as mothers in general our lives must, to some degree or another, be a living sacrifice for our child(ren).  My experience tells me this is especially true for adoptive parents and parents of children with special needs.   Both bring so much to the parenting table.  We simply cannot have it all.   There are many folks who believe differently.  There’s a host of people out there who either try to convince us we can have/do it all or guilt us into believing we fall short if we don’t aspire to be supermom.  But as the mother of both a soon-to-be 32 year old and a five year old on the autism spectrum, I can tell you it’s an unreasonable goal and trying to do so can be a real spirit breaker.  In this instance I have most definitely been-there-done-that.

So, my dear friend—whoever you are, the only counsel I can offer is take it easy on yourself.  Please, please, please give yourself a break, and while you’re at it, a pat on the back.  You deserve it.  I guarantee it.

Next!

Well, we’re just about three months into the school year and munchkin was transferred to a new class this week–a move his ESE team and I decided upon last week. For a rigid child who doesn’t handle change well, it’s been a tough week.  I can’t tell you how many times he’s asked me, “When do I get to go back to Miss A’s class?”  I think I’ve had almost as tough a time with this as Jackson has.  There’s comfort in the known for all of us.

Jackson’s new class is vastly different than his previous class.  Miss A’s class had grown to a mix of twenty-plus girls and boys, typical children and children with mild developmental delays.  His new class has eight children, all boys, all of whom are on the autism spectrum with developmental delays of varying degrees.  It’s a lot to get used to for me as a parent, so I’m certain it’s a lot for Jackson to get used to as well.

True to form, I can’t pull any information out of Jackson with respect to what they’re working on or what they’ve been doing in class.  I do believe the emphasis has been taken off academics and now focuses on the social skills required to interact in a classroom setting.  While this social component is much needed and certainly something Jackson obviously lacks, it enforces the reality that munchkin is non-typical—something I’m occasionally still coming to terms with two years post diagnosis.  I’d be lying if I said I wasn’t sad that Jackson isn’t with the children he’s become accustomed to over the past three months.  I’m sad that he misses the class gerbils, Peach and Penelope.  I’m sad that his former classmates are busy making paper turkeys and various Thanksgiving-related crafts and eagerly planning a Thanksgiving feast, while Jackson doesn’t even know a major holiday is around the corner.  I miss the loving and compassionate Miss A whom I’ve grown to trust and have enormous admiration for.  And most of all I miss those adorably catchy songs he came home singing for hours on end.  Oh well, onward and upward, right?

It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change. ~ Charles Darwin

Halloween

Halloween has come and gone.  Thankfully.  I’ve never been a big fan.  Even as a child it was a pretty disappointing holiday.  I grew up in a really rural area in Western Pennsylvania.  We literally lived in the middle of nowhere.  Our neighbors were half a mile or more away, depending on the direction you traveled. Add to this disappointment the fact that it was always bone chilling cold and Halloween was pretty much a bust.

Halloween was more celebratory when my daughter was a child.  We lived in a neighborhood with families and children, so she always had a great time.  Fast-forward twenty-five years to Halloween 2009 and I would have told you I expected more of the same with munchkin given our neighborhood.  Notice I said, “I would have told you,” not “I can tell you.”  That’s because it didn’t work out that way.  From Jackson’s very first Halloween he has fought any and every part of this cursed holiday.

Jackson has never accepted any type of costume—no matter how unobtrusive.  From checkered shirts and jeans (cowboy) to tank tops, shorts and sneakers (basketball player), Jackson has hated costumes.  Every bit of it is overload for him.  Too much chaos.  Too many people.  Too much noise.  Too many folks in his face grilling him as to why he isn’t participating in this silly, nonsensical event.  And let’s not forget he’s an extremely literal child.  The boy honestly thinks a person is permanently transformed when they put on any type of mask, makeup, prosthetic or outfit.

Until this year, the costume parades at school have yielded no better results.  The year before last the poor child was traumatized and clung to me while screaming at the top of his lungs.  Everything about Halloween is simply too much for him and by virtue of this, it’s too much for me too.

This year I came up with the idea of Jackson being Curious George and I would be The Man with the Yellow Hat.  Jackson thought this would be a great idea.  (He said it would be easy because he’s already brown.)  Of course he had very specific parameters for what would constitute his costume—short sleeves and shorts (w/no zippers or buttons).  That’s it.  That’s what was allowed.  It worked out perfectly.  I happened to have a brown knit tee and shorts that had been passed on to us from friends and added some construction paper monkey ears to one of my headbands.  Voila!  Curious George.  I was equally as lucky in pulling together my The Man with the Yellow Hat Costume.  We were a hit for the Characters in Literature Parade at Jackson’s school.  (Sounds so much better than Halloween Parade, don’t you think?)

Jackson had no desire to don his costume a second time to participate in the trick-or-treat aspect of Halloween.  Which is more than fine by me.  The child has never had a single, solitary piece of candy.  His choice.  So sitting out the door-to-door process is of absolutely no consequence to him whatsoever.

People appear to be utterly shocked when they ask how Jackson liked trick-or-treating.  And I feel like the Grinch Who Stole Christmas when I tell people I don’t like Halloween.  How about you?  Is there anyone else out there whose kiddos don’t enjoy “All Hallows Even?”  Image

Shades of Gray

A stranger recently sent me an e-mail expressing her irritation with what she perceives as the media’s reporting of stories pertaining to only higher functioning children [with autism].  She has a teenage son with autism, and voiced frustration with, for example, having to leave stores because of his meltdowns and the related difficulty she has in explaining the situation to people.  Judging by the tone of her email, I truly think she erroneously believes our family’s days are rather peaceful and calm, relatively speaking.  I sensed resentment in her composition.  Want to know what I told her?  I get it.  That was my heartfelt reply.  I get it.  I know what you are saying, my friend.  I understand and my heart goes out to you—not with sympathy, but with understanding.  It was important to me that this woman—a complete stranger, knew she was heard and isn’t alone.

Having a child on the spectrum can be so darn isolating, irrespective of where he or she falls on the spectrum.  Public outings can indeed be tricky.  That’s certainly the case for our family.  It’s rare that we’re able to go somewhere that our son doesn’t act out to some degree, lesser or greater; it all depends on what’s going on.  By all accounts, he is considered to be high functioning.  What does that really mean though?  Our son is bright and by all appearances, has a very large vocabulary.  At first blush, these are things that most likely allow him to be considered “higher functioning.”  As his mother and the person who spends the greatest amount of time with him, I can tell you his vocabulary isn’t organic.  Much of what munchkin says is echolalia—the automatic repetition of vocalizations made by another person.  Jackson is simply verbally regurgitating things he has heard somewhere (usually Thomas & Friends or Curious George).  Oftentimes these things come out at very inappropriate times.  He has no governor on what he says or when/how often he says/repeats things.  His speech is rapid fire.

Admittedly, we don’t have a lot of public meltdowns.  But believe me when I tell you, Jackson exhibits his share of behaviors that constantly illicit stares, reactions and comments—none of which are favorable or desired.  Jackson often has difficulty modulating his behavior in public/crowded spaces and therefore, displays various self-stimulatory behaviors such as spinning, loudly vocalizing sounds and humming, and putting his mouth on things (i.e. shopping carts, windows, display cases and floors).   He frequently lies on the floor and spends an inordinate amount of time standing with his index fingers pressed firmly behind his earlobes because he is on sensory overload.  He also has auditory and visual processing disorders.   It’s extremely difficult for Jackson to remain focused for more than a few seconds (unless watching a favorite video), and equally difficult to grasp what he’s being told to do or not do.  We’ve been kicked out of and turned down by numerous preschool programs.  We’ve been escorted from stores and literally booted out of recreational playgroups and classes.  The comments are utterly ridiculous.  And in complete transparency, someone made a very false report to Florida’s Department of Children and Families (“DCF”) after seeing Jackson and me leaving story time at our local public library.  (Which we were forced to leave because of Jackson’s (above-mentioned) behavior(s).)  I still don’t understand that one…

All this to say, we—you and I, your family and mine, your son or daughter, and our Jackson—are walking the same walk.  In my humble opinion, autism is not black or white, only various shades of gray.  And appearances are always deceiving.  I have no answers, but humbly ask if we can support each other along the way.  I may not know you personally, but if you’re like me, you need all the love and support you can get.  I’m lifting you and your family up in prayer.  I’ve no answers.  I’ve no solutions. I’ve no excuses.  I simply want you to know I’m on your side—and I hope you’re on mine.  Lord knows, I need all the support I can get.

Blessings and peace to you.

Accept the things to which fate binds you, and love the people with whom fate brings you together, but do so with all your heart. ~ Marcus Aelius Aurelius

Who Rescues Who?

Image

“Dogs are not our whole life, but they make our life whole.” ~ Roger Caras

This photo is an accurate portrayal of the love our son has for our dog, Geoffrey—a rescue from Ruff World Animal Adoptions in Central Florida.  He is the fourth canine family member (and third rescue) we’ve been blessed to share life with in the past twelve years.

Our dogs—the last two (Felix and now Geoffrey) in particular—have been vital to our family. They have proven to be effective touchstones for our son—having a somewhat grounding influence on him.  For me they have proven to be great stress reducers.  My favorite part of the day is lying in bed at night waiting for munchkin to fall asleep.  Geoffrey snoozes with his front and back legs draped over me while his head rests in my lap.  The room is dark except for the soft glow of a nightlight.  As I stroke the side of his face and run his velvety ear repeatedly through my fingers I can literally feel the stress of the day wash away.  (Studies have shown that petting a dog can lower your heart rate.)  Truth be told, if it weren’t for my husband waiting for me to spend some time with him, I could conceivably stay there all night for the inner peace I’m afforded in that sacred space.

If you are contemplating bringing a canine family member into your home I urge you to please consider adopting from a rescue or shelter.  There are so many wonderful, loving dogs in desperate need of a loving forever home.

An estimated 2.7 million healthy shelter pets are not adopted each year, and only about 30 percent of pets in homes come from shelters and rescues.

U.S. shelter and adoption estimates

  • 83.3 million—Number of owned dogs
  • 20 percent—Percentage of owned dogs who were adopted from animal shelters
  • 3,500—Number of animal shelters
  • 6 to 8 million—Number of cats and dogs entering shelters each year
  • 25 percent—Percentage of purebred dogs in shelters
  • 3 to 4 million—Number cats and dogs adopted from shelters each year
  • 2.7 million—Number of adoptable cats and dogs euthanized in shelters each year

                                                                                     ~ 2013-2014 statistics according to the Humane Society of the US