Tuesday, August 8, 2017

A DISASTROPHE-RESPONSE TEMPLATE

Dear Persons,

Last week, while visiting the Full Spectrum Grandparents, we met a family from Turkey who are living in urban Connecticut. We Full Spectrums were out walking our dog when two young boys called out to us (because our dog is CUTE). The older son, who was about eight, was pretty flappy, and, at first, actually scared of our dog. All of us were encouraging, and after a few minutes he felt more comfortable and bravely gave our pooch a nice pat. At one point, his mother whispered to me, “He has special needs;” “Oh sure,” I said, “So does my son. They are both great kids!” * She told me her son’s name is Emin. 

Just after this encounter, a week before the end of G’s residential summer college-prep program, I called to check in about getting him his crucial medication for a serious tick-borne disease. During the call, I was informed for the first time that the people in his program had concerns about his behavior and listening and that he might not be included in the final trip. This was utterly surprising to both G and me. 

The person with whom I had that awful phone conversation kept alluding to G in ways that vaguely referenced his disabilities, without acknowledging this fact. After my shock wore off, I was both devastated and furious. Are such programs only designed to help those who don’t need help? Are not people on the spectrum or with ADHD worthy of participating in college preparatory programs and attending college? Did they think I would just agree with them that my child was not destined for independence or deserving of their program??? 

Nope.

So I wrote them this letter. My brilliant Meeting Friend helped me. I am sharing it because not every parent of a person with differences or person with differences has access to the professional and legal tools available to this 3/4 white-privileged, educated family. I can only imagine the linguistic, emotional, practical, and other challenges facing less-privileged, less-educated, and/or immigrant individuals and families with differences and disabilities in the current political climate. 

(I should note that while G was in fact excluded form the final trip for “safety concerns” [GRRR!], the program did acknowledge his contributions to the group and his right to continue to grow and improve his skills in their ongoing school year activities.)  

The letter below is intense and quite long. The basic template for what I imagine would be an effective letter in any case would essentially involve:

1. A description of the situation which is as complete and objective as possible.

2. Legal/institutional considerations which are both valid and convincing.

3. An appeal to the shared humanity and worth of all parties involved — particularly regarding those (you, your child) who may be disadvantaged or discriminated against in the context in question and/or in the larger world. 

4. Proactive suggestions for solutions and accommodations.


The below is posted for Emin, and others like him. 



Dear [respectful title for people/institution who are not getting/appreciating/respecting/accommodating my child {you/your loved one/your child}],

I was really shocked to hear from [name] that [G]’s attendance at the final trip is in jeopardy, and that there might even be some question about his participation in future years. 

My understanding from the orientation and written materials was that if [G] kept his grades up (he has) and had been behaving (he thinks he has, and neither of us had heard specifically otherwise), he would be included in the trip. 

My understanding, more broadly, was that [program] is designed to give underrepresented teens a chance to attend college. Whether this regards kids who are challenged by growing up in limited cultural/educational/socioeconomic environments (economically, this fits [G]), children with physical disabilities (not [G], though as you know we've just learned that he has been seriously ill throughout the summer program, and has nevertheless demonstrated amazing courage and character in following through with [program] and not letting his grades falter), or children with other potentially discrimination-inducing differences (race, ethnicity, citizenship status, neurology; yes, [G], in the latter case), [program] is meant to offer hope and opportunity and, indeed, JUSTICE to children and families who might for various reasons not enjoy the de facto college-attendance privileges available to others.

I don't honestly know how [G] could be more enthusiastic and committed to [program]. Getting accepted was one of the best things that ever happened to him - and was largely the result of his own persistence. Participating in [program] has given him all the hope and confidence that are the underlying purpose of your program. Knowing my son, and as a college professor of several decades, I can assure you that his hope and confidence are commensurate with his potential, especially should he be given the tools [program] purports to offer. 

That being said, I have ZERO interest in having [G] - who is exactly the kind of kid [program] should be serving - subjected to being part of a group that is merely tolerating him without actually seeing his pure goodness, as well as his deep intelligence, boundless humor, originality/creativity, and enormous potential [Full Spectrum Mama=nothing if not modest re: her children ;)].  

If you plan to disinclude him, whether in the short or long term, then you need to be extremely clear with him about why this is happening. He deserves feedback, and the help in finding skills to grow that is the very purpose of [program]! You also need to communicate directly with me in writing about any major concerns, which has not happened to date regarding the above-mentioned trip, etc. [G] did have a problem with his phone in the first week -- a problem that surely other teens in the program have had, though they likely hide it better than [G], who is an open book -- but that problem resolved after the first week and [G] has not had any issues with electronics since, at least as far as he or I are aware. [Program]’s college-like experience is atypical for any 9th grader; I'm amazed by the level of independence required and by the ways kids - including [G] - are rising to the occasion. 

You also - should you decide to no longer include him - need to be very careful that your actions do not involve discrimination under the ADA.

[Program] is funded by the United States Department of Education. Section 504 of the Rehabilitation Act of 1973 prohibits discrimination based on disability in any program or activity operated by recipients of federal funds. Additionally, Title II of the Americans with Disabilities Act of 1990 (ADA) prohibits discrimination based on disability by public entities such as [program]. Thus, [program] has an obligation to accommodate [G]’s disabilities and cannot simply dismiss him from the program based on challenges related to his disabilities. Instead, if [G]’s disability is affecting his ability to handle the responsibilities or expectations of the program, [program] needs to work with him and his parents, possibly to establish an appropriate 504 Plan to address his challenges, possibly to simply be a bit more aware and effective in addressing his disability in order to allow him to succeed in the program. 

This could be an excellent learning opportunity for both [G] and the [name] program. Currently, the [program] website does not appear to acknowledge its obligations not to discriminate, and the administration's all-or-nothing attitude towards [G]’s "lack of sufficient maturity" suggests a lack of awareness of the program's clear responsibilities under the law. It also, I think, evinces a sad disregard for the essential purpose of [program].This situation presents an excellent opportunity for all involved to work together to make sure that this wonderful child, a boy who is so full of potential and fits squarely within the [program] mission, is served, as well as to help the [name] program properly accommodate disabled students in the future, as is its clear duty under the law. 

In addition, the life lessons learned from your student participants themselves when ALL bright, motivated students are included are priceless and may well surpass any academic or practical aspect of the program. (Have you truly met [G]? Have you ever met anyone with a bigger heart? I hear from parents frequently how he inspires their children to laugh more, to dream, to be open, to be themselves…[ditto on the modesty…])

To give you a clearer idea of what it means to accommodate a child like [G]with Asperger's and ADHD (both of which were explicitly mentioned in the IEP that was part of his application process), it's useful to understand how his disabilities impact his compliance with the program. [G] loves [program] and very, very much wants to stay and succeed there, and in his mind, he is completely unaware that he has been "failing" (he literally had no idea that he is noncompliant and jeopardizing his continued participation), especially since he has been vigilant in keeping his grades within the (STRAIGHTFORWARD) guidelines. This disconnect is not uncommon with people with Asperger's -- like many people on the autism spectrum, [G] has a deficit in understanding inference and nonverbal communication, so what is perhaps heard by instructors and neurotypical students as a clear mandate may be missed by him altogether or be heard by him as a mere useful suggestion. This disconnect can make him appear remiss or defiant when, in fact, it is plainly disability related, and he has no idea that he is performing poorly... 

Does this mean he cannot contribute meaningfully to, learn/benefit from, and even, eventually, reflect well upon the [name] program, never mind that he should not go to college? I would certainly hope that would not be [program]’s perspective.

An appropriate accommodation might be to use a system that more explicitly conveys to him clearer expectations, gives him immediate notice of any lapse (right in the moment), and includes a clear discussion each time about the consequences of a future similar lapse. For example, vis-à-vis the final trip, he should have been notified very clearly and in the moment about any specific behavior that was putting his participation in the trip at risk, as well as how he might do better in future (as well as, perhaps, how he might make amends). Such an approach would doubtless be helpful to many if not most students! Denying participation seems a logical and appropriate consequence for misbehaving; doing so suddenly with no warning or chance to do better seems both unkind and unjust. 

Similarly, [G] struggles with executive functioning (again, as is common among people with Asperger's and ADHD), but there are many useful tools available to aid him through these challenges as they impact his compliance at [program]. It is my understanding that he has maintained grades in the 80s without his usual accommodations (and despite illness) so perhaps further discussion of this aspect of his disability is unnecessary; however, if it would be helpful, I welcome the opportunity to further discuss [G]’s disabilities and an appropriate accommodations plan to make [G]’s participation less frustrating for you and more successful for all involved. I am sure [G] himself would be more than eager to do the same. 

Lastly, while I understand that [program] does not have a nurse -- and [G] is sufficiently aware of the gravity of the necessity of taking his twice-daily antibiotic -- it seems intractable, as well as a violation of the legal requirement to accommodate disability-related challenges, that you are unwilling to ask a staff member to assist [G] in remembering to take his medications because "it might cut into their meal time." As I mentioned, he has disability-related executive functioning challenges which could possibly make remembering to take all of his medication a stretch, and he has an extremely serious illness that has a disturbingly alarming prognosis if the antibiotics regimen is not followed properly. I  ask that you accommodate [G]’s disability-related executive functioning challenges by assigning a staff member to check in with him twice a day (he needs to take a pill around 8am and 8pm)  and remind him to take his antibiotic. This basic check-in should take one or two minutes, max.

Please advise me by email (or in writing) as soon as possible whether you will honor this reasonable request.

Finally, please also let me know at your earliest convenience whether you are able to guarantee that you are going to treat my son fairly and give him a chance to make things right and participate fully in [program]. I will not bring him to the bus in the morning or to the campus until I hear from you. He is excited about this week, so I hope that will be very soon.

Sincerely,
[Full Spectrum Mama]


Dear readers, please feel free to cut and paste any part of this letter and fill in your own specifics to further efforts toward inclusion and advocacy.

Love,
Full Spectrum Mama



* I don’t love the term “special needs,” but it was used lovingly by both of us.






Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special nee
ds bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

Tuesday, July 11, 2017

HOPE


Dear Persons,

Last week, I took my daughter Z on a mother-daughter trip to Emily Dickinson’s home. Since Pardner is a chef, we have lots and lots of time together, but are almost always with her brother, G. The outing — happily anticipated by me —  involved a lot of side eye and bored resignation on Z’s part. Parsing which aspects of her attitude belong to rote teen sullenness, which are characterological, and which are attachment disordered is pretty much impossible, so I will just say that she was not terribly impressed. (She was “sort of ok” with the parts of our “adventure” that involved food…)

We were able to have this delightful alone time because, this spring, G got into a federal college prep program for underprivileged and/or underrepresented teens that provides several residential weeks of classes and other enrichment in the summer. 

I sobbed for days when G got accepted into this program. It’s not that I’ve never had allies. There have been lots of angels along our path (and some less-helpful people as well, to put it mildly…), especially certain teachers and helpers in his schools. But this program is comprehensive, and year-round, and it explicitly aims to get kids into college who might not otherwise go. 

I’ve always seen G — with his amazing ideas and creativity and interesting, interested mind —  as someone who’d have a wonderful, inspiring time in college; but I’ve also known it would be a huge stretch, given his learning differences and our income. I’ve been sad about that pretty much since G’s diagnoses.

For the first time, I felt like  a group of people who could really HELP G also really GOT and SAW him. After so many years struggling to get school staff to follow his IEP, or see him as more than just a label, these people were going to spend hours and days and weeks working with G and other teens to build the exact skills needed to get into and attend college!

The program was also going to help…well…ME. This enterprise of advocating for a child with learning and social and physical differences and challenges can be all-consuming. There have been many, many times when I have felt like other people were talking about a different kid when discussing G — and that they basically had never even met the child I knew…

Knowing that this program was going to help me did two major things: it allowed me to finally admit how much I NEEDED that help, and it gave me HOPE. 

Seriously, dear readers, it was a revelation to me how lonely and afraid  I’d felt in this endeavor — so much so that I couldn’t even acknowledge those feelings until there was something to alleviate them. I mention this because you may be in the same boat and I hope you, too, can find that thing or those things that uplift you and yours.  

In the weeks leading up to his first departure, I was increasingly worried as G failed (as always) to brush his teeth unless supervised or shower unless coerced, evinced literally no executive function whatsoever, and had an end-of-semester 9th grade experience in which both his grades and behavior (at home and school) could have been more than a scootch better.

In his first week at the program, self-regulation issues got the better of him. I was barraged with emails with innocuous yet terrifying headlines like “Update,” and “Checking in.” My Meeting Friend — having endured such periods of uncertainty and fear herself when her child was on tenuous ground in various programs — helped me survive. She gave me hope. 

Together, G and I and the staff of the program came up with strategies (including having no phone whatsoever) to assist G to fully participate. We gave me hope. He’s in the third week of the program and so far says it’s “fun” (his highest compliment). 

And Z? She’s doing her own camp, where she can be surrounded by other sour teens. I am pretty sure she’s having “fun” too!


Figure I - “Lego Construction Representing Unity and Difference” (when G saw I was working on this blog post he made this for me, saying, “Everybody expects Lego stuff to be square and this is not - it’s different. And the black and white together represent unity.”)

(Figure II - “The Usual Square Lego Form”)

It’s a little bit of a vulnerable thing, to allow oneself to hope. There have so far been ups and downs, but I’ll take it

I shall leave you with this poem, by a woman many people speculate may have been on the autism spectrum — and who certainly was both extremely “different” and successful in her own ways. 

         “Hope” is the thing with feathers 
         By Emily Dickinson

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -

I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.



Love,
Full Spectrum Mama












Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special nee
ds bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

Tuesday, June 13, 2017

DIFFERENT DIFFERENCES, DIFFERENTLY DIFFERING


Are you and/or your child(ren)…”different”???

As a child I didn’t see difference as significant. I think I noticed that people had different skin colors, genders, ages, spoke different languages, etc., but none of these distinctions held weight for me.  This was partly because I grew up in diverse environments (Panama and the Bronx, then Westport, CT), and partly because my brain has always been a tidge you-know-what.

I’ve been thinking lately about how the ways we and/or our families and/or loved ones differ from the “norm” actually change and have different repercussions and benefits over time and in different contexts. 

Those lists where people suggest “Things not to say to the parent of a Special Needs child” are a good example, because those things change. They change from parent/person/child to parent/person/child. And they change as children grow up and as people grow.

When my son G, who is on the autism spectrum, was little, “what not to say” would have been, well, just about anything since I personally - unlike, um, every teacher he ever had -  thought nothing was “different” about G; in elementary school, our biggest challenge was getting G the support he needed (and, at times, avoiding support he didn’t need). 

Now, I dread people telling me “So, G will be getting his Learner’s Permit soon.” Um, no? And could you not bring that up with him, please? I watch my friends with kids G’s age rejoice in their increasing freedom, knowing their children’s paths will differ in significant ways from my G’s, and I have mixed feelings: glad to have my dear child around longer, isolated, sad about that lost freedom, worried about his future, super proud of him just as he is…

(Please note, statements like, “Oh, every kid does that!” or “Every parent worries about their child’s future” - meant, probably, to be reassuring - are usually on the “not to say” list. It’s not the same. We know our kids, we know what their challenges are, we know the Full situation, so…) 

With my daughter Z, who has struggled with an attachment disorder, what has gotten me all along is when people judge my parenting (they tend not to judge HER because she is so. dang. charming). Therapeutic parenting for attachment disorders is super strong on boundaries in a way that is anathema to most of my crunchy, progressive community. For most of Z’s life, I’ve suffered when I’ve felt that people were blaming me for my daughter’s rages and tantrums. Now, I cringe when people indulge her when she is in fact testing and manipulating them.  I cringe when I have to intervene in ways that seem too strict to people who have not wrestled with attachment disordered behavior in their families…

And she - smart, tough cookie - totally knows both how to work it and why I act as I do. After she’s done being mad, she appreciates my efforts. But I know there are plenty of parents who think I’m a so-and-so. Now? I don’t care so much. Before? Yeah, that was hard. So that’s a change…

More changes: My son’s learning differences seemed to impact him most early on. They are still a major factor, as he is still in school (and they will remain something of a challenge his while life since his learning differences have non-academic implications as well), but as he moves out into the wider world his social and developmental differences may become more significant. My daughter no longer explodes in public, but she’s still contending with a need to control her environment that sometimes causes less-than-healthy behavior. As she grows up, I can see ways in which this may even become a strength, though I worry about anyone who tries to oppose her!

I guess what’s now really sinking in is that I thought once I knew there was something different about myself/G/Z, we would get a label and figure everything out and that would be it. No. And also? Labels change: Since G’s diagnosis with Asperger’s about seven years ago, Asperger’s has been officially folded into the Autism Spectrum Disorders (I say “Differences”!!) diagnosis. 

Even our understanding of labels changes as we see how individual ways of being, thinking, acting manifest over the days, weeks, months, years; as certain labels and conditions are added into the mix, and/or others are removed; as one issue that felt all-encompassing is replaced by another - or by a period of relative stability and ease…Over a lifetime, difference plays out differently. We learn and make mistakes as we go along. 

Sometimes we underestimate or limit people based on prior abilities, and it’s important to remember that we all - no matter our labels/diagnoses/challenges/disabilities/abilities - have the capacity to grow.




I wouldn’t trade either of my kids for any other, less-different child for all the world. Like most other parents, I happen to think they are the two bestest kids on this planet. At the same time,  they are not special snowflakes to be sheltered and protected from everything, especially now that their differences differ differently because they are growing up. We’ve learned that these differences make some things harder and some things easier for them, and, together, we are finding ways of both celebrating and scaffolding our differences in ways that allow for growth and change. 

Love,

Full Spectrum Mama


Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special nee
ds bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!