A Sunshine Kind of Life: Moments That Matter

The Lives and Loves of Families With Special Needs

I Want A New Drug

I Want a New Drug

Guest Blogger: Lee

Remember the Huey Lewis song from the 80’s? Well, now that I have you singing it in your head or you are back from googling it because you are too young to remember, let me profess I am with Huey on this one.

My drug of choice happens to have a name. It is not very well used, and certainly not prescribed by many doctors. In fact the only place I seem to find it is in community with other parents who have kids with special needs. It is called, “validation”. I am addicted.

I would spend large amounts of money, plenty of time and energy, almost anything for my next hit. It gets me though the day, and helps me sleep at night. I only wish I could find a way to put it in my coffee.

You see, so often with my kids, when I dare to answer honestly about how I am, how my day is or anything of that sort, I get answers like, “Keep your chin up!”, or “God won’t give you more than you can handle!”, or “Kick that bad attitude to the curb.”, and don’t forget to insert the patronizing smile! These reactions not only sting, but keep me from sharing about my life. My life is complicated, and often downright hard. I have two boys with Down syndrome. Alex is the “easy” one of the two, but somehow, my easy kid is the biggest handful of 30 kids on his Special Olympics swim team. Then there is Ben. Not only does he have Down syndrome, but is hearing impaired, has Hirschsrung’s Disease, severe gastric reflux, AND leukemia. The leukemia weakens his immune system so that even minor ailments can take hold and take over. I also have a 13 year old daughter, and a 21 year old niece who I raised from the age of 13.

My hands are full, and honestly I love it and wouldn’t have it any other way. Yet, I often feel so misunderstood and frustrated. That is why, when someone comes along who listens, really listens, is slow to answer, and gentle with words, I feel high as a kite when I speak to them. I don’t need to be told I am a saint, don’t need to be admired or patted on the back. I do this because it is what I am made to do. I just need that hit of validation to get me though sometimes.

And if you do happen to have a pat response, I hope you have good reflexes, you may need to duck, like fast.

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Good Things To Know!

Good Things To Know About Parents Of Kids With Special Needs!

 

1. Some of us have given up on social skills and don’t care what we say or do.

2. We’re not afraid to have a serious “meltdown” of our own.

3. We are tired and all the patience we have is for our kids. …

 4. We have a far shorter fuse for nonsense as a result of our responsibilities but A FAR thicker skin.

 5. We can get you in a hold/lockdown position in less than 3.5 secs.

 6.We can shoot you a look that would make a linebacker tremble in his boots.

 7.Chances are it’s been awhile since we’ve had a full night of sleep and that will give us a reason to plead insanity.

 8. Our tolerance and patience is for our kids who didn’t choose to have special needs, not for someone who CHOOSES to behave inappropriately and is ABLE to control their actions.

 9. We’re probably already on edge and it would be stupid to push us over.

10. We are sleep deprived and already defensive, and we spend all of our patience on our children, doctors, therapists, social workers and teachers, why would we waste an ounce of it on a total stranger?

11. We’ve had to fight from the moment of our child’s birth so by the time you piss us off we’re seasoned battlers and could win a war.

12.We devote our lives to our children and don’t need more stress and people who don’t understand our life.

13. Wherever there is a cub, there is a mama bear…We’re always watching

Guest Blogger:  Lee

Lee is a lionhearted mama of three– 1 beautiful daughter, and 2 handsome sons who have Down’s Syndrome.

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Maxine

*alias used to protect the privacy of the child.

Maxine is about to turn five years old. She is so nearly five that she calls herself that. She has straight, shoulder-length brown hair, which she is loathe to have brushed, and the bluest eyes you have ever seen. Maxine has 20 perfect, tiny, white teeth. She’s proud of those teeth, and she should be—she cut 14 of them in a single night!

Maxine is just putting letter sounds together and learning to read. She writes my name like this: “MAMAMAMAMAMAMAMA”, because sometimes she gets carried away. “Mama” is easier to write than “Daddy”, because it has the same letters as her name, so she didn’t have to learn new ones.

She can count to 20, but she always leaves out 16 and 17. I don’t know why, because she can recognize them when we write the numbers out and she’s paying attention.

Maxine has a lot of hobbies—she likes many things. She dislikes equally as many, but with much more ferocity. Her favorite activity is drawing, and she is very gifted. She has been drawing recognizable pictures since she was 2 years old, and she never had to be taught how to hold a pencil—she’s just always known. She also loves pirates, and has a special affinity for tools and plumbing. When asked what present she would like for her upcoming birthday, she responded very enthusiastically with the words “A new plunger!” I frequently find her crouched down under the sinks or behind the toilets, “working” with her red plastic tool set. Once we changed the bolts out on the garbage disposal—that was an exciting day!

Another of her favorite activities is clogging up my vacuum cleaner with an odd assortment of sticky goodies, simply to have the pleasure of disassembling it during the unclogging process. She is equally fond of clogging up both nostrils with the aforementioned sticky goodies. Raisins, play-doh and wet macaroni noodles are all the perfect materials for nose-and-vacuum clogging.

Maxine lives in mortal dread of our smoke alarm going off. She is equally displeased by large, barking dogs, and by the board game “Operation”. Certain bugs are fascinating, while others cause unfathomable levels of distress.

Every child she meets is her “new bestest friend ever”, including those who are unkind to her. Her favorite sort of child is one who enjoys running in circles—her most over-developed leisurely pursuit!

If Maxine were a color, she would be a warm, bright, sunshiney yellow. When she is happy, she is the happiest she has ever been–literally out of her mind, over the moon, giddy with happiness! Her laughter—which often bubbles up at inappropriate times, like, say, mid-church service—is infectious. In fact, that has become her best social coping mechanism with other kids her age—if she doesn’t understand what they want, or what they’re saying, she just laughs. In almost every incidence, the other kid joins in.

Not everything is so joyful for Maxine. Simple pleasures in life that most people take for granted are a struggle for her. She doesn’t yet understand even the most basic games and rules that school aged children rarely have to think twice about. Maxine loves to run– but she doesnt understand the rules of “tag”. She can’t comprehend why standing on “home base” renders one immune from tagging. Equally puzzling is the concept that only one child at a time can be “It”. Kindergarteners who don’t understand Tag have a hard time fitting in with neighborhood kids who mastered the game while still in diapers. Laughing can only take you so far in the social realm of the playground.

Maxine has been diagnosed with Pervasive Developmental Disorder, an Autism Spectrum Disorder. Her brain processes information very differently than typically developing children, and it always will. Sometimes, the way her brain works is beautiful and inspriational and humbling for me as a mother. She can tell you the intricate differences in about 15 million species of whale– her attention to detail is such an astounding gift!

And sometimes, when I’m out in the front yard trying patiently to teach a confused, shrieking child how to play tag by the rules, the way her brain works is terrible and tragic and unfair.

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