Pebbles

Image courtesy of Richard Winskill

Jennifer Graf Groneberg has a beautiful post today at Parent Dish about ice cream —and ripples. It got me thinking this morning about what effect I have on the world around me —both in my own closely circumscribed world of family and in a larger, more global or community sense.

It’s so easy to go through the motions of each day, one moment at a time, without fitting the bits and pieces together —never seeing the forest for the trees. Days start to run together and events repeat with a numbing regularity which dulls my senses. Sometimes, in order to see ourselves more clearly, we have to step outside our daily routines; take the road less traveled —or at least the left turn instead of the right —and things change.

If we are lucky, we can see the change we are being and creating as we go. If we are, perhaps, not as observant but equally lucky, we have friends who are there to help us not only find the forest but navigate our way through it. That has been my experience in this past year of blogging. Some days —weeks really— I have been moving so fast and furiously that I’ve missed the beauty around me —until some kind blogging friend has reached out and touched my heart, reminding me that my absence is felt; there is a hole which no one else can fill.

Tuesday, the day of my high muckety muck committee meeting, was also my blogging anniversary. I was so busy —and have been all week —that I completely missed it! But, you know, there’s a funny thing here because —without the support, encouragement, wisdom, humor, and self-discovery I have shared with my readers and blogging friends over this past year —I would never have had any sense that my absence was felt at those committee meetings that I missed; that my one voice does make a difference. I would never have spoken up and had my needs —and Nik’s—met with such grace and ease.

Nor would I have been so beautifully reminded of the gifts I bring when I share my son with others —both online and in person. I know my son is magnificent and special; what parent doesn’t think that about their own child? But seeing my child through others’ eyes has made me a more conscious parent, more willing to recognize and, when appropriate, place my son’s needs ahead of my own desires and ego. I feel the weight of the responsibility a little heavier than I would like on many days but I shoulder the load with love because I know I am not alone in the journey.

The meeting itself went well; perhaps I will write more about that another time. The child care, depending on your perspective, was pretty good. There are things I learned that I will do differently next time to make sure Nik has a bit more guided activity for part of the time. Also, I realized that people do not fully understand perseveration until they experience it first hand. The unfortunate effects of allowing certain perseverations to continue for a long time have lasted long past Tuesday afternoon. But I can see that it is up to me to guide those who care for my son as well as to find new and creative ways to distract Nik and keep him more fully occupied in the days which follow.

None the less, I know that Nik was cared for by a loving and conscientious friend; S was not afraid of Nik’s high energy and insatiable —bordering on dangerous— curiosity. She’s even willing to do it again for the next meeting in July! S sent me a beautiful email after she got home; she wrote —

I so loved spending time with Nik. I want you to know, that I was able to connect with how awesome of a kid he is!
I know you already know!

Niksmom, ALWAYS keep the hope in your heart going strong.
That one-on-one time with him was amazing. I watched how he
problem-solved. I watched how he NEVER got discouraged when attempting something. I watched him enjoy his now -
which so many of us adults can never do. I watched his compassion
as he wanted to share his apple with me, just like his Mommy – I was honored.

Niksmom, I loved being with your blessing. Because guess what,
he is a blessing to me too. A reminder of WHY WE DO THIS!
Our precious, precious children.

When is the next ICC meeting? You have me for as long
as you can use me!

With love for you my friend,

Because of S’s generosity and the ripples she created by tossing her pebble into my tiny pond, I was able to do some work on an issue which is really important to me —helping families understand and successfully navigate the transition from the early intervention program to the schools. I am now heading a subcommittee which is going to create a family guide to be used statewide by the birth-to-three program and the parent information resource center. Ironically, our horrible experience with Nik’s transition (and subsequently, his bad school experience) puts me in a really good position to look at this issue from the standpoint of hindsight about what I wish we had known going in and how I wish things had been handled; I also have one of the more medically involved children that they have dealt with in a long time. There are other parents and some service professionals on the subcommittee, too, who have a variety of unique perspectives to share. I am looking forward to the process.

One day I took a pebble called blogging and tossed it into my little pond; my pond was forever changed. Then I took some pebbles from my own garden and dropped them into several other ponds. The ripples are still moving outward and I cannot see how far they extend, but I know that I am changed yet again.

Thank you for being a part of my journey, my growth, and my change. Thank you for the ripples you’ve made in my heart and in my life.

Photo courtesy of http://www.treesforlife.org.uk/forest/photo/rain.html

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Soarin’ with Soeren

In the wake of the unutterably offensive remarks made by Adam Jasinski on the TV show Big Brother, and the ensuing media brouhaha, I had been preparing a post titled “With friends like this, who needs enemies?” Alas, things went a bit wonky here lately with Nik’s health (and continues to be so) and the post never materialized. I suppose it’s just as well; I really hate to give more “air time” to such a pompous ass.

The unexpected delay also meant that I stumbled upon this post this morning from Good Job, Mama. In it, she directs readers to another blog, Mutterings of a Mindless Mommy, which had this post this morning. I cannot begin to do it justice, save to say you need to read it. After reading the story, I was —I am ashamed to admit it— a tad incredulous that a teenager had truly written such an incredibly insightful and profoundly moving piece. So I did what any self-respecting reformed journalist would do —I whipped out my Google Ph.D. and discovered that not only did a teenage boy write such brilliance, it was captured on video when he delivered his speech at school.

If you have the time, please watch this video (it’s approximately nine minutes long). You won’t be sorry.

(ETA: The text of this video is in the body of the post referenced above. Or here.)

So, Adam Jasinski, your fifteen minutes of fame are about over. With friends like Soeren Palumbo I think the rest of us will do just fine, thank you very much.

Keep smilin’
Keep shinin’
Knowin’ you can always count on me
for sure
that’s what friends are for

In good times
And bad times
I’ll be on your side forever more
That’s what friends are for

That’s What Friends Are For ~ Burt Bacharach/Carole Bayer Sager

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Belated Monthiversary

Yeah, I’m gonna take that mountain.
Ain’t nothing gonna slow me down.
And there ain’t no way around it.
Gonna leave it level with the ground.
Ain’t just gonna cross it, climb it, fight it:
I’m gonna take that mountain.

I was born a stubborn soul;
This is just a stumblin’ block;
I’m gonna take that mountain.
—Reba McEntire

I had hoped to post this on the 2nd. But, wow, life keeps coming at me faster than I can duck and dodge lately, it seems. This post has been “in progress” for a couple of days now. Had a few things keeping us on our toes recently, as you may recall!

What, you may ask, is the significance of the 2nd? It was Nik’s 45-monthiversary. Yeah, I know, you don’t usually count the months after they reach a certain age. But since Nik was born, on the second of every month I stop to celebrate the miracle that is my son. (For those of you trying to count right now, Nik was born on December 2nd.)

Last night, after Niksdad and I finished filling out a sensory profile for school (yay, they are finally taking us seriously about the sensory issues!), I sat down and typed out a quick list of some of Nik’s accomplishments over the past couple of weeks. I also did some serious reflecting on where we’ve come together as a family and what Nik has been through as a human being. I got so overwhelmed that I couldn’t write anything

Try as I might, I still cannot bring myself to write in any coherent fashion about the events leading up to Nik’s delivery by emergency C-section or of the 209 day s we spent in the NICU. Sure, I can share the specific statistics of Nik’s weight, length, Apgars (which were 9 and 7), his diagnoses, and his surgeries. I can share funny anecdotes about my son and interactions with other people. What I cannot yet write about —not even for myself — is what I went through. The emotions are too raw. Too real. Too close, still.

How can you capture the essence of one’s personal experience in the aftermath of being told not to plan or celebrate your child’s birth yet beacsue he may not even make it through the night? The implications of receiving such advice are staggering still. There are some things which one cannot write about until many, many years after the fact; I guess this must be one such for now.

In any event, I can —and do joyfully —share the incredible growth of my miracle child. Unlike the last party I threw, this one is full of joy and laughter —and overflowing with love and pride. I hope you’ll join in the festivities!

At one month old, Nik’s feet were a mere 1 ¾ inches long —smaller than the bowl of a common table spoon (not to be confused with a Tablespoon for measuring). His limbs were so small and fragile. Nik’s entire arm was the size of my index finger; my husband’s wedding band fit all the way to Nik’s elbow. He had gone through the first of his numerous surgeries at the tender young age of 19 days. Nik hated to have a wet diaper; one of the first things he learned to do was curl his foot to confuse the oxygen sensor attached to it. When he needed a diaper change, Nik would curl his toes and the nurses would come running to see what the alarms were all about. Even then, Nik was exhibiting some pretty amazing smarts!

Fast forward to today. Nik has been through numerous surgeries and spent way more time in the hospital than any person ever should. To date, he has spent 18.9 percent of his life in a hospital —most of it in one continuous stretch. That doesn’t include outpatient visits or ER trips. Do the math for your own life; if you had spent that much time in the hospital, what would your outlook on life be like? I am continually in awe of my child’s inherent sunny disposition and his utter confidence that he can do absolutely anything. And he can; the boy is unstoppable!

If you’ve been reading my blog for a while, you know that Nik has made some amazing strides recently —just surf my recent archives for plenty of examples! Here are the latest in what I hope will be a long, continuous line of “amazing and death-defying feats” from my little monkey:

Nik walks. Perhaps not with elegance or grace but certainly with verve and enthusiasm to spare. He climbs like a monkey! The sofa, the crib, the window sill…

We play so much more than ever before. The joy and laughter are no longer one-sided; when I can engage him, Nik participates fully and joyfully.

Feeding is becoming enjoyable for both of us again. Nik’s still not eating but he is making great progress with chewing things he wouldn’t chew before —wash cloths, chewy tubes, Nuk brushes —I think because I am making a game out of it. He is trying so many new tastes and textures, still only licking, but without fighting. If I can encourage his enjoyment of many things, I have confidence that he will actually eat them one day.

Nik is now making so much more eye contact more consistently. He laughs appropriately (sometimes not) and is beginning to initiate contact and communication in his own way. Lately, it seems there has been a communication explosion. Nik takes my hands to guide them down to his tray when he wants to get out of his chair. To his lap belt when he wants out of the stroller. To the gate when he wants to go through.

Nik is beginning to communicate more with his voice. While the words aren’t there, he makes sounds that are the tonal equivalent of “No” or “Mo-om!” —you know, in that admonishing tone. Same thing for “up” and “out”, both sound similar but he uses them in the correct context quite often He will approach Niksdad and make a “raspberry” when he wants to play with him (the “fart” song I mentioned here). He will hum the tune of “Wheels on the Bus” when he scoots over to be brushed, “Row, Row, Row your boat” when it’s time to brush teeth. He gives kisses now with a smacking of his lips to the air before he tips his forehead to my lips.

Nik is wearing his glasses more; it’s still a battle sometimes but when he is engaged in an activity he forgets he has them on and will wear them for up to 40 minutes at a time. And speaking of being engaged…Nik will stay with an activity for anywhere from 20-40 minutes now (with prompting and interaction w/someone). It used to be less than one minute!

My once fragile and sickly little child has become strong, strong, strong. He goes on and on like the Energizer Bunny on steroids! The other day, he tipped over his Kimba seating system. The thing weighs roughly 50 pounds! Slow is not in his vocabulary; he’s got things to do and “lost time” to make up.

And did I mention how smart he is? Seriously. Nik isn’t terribly interested in playing with things “appropriately” but if you give him leeway to explore and examine something? He will figure out how it works in the blink of an eye. Sometimes he doesn’t seem to realize that he has all the information to put his skills to work and then…BAM! Just like climbing out of the crib. And he knows the deadbolt on the front door is the thing that keeps him from getting out. —for now anyway! I am already trying to think two steps ahead to solutions for the day —coming very soon— when he realizes he can open that door to a great big world.

I hope the world is ready for Nik.

Ready or not, here he comes!

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Maytag Mom

Today’s post is from a special guest blogger, Samtra K. Devard. I have the privilege of knowing Samtra through some work we have done (and continue to do) to help make the family voice, perspective, and experience a part of everything we do in our state to educate the service providers, current and future educators, and medical professionals who care for our children with special needs. Samtra has been a tremendous inspiration to not only me but to a large number of parents. She is a passionate advocate for children, including her own three beautiful kids —one of whom has Down Syndrome, and she works tirelessly to create greater opportunities for inclusion for all our children. I am proud to know her and to call her friend.

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Everybody knows the commercials featuring the Maytag repairman. This is the guy who has nothing to fix. Of the millions of washers, dryers and dishwashers that are sold – the guy who was hired to fix any problems that Maytag appliances may have, has nothing to fix.

Surely there is something that he can fix. Yes, only if something is broken!

Just like the Maytag repairman has nothing to fix, Mom’s of children with disabilities have nothing to fix. We are in essence Maytag Moms.

Many of us are given a diagnosis for our kids and a laundry list of all the things that are wrong. We are presented with scenario after scenario of circumstances too bleak to contemplate.

The problems that face children with disabilities and their families sometimes seem endless. And for many who are faced with a problem – the natural tendency is to fix it.

A wise woman whom I love and respect once told me it took her a long time to figure out that her role in her daughter’s life was to NOT to “fix” her daughter, because she wasn’t broken. Once she learned that, she was able to come into acceptance of what is – and find peace with that. To function in a mindset that is about maximizing potential and life chances, rather than fixing the problems of a “broken” child or family situation is so much more meaningful. The Maytag Mom is expending valuable energy trying to fix something that isn’t really broken.

Broken means out of order, not working, damaged, ruined, destroyed, defeated, dejected, crushed, dispirited – without hope.

Our children are anything but broken.

The sooner we stop trying to fix the situation or our children, the sooner we can begin the healing process and begin to function in a positive, less energy draining way.

I have learned I am a Maytag Mom. I having been doing all I can to fix things. Acknowledging this has been so profound for me. It’s taken a lot of soul searching in a short period of time to realize that no matter what – we have some circumstances that just are what they are. Nothing’s broken.

The good news is Maytag Moms are good at what they do and can redirect their energies to things that are about building and growing and uplifting. We can do with our lives what was intended – to live and love to the fullest. Love our children and the joy they bring. Resist any temptation to fear the unknown about what lies ahead. Certainly, what the Moms of children with disabilities face can be different than if our children didn’t have a disability – but guess what there would still be something to deal with; just a different something.

But I believe wholeheartedly that the heart, energy and passion of the Maytag Mom is why God blessed our lives in such a great way. Reminding ourselves of the blessings during times of turmoil all around us becomes the challenge.

Maytag Moms – there is a great future ahead!

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Beseiged

I’ve been thinking a lot today about Susan’s post on The Family Room today. She really captured the essence of where we are in our lives right now —sort of. We are very far along the acceptance curve but are still somewhat in “siege” mode, too. It’s a strange and uncomfortable place to be. I so often find myself teetering on the brink of full-on acceptance and being able to simply adopt new routines and adapt when and where we need to. I’ve been able to work out regularly and have managed to lose 40 pounds —nearly half of the weight I’ve put on over the years since Nik’s birth. Stress is a horrible, horrible thing if you don’t create healthy outlets for it —but that’s a post for another day or perhaps even another blog altogether.

Then, there are days like today when my adrenaline flows and I am in my battle regalia.

Today Nik woke up very congested AND runny, coughing, feverish. In short, a sick little boy. Well, at least we think he’s sick. It might possibly be a strong reaction to the DTaP booster he had to get on Thursday. It is part of the ongoing evaluation of his immunodeficiency. Yes, Nik the human pin-cushion has to get jabbed with needles way more than anybody should have to. And we still don’t know the extent of his immune function. The immunologist on call today said, “Well, it is most likely just a reaction to the shot…but it could be an opportunistic infection trying to take hold what with his compromised immune system.” WTF…thanks, I needed that like a hole in the head today.

Going back to Susan’s post, I found myself nodding my head “yes, yes” as I re-read the bit about “a simple cold can throw us all into chaos” and wondering when, if ever, I will be able to stop getting anxious over every last little sniffle or cough Nik has. I hate that such a thing has the power to jerk me right back to the panic of all the months in the NICU. The times we were sure Nik was off the ventilator for good, or had turned some corner then…BAM!

On days like today I feel like I haven’t come nearly as far as I think. I hate that I let it distract me from other things I need to be paying attention to. I become obsessed with finding the answer, the “fix”, the “cure” for whatever physical ailment is standing in our way.

Arrogance? No, desperation.

I really need to be focusing on something else right now —getting ready for a non-IEP IEP meeting on Tuesday morning. That stirs the siege mentality/feelings, too; after a pretty mediocre school year for Nik, it feels like we have to get this one right. This one is a biggie; this is laying some significant ground work. We are meeting with the IEP team plus the district autism coordinator and the psychologist to discuss their evaluation of Nik. We’ve put in calls to both of them to ask for a private conversation before-hand but have gotten NO RESPONSE. I would rather have some vague idea of their general thoughts so as to not be blind-sided in the middle of an IEP meeting. I hate when that happens because I get caught in the emotion and get stuck there. It is not useful or helpful for Nik in any way and I have learned —the hard way—not to operate from that place if I can help it.

To that end, when the school case manager called to schedule the IEP —at which neither PT nor Speech will be represented (WTF, I didn’t agree to that!), I told her that she should absolutely not plan on walking away with anything vaguely resembling a signed IEP. I want this meeting to be a discussion about Nik’s needs and classification and placement (possible school change may be on the horizon. We have very mixed feelings about that!) and that we would need to reconvene for his official IEP later.

Just in case, though, Niksdad and I are preparing a list of the things we want incorporated into Nik’s IEP, including the rationale supporting the educational necessity of each item (e.g., “supports independent living,” “necessary for safety,” or “supports LRE”…those kinds of things). For each one the school denies or doesn’t address, we will follow up in writing and ask for explanations. I’ve been reading Mom Without A Manual lately and have been taking some notes based on her recent experiences with her school district.

I keep telling myself that if we can get through Nik’s IEP for next year and are able to get him the supports he needs (which includes a 1:1 paraprofessional full time), I can let go of the fight or siege mentality and begin to settle in and simply BE Niksmom and Niksdad’s wife. Pursuing my own longer-term interests will have to wait a little longer —and I’m OK with that. Right now, I have two guys in school who need my unwavering support. Nik needs me to fight for his rights until he can do so on his own. Niksdad needs me to believe in him and support him in his very challenging career change from engineering to nursing. He is working toward the ultimate goal of becoming a pediatric nurse anesthetist; it’s a long road but he is brilliant and dedicated. He is building a new future for us so I guess you could say he too must feel under siege sometimes.

Lest I get stuck in the bleakness of the ka-ka going on today/this weekend, I have had glimpses and reminders of all the progress Nik has made and continues to make every single day. The continuing efforts to communicate with those around him, the easy laughter —often at appropriate moments, the physical shifts toward more standing and attempts at walking, the music, the kisses to the “other boy” each time he passes a mirror, the sippy cup with the straw, etc. Those are the things which pull me back from the brink of despair when I am besieged with Nik’s latest illness and the worry that it will turn into something bigger, the IEP planning, or the discovery that Nik has not had ANY speech therapy at school since the June 1st. Yes, I have to take a deep breath and allow myself to focus on the here and now.

Unlike some couples, we haven’t yet figured out how to make time for too many dates or conversation that doesn’t revolve around Nik, school, or work. But we’re getting there in baby steps. Regular workouts, sitting down to dinner together, making time at least one day each week for a family outing of some sort. Like Susan said, “It’s small, but it’s progress, and that makes it feel huge.”

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Blogger Reflection Award

Jennifer from Pinwheels has bestowed upon me a great honor —a Blogger Reflection Award. The award “should make you reflect on five bloggers who have been an encouragement, a source of love, impacted you in some way, and have been a Godly example to you. Five Bloggers who when you reflect on them you get a sense of pride and joy… of knowing them and being blessed by them.”

Then:
1. Copy this post.
2. Reflect on five bloggers and write a least a paragraph about each one.
3. Make sure you link this post so others can read it and the rules.
4. Go leave your chosen bloggers a comment and let them know they’ve been given the award.
5. Put the award icon on your site.

To steal Jennifer’s words (because she writes so eloquently that I want to weep sometimes…and often do!) —”These are my favorite sorts of blogging tags, because it’s full of kindness and good will. ” I agree; blogs that make me feel deeply often make me think deeply as well.

Without further ado, here are my choices–five blogs that make me think and feel inspired:

1. Life with Joey. Joey’s mom has taught me lots in the short time I’ve been blogging. She has a groundedness about her that is inspiring. Yet, she also has a strong sense of humor and is a fierce advocate for her sons —both of them, not just her autistic son. Through her, I’ve learned some practical tips, gained some new perspective, and realized I am not at all alone in this journey of parenting a child with special needs which include autism.

2. From Here to There and Back. I’ve tagged Kristen several times for many things. I can’t help it. I’m not sure how to describe it other than this: It feels like I have known her a very long time —maybe from a past life (if you believe in that)? Not that we know lots about each other, more that our spirits have somehow connected. She always has words of wisdom and encouragement and manges to reach out to see how I am even when it sounds like she’s in the midst of her own challenges.

3. Kristina at Autism Vox has been an inspiration to me. Through her archives of posts about her amazing son Charlie, and now through her daily posts about all sorts of things relating to autism, she makes me think about things I might not otherwise even notice —let alone actively consider how I feel or what I think. She has become my go-to link for quick sources of information about autism research, education, news, debate (of which there is always plenty!), and reflections on parenting children on the spectrum. I don’t know how she manages to do it all, but I am very grateful she does.

4. McEwen at Whitterer on Autism has been such a wonderful gift for me. She has her hands more than full with a houseful of kids, she straddles the line between Yank and Brit (with great translations for those of us who don’t quite understand some of the terms she might use), and she does it all with the damnedest sense of humor. God, the woman should be doing stand-up comedy, I swear! Whenever I need a good laugh (and the occasional tear), I stop by her site for a cuppa. Seriously, she inspires me with her ability to maintain a sense of absurdist humor in the midst of what can be very stressful. It’s a gift, a real gift.

5. Last, but definitely not least, is Sweet/Salty Kate. I found her site through Jennifer (Pinwheels) and have been voraciously reading each and every post. I can relate to so much of what she writes. I don’t really expect her to participate in this meme/award right now —she’s more than got her hands full right now. But I wanted to share her story and her incredible talent with all my readers. She is —to me—strength, dignity, and grace personified. Check her out; you won’t be sorry. (Make sure you read some of the recent archives, too.)

Thank you Jennifer, not only for tagging me and allowing me the chance to think about these bloggers, and their gifts, but for the gift of your strength, wisdom, and heart.

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Good mojo

Well, it seems that there must be some good developmental mojo out there these days. Lots of my newfound blogging mamas have been sharing wonderful things their kids are doing lately —new foods, overcoming fears, communicating in more abstract ways, new coping skills, etc. Lots of exciting stuff. Read about it all here, here, here, here, here, here and here. Good stuff.

Yesterday, I felt sorry for myself and had a wonderful pity party. Tonight, I can joyfully share that the karma has entered the Nik-zone! Woo hoo! But don’t take my word for it. They say a picture is worth a thousand words, right? Blah, blah, blah…look below!

Nik workin’ that zipper with Elmo…after a little nibble.

The NEW sippy cup that Nik taught himself to use…he’s never had the whole suck, swallow, breathe thing down since he’s pretty much had some sort of feeding tube since birth (or had a ventilator tube shoved down his throat which prevented him from being able to even try to suck). He took to it like a fish to water!

And a little something just to make everyone smile. I call it (Sub)Urban Cowboy. Eat your heart out John Travolta!

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"A spoonful of sugar…"

Thanks everyone for all the good wishes…they must have helped Nik dodge the stomach bug “bullet!” Seems he’s fine after just a couple of days of crampy and cranky bouts. I have to wonder if the change in his enteral formula has made a big difference, too. It’s got significantly less dairy and his overall GI health seems better than ever before (knock wood!). I was worried b/c the last two hospital visits (stays, really —a week each time!) have been due to a GI bug that really knocked him down. WHEW!

In any event, it’s been a relatively uneventful few days; that’s always a good thing round here!

I’ve been trying some of the tips that B gave us during the feeding eval. While I wish I could say Nik is eating like a champ, but at least he is eating a bit more and is not fighting me as much. Maybe he is more ready now? All I know is that, for the past few days at least, mealtimes have been much nicer. Still godawful long — 20-30 minutes for oral feeding followed by nearly an hour for the tube feeding then the extra 20 minutes Nik has to remain upright because of his reflux. Multiply that by at least 4 meals a day and, well, you can probably figure out why I don’t get out much on weekends except to the park or for walks with Nik! But it feels like we’re heading in the right direction…bit by bit. Or should I say bite by bite?

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We’ve been avoiding TV in our house for a while (sort of like Kristen’s house, too), but lately Nik has been getting very bored and restless with the usual toys he plays with while the tube feeding is going in. So I decided it was time to try a little distraction. Inspired by a couple of other families (here and here) who have been checking out our favorite nanny, I brought out our Mary Poppins DVD this weekend. I have to say, Nik is quite enamored of not only Mary Poppins herself but finds George Banks to be hysterically funny and laughs out loud when the penguins dance with Burt. Niksdad has even come up with his own lyrics to the “I love to laugh” song (the scene on the ceiling with Uncle Albert) which makes Nik crack up even when he’s crying!

You know the one — it goes “I love to laugh (ha ha ha ha), loud and long and clear. I love to laugh (hee hee hee hee), so everybody can hear. The more I laugh (ho ho ho ho), the more I fill with glee. The more the glee (hee hee hee hee), the more I’m a merrier me!” Nik laughs himself silly over this one! Niksdad, being the manly-man he is, has co-opted this tune for his own silly version which makes Nik positively HOWL with laughter no matter the occasion!

So, at the risk of completely destroying Niksdad’s street cred (he gave me permission!!), his version goes something like this:

I love to fart (thttt thttt thttt thttt), loud and long and clear.
I love to fart (phttt phttt phttt phttt) so everybody can smell.
The more I fart (insert sound effects), the more I fill with glee.
The more the glee (sound effects), the more I’m a pew-pew-er me!

Yep, gotta love my man! (Did I mention he’s a highly educated science-geek type? No, REALLY!)

So, there’s our dirtly little secret. Hee hee hee.

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Ok, on a more serious note, I had a wonderful experience at Nik’s school this morning. I took him early so I could try to wear him out on the playground before breakfast. Um, guess which one of us needed a nap when we were done? Right! zzzzzzzzzzzzzzzzzzzzzzzzzzz.

Oh, sorry, where was I? Right, school.

I ran into the grandparents of a little boy who’s new to Nik’s class, J. J reminds me a lot of Nik when he started school a year ago —won’t bear weight on his legs, doesn’t talk, won’t eat, cute as a button (well, he is!)… He lives with his grandparents who, from what I understand, are basically raising him and his little brother with very little involvement from the mom. I’ve seen Grandma a few times and exchanged pleasantries and encouragement about J’s progress. Today, though, I met Grandpa. The first thing Grandpa told me is that Nik is the reason J is in this school.

Huh?

Turns out when Grandpa came to tour, he was bowled over by Nik (probably literally, since he tells me he saw Nik wheeling himself about in the mobile prone stander) and the independence he saw in him. The teacher told him that Nik wouldn’t stand or walk when he first came to school. That clinched it for Grandpa. Grandpa is, apparently, a big fan of my son. I was very touched.

It meant more to me than I could possibly express at the moment he told me. See, when Nik was born, and often throughout our many, many months in the NICU, Niksdad and I said we wanted to make our experience —good, bad, scary, hopeful —count for something bigger than just our little family. It felt like God chose us to be Nik’s parents for a reason and God brought Nik to this world in the manner he did for a reason. I am not a hugely religious person but I do believe there is a reason for things that we may not always know or understand. So to know that my son —my family— is making a positive difference in the life of another child, another family… Well, it feels overwhelmingly good and like a big responsibility all at once.

I try to live and parent in ways that make me worthy of that gift. Some days I succeed more than others, but each day brings a new opportunity.

Today, life is sweet.

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Duality

This has been a weekend of extremes for me. Extreme heat on Friday, extreme rain today; preschool graduation on Friday, high school graduation on Saturday. I’ve been elated and proud and I’ve been sad and fearful. Funny, the weather almost mirrors my mood swing —or is it the other way around? Is it the weather driving my mood swing instead? Whichever it is, I feel like a human yo-yo.

Nik’s preschool class graduation ceremony was on Friday morning. No, Nik wasn’t graduating; we have at least one, possibly two, more years to go. But, I wanted to go see what it was all about. I am so glad I did. It was a wonderful ceremony full of music and dancing and celebration. Five children graduated to go on to Kindergarten in the fall. Some will go to whatever school is closest to their home; others, kids like my son, will go to a satellite program at another school in our district. There, they will be integrated wherever and whenever possible into general education programs. I have mixed feelings about it but don’t know enough information to really dissect it yet.

What I wanted to share from Friday’s ceremony was the profound sense of pride I felt for each of the kids. Most especially, though, for the differently-abled kids; in the year Nik has been at school, I have seen some tremendous changes in each of them. Each one of them has brought something special to Nik as well —a shared love of music, a gift of friendship and affection in spite of Nik’s lack of reciprocity. A special connection that only they and Nik may understand it exists nonetheless and I saw it in action on Friday.

I watched my little boy —so often lost in some feeling or thought or sensation which totally captivates his attention— clap and “sing” and dance (with assistance) and smile like there was no tomorrow. Yes, of course, music is a magical facilitator for Nik, but there was a connection with those kids that I haven’t seen before. Nik even has learned how to use a “Big Mac” button during a particular song which helps him learn his name. I don’t know if he actually knows his name yet but he sure knows when in the song to hit the button! I don’t mind confessing —I cried. A lot. Tears of joy and hope.

Fast forward to Saturday. My eldest niece, J, graduated from high school. How could this be? Wasn’t it just yesterday that she was my little lovey-lamb and I was her live-in nanny? I remember so vividly that period of now seemingly-ancient history when she was a gurgling baby then a curious toddler. I had the pleasure of living with my other sister (#2; I am the youngest of 3) and her husband and helping them out. They had both started new careers in the hospitality industry and were working crazy hours. I had just dropped out of grad school and was looking for a change, a new start and a chance to figure out who I was.

Helping to raise J for a full year changed my life. I knew, from then on, that I wanted to be a mother. A singer, yes, and perhaps a writer, too. But a mother —that was my ideal. I don’t think I ever told anyone for fear they would call me stupid or old-fashioned. Little did I know then what a supremely wonderful and important job it is.

Nik, Niksdad, and I sat in the bleachers, sweating under the warm June sun. It felt like a slice of small-town Americana brought to life. The ROTC color guard marching the flags onto the field, the slightly out of tune band playing the Star Spangled Banner, the sight of those fresh-faced young men and women in their crisp caps and gowns. It all brought tears to my eyes. I let them fall. I felt proud of this lovely young woman —my little “lovey-lamb” — all grown up and ready to take on the world. She’s turned out to be such an amazing person; I can’t wait to see the shape her life takes on as she grows and matures.

The speakers, as I imagine they might at any small-town high school graduation ceremony, rambled on. The sound system wasn’t the greatest so it was extremely challenging to hear everything they said. It didn’t really matter as most of it was reminiscences of their years together at school. I allowed my mind to wander to another graduation ceremony —one many years in the future.

I looked at Nik sitting so placidly in his stroller (wheelchair, really) with the pump running to deliver his dinner. He played quietly with his current favorite toy and clapped along with the crowd at most of the appropriate places —using both his hands and feet as he loves to do. (Nik doesn’t do anything in half measures!) He even crowed and squealed a bit, too. I wondered if he made some people around us a little uncomfortable. I got annoyed at myself for even allowing the thought to creep in. I couldn’t help it.

I tried to picture Nik in his cap and gown, walking proudly to the podium to accept his diploma. I couldn’t see it clearly and I panicked in my heart. The tears started to flow quietly and I squeezed Niksdad’s hand tightly. Try as I might to dam the tide of thoughts, they swept me away. I was drowning under my fears. Will Nik graduate on time and through the fruits of his efforts and studies or will he merely be graduated because it is time, because he has aged-out of the system?

My rational mind knows that Nik is only three and a half years old. He is incredibly smart and curious and has responded well to nearly all interventions thus far. I have no logical, reality-based reason to fear for his future. And yet, I do.

I hate the duality of thought and feeling with which I constantly struggle. The exhaustion of trying to stay in the moment, of focusing on the here and now and making sure Nik gets every opportunity possible to discover, express, and reach his greatest potential —whatever that may be. The corollary to that daily reality though is the constant need to look many steps ahead, to constantly think of the future. Am I doing enough to prepare Nik for the day that will come when Niksdad and I are no longer here or no loner able to advocate for him, to teach him, to support him and cheer him on? It is not a place I can linger, this future world of shadows and inevitability; it is too draining, too scary, and too painful to imagine the day I am no longer around to love my miraculous child. I cannot linger yet I can’t stay away. Sitting in the hot June sun, I cry. A lot. Tears of fear and frustration.

My self-indulgent reverie is broken by the sound of the crowd applauding. I feel a small hand brush against my arm, seeking attention. Nik is humming “Itsy Bitsy Spider” which is his favorite song to sing with Mommy; he wants me to play. The request itself is a major milestone. I look into Nik’s innocent face —the face of my future —and bravely smile. I square my shoulders and quietly start to sing.

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Ramblings of a sleep deprived mother…

Many Hands Make Light Work or so the old saw goes, right?
I’d like to take a moment to thank the many moms who reached out to me recently —not only through my blog (and through Autism Vox) but through email. I cannot tell you how many wonderful insights people shared and tips and resources, too. Since then, I’ve been running a bit ragged as Nik hasn’t been sleeping through the nights lately.
EMBARASSING CONFESSION ALERT — I sometimes snore so terribly that Niksdad wears earplugs to bed each night! Thus, guess who’s been sleeping like a stone while Nik and I have been having our little visits in the wee hours?!

I’ve been doing lots of lurking on other blogs this week and have posted some comments but haven’t felt like I had much to offer to the blogosphere that would be of any great moment. Nor do I have any great burning issue I feel the need to kvetch about —so, I’ve stayed quiet for the most part. But there have been moments throughout the week that I’ve been spurred to reflection by several blogs and have gone so far as to compose my own post in my head (you know, somewhere in the middle of Acme, Wal-Mart or while at the gym. I think all these fabulous, insightful, and —I daresay, pithy thoughts. Thing is, by the time I get around to my computer, said thoughts? Gone, gone, and gone. Guess that means I’m not meant to share them just yet? …Or some such karmic crap. Could also mean that I am seriously sleep-deprived mom with way too much on my mind and can’t remember for a hill of beans? Nah, I’ll go with the karma bit.

So, in case anyone is interested (besides me, I mean), here’s the latest on my boy wonder:

NIK ROCKS!!!

In the week since he’s returned to school, there’s been a really interesting dynamic happening between both Nik and me and Nik and his dad. It’s like someone flipped a switch and our distant child is finding his way to us. I can’t say for sure if there’s a cause or trigger —frankly, I’m not sure I care. I am just thrilled that my little boy is making more eye contact with us, that he misses me when I leave him at school now, that he gets excited when he hears his daddy’s voice or when I go to get him from his crib in the morning. I love that he’s beginning to show signs of using the concept of “yes” correctly. As in, “Nik, do you want your drum?” (signed in rudimentary fashion by Niksmom/Niksdad) and, at least fifty percent of the time, he will respond with a sign for “yes!” The sign, for those who are not conversant in ASL (Amer. Sign Lang.), is a closed fist rocking up and down from the wrist as if you were nodding your head. Nik, not having tremendous voluntary motor control in some areas, signs by waving his arm in a jerky, slightly side-to-side manner.

It’s pretty funny how Nik responds sometimes. He will reach for the toy in question without signing; my mister independent! We hold the toy out of his reach and encourage him to tell us “yes” by either hand-over-hand or tapping his arm to prompt him. He won’t respond for a bit so we put the toy aside and tell him if he wants the toy he needs to tell us. He usually giggles and reaches for the toy as if he’s not heard a word we’ve said. This goes on a few times. Finally, as we are getting ready to put the toy away, Nik will begin waving BOTH arms. I often wonder what words he would be using if he had them at this point. Probably “Duh, yeah, of course I want the toy. Did you even have to ask?” Yep, I love that he’s catching on to the concept of “yes.”

Every time I turn around lately, it seems like Nik is making quantum leaps forward. My little wunderkind has gone from the child who wouldn’t even bear weight on his own legs one year ago (except in the pool, but I think it’s because he really, really liked Miss Katie!) to the fearless child at the park, cruising from area to area. Even sliding headfirst down the toddler slide and all by himself on the “big kid” slide. Never mind the kid doesn’t stand on his own, much less walk! Nik is fearless and curious.

I watch him beginning to pay attention to things he’s never seemed interested in before —our two cats, the birds outside the window, the flowers growing in our front garden, people around him. It really does feel like a major shift all of a sudden. He’s losing some of his aversions to certain textures of things such as the shredded wood mulch at the park. Six weeks ago, he couldn’t stand the feeling of it on his hands. In the past week, Nik’s been actively seeking it out and running his hands through piles of the stuff. He’s even tried to put some in his mouth (and nearly choked on Mother’s Day! I aged ten years in that one moment!). Nik has never before wanted to put anything in his mouth that wasn’t a hard plastic toy to bite down on!

The irony here is that I am worried now that Nik’s newfound connections and curiosity will give the ADOS evaluators reason to deem him ineligible for the autism program yet again. Last fall, it was agreed that Nik should stay in his preschool class and see how he did with “intensive intervention.” Well, we didn’t know what we didn’t know then and never thought to ask them to not only clarify what they meant but to put it in writing. Won’t make that mistake again!

The challenge we are up against is that the evaluator is fairly new and somehow operating on the assumption that, if Nik makes “progress across all spectrums…it is counter indicative of autism.” Sheesh, that’s like saying that a kid with autism cannot ever make progress or adapt. (It’s this kind of thinking that keeps parents from being able to embrace their neurodiverse child/ren and nurture them to their greatest potential!)

Anyway, that’s what’s on my mind tonight. The brain just shut down so I guess I’m done…for now.

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