Posts Tagged ‘special needs mothers’

Do You Say I Love You Enough To Your Children?

“May Is For Mothers” is minutes from being over and I want to make sure I get one last post in.

I had 2 precious hours alone on Mother’s Day this year,which is no small feat. When I mentioned this to a friend her response was, “Oh, I’d feel bad if I left my kids on a day I was supposed to be celebrating motherhood.” Hmm. Who said Mother’s Day was supposed to be about guilt – don’t we have enough of that day-to-day? With two toddlers and a special needs child time alone is something incredibly rare (seriously, think a couple of hours every few months), and being pregnant, alone time is only going to become more scarce. I like to think of my hours away as “time to recharge so I can be a happy mom again,” rather than “escaping my kids on Mother’s Day.”

Then this past week a mom confessed to me that she didn’t feel she said “I love you” enough to her kids because she was often too stressed out dealing with the “everyday crap” to think about “being nice.” I thought about that long after we parted ways, and if I had been a little quicker on my feet I would’ve said this to her:

As the mother of a special needs child who says “I love you” no less than 50 times per day (no exaggeration) I sometimes feel guilty for not saying it back every time, or worse yet telling him “okay, that’s enough, let’s talk about something different.”  And there are definitely days where the only time I say “I love you” to my other kids is when I’m tucking them in at bedtime. I know there are people who say I love you every time they hang up the phone or leave a room but I was not brought up in one of those families. That’s not to say I didn’t feel loved or know my parents loved me. But love is demonstrated in many ways, and often the exhibit of love is just as powerful, if not more so, than words can be.

So Mother’s Day has come and gone, but instead of worrying about all of the ways we fall short in expressing our joy with being mothers or our love for our children, let’s resolve to spend the next 11 months (or at least the next few moments) counting the many ways in which our love for our children is evident, if less obvious. Have I missed opportunities to say the words “I love you” to my children? Perhaps. But when they look back they will see that my love has surrounded them constantly from the moment they were born. And it may not be until they have children of their own that they realize I have said “I love you so much” to each of them at least a thousand times per day for their whole lives long.


To my children, I love you. I love you so much that I always give you the better piece of fruit.

I love you so much that I lay awake at night worrying about how I’m going to fill your prescription to have enough meds to get us through our vacation.

I love you so much that I once read “Where The Wild Things Are” every night for 3 months straight, and have done the same for each of you with countless stories.

I love you so much that I let you help me put the laundry away, even though it means I’m going to have to put it away all over again when you’re done.

I love you so much that I have practically torn your arm (and mine) out of the socket trying to keep you from getting hit by a car.

I love you so much that “ten more pushes” on the swing is really a rough estimate before you have to get off.

I love you so much that you always have second helpings before I do.

I love you so much that I toured 13 schools before finding one that is “good enough.”

I love you so much that I let you play in the sprinklers and sandbox right after you took a bath (there’s never a good time for a bath).

I love you so much that I screamed at you for getting lost because I didn’t think you were scared enough not to get lost again.

I love you so much that I’m always the last one to bed and first one up, just to make sure you have everything you need for a good day.

I love you so much that I drop everything and get back on the subway with the babies to bring another change of clothes to school only to find out it was a false alarm (that was a good one).

I love you so much that you think “I don’t work like dad does,” and I don’t correct you.

I love you so much that I know who likes extra peanut butter, who likes no crusts and who would rather have “just jelly.”

I love you so much that I will sing “Wheels On The Bus” on a loop until we get to the front of the line, just to make sure you’re not bored.

I love you so much that I count to ten (most of the time) instead of yelling back at you when you wake up every morning shouting “bully!” at me.

I love you so much that our “go to” pandora station is Sesame Street instead of, I don’t know, anything else.

I love you so much that I have embarrassed myself, lost my temper or cried my eyes out on your behalf in front of more teachers, doctors, bullies, parents and complete strangers than I care to recall.

I love you so much that I stand there and eat a peach and watch you guys lick out the brownie bowl (now that is love).

I love you so much that I host playdates with little brats because I want you to have a “friend” over once in a while, even if they require a hawk’s eye the entire visit.

I love you so much that I gave up a career I loved because the people I loved more needed me more.

I love you so much that I sat in the hospital every agonizing minute of every agonizing surgery, even though I wanted to run out of that place screaming.

I love you so much that I trade my soft, fresh turkey sandwich for your peanut butter and jelly crusts.

I love you so much that I stop cleaning up dinner to play “roll the baseball across the table, enthusiastically” with you, even though it’s really not my favorite game.

I love you so much that I let you read “Hop On Pop” to me at bedtime (after I read it to you) even though it takes 15 times longer.

I love you so much that I don’t even mind you probably won’t remember any of these things I did for you, just as long as you never feel like you have been anything less than loved with all that I have and I am.


How do you say I love you to your children? I’d love to see this list continued in the comments section!

Top Ten: Emotions Experienced As A Parent Of A Special Needs Child

In the past when I expressed worry over something about James, I often heard as a reply that every parent worries about their kids, special needs or not. “You won’t have to worry about James breaking curfew, doing drugs, or driving a car,” I’ve had said to me. “Every parent has worries, regardless of if their child has special needs.”  And there is a lot of truth behind those statements.

But I could never shake the feeling that somehow the car and curfew and even getting-into-trouble worries would be worth not having to worry about James’s surgeries, safety from predators, growing old alone, his lifespan and long-term care needs. Now as a parent of two more very typical children, I am even more certain that the emotions involved are indeed different. Special needs or not I love all of my children immeasurably, but the feelings of joy, sorrow, pride, fear… these are all experienced in very different ways regarding James or my younger two.

Top Ten: Emotions Experienced As A Parent Of A Special Needs Child

1. Pride – Think about the pride you felt at your children’s first steps, first words, at the A on their spelling test. I felt that same pride when James walked at 2 1/2 years old, spoke his first word after 4 years (and 4,000 hours of ABA therapy), and got a 3 out of 20 on his math test (up from a whoooolllle slew of zeroes). Yep, that very same pride – times a jillion. And to make it even more complicated that pride was mixed with other emotions like relief, surprise, joy and a little bit of sorrow.

2. Frustration – Ever feel a flash of annoyance when you have to repeat yourself to someone for the third time? How about the eighth time? Or the twelfth time with your hand on their shoulder? How about repeating everything (truly, everything) you say all day to one person anywhere from twice to more than ten times, and having even your raised, angry (semi-hysterical) voice ignored as if you don’t exist? And how about knowing that your annoyance is misplaced because the person “ignoring” you truly can’t help it (most of the time, anyway)?

And how about waiting on hold to make a doctor’s appointment or discuss that medical bill that seemed a teensy bit high – we’ve all felt that frustration, right? How about doing that for 8 different doctors (for just James) and having to hang up every time your wait time gets too long because there are 3 kids at home dancing in circles around you?

3. Envy – I no longer care how it sounds. It doesn’t make me love James any less to admit that I sometimes envy other parents when I watch them scheduling playdates and sleepovers for their kids, dropping their kids off at an activity (as awesome as they are we have to stay in the vicinity for most of James’s activities, ), or helping their child carry a huge science project into school. I also envy the kids who are riding the subway or walking to school alone, who are riding their bikes or going to movies with groups of friends, who effortlessly scale the monkey bars or join in a game of kickball, who can walk through Central Park carrying a balloon.

4. Sadness/grief – There are obviously more sad memories in the span of James’s life than I care to recount, and if you have a loved one with special needs I am sure you have a few doozies tucked away yourself. It’s one of the invisible bonds between special needs parents – the knowledge that we have all experienced deeply sad things and understand that when it comes to a disabled child the stages of grief are cyclical. For me, no matter how wholly I’ve accepted James’s disability, every stage of his life brings along as many new sorrows as it does joys.

One of my saddest moments regarding James recently was watching him through the fence at school at the end of the day. The fifth graders were outside for a bit of extra recess and I spotted James across the courtyard, valiantly following a group of boys from about 10 feet behind. Once in a while the boys suddenly swerved or started to run away from him and every time James would do his best to keep up, even though it was obvious that the boys were not interested in having him as a shadow. James trailed them this way for the last 10 minutes of the school day, smiling, trying to talk to them, blissfully unaware that he was unwanted, and equally unaware that his mother was watching him, silently loathing those boys while deeply grieving for her own.

5. Gratitude – One of the most common things I’ve said over the last decade is, “it could always be worse.” And though cliche, it’s absolutely true – despite our struggles, the bottom line is that every family has problems and many are not as fortunate as we are. I’m grateful for the patience, generosity and empathy I’ve learned from having James. I’m grateful to other people who will never even know how thankful I am for their kind and giving spirits toward James. And yes, I’m grateful that it’s not worse.

6. Guilt – First there’s the guilt that comes along with feeling the aforementioned frustration and envy. Then there’s the guilt I feel for letting James play on his ipod because it”s easier than trying to force him to play a game with me, the guilt of giving him meds I’m not 100% sure are working, and the guilt from lying to him about why we can’t have his “friends” over to play every week – you know, those “friends” he was following around at recess.

7. Worry – I mentioned that someone said that at least I wouldn’t have to worry about James driving a car. Driving a car? How about getting hit by a car? Worried about making friends at school? How about not getting picked on horribly at school? Finding someone, getting married? How about worrying that if he gets married he might have children, and who will be taking care of them? Worried that your child won’t make enough money? How about worrying that when he gives someone $20 for a banana he won’t expect change back? Worried your child might end up doing drugs? How about the side effects of the drugs he’s on already?

8. Inspiration: Nothing comes easy for James. Not grades, sports, friends. Then there’s the surgeries, pills, doctors, therapists, and let’s not forget the amazing list of phobias. But James is still made sincerely happy by the small things in life. Somehow, James has learned the most important lesson of “look for the silver lining.” I can have another chicken nugget? Thanks, mom! I love you. or We can read one more chapter? Tonight? Awesome! And did you catch how much he loves mustard (see last week’s Monday Minute for a recap)? Watching James get through the day and still smile so easily is a true inspiration to me.

9. Anxiety – is different than worry. Anxiety is what makes my stomach tighten every time I walk by a balloon, even when James isn’t with me. Anxiety is what prompts me to check and recheck every aspect of our family vacation to make sure it is 100% special needs friendly. Anxiety is what keeps me up the entire night before James starts a new school year, typing out all of the “must know”information for the new teacher. Anxiety is the best word to describe how I feel, listening to James thrash and scream hysterically for “help, Mom” from the other room while he is having his teeth checked, his blood pressure taken, or God forbid getting a shot.

10. Hope – More than one therapist told us (and was promptly let go right afterward) that James would never talk. James’s kindergarten and first grade teacher told us flat out that even though James was starting to recognize sight words, he would never learn to read phonetically and would have very limited reading skills at best, so not to get too excited (we couldn’t fire her). We sat in an IEP meeting full of educators who informed us that James would be “eaten alive” in a NYC public school. As you can see from the Monday Minutes, James is speaking juuussssst fine. He reads at grade level and is completing his fourth year in the NYC public school system, with only a couple of bites missing. So when someone asks me if James will be unemployed and living at home with me when he’s 40 (much more tactfully, of course) I can honestly say, I hope not!

Head Injuries And Other Darkly Humorous Tales

During the course of the day yesterday I had the opportunity to observe James in a variety of odd behavior ranging from bumping into passerby while reciting bits of “Big Nate” loudly to himself, to finding him in his room sweeping the floor, naked (he was supposed to be getting into the shower). “What on earth are you doing?” I asked him. “I don’t know… getting ready for my shower?” “With a broom?” “Oh.”

“What are you doing James?” I called as I waited for him to return with his water to the dinner table. James shuffled out from the kitchen, my cell phone in his hand. “Where’s your water?” “Here, you need this,” he said. “Why, was it ringing?” “No.” “Where did you get this?” “In your purse.” “Where’s your water?” “Oh, right.” Five minutes later, he shuffled out with the glass, 1/3 full of milk.

Later that evening I found him standing in the middle of the bathroom, gazing blankly at the wall. “James, what are you doing?” “Getting ready for bed.” “Really?” “I’m going to the bathroom.” “Okay, go ahead.” “I’m too tired.” “Okay, well go lay down then.” “Okay.” And he shuffled back into his room where he absently, but peacefully, flipped through the pages of a comic book.

After everyone was tucked into bed I started my usual prep for the morning and emptied out James’s homework folder. My gaze fell on an official looking document from the City of New York Office of School Health. Your child may have injured his/her head today, it read. I remembered James’s para mentioning that he had hit his head during dance practice a couple of days earlier but was still surprised that it had warranted an official notice. The letter continued, Please observe your child for the symptoms listed below over the next 24 hours (already passed). These symptoms may indicate a serious head injury. Go to the emergency room if any of these symptoms develop.

Head Injury Symptoms (include): Loss of Muscle Coordination, Falling Down, Staggering, Drowsiness, Any Unusual Behavior, Confusion

If they had added “Making Nonsensical Loud Noises While Walking Down Broadway” to the list I would’ve been in that ER so fast…

May Is For ALL Mothers: Call For Entries This Month!

My goal this month is to have as many posts as I can about moms in honor of Mother’s Day (May 13th). Though I have a bajllion ideas there is no way to do this goal justice alone. So, I’m calling moms everywhere – of children with or without special needs, young or old, new or seasoned, stepmothers, grandmothers, mothers-in-law, mothers-to-be, might-as-well-be-mothers, single mothers, stay at home mothers, working mothers, moms of many or few – I’d like to hear from you!

Please send me your tributes, poems, stories, pictures, articles, top tens, or anything else that you feel honors mothers this month and I will do my best to get it up on the site.

Thanks in advance for the help, and keep an eye out for today’s kickoff Top Ten about moms!

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