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Archive for the ‘inspiration’ Category

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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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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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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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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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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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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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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