Archive for the ‘support’ 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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Today being Earth Day I’ll bet you’re expecting a post about that, right? Well, you’d be mistaken. Sorry. Nope, today I am off to a quarterly meeting of the Inter Agency Coordinating Council for my state’s birth to three/early intervention programs . It’s one of those large bodies which meets every three months to discuss the state of early intervention services from every conceivable angle —and believe me when I tell you there are angles I never even imagined existed!

But more important than the mere fact of my attending this meeting, what I really want to share with you is the fact that I am attending. You see, since we took Nik out of school in the fall, I have missed the last two meetings because I couldn’t find appropriate child care and I couldn’t take him to the meeting. I mean, sure he’s cute and all but he is also extremely high maintenance and would be a complete disruption to the very vital work of group.

It sure makes it tough when parents of special children can’t find meaningful ways to contribute to our communities all for want of appropriate care for our kids. I really thought I was going to have to resign from my three-year term; we aren’t planning on putting Nik back into school in the foreseeable future and Niksdad’s school schedule precludes him from staying with Nik. Nik’s medical needs, while certainly not as onerous as they once were, are still great enough that he would require a licensed nurse to provide care. There is a special day care where I could pay to leave him for the day but I am not comfortable leaving him somewhere for an entire day without knowing who is taking care of him and what they are capable of handling should the need arise. Nor do I want to be across town in case of an emergency.

When I brought my concerns to the executive committee of the council, I truly expected to hear “Gee, we’re really sorry, Niksmom. We hate to lose you but we understand.” What I actually heard instead was “Gee, we’re really sorry Niksmom. We had no idea that we were making it so difficult for valued members to participate. How can we support you to feel like your son is well cared for while still close at hand and you are able to participate fully?” I was completely stunned.

After all these years of feeling so isolated —first because of Nik’s medical needs which dictated extremely limited contact with others for two years, then because of the frustrations of trying to find our place in this world of “normal” which doesn’t seem to quite fit most days —well, you can understand the relief and gratitude I felt. It didn’t even matter to me if we couldn’t find a solution; what mattered was the effort.

The effort paid off richly. I am soon going to be loading Nik and a metric ton of his gear into the car and taking him with me to what will be the first of our quarterly meetings together. The state birth to three organization director has rented an extra room in the building and my friend S —who knows Nik well, is going to entertain and occupy my little tornado just down the hall. I can slip in and out of the meeting to start Nik’s tube feeding and give him meds, I will be close at hand if he completely falls apart for some reason, and I am comfortable with the whole set up.

If only the rest of the world were so understanding, so aware of what we parents of our special children have to offer.

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I am not a quilter. But I love the imagery and affinity evoked by the very idea of an old fashioned quilting bee. Not quite like the one in this movie. I envision something more like what I imagine my great-great grandmother, Addie, might have taken part in. I have one of of Addie’s quilts; sometimes, I can imagine her sitting in the circle creating it. Oblivious to the fact that it is an antique and an heirloom, it is the very quilt I took with me to boarding school as a lonely teenager. The same one I huddled beneath through freezing winters as a a broke and starving grad student. The very one I wrapped around my grieving self the night my seventeen year old cat died just months before my wedding. The quilt is old and worn —and rendered all the more beautiful to me because of its history.

The women of her small community on the Texas prairie gathered together creating quilts —not necessarily for special occasions but for everyday use. Sturdy, warm, durable and beautiful, they would be made from scraps left over after making dresses, work shirts, trousers, or baby clothes. Some would even incorporate bits of grain and feed sacks.

Each woman would work on her own quilt; her fingers deftly moving in an unconscious rhythm as the needle weaves through layers of fragments, piecing together a pattern only she can see in her mind —to others it may look like random blots of color in abstract. Each woman stitching without thought as she listens to the stories in the circle, sharing her own in turn.

That is how I feel sometimes about blogging —like we are in our very own sewing circle. This gathering of women —pioneers in our own way —sharing our joys, our sorrows, our dreams, fears, and frustrations as we stitch together the fragments of each day, each moment. At first, the pieces do not make sense until we take a step back and look from another’s perspective. Each one of us has felt what the others have —or we are now, or will sometime in the future. The patterns of interconnectedness emerge with each passing day.

When one of us is joyful we share the glow. When one is low and struggling we reach our hands across the circle to hold her up. Sometimes we even lay aside our own sewing to cradle one another as we work through our grief, our fears. At others we may turn to one another and ask for help with a complicated stitch or the placement of an odd scrap of color that just doesn’t seem to fit. We help each other find our true north when we are lost and we help each woman find the fabulousness within her.

The energy of our circle is powerful and peaceful. We are soothed and encouraged by our utter acceptance and understanding of one another. We are pioneers from different walks of life yet we are connected as we forge our families and communities on this uncertain frontier.

This quilt was made for our wedding by my husband’s “Aunt Pat” and is one of my favorite things on display in our home. Alas, I don’t have any pictures of Addie’s quilt and it is now packed safely away to protect it.

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For those of you who have been following our journey, you know that Nik is currently facing some undiagnosed health challenge. I’ve spoken to the pediatrician and we are formulating a concrete plan of action to try to find some answers. Meanwhile, though, the situation is not improving and it is taking a significant toll on our entire family —but most especially on Nikolas. He is flagging and I am very concerned for him.

I am a firm believer in the wonders of science and medicine but I also know that there is tremendous power in faith and prayer as well. I don’t ordinarily ask people to pray for something specific but I am asking you all to say a prayer —to whatever deity or higher power you choose to believe in and to ask the people in your church, synagogue, or mosque to lift their voices in prayer —for healing for my son.

Please, please pray for healing and peace for my little boy. For God to guide the hands and hearts of those entrusted with his care that they may find answers which will allow them to ease Nik’s discomfort and which may lift the burden of fear and uncertainty for our family.

My personal relationship with God is just that, so I don’t talk about it much with others. But I do believe that God brought Nikolas to this world for some great purpose as yet unknown. I am humbled daily at the prospect of God’s unwavering faith in me and in my husband to guide our special child through this journey of great trials. I am fearful that I will falter on the path and will not do what is right and good for my son, for our family. I am constantly amazed and touched —and humbled yet again— by the loving goodness of humanity, that strangers reach out to me and become friends in my hour of need. Truly, this is the message of God’s love in action.

I take comfort in knowing that we —Nik, Niksdad and I —are enfolded in the hearts of so many and can rest peacefully, for however short a time each night. That the love we put forth comes back to us manifold in blessings we cannot envision. That the tiniest flicker of hope which wanes in the darkness can be fanned into a brilliant flame by the energy of others who lift us up in prayer.

That is the light I hold in my heart tonight.

What matters?
Very little.
the flicker of light
within the darkness,
the feeling of warmth
within the cold,
the knowledge of LOVE
within the void.

Joan Walsh Anglund

Image courtesy of http://www.bobjude.co.uk/graph/anim/animate4.htm

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A quick update on the school situation —

I spoke with the case manager on Tuesday afternoon. While she seemed to be sympathetic to our situation, her official stance was “Let’s go through the IEP and see what school comes up with before we look at what’s next.” Toeing the party line, for sure. Needless to say, I got off the phone feeling very frustrated and a bit down-hearted. As I related the story to my husband Tuesday night, he reminded me —being so much more pragmatic and less emotional than I am on any given day —that to the larger entities involved (those being school and Medicaid), this is as much about a business negotiation as it is about the best interests of a small child who needs much in the way of supports and services.

In other words, my son costs money and they want to see who gets stuck with the largest portion of the bill. Ultimately, they will come around to doing something close to the right thing; I have to believe that or else I would give up the fight before I even begin. In the meantime, they will haggle and dicker like two old-world merchants transacting a complex ritual in the marketplace. Sigh…it is so hard not to take it personally and even harder still to wait it out.

The good news, though, is that our advocate is worth a gazillion times her weight in gold. Seriously, I cannot say enough about the way she is helping us —and it’s not just in terms of the specifics of this IEP. She is a very passionate advocate for children; having spent the past 18 years doing the same for her child with disabilities, she has been tested in the fiercest battles and has emerged with an iron will which doesn’t take “no” for an answer without first trying every avenue to “yes.”

It was at her urging that I delved into the murky depths of Nik’s past. It has also been with her assistance that I made a significant connection today with someone who has the ear of one of the top people with Medicaid’s Managed Care programs for our state. If someone can help push our case through, she may just be the one to do it. Of course, she warned me that she must first talk with our case manager and see where they stand on things so she doesn’t step on too many toes indiscriminately. Ah, yes, the wondrous joys of state bureaucracy; no agency is immune to the politics and the red tape. Ugh.

The other gift our advocate has given me is the constant reminder that, since we currently do have outside services for Nik —already authorized by Medicaid —we actually do have the power. I am not 100% convinced yet, but she keeps insisting that we will see in the end. I hope she’s truly right; I am anxious about getting my hopes up but they are definitely a bit higher than they were a few days ago!

Meanwhile, there is still no SLP at school to replace the one that left. When I spoke with the principal this morning, he told me that he’d made an offer to someone but she took another offer; I’m guessing it was in private practice or a non-school setting and infinitely more lucrative from both a financial and professional perspective. I feel terrible for the speech therapists at school; right now there are only two to handle 96 kids spread out over four locations and one of them is, I believe, only part-time. I can’t fault the previous therapist for leaving; she felt like she couldn’t make a difference for a single child given what she had to work with in terms of time constraints, limited resources, uninvolved families and administration…it’s a sad commentary.

What makes it even more frustrating is the fact that many of the new therapists at school are just that —new therapists. They don’t have the background and the experience to draw upon to handle many of the more complex needs of some of the children like Nik. So those kids are left with nothing substantial in the way of help. I haven’t seen or heard from too many other parents at school who either know that they can fight for more/better for their child or who have shown an interest in fighting for it. Sadly, many just accept whatever their child gets and figures “It’s better than nothing.” Obviously, I disagree. I almost think the little bit they get can be worse because parents make some assumptions about the consistency of what gets carried out in the classroom and don’t follow it up with effort at home.

I don’t mean to imply that I think every child’s parents thinks, feels, or acts this cavalierly; but they do at my son’s school. The demographics are such that many of the children come from single-parent homes, are being raised by grandparents, live in foster care or— worse —are homeless. There are some middle class families at school but they aren’t highly visible in their involvement. I’d like to try to change that; not only would I like to see those families get more involved, but I’d like to see the district provide training to all families about advocacy, IEP’s, planning for our children’s financial futures, etc.

I can see myself as an active, more deeply involved parent at some point. But that time is not now. Now, I want to focus on Nik and getting him the right supports to continue to flourish as he has begun to do…at home.


Tonight, though, I am a quivering mass of nerves and anxiousness. We have decided that the line we are going to take is simple — no school for Nik until he is 5. Sounds so simple, right? I know with every fiber of my being that this is the right decision. Yet, I am terrified of “them” taking away his services and leaving him, us, with nothing.

If you believe in the power of collective prayer or visions, please say one for us tonight and tomorrow? Pray, wish, envision, that Nik gets to spend the next year happily learning the things that most toddlers learn at home with their families. Envision that Nik stays healthy and grows stronger with each day. Envision that he continues to learn the fundamental life skills he will need when the day comes that we must send him out into the world. Envision that we can put that particular day off at least for another year.


In the midst of all the bleak feelings of frustration and near-despair, there have been some really sweet moments with Nik lately which have made me smile. Some of them have been visuals.

Others have been complete sensory experiences—like this morning. Nik awoke at 4:30 am — all sing-songy and chirpy. I lay in bed listening for a bit and smiled. Dragging myself out of bed, I went to scoop him up to go downstairs. When I picked him up, Nik wrapped his arms around my neck, looked me in the eye and then tossed his head back and laughed as if we had just shared the greatest joke. This was followed by a light touch of his forehead to my lips —our customary good morning kiss.

The merriment continued as he played in the family room while I made coffee and got the pump ready for his breakfast. I stood for a moment and watched him play. He was the embodiment of the most exuberant, unbridled joy. There was no one thing I could see that was making him happy —he just was. At one point, he was laughing so hard, he leaned against the TV, panting like a winded long-distance runner, then he doubled over and just crumbled to the floor in a heap of giggles. My face hurt from smiling so broadly.

If only we adults could start each day that way; wouldn’t the world be so much brighter?

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We all sing with the same voice
The same song, the same voice
We all sing with the same voice
And we sing in harmony

Sesame Street

Some recent comments on some of my posts, coupled with some email exchanges, have been on my mind lately. Some of you have commented to me how I have or my family has “been through so much worse than we have,” or “I know my situation is nothing like what you’ve been through,” and things of that nature. I wanted to respond to those well-intentioned, self-effacing, sometimes self deprecating words. (No, wait, don’t leave…it’s good stuff, honest!)

I suppose to someone looking on from the outside, yes it is true; my family, my child especially, has been through very much. On one hand we have the fact of Nik’s extreme prematurity and all its inherent health-related issues. Educators and health care professional are often surprised to meet Nik for the first time; the child they read about on paper is frail and sickly —potentially a child to be pitied for his immense challenges in his short little life. The child they meet is a dynamo —uncomprehending of the word “disabled” or the fact that he isn’t like his typical peers.

On the other hand, I think, in many ways, parenting my child with his myriad needs and diagnoses has been easier for me than parenting your child may be for many of you —my very special friends. While it’s true that our daily life with Nik is often an intricate contredanse in which we must weave threads both medical and developmental, Niksdad and I have had the benefit of being hit with the worst case scenario from before Nik was born.

We already knew that our child may not be “normal” based on ultrasounds showing how small he was for his gestational age. And, certainly, we hoped and prayed for the most normal of possible outcomes. Yet, when it didn’t turnout the way we would have preferred, we made a very conscious decision that our child would be loved and encouraged and believed in —no matter what. We had to throw our expectations out the window from the moment Nik took his first breath with the help of the respirator.

Many of you, my wonderful friends, had what I might call the storybook experience of pregnancy and childbirth. Though there may be some cases where there were some prenatal complications, by and large you had your robust, healthy child who went home from the hospital the same day you did —again, with some few exceptions. You joyfully announced your child’s birth, shared photos, breastfed, and generally raised your completely normal child.

Then you were blindsided by this thing called autism. However it came, whenever it came you were not prepared. You didn’t have the luxury of being able to “gird your loins” as Niksdad and I did. In an instant, everything you knew about your life with your child was changed —radically. I cannot even fathom the shock and overwhelming grief this must have caused. At least, with Nik, I have some idea of the cause(s) of many of his underlying disabilities. I wish that you each could have that for your child. I know that there are many things I cannot undo or fix for my child —things that simply are what they are. I sense, in so many of your writings, the pain of the search for answers, reasons, and understanding—for something you can identify over which you may be able to exert some measure of control.

I recently wrote to one of my dear online friends (and I do consider you to be a dear, dear friend —a kindred spirit —though we’ve not yet met) that I sometimes think the issues our children face in school must be more difficult for a her child than for mine. Whereas my son is more obviously disabled —and has the medical dossier to support him in the face of those who might wish to deny him access and acceptance —her child appears to be just like every other child at school. My son is in a segregated school with dozens of other children like him to varying degrees; the school staff is trained to deal with all kinds of variations on the theme of disability. Her son must make his way in a school where “Special Ed” may still have the negative connotations of previous generations. In some ways, we really haven’t come as far as we think we have.

Indeed, I read a recent post on Redhead Momma’s blog in which she relates a conversation with a principal of a neighboring school —in which the principal expresses her ignorance of autism and how autistic children can benefit from a variety of teaching and therapeutic techniques and measures. I was absolutely floored to read that until I took a step back and realized how fortunate we have been to have a school like Nik’s —imperfections and all. There, he is completely accepted and loved for who he is where he is —right here, right now.

In the final analysis, I must confess, there are times I stand (well, sit actually) in awe of my fellow special needs mamas. To me, you have had it rougher —tumbled like a trailer in an unexpected hurricane —and have risen so beautifully to the occasion. I learn much from the things you write on your own blogs and in comments on mine. I think that is what I love best about this cyber kaffe-klatch we’ve got going here —the recognition that we are all the same in our differences yet different in our sameness.

“We all sing with the same voice” and the song we sing is that of a mother’s love for her child. The notes and harmonies we create together are powerful and breathtaking. Let them be sung from the mountaintops.

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I thought I’d better check in and give an update on the school situation before time slips away and my already overloaded brain forgets …that’s a small window of time these days!

Let’s see, we’ve found out that —for right now— we cannot pull Nik out of school and get his therapies covered by Medicaid. On the surface, that really sucks; but there’s a glimmer of silver in this cloud somewhere. I’ve been having lots of conversations with lots of people who have volunteered to help us.

One is the “high muckity-muck” from Medicaid who is responsible for authorizations and works right under the Medical Director. She also happens to be the person who was Nik’s first case manager when we moved to DE in 2005; she has more than a passing acquaintance with Nik’s case. She basically told me that the school needs to step up and deliver the necessary services. We need to go through the IEP meeting and then look at what school hasn’t delivered on and whether Medicaid can bridge the gaps. A prime example would be feeding therapy; school does not do this so Medicaid will automatically approve it. (Um, wouldn’t it have been wonderful if the SLP at school had bothered to mention this like, oh I don’t know —A YEAR AGO so we could have done something about it sooner?!) But…Ms. Muckity-Muck has agreed to come to the IEP meeting to help do a little pushing back on the “Oh, no, that’s medical not educational” bull that’s been shoveled at us for the past year.

Did I mention that Ms. D —the world’s greatest OT —is also coming to the IEP? She’s basically going to tell the IEP team exactly what she sees and the amazing progress Nik is making with the right level of services. (He currently gets a total of 2 hours per week in 30 minute sessions.) She said to me today, “You know, Nik is so smart that if we can just get past all this sensory junk he’s got going on, he could really take off!” Did I mention we think she’s terrific? (She even called us tonight to give us some tips to help Nik after surgery tomorrow! Never would have gotten that from school, for sure!)

So let’s see…Duck #1 (Medicaid); check. Duck #2 (OT); check. Duck #3 just happens to be one of the most highly respected women in the local and state-level disability advocacy circles —and a woman I’ve know casually (very) for two years; she thinks Nik is a living doll, too. She’s the one I mentioned in my other post (I think?) who is an educational advocate for kids in the child welfare services system. Been playing this game for many years. She’s given us some good coaching so far. She will be at Nik’s IEP.

Finally, Duck #4 — the one we will keep in reserve in case we really need her — a legal aid attorney who does — ta da! —special education work. We haven’t made contact with her yet but she is a friend of a friend so we have an “in” with her when we need it.

So, while we aren’t thrilled with the idea of Nik having to be in school, we have greater hope that school will either deliver the goods directly or they will be backed up against that old proverbial wall and will have to provide funding for additional services.

I’ve been thinking a lot about some of the suggestions that commenters made on my recent post —especially about reduced hours. Since we still have the OT and PT authorization for a set number of sessions through early November —I checked it with Ms. Muckity Muck just to be sure —we are scheduling sessions two days each week in the early afternoon. This means I will take Nik out of school just before lunch, take him home to feed him, then go to see our beloved Ms. D and Ms. T. That leaves us a reasonable window of time to be able to go to the park, or my sister’s pool while the weather is warm enough, before Nik has to be home for dinner.

I am sure school is going to have a complete cow about this but I plan on pushing for that to be his daily schedule —leaving school at 11:30 each day. They’ve already lengthened the school day by 20 minutes on each end —making it a 6 hour 40 minute day. The change is just enough that it may impact Nik’s overall feeding and sleep schedule. He already doesn’t nap consistently at school —too much sensory input to be able to tune it out and relax —so his bed time ends up being earlier than “normal.” I won’t get into the whole complicated schedule we have to keep —what with meds before meals, meds with meals, separating one seizure med from the other, etc. Suffice to say, a seemingly small shift can have a domino effect that can have undesirable results. When Nik’s seizure meds are given too close together he is like a drunken sailor for hours afterward and is very lethargic and unresponsive in terms of interacting with other people or his environment. Great way to send a kid to school, eh?

Never mind the fact that he is 3 1/2 and shouldn’t be “parked” in a seat for the better part of the school day because they do not have sufficient staffing levels to handle his needs!

Anyway, I am rambling now but the gist is this — Niksdad and I feel like we are pulling together a more concrete plan and have some more objective eyes than ours watching over the process. We hope that they can help us prevail in getting Nik what he needs.

I forget which one of you said it, maybe Joey’s mom, about squeaking loudly enough to get the grease. That’ll be us.

May we make the Tin Man sound like an amateur.

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“I think we all feel like that, sometimes: forgetting that we have exactly what we need already within ourselves, if we can just believe in it.”

Those words, about courage, from Jennifer’s post today on Pinwheels really struck a chord with me tonight. It’s been a very trying few days here in NiksHouse. I feel like the dang centipede is tossing its shoes again. The up and down, back and forth of emotions and activities is exhausting. In spite of my working out regularly and trying to eat healthfully, I just feel like Dorothy must have felt in the poppy field. I simply want to lie down and sleep and let it all go on without me.

But I cannot. I guess that’s the cost of trying to be a good mother —no, of BEING a good mother. There isn’t much rest or respite and we have to take it where and when we can find it. I find mine online with you all. I’ve been jonesing to write for the past couple of days but haven’t been able to find the time. Now, it feels like I need to cram a lifetime into one post. Sigh… Did I mention that there are some incredible moms out there who simply must have ESP? I’ve gotten some wonderful emails from a few of you…just checking up on me. It means the world to me. More than you know right now. I may not answer each comment or email but PLEASE know that they have all touched me in the heart.

So I’ll start with the easy stuff first — Nik is having surgery Friday to remove the tube from his right ear. We have no idea if it will make any difference but we sure hope so! The episodes of rubbing and crying are increasing in frequency. Poor guy took THREE HOURS last night to cry himself to sleep. Nothing Niksdad or I did seemed to help at all. It was the tug-of-war with our hearts —the frantic cries and clutching at us for comfort, coupled with the pushing away because Nik was so tired and just wanted to sleep. Unfortunately, we couldn’t give him any Advil to help him make it through the night —too close to surgery. (Anti-inflammatories thin the blood…not good before surgery!)

We survived the bumpy night and made it through the way-longer-than-it-ever-should-have-been pre-op appointment today. Nik must have remembered last weeks’ EEG (I didn’t write about it…it was awful!) where he had to be strapped onto a papoose board and restrained for nearly an hour. (I cried when he finally passed out from exhaustion.) He had THREE major meltdowns in a two hour span while we were at the appointment today. Nothing I could do to help him except try to distract him from the nurses in their scrubs. Who knew “white coat syndrome” could start so young?

Back home for lunch, the rest of the day went great. Off to see Miss D and Miss T —our new favorite therapists. Nik is doing so much better and really making some wonderful progress. I could probably write several posts about that by itself. Suffice to say; lots of good things are happening in terms of his attention span, starting to play appropriately with some toys (instead of throwing everything), more social interactions, generally a bit calmer. You know, only Energizer Bunny to the 3rd degree or so.! Nik is communicating a bit more using some hand-over-hand gestures to put our hands where he wants them. For example, he is a smarty-pants and can buckle the lap belt on his chair, his stroller, you name it…but he cannot always open them. His new favorite game is “I buckle, Mommy unbuckles;” he clues me in to the fact it’s time to play by guiding my hands to the buckle —and wont’ let go until I’ve done my part, repeatedly! He is beginning to respond appropriately to things like laughter. He has the greatest little giggle.

So I’ve been having such a wonderful time thinking of all the fun Nik and I are going to have when he’s not in school this fall. Not that I had any specific things planned, mind you. It’s just the sense of freedom and relief since we made the decision to take Nik out of school. I was in the craft store the other day and walked past all kinds of finger paint supplies and fat crayons and play dough…and I had to stop myself from buying it all on the spot! I realized that being able to work with Nik at home will help fill some of my own need to do creative things. It might not look quite like I imagined, but —really —it’s the act of creating that is so crucial and that I have missed so much lately. I was getting really excited about home schooling.

Then the shoe dropped. Without getting into the details, Nik’s only insurance is Medicaid. For which we have been incredibly grateful; they’ve covered everything that we’ve needed so far. Until now.

Miss K, the admin at our therapists’ office, told me yesterday that they had gotten approval for only a limited number of weeks. Not a big deal; it’s easy enough to get new prescriptions/referrals every so often. The kicker, though, was the note on the bottom of the authorization form “…then transition to school.” I felt like someone had kicked me in the gut with steel-toed boots. Not the sharp stab of immediate pain, but the dull ache which builds and builds. By the time I got home with Nik, I was in a state of near hysteria. I held it together long enough to give Nik his lunch and get him down for a nap. Then. I. Lost. It.

I pulled myself together after Niksdad and I talked about it. We decided not to get too upset —well, a little is good —until we checked it out with the insurance. Maybe we misunderstood. Uh, no, apparently not. I talked to someone from Medicaid today and explained the situation and that we had not intended for Nik to return to school because he had not made any progress. The response I got was “Once a child turns three, it is the school district’s responsibility.” Ohhhhhh Kaaaaaaayyyyy.

So here I am with a 3 ½ year old who functions, for the most part, like a 9-15 month old —with some amazingly age- or near-age-appropriate scatter skills —with concomitant medical issues whom no one wants to take responsibility for providing the necessary and appropriate services. School says it medical; Medicaid says it’s educational. Mama says its bullshit!

Niksdad and I both agree that school is not the place for Nik. In the year he has been there —receiving his “30 sessions per year…minimum 15 minutes group, consultative, or individual…” in each of his services — Nik has made NO MEASURABLE PROGRESS. Now, I don’t say that to be dramatic. We have evaluations done by different professionals at different times throughout the year —including the recent evaluations done by the new OT, PT, and SLP. Every single one of them puts Nik at exactly the same age equivalent as the other reports. NO MEASURABLE PROGRESS.

Now, Nik has certainly made some progress, most of it very recently, but he continues to fall further and further behind his peers. This child whom every professional that has worked with him acknowledges is “incredibly smart,” “Very determined,” “a great problem solver” among many other things. How is it possible that this child then has not progressed? I guarantee it’s not for want of Nik’s trying!

So now we are in a holding pattern. In some bizarre turn of serendipity, I did not send the letter to school yet to withdraw Nik. Whew! I’ve gotten past the feeling of being kicked in the gut but not past the anger or frustration; I will need both to fuel me when I want to quit because I am tired.

I’ve reached out to some parents I know in my area who are very good advocates. Both have children with special needs who are significantly older — 18 and 22 — and both advocate for other children through advisory councils and through the child welfare system. I am hopeful that one or both of them can give us some guidance about our next steps. I am also looking in to finding an attorney should the need arise.

So here I sit, preparing for yet another of Nik’s surgeries. Oddly enough, it’s barely even registering on the anxiety scale. I don’t know if that’s because we are truly relaxed and know that Nik will come through with flying colors, or if it’s because I am so wound up about the school/insurance conflict. Whichever it is, we’ll take all the prayers, good karma, love, hugs, and laughter we could get about now. Our well feels a little dry.

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The sun will rise as sure as there’s a day time
Don’t worry ’bout a thing….in time you’re gonna see
Your life is everything you make it
The hard times never last
Trust in your heart and don’t look back

“It’s Gonna Be Alright” (The Cheetah Girls)

As summer begins to wind down and the start of the school year is around the corner, my heart has been heavy at the prospect of Nik’s upcoming IEP. Niksdad and I already know that school is not willing to budge on some things —most notably a one-on-one paraprofessional for Nik. Their stance is that Nik is at an age where he needs to be able to generalize his learning and not rely strictly on one individual. The concern they raised, in our non-IEP meeting in July, is that Nik is smart enough that he may find ways to not pay attention to the actual teacher but look to his para for validation instead. In addition, the principal feels very strongly about educating the entire staff about Nik’s subtle seizure activity and promises that there will always be eyes on Nik. The principal is new to the school as of early July so I have to cut him some slack for his incredible naiveté. I know from first-hand experience that there are not always eyes on Nik and that there are times he has been virtually ignored by “seasoned” paras who were sitting right next to him in circle time —singing and gesturing their hearts out as Nik sat between them, ignored and not participating.

I know that my son has some very significant educational challenges and that the teacher really believes Nik has incredible potential; she just doesn’t have a clue how to “unlock it” (her words). I have tried my best to be helpful in relating my own observations and insights about what has worked with Nik. I’ve had countless conversations with the OT about my suspicions about Nik’s sensory issues being at the root of his extreme attention and regulation challenges. For whatever reason, my words seem to fall on deaf ears. This has often been the case with medical professionals as well; Niksdad and I persist and persist until, finally, Nik reaches such an extreme state that the doctors give in and investigate the things we’ve asked them to. Many, many times we have been proven right.

Righteous vindication doesn’t feel very good when you are watching your child suffer. Or regress in skills or fall further and further behind his peers when he once made such rapid progress that therapists were amazed at how quickly he learned.

With those things in mind and with the rapid and marked progress Nik has made in just a couple weeks of intensive work with his new OT and PT, Niksdad and I have decided it is time to pull Nik out of school. I’ve checked all the legalities with the Department of Ed (DOE); Nik isn’t required to be in school until he is five. Even then, it doesn’t have to be a public school, just “an educational program.” Our situation is such that Nik qualifies for significantly increased services through his Medicaid so we don’t have to worry about too many out of pocket expenses for therapies. As it is, the insurance has already authorized a 100% increase in his OT (from one session to two per week), a 200% increase in his SLP, and a 300% increase in OT. This means that Nik will now be getting the level of services which were recommended by multiple independent evaluations done over the past 12 months.

Sure, we could keep Nik in school and add the therapies on top of that, but we have to weigh the cost of that against the quality of life for Nik and for us as a family. He is simply too young to be spending every waking hour in some sort of rigidly structured activity. Seven hours of school each day —20% of that spent confined to a chair for tube feedings, plus another two hours of therapy daily (including travel time) —home just in time for dinner then bed (since Nik doesn’t nap much at school and cannot stay up much past 7p). Then throw in the time missed from school for doctor’s appointments…It’s just not realistic to expect ANY 3 ½ year old child to tolerate that much without some serious PLAY —let alone my little Energizer Bunny to the Nth Degree. The more we thought about it and talked about, the easier the decision was to make.

To say that Niksdad and I are excited at the prospect of Nik’s inevitable progress would be a gross understatement. Plus, the idea of not having to wrangle with school over every last little thing —the classroom staff about feeding, nap, and communication about Nik’s day, the school nurse over every last little tweak to Nik’s tube feedings, finding out the hard way that they ran out of diapers or some other supply for Nik, etc —feels like another headache mitigated.

I know it will be a challenging transition for us —Niksdad begins his nursing clinicals in another couple of weeks and will have very little free time (especially after putting in hours at Home Depot, too!) and I may feel slightly (a lot?) overwhelmed at first. But it also feels a bit like I finally get a shot at the “new mother bonding” that I didn’t get when Nik was born. By that I mean that he and I will sort of feel our way through it together. We’ll figure out a new schedule, new activities and adventures. I have already begun to set up a regular therapy schedule for Nik — the same time each day for OT and PT —and we’ve gotten insurance approval for the developmental playgroups, too! Imagine —built-in play dates! I have visions of finally being able to do the things that “the other moms” get to do —Mommy and Tot swimming, music class, toddler story hour at the public library. Walks in the park with other moms, the occasional shopping trip with a friend and her kids — things we couldn’t even dream about doing before because of Nik’s school schedule. And it’s not like I will get another chance at this gig…

I think I may become less angst-ridden about my own future as well. Niksdad and I had a long discussion about him being the sole income earner; he finally gave me “permission” to let go of my guilt about not contributing financially. I no longer have to think about rushing out to get a job —any old job for income — unless or until the time comes when Nik is ready to go back to school and I have an idea of what will make me happy. Have I mentioned how much I love and appreciate my husband? I DO.

I will no longer have to schedule my workouts around Niksdad’s or Nik’s school/work schedule quite as rigidly. I now have the freedom to put Nik in the childcare area while I work out and get a little “me” time. What a concept! I know my own mother is anxious that I will become more overwhelmed and exhausted, but I truly feel this is the right decision for us.

We will figure it out and find a new equilibrium. Just as we did in those awkward and terrifying first days at home after our 209-day NICU stay. I think we’ve done fine so far. In fact, I’d say we’ve done very fine, indeed.

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We’ve been through some things together
With trunks of memories still to come
We found things to do in stormy weather
Long may you run.
~Neal Young

Wow, who knew there were so many of us on this same journey?! Thanks everyone for not only your supportive comments on my existential crisis, but especially the reminders that “this too shall pass” (eventually). I guess I’ve gotten so used to worrying about something that it was inevitable I would turn my radar inward to myself and my marriage. Not a bad thing to do every once in a while, I guess.

Things are looking brighter these past couple of days. Niksdad seems more relaxed —now that he’s embraced the “no work for two weeks” concept. He’s been taking Nik to the park in the mornings after breakfast; giving me a chance to get back into my workout routine which has been interrupted by first Nik’s then my illness. It’s felt really good to get out of the house to do something that makes me feel more vibrant afterward. Sweaty, but vibrant.

We’ve made plans to take care of some projects around the house —big ones, like replacing the yucky carpet in the family room with some sort of wood laminate. The family room is where Nik spends a great deal of time and it takes a real beating. The carpet is ugly and stained and I don’t even want to think about what’s possibly growing underneath! We won’t be able to do the actual work until Nik goes back to school on the 22nd. But, the process of planning and making flooring selections —which of course leads to discussions of other projects —has felt good. It feels reminiscent of the early days in our marriage when we would tackle projects together in our first house —the one in CA, where we lived when Nik was born. We were partners and made a great team.

In fact, we still make a great team; everybody remarks on that and tells us how lucky we are. They are right. We’ve had to shift our focus quite a bit in these past few years but we’ve always worked well together —planning, discussing, researching, strategizing, dreaming together, and inspiring one another. Maybe we took our eyes off the road for a little bit but I think we’re on the right track.

It’s a bit like all the times I’ve been on a car trip by myself (in the olden days before Niksdad came along). I’d be off on an adventure, driving down the highway —not always toward a specific destination. I’d look down and the gas gauge would read near empty and the next exit wouldn’t be for miles and miles. I’d drive along, darting anxious glances at the fuel gauge every few seconds, wondering when I would run out of gas on some lonely stretch of road. Know what? It never happened; I always made it to a gas station in the nick of time.

I need to remember that more often when I get antsy about my life —especially my marriage. The frustration, though, of not being able to have consistent time alone together gets tough. Unfortunately, we aren’t exactly in a position to shell out bucks for specialty care givers —which are VERY hard to find around here. In fact, there’s such a demand that no one with the right qualifications wants to work the small number of hours we need. The respite system in our area is the pits for us right now. Medicaid doesn’t recognize the need for couples to go out once in a while as legitimate. If I worked or were in school, then they would consider our eligibility. The only drop-off respite we’ve been able to find doesn’t’ work with our schedule and our needs. So, we limp along with the help of my folks for now. During the school year I think (I hope) it will be a bit easier; some of the Para’s also do childcare/respite once in a while and I know lots of them!

Meanwhile, though, we’ve been making plans to do some things together as a family; things like a return trip to the beach, a trip to the zoo, a local peach festival this weekend, the pool at my parent’s country club in the afternoons (weather permitting), and a trip to a new “Can Do” playground which opened up about an hour north of here, near the hospital where Nik sees all his specialists. We might even try XBos again!

It feels like a time of renewal somehow. Maybe not quite what I had envisioned —you know, candle light and romance —but perhaps better, more important as we, Niksdad and I, learn to make the most of the precious time we do have together. Time that must include our son right now.

Long before Niksdad and I got married, I wrote a vision for myself of what I wanted our marriage to be:

Niksdad and I have a loving marriage and raise healthy children in a warm,
loving, creative, and stable home. Our relationship touches the lives of
many as we open our hearts and home to many children. Our love helps heal

Deep, huh? It may not look quite the way I had envisioned it all those years ago, but perhaps we haven’t lost our way after all. Maybe I just need to check the map every once in a while to realize that the wrong turns or missed exits will still get us to our destination —wherever that may be. And if I let myself, I just might enjoy the ride.

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