Archive for the ‘advocacy’ Category

Saturday morning’s frustration with the Kid Zone left me angry and feeling like I was on the war path. It was not a pleasant sensation. And frankly, it wasn’t pretty either; I’ve been on the other side of the fence —watching another person be so consumed with the righteousness they felt that they scorched others with their heat as they blazed past on the way to vengeance and vindication —and thinking what a jerk the person is being. I must confess that my knee-jerk reaction is to do the same in the heat of the moment. This is why I was grateful that the incident happened over the weekend. It’s that whole cooler heads prevail thing…

When my mother came to babysit on Saturday afternoon I was still upset; I seriously considered going off to Starbucks or Wawa for a cup of coffee and a muffin or something sweet then going for a long drive in the country to cry out my frustration. Instead, I “put on my big girl panties” and went to the Y to squeeze in the workout I had missed in the morning. I felt better afterward; you’ve got to love the endorphin rush that comes from a good workout! As a result, I was able to deal with the childcare situation a bit more calmly.

I left a note for the Child Development Director —the person that oversees all the kid’s programs, the day care, the after school stuff, etc. It simply said “I have a child with special needs and I’d like to discuss one of the Kid Zone policies with you.” She called today and we had a good, calm, cordial, and productive conversation. I explained what had happened and made it clear that I knew the attendant didn’t know me or Nik and that I recognized I was too frustrated in the moment to try to deal with it. It old her that I appreciate that policies exist for a reason and that I wasn’t asking her to change the policy. Instead, I asked for her help in finding a solution that would both support Nik’s and my needs and honor the policy.

It was so simple. In five minutes we had a solution that works for everyone; she is going to leave written instructions for all her staff. The policy is for the protection of other children who have slipped out of the Kid Zone in the brief moment or two it takes for a parent to enter through the main door. I can appreciate this completely; I even told the Director that it sounds like something my kid would do! The solution is that there is a back door through another room which we can use as often as we need to until Nik gets used to the transition. To her credit, the Director never once made me feel like I was asking for something extraordinary or impossible. And, to my credit, I felt like I had taken a stand for my child without burning any bridges or becoming a negative force.

There is a phrase which is used so often in talking about IEP’s and disability rights —Presume Competence. I think the world would be a great deal easier to navigate if we did the same for others we deal with. Presume competence, presume that others want to help or do the right thing. Find ways to work together to arrive at a solution.

Read Full Post »

Last night, we went to a birthday party for one of Nik’s old school mates, N, who just turned seven. It was a pizza, cake and ice cream kind of party; the first party Nik has ever been to outside of school which didn’t center on a holiday or being with extended family. We didn’t know who was going to be there or what to expect; we prepared for the worst in terms of Nik’s ability to handle a potentially overwhelming situation.

Armed with a small, soothing musical toy to which Nik has lately gravitated, chewy tubes, goldfish crackers — and a ready excuse to make a hasty exit with a small boy who had not napped — we set of to explore this new horizon. While I can’t say it was a perfect evening, it wasn’t anywhere near the disaster we had prepared ourselves to face. Other than an early incident of Nik, um, “watering the floor” when we changed his pull-up, there were no tantrums, no wild racing around the room in search of things to throw, no episodes of head banging.

In fact, Nik was quite content to play with the large number of developmentally appropriate toys which belonged to N’s little sister, S. Nik spent a great deal of time playing with a shape sorter (his favorite non-musical toy, I think), some small cars, blocks, and pushing around S’s little shopping cart. Ever the inquisitive clown, Nik tried to get into the shopping cart with less than stellar results; one must give him credit for knowing when to give up the fight.

The gathering was an eclectic mix of adults and children —mostly co-workers of M’s husband, who is in the Air Force, and their children ranging in ages from 16 months to 10 years old. Things were very low key; the kids all played with whatever toys they wanted to while the adults socialized. Being the only non-military family there, we felt a tad awkward at first but Nik took care of that by grabbing the hands of whomever was closest to him to clap; like his Nanny, Nik’s never met a stranger he didn’t like. Every so often he would disappear up the stairs and one of us would have to chase him to keep him out of mischief.

Nik and N were in school together a year ago. In fact, the last time I saw N and his family we had not yet pulled Nik from school. Nik was on the verge of walking and N was in the process of getting his Dynavox. It was an exciting time for both our families.

I was eager to see N’s family again; his mother had been one of the only mothers to reach out to me when Nik started school. Her friendship made the struggles of adjusting a little bit easier. I was anxious to see N in action with his cool Dynavox —the one his mother jumped through hoops to make happen over the summer —and to hear about the progress N has made in his new placement in a smaller class —roughly a third of the size of the preschool class he had shared with Nik. I was excited about showing off all the changes and progress in Nik, too.

Nothing was as I expected; I came away feeling very sad for M and her son. It turns out that the school has not only not hired a new speech therapist to replace the one that left in the beginning of September (after taking off the entire summer, too), but they had not told any of the parents about it. Poor M was nearly in tears when I asked about N’s Dynavox and how it was going. It seems that no one is using it at school and there is no consistency from school to home so N has regressed to randomly touching buttons to hear the sounds and has not made progress toward developing any meaningful way of communicating.

Niksdad and I both started to give M some coaching about what she could or should do but I could see that she was just too overwhelmed to take it in. In addition to her sweet son, N, she has a spitfire little girl of 16 months old who runs her ragged. On top of that, she is a military wife —which is only relevant because her husband is being deployed to Iraq in less than three weeks. He will be gone for six months as he coordinates and runs transport operations for daily troop movements. To say M is anxious and hanging by a thread right now would not be an understatement.

I feel so bad for her and want to try to help in some way. All I can offer her is compassionate understanding and information. I truly think that N is somewhere on the spectrum. (As many of us often remark, “We recognize our people.”) He is sweet and docile, completely non-verbal, perseverates to the extreme over any and all wheeled transportation —to the point of nearly being hit by a car on several occasions because he was so absorbed in watching it that he walked into the street to get closer —and he has significant oral motor issues with lip closure, drooling, and tongue thrusting. His gait is incredibly uneven —it has actually been described to me as a “Frankenstein walk.” I say I think he is on the spectrum because he has not been diagnosed with anything like cerebral palsy or any genetic disorders.

Yet N has never been evaluated for autism, let alone diagnosed, by either medical or educational professionals. This is, to me, the greatest travesty. Here is a child who can program his neighbor’s television remote to translate into French but who cannot communicate in a way anyone else —including his parents —can understand. Who clearly understands what is being said to him and responds more or less appropriately, yet no one at school has ever suggested that he be evaluated for anything beyond his current classification of “developmental delay.” I suppose I shouldn’t be too surprised; if he is placed into an autism program the school loses the funding they get for warehousing him five days a week.

On some level, I think, M knows this, too. N’s IEP is coming up next month and she hasn’t the faintest clue about what is in his IEP and how to advocate for what he needs. I think she is afraid to look too closely because she doesn’t want to see what is right in front of her. M did say she really wants to get N out of his current school; since they moved he is eligible to go to a different school in another district. I urged her to lobby for the change of placement immediately.

I feel so sad for N and his family who don’t know what to do for him. And I feel such a profound sense of relief and comfort with the choices Niksdad and I have made for Nik. There but for the grace of God…

Knowledge IS power.

Read Full Post »

As I commented on this post at AutismVox, there IS a Santa Claus! NYU has listened to our voices.

The campaign is over. I’d like to give props to one person, one organization, that spearheaded the effort — Ari Ne’eman, President of the Autistic Self Advocacy Network. You can read his comments here.

Read Full Post »

Were I to measure what I perceive to be the quality of life for my child and my family this past year —of my Nik’s progress —based on the past few months, I might indeed feel as dreary as the cold winter rain outside my window today. Nikolas has been ill a lot this autumn; he’s faced struggles which resulted in our removing him from school. He is still battling with the mysterious episodic pain which stops him in his tracks and makes my heart feel like it will shatter from frustration over my inability to make it stop —to find the cause to rid him of it once and for all.

I might also be depressed by the fact that my child cannot talk and doesn’t point to make his needs and desires known to those around him. Or the fact that he still doesn’t take any of his nutrition by mouth; he is completely dependent on his g-tube. I might be anxious about his sensory issues or his still being in diapers or any host of other things he can’t do right now.

Those are the things which throw themselves in my face each and every day. I can understand how some might feel they or their child are being held hostage —that there is some ransom which, if only they could come up with it, if only they could pay it would release their child and their family from the frustrations and heartaches faced each day. But those people who cannot see the child in front of them are missing the boat so broadly that they are in danger of drowning in the morass of their own self-pity, tears, and hand wringing.

I will be the first to admit that I occasionally indulge in all of those activities; sometimes I must simply for the release of emotions that threaten to pull me under. I must lighten my burden so I can rise above and keep moving for the sake of my child. Not some changeling who has replaced my stolen child in the dead of night —MY child who is right here with me in all his myriad moods, with his multiplicity of quirks, characteristics and disabilities each and every day.

In looking back at the year that’s passed —preparing for the newness and potential wonder of the coming year, I have been reminded of the amazing progress my son has made, the challenges he has faced and conquered, and the depth and richness he has brought to the lives of countless people each and every day. Even when I cannot see it, it is happening. All this with the help of, and sometimes in spite of, all the intervention we can afford to provide for him. In our case, that’s not a lot right now; if I won the lottery I would find a way to provide as much as possible for Nik. Alas, we have to pretty much take what his Medicaid is willing to pay for and cobble together makeshift solutions where we can. It isn’t always easy but is vastly rewarding.

If I blinked –if I didn’t take the time to review –I would have missed or taken for granted my son’s learning to walk and to stand, to sip from a straw, to remove his clothes, to zip his jacket and unsnap his pajamas. I would have missed him climbing out of his crib and ignored the marvel of motor planning and balance, coordination and sheer confidence that feat had to take.

I would have missed picking up on his uncanny ability learn the tune of songs he’s heard only a handful of times. His ability to use some of those same tunes to communicate things to a savvy listener —I need to wash my hands, I need clean pants, it’s time to brush my teeth, it’s time for medicine. I would have missed the transition of my son going from complete sensory overload —to the point of near catatonic state at the end of the school day— to my home schooled child who now knows and can tell me –using his body –what he wants. Who takes my hand in his and leads me to the armoire where he can see his shape sorter on top; he tugs my hand upward to ask for it. When I take it down and ask “Is this what you want, sweetie?” he grins and sits down on the floor to play with it —with me. It is something we always play with together and he knows it. I would have missed the complexity of his asking me to play masked in the simplicity of requesting a toy.

Or the beginning of him trying to communicate his hunger; he screams and cries and throws himself on the floor as if he is simply going to expire. It’s taken a while for me to catch on but now I can ask, “Are you hungry? Do you want to eat?” and he will growl a funny little guttural sound and lift his shirt to expose his belly —where he knows his feeding tube gets inserted and then he gets filled up. I would have missed the opportunity to teach him that he can say “Mamamamama!” when he is hungry and to know that I will come to him; he doesn’t have to thrash and fight for everything he wants. It is slow but it is progressing.

I would have missed the opportunity to see that my child has come so very, very far from mindlessly pushing buttons and keys to hear lights and music without purpose —or flitting from toy to toy to toy in a matter of mere seconds, unable to focus on any one thing long enough to understand what he can do with it, let alone complete a task —to watching with pride as he sits and plays, engrossed, in a musical book as he turns the pages and explores what the different sounds and pictures tell him. Or the ability to grasp a crayon and scribble a few lines on a page. I would have missed the significance of that development; the ability coupled with the desire to communicate something —even if it is purely for or to himself. He is communicating –a thought, a feeling, a sensation, a vision.

Or his wordless declarations of independence –of moving from diapers to pull-ups, from his special seating system to a regular booster seat all on his terms not mine.. His determination to walk or crawl up the stairs at nap and bed times with as little assistance as possible. His ability to communicate clear-cut choices of toys or activities. His unbridled enthusiasm about going for a ride in the car. His unfettered joy at playing with each of his amazing therapists.

I would have missed the increasing frequency of sly smirks or mischievous gleams in his eye. Or the need to drop everything to clap hands with Nanny or Granddaddy when he hears them come into the room. The way he rubs his cheek and forehead against my husband’s chin, feeling the reassuring scruffiness of Daddy. Or the squinty-eyed grin he gives me every single morning before he gets out of bed. My son communicates in so many ways if I can but slow down enough to hear him –take the time to learn his language.

I might have missed him learning to tolerate new textures, tastes, and sensations; he is gradually increasing his tolerance for things that I once took for granted like the feel of warm sand beneath my feet as I walk on the beach. Or the cool feel of water splashing on my face on a warm summer day. Had I not looked in the mirror at the reflection of this year, I would have missed those subtle shifts for Nik which have the potential to open up new vistas for our entire family.

My child is certainly not a hostage being held by anyone or anything; there is no need to ransom him from anything or for any reason. He shows me every single day that he is ready —and able with my help –to fight his own way out of whatever box anyone tries to constrain him in. He is my fearless, determined boy who will prevail because of the strength of his spirit and his capacity to inspire love, loyalty and commitment in those around him.

Woe betide his so-called captors of any ilk —medical conditions, neurological impairments, bad educational systems, and well-intentioned but misguided professionals even his parents if they get mired in fear and limiting thoughts. Nik will kick ass and take names later as he saunters out the door to his life. His very full, very rich, and increasingly present life.

If one lives each day wearing only the blinders of fear, limits, gloom and doom about whatever challenges their child faces, they will miss the child who has been right in front of them all along. The real hostage in this case is their sense of perspective.

I am grateful that Nik keeps mine in constant, if delicate, balance.


In case you have been in seclusion lately, you are most likely aware of the Ransom Notes campaign recently begun by the NYU Child Studies Center. If not, please take the time to go here to check it out. Then, if you are as outraged as many, many people are, I hope you will go here to add your signature to an open letter to NYU-CSC urging them to halt the advertising campaign. This is not an autism-only issue; it is a case of perpetuating negative and harmful stereotypes about numerous disorders which can impact a person’s life. Education must include a more holistic picture of the person impacted. My son is not his diagnoses nor are any of these people or their loved ones their diagnosis.

Read Full Post »

It’s been a tough road for us lately in NiksHouse but somehow we keep getting up in the morning (or, in some cases, staying up all night) and putting one foot in front of the other. I give full credit for that feat to my little miracle man, Nik. It’s as if he doesn’t realize or remember the excruciating pain he experiences multiple times each day; somehow it’s new each time it hits him. Baffling. Amazing. Inspiring. A constant reminder to me of why I do the things I do. (Like I really need one?)

As I’ve written, I recently stepped down from some community advocacy and activism activities (try saying THAT ten times really fast!). It’s been difficult not only from the standpoint of feeling like I “should” do something to give back or to help other families; it’s been more personal. Not only am I highly motivated and inspired by my own sweet boy, but also by the struggles of a dear friend who’s daughter has Down Syndrome.

She recently shared an experience with me that just broke my heart. She’s given me permission to share it with my readers: (emphasis added is mine)

I am writing to share my personal testimony with all of you
who stand with me in my quest to positively impact the world
of children with disabilities and their families.

My heart is breaking right now because my daughter’s regular
education classroom went on a class trip without a thought of
including her on the trip. My child integrates in a regular general
education classroom for at least half of her day. The remainder
of her time is spent with a special educator in a self-contained

How do you explain not even considering a child you know is
with you everyday? How do you reconcile leaving out any child?
How can anyone possibly hold any hope for a child you don’t
even consider?

How soon will this change?
I recognize that my advocacy efforts won’t help my child today,
but when will what I do begin to matter for my child?
When will children with disabilities count as much as
children without?

I cry – because I don’t know the answers. I really don’t.
How can we begin to impact learning if we are still trying
to figure where a child belongs?

…I only want you to know how important it is for you to
keep fighting for families. Keep fighting for children.

ALL Children. Please.

I don’t share her story lightly —it was a very real and painful experience for her sweet and loving child. I share it because I want you to know that whatever you do —however you choose to do it —to take a stand for our children with disabilities of all stripes is important. It may be simply that you are raising a child with a greater awareness of differences and acceptance. Or perhaps you are at the forefront of a larger movement —be it local, national, or international. Perhaps you advocate through your writing and speaking, your teaching, or your church activities.

It doesn’t matter what you do; what matters is that you do it. For my son, for her daughter, for your own children or grandchildren. For children you will never know.

If it’s true that it takes a village to raise a child, let’s make sure the village we are welcoming them into has room enough for everyone.

Read Full Post »

Bush hangs his head in shame?

Read the story here.

Read Full Post »

Snips and snails, and puppy-dogs’ tails…

More like gnashes and wails and long paper trails –that’s what this little boy’s IEP will be made of! While Nik is still battling the upper respiratory bug and the ear infection which have kept him down (but never out!) for nearly ten days now, I’ve spent the last few days doing some research in preparation for another IEP meeting.

I’m hopeful that the next one will go better, or at least leave us a little less battle weary. We’re going to take a very different tack on this next go ‘round and will do everything in writing and record the session. We’ve already got some specific points we need to follow up on which weren’t addressed in the last IEP. And, going forward, we’re going to be cordial but, frankly, a pain in the butt about requesting an independent educational evaluation (IEE). We have already provided our own privately done evaluation which school has virtually ignored. You may recall that Bobo indicated that it didn’t matter anyway. Well, we’ll see about that one.

We will play their game only better. We’re going to be looking over the goals and objectives with the proverbial fine-toothed comb. We truly feel the goals they have set for Nik are not appropriate and seriously underestimate Nik’s abilities. Of course, we’ll also be looking for an increase in services and now, with the change of Nik’s placement from school to “home instruction,” we’ll be pushing for a teacher to come work with him at least one day each week.

The challenge now is for me to sit down and write up cogent arguments supported by facts and concrete data. It’s a challenge getting my emotions and mama-bear protectiveness out of the way. But I have to in order to give Nik the best shot at a meaningful IEP. I don’t want to go through another year like last year. I mean, I know that Nik will grow and progress and flourish on his own (well, perhaps Niksdad and I might have a tad to do with it, too). But the things he could do, the catching up he could achieve if he is given the right combination of supports, services, and challenges… he could actually benefit from his FAPE instead of just filling space and marking time.

In the time since he’s been home, in spite of his being ill and running a continual low-grade fever, Nik has been so much more animated and focused. He’s consistently (well, almost consistently) cooperating in most requests such as “lie down so I can change your diaper,” or “turn the toy off and give it to Mommy, please.” Yes, that’s right. Along with the newly emerging skill of standing independently, Nik has already made significant progress on TWO of his IEP goals. Frankly, I don’t think it’s much more than the fact that he’s not so bloody overwhelmed by is environment. But, hey, what do I know? I’m “just his mom” and can’t be objective. (Sarcasm dripping from her voice…)

So anyway, I may be a little quiet online for a while as I gather resources and compile data. I’ll be lurking and commenting from time to time but I may not write much this week. Don’t worry though, I’ll be back!

Read Full Post »

« Newer Posts - Older Posts »