Tag Archives: children

Happy Birthday

Britt

Today, we celebrate the birth of an utterly amazing woman who took the world by storm 32 years ago this very day.  Happy birthday to our beautiful daughter, Brittany.

Britt, seeing the person you’ve evolved into over the past three decades is what allows me to parent your very precocious brother today.  Through you, I am blessed to see the beauty that lies on the other side of the parenting mountain.

You are fierce!  You are strong!  You are brilliant!  You are light!  You are laughter!  You are love!  And you are loved.

Today, we celebrate you, my beautiful daughter.  The world is a much better place because of you.

The relationship between parents and children, but especially between mothers and daughters, is tremendously powerful, scarcely to be comprehended in any rational way.         ~ Joyce Carol Oates

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.

Birthday Gifts

Munchkin recently turned five.  We celebrated his big day with a party at our local bowling alley.  We invited a few of our friends and their children.  We had a wonderful turnout of about twelve children and nearly 20 adults.  Everyone had a fantastic time.

When sending out the invitations I included the following note:

We are celebrating Jackson’s very special 5th birthday in a very special way.  In lieu of a gift for Jackson please bring a new, unwrapped gift for Toys for Tots.  (We will have a designated collection bin to keep the toys out of the birthday boy’s sight.)

 Note:  According to Toys for Tots, hard to fill age groups are boys and girls ages 0-2 and 11 and up.

We are so excited to share Jackson’s special day with some very special children.  Thank you for being part of it.

With a late November birthday and Christmas one month later, it doesn’t make sense to us, for folks to lavish gifts on Jackson simply for the sake of gift giving.  [Please know, I’m not holding this out there for everyone to do.  I’m simply telling you what worked for our family—thus far.]  We had a fabulous response.  It was far better than we could’ve ever hoped for or dreamed of.  Everyone brought a toy.  Heck, many people brought multiple toys.  The bags I brought to collect them were overflowing.  Immediately following the party we took the bags of toys to our town’s community center and deposited them in the Toys for Tots bins.  Munchkin was thrilled to do it, and led the charge.  Through the generosity of our friends we were able to bless easily more than a dozen children on Jackson’s special day.

Heading in to the Town of Jupiter Community Center

Heading in to the Town of Jupiter Community Center

Now here’s the funny part of the story—the rub, if you will.  A friend of our family who attended the party mentioned it to a friend of hers.  Her friend is the parent of a six-year-old boy.  Our friend’s friend thought our toy drive was cruel to our son.  That’s the word she used.  “Cruel.”  Now, last I looked, toy drives weren’t listed under the definition of “cruel” in the dictionary.  As a matter of fact, the definition is:  inflicting pain or suffering without pity.  That said, how far from the meaning of that word could a toy drive fall?

What have we come to as a society, when a fellow parent labels you as cruel for soliciting and giving gifts to another child?  If that’s your definition of cruel then I say bring it on.  As a matter of fact, your definition of cruel is a label I’ll happily accept on behalf of my family and one we’ll proudly sport.

As for the rich in this present age, charge them not to be haughty, nor to set their hopes on the uncertainty of riches, but on God, who richly provides us with everything to enjoy. They are to do good, to be rich in good works, to be generous and ready to share, thus storing up treasure for themselves as a good foundation for the future, so that they may take hold of that which is truly life. ~1 Timothy 6:17-19

 

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

Shine Your Light

I have a confession to make.  I’m insecure.  I have been my entire life. To compensate for my lack of self-confidence I’ve historically been a rather gregarious gal.  Hiding behind this public persona, however, is a person deathly afraid of rejection.  I talk a good game, but truth be told I hide my life and my “light” from the world.

In previous posts, I’ve shared links to both a recent local television news segment [http://bit.ly/15QPPR2] and half hour news show [http://bit.ly/153Jhiu] I participated in, both of which speak on the subject of autism (early diagnosis and education, respectively).  Terrified of public speaking, I told myself that it would be completely worth it if our family’s story helped one person.  Let me tell you—I was elated to receive an e-mail from a woman who saw the news show on autism and education and was looking for information.  The discomfort I experienced by appearing on that show was well worth it based on this single e-mail from the grandmother of a young boy with autism.  She was seeking information on schools, programs and medical providers.  I was beyond thrilled to share information I’ve gleaned and compiled over the past two years.  Additionally, another woman contacted me via a mutual friend of ours.  She has a daughter with autism and is relocating to Palm Beach County.  She too was seeking information on education and healthcare/therapy providers.

Had I not stepped out of my comfort zone I wouldn’t have been able to help these women. The bottom line is this:  Folks took notice.  Awareness was raised.  People—just like me—are looking for help and searching for answers. Don’t isolate yourself.  People aren’t out to judge you. (Well, at least not the majority of them.)  Parents are simply looking for help.  They’re looking for a connection.  They’re looking for acceptance.  Their eyes are upon you and me. Illuminate your journey and you’ll light their path.  That’s part and parcel of our experience.

 “You are the light of the world. A city set on a hill cannot be hidden. Nor do people light a lamp and put it under a basket, but on a stand, and it gives light to all in the house. In the same way, let your light shine before others, so that they may see your good works and give glory to your Father who is in heaven.” ~Matthew 5:14-16

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My husband and I are partners in a branding firm.  When we were planning for our adoption our game plan, once our munchkin was home and settled, was to bring him to the office with us.  We were excited for Jackson to be a part of our little company.  One of the many reasons we wanted to—and were excited to—do this was so he could see us in action in the office, which would hopefully give him an appreciation for hard work.  My husband and I have always referred to ourselves as “Team D—D squared,” but looking forward, we’d be “Team D—D cubed!”

My husband returned to work within days of our return home from Ethiopia.  Several weeks later, once we were settled with a routine established, I attempted to take Jackson to the office.  I brought a bag filled with bottles, diapers and toys and set up a portable crib.  I closed my door and played soothing music.  For naptime I downloaded white noise on my iPhone, closed the blinds and dimmed the lights. I tried everything, but it was impossible to keep Jackson content or quiet.  It was abundantly clear.  Our plan to bring Jackson to work so I could return to our physical office in any capacity was simply not going to happen.  Jackson’s high energy/high octane presence was far too disruptive in the office setting.  To say it was counterproductive would be a disingenuous understatement.

I began to work from home and started to set deadlines for a return to the office.  I started with a goal of six months.  Six months became one year.  One year became eighteen months.  You get the gist.  I tried to bring Jackson into the fold, not only at these milestones but also in between, to no avail.  I honestly don’t remember when I simply gave up on the goals, but I did.  I chucked the idea of ever returning to work with Jackson as my/our sidekick.

Let’s fast-forward four years and five months.  (But hey, who’s counting?)  Last month Jackson began VPK.  He is in school six hours per day, Monday through Friday.  I finally returned to the office and can’t express in words how good it feels.  I never in a million years thought I’d be so happy to park my butt at a desk.  It’s not the work per se that has me excited.  I’ve been getting by while working from home.  (To be honest, that statement probably errs on the side of gracious.)  It’s the idea of being a part of something again.  I’m part of a team, as opposed to slaying dragons by myself all the livelong day.  And this absence from Jackson affords me a deep breath of sweet, fresh air that I definitely and desperately need.  It allows me to savor my time with him so much more than when we’re glued together 24/7.  And as an added bonus, I actually wash my face, brush my teeth and take a shower.  And this is daily, folks!  And for an added double-bonus, I get to wear decent clothes!  These are all things I took for granted pre-munchkin.  I have a new understanding of and appreciation for the idiom “absence makes the heart grow fonder.”  It’s a given I’ve always been fond of this little munchkin of ours, but seeing him light up when the teacher walks him out to carline absolutely sets my heart afire.

 “Once you become the mommy or daddy in your child’s world, it is the only world in which you exist, no matter how much you fancy there is a separate world of your own.”  ~Robert Brault