Monday, December 28, 2009
Sunday, December 27, 2009
Actually, not shopping. It isn’t like you can get on Ebay and get a therapy dog. I was actually just looking at therapy dog programs specifically for children with developmental delays. I had gone to a parent support group last week and several parents had therapy dogs for their children. One parent talked about how the dog helped with calming during tantrums, the other with communication issues and safety. It was an interesting discussion because I had been thinking for several weeks that a dog might be good for Jonathan. I hadn’t thought as far as a specially trained therapy dog, but nonetheless something appeals to me about the idea of a dog companion for our family.
So, as I am cruising the Internet, I find this video:
I was speechless and in tears. So much about this boy… his face, his smiles, history…reminds me of Jonathan. Not everything, mind you. I would guess that this boy’s need for a therapy dog is greater than the J-man's. Jonathan does not have the same issues. But this video and its song spoke to me.
"... the way it always was... just isn't good enough... you make me want to be Brave..." (what a wonderful song)
Being brave means doing what you need to do to help your child. Being brave means living with grief. Being brave means having every kind of hope. Being brave means being more than you thought you could be. Being brave also means loving and laughing in spite of... or maybe even because of... the frustrations you experience. I am meeting such wonderful, brave people on this journey of ours.
So, will we get a Therapy Dog? What do YOU think we should do? Most of the Therapy Dogs are quite expensive (think thousands of dollars)... and our needs right now are small. There is a local place that does some companion dogs that I am looking into. But allow me to encourage YOU to look into these organizations and consider donating a little tax-deductible coin toward the efforts. When you read some of these stories .... oiy, my heart!!
For Whit: http://www.4pawsforwhit.com/
http://www.puppyloveinc.org/ (Our local place)
Tuesday, December 22, 2009
Tuesday, December 15, 2009
There are lots of things to update: recent Word Watch activity, our IEP meeting last week, holiday plans, etc. However, I think I will just tell a little story.
Despite his relatively calm demeanor, the J-Man is a man of action. Clearly, he was meant for parents who are willing to run with the bulls and leap tall buildings with a single bound. Alas, he got us. Much like Tiger Woods, Jonathan likes variety. He likes new and exciting diversions. He is not a “stay at home and veg” kind of kid.
Now, any parent with a language-delayed child learns early on that in order to encourage communication you have to make the kid “work” for the good stuff. They want the cool new toy? Make them say “toy” (or some approximation thereof). A cookie? A drink? A Nintendo Wii? Make’m work for it! Motivation is the key… hookm’ with their heart’s desire and they will try to do the hard stuff for the highly sought reward.
And then … there is Jonathan.
Not much motivates Jonathan enough to really, really, REALLY work for it. He has to want it pretty darn bad. Unless whatever you are asking him for is easy to do, he is likely to move on then keep trying. The list is very short of things he will work for.
So whenever we get one, we pounce, regardless of the consequences.
And this is how we have ended up driving Mr. Jonathan around every night for his “Evening Constitutional”.
Here is how it starts:
Jonathan grabs my hand and pulls me to the stairs. He sits down (2nd stair only, thank you very much) and pulls me down to the floor to sit.
On his own he says, “Coooa” (Coat)
“You want your coat?” I ask.
“Coooooa.” He looks at me expectantly.
“Why?” I ask.
“Gooooo…. By-eeee!” He states impatiently. Emphatically.
And from this point I can elicit any number of other vocalizations. Where are your shoes? Shoo (with the sign) Where is your hat? Haaa (with the sign). Where are your socks? (just the sign for socks… oh well).
But... lest we wish to witness a meltdown… we must go out. Somewhere, anywhere. Preferably the gym playland, but Target will work. And since we are trying to encourage communication and vocalizations, we are giving in to his evening demands.
I don’t mind.
I mean, let’s face it. This is practically a conversation for the J-Man!
Monday, December 7, 2009
Saturday, November 28, 2009
Saturday, November 21, 2009
Thursday, November 19, 2009
I am lucky to be a NICU nurse.
I am lucky to make a difference.
Not every story ends up like this...
In fact, many don't.
But I get a chance to be a part of the possible.
This is why I do what I do.
Happy Birthday Kendra!
Sunday, November 15, 2009
So with Jonathan's IEP coming up, I have started thinking about what kind of goals we should be establishing for him this next year. I have been brain storming a list of "good goals" for his IEP.... and I found that this was not an easy task! It is so hard to articulate what his goals should be in a meaningful way. It is so much easier to just say what I want....
Saturday, November 7, 2009
Frequently he is so quiet.
Word attempts are sporadic.
I can never predict when
he might make a sound or word.
He doesn't jabber or babble.
Not to himself, and not to us.
At least, not often.
He is quiet.
Some days I think he wants to communicate.
Other days I think he is happy being quiet.
Sunday, November 1, 2009
Saturday, October 31, 2009
Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference
There is this famous essay by Emily Perl Kingsley called Welcome to Holland. In this essay, she compares the difference between parenting a 'typical' child and a 'special needs' child to planning a trip to Italy, but ending up in Holland. While it is an interesting analogy, it sounds too easy. No offense, but Holland and Italy both sound pretty swell to me.
For me, I tend to think of it a little differently. I look at parenting like taking a walk in the woods. Now, most parents hike the well worn trail. It is wide and well traveled, with many other parents hiking right along side you. You see similar overlooks and panoramas, beautiful vistas and mountain creeks. There are definitely hills to climb, bugs to avoid, and the occasional rain storm. And sometimes you are the unfortunate one to step in the doggie-doo or trip on a big rock. But you have the benefit of others who travel with you on this same path, and mostly share the same experience.
For the parent of a special needs child, parenting is different. There is only a very thin trail, or maybe no path at all. Grass and tall weeds cover the forest floor, and there are unexpected mud pits that suck your shoes in. There is wildlife galore; some of it beautiful and some of it scary and dangerous. Gnatty, swarmy bugs bite. You aren't very sure where you are going or what direction to take, and the few guidebooks or fellow travelers you meet all have a different opinion or direction in mind. Mostly you hike alone, but occasionally meet others who hike these woods too. They know your hike because they are doing it as well. They can share tips and tricks to making it though the woods. But always you must hike on your own, because no one's journey is the same. Eventually you learn to navigate this woods. Slowly but surely you learn to avoid the mud pits, to defend against the scary critters, and to cut though the tall grasses in order to make the journey go more smoothly. And you hope that you are going in the right direction and that you aren't going to run into a bear or a mountain lion. You hope for the beautiful vistas, but you are never quite sure where you might end up.
Last week I attended a class on the Individuals with Disabilities Education Act (IDEA). According to Wikipedia, IDEA is a United States federal law that governs how states and public agencies provide early intervention, special education, and related services to children with disabilities. Essentially, IDEA is the rules of the game that States have live by when providing special education services. This course was put on by a parent advocacy group (PACER), and was organized in such a way as to explain to parents the essential "what you need to know" rules. It covered topics such as the evaluation process, getting services, evaluating those services, and how to troubleshoot the issues and conflicts that could come up.
I wanted to take the class because as we approach the J-man aging out of the Birth to Three programs and entering the next phase, we will be starting to revise both the types of services he gets and creating an Individualized Education Plan (IEP) for him. I figured it might be pretty important for me to not only know the rules of the game, but also how to navigate the system. Avoid the mud pits, tall grass, and toothy critters as much as possible.
What struck me was how lost and frustrated so many of the other parents were. One mom, upon learning that she should have been receiving quarterly reports from her son's teachers and that he was grossly overdue for a re-evaluation (by 1 year, no less), burst into tears. Angry pissed-off tears! Another mom's voice cracked and her eyes welled up with tears when she explained that her son would never progress beyond a 4 year old level, and she wondered how she could ever make a meaningful IEPs for him. And yet another mom explained her frustration in finding an appropriate school district for her child in a recent move (been there, done THAT).
We have been so fortunate. Jonathan has a brilliant team and we have had very few struggles thus far. While I worry on a daily basis about where we are going and what we are doing right or wrong, Jonathan could care less. He is happy. And I think... no, I know... that the reason we have had it nice so far is that I am always willing to ask the questions. To be his advocate. And I have enough knowledge and skill that I can do it right. It doesn't mean I am not filled with doubt everyday, but I know we can make it.
My heart breaks for other parents on this journey who are struggling. There is no real guidebook for these woods, and feeling lost, scared, and confused can become a regular event. When people try to live from a place of stress and fear, things always go terribly wrong. And yet, this is where a lot of these families are ....trying to negotiate the forest without a map, a clear trail, and a solid endpoint.
Tuesday, October 20, 2009
And then, there is my other side... my secret side. This side believes in fate, in a guiding hand of God, in Santa Clause and in the idea that "there are no accidents".
This side looks back on my life and sees some crazy acts of fate. The way my husband and I met (long story). The fact that I have this wealth of previous experience and education in the area of early child development and autism, which in many ways primed me to be aware of Jonathan's issues early on instead of catching it later.
And now, another example of the crazy hand of fate.
In April, 2008, Jonathan was just starting to be evaluated. The school district hadn't yet started to test him, speech therapy had just started to get involved, and we were waiting on an appointment at Children's Hospital. Anxiety was high.
One night I was watching the local evening news and saw a story celebrating a "Top Teacher". Only half watching, I keyed in when the story explained that this teacher worked closely with young children who had autism. Obviously, given my fears at the time, this caught my attention. I distinctly remember thinking "If needed, I wonder how we would get Jonathan in her class in the future".
Time passed, and when we expressed concerns about our first teacher, the district very kindly assigned us a new teacher, Ms Kristin. And we have been massively impressed with her ever since... her knowledge, her sensitivity, her willingness to work with us and Jonathan, her observational ability.... I could go on and on. We sorta felt that the district must have given us their best, given the fact we bitched.
And... strangely... she felt familiar.
Today, something sparked my memory about that news story. A little Google search later and...
Ms. Kristin is the exact same teacher. THAT is a little spooky...
Of course, they were completely right, Ms. Kristin. You are a Top Teacher!
Sunday, October 18, 2009
This year, I was hoping he might have some inkling of a favorite character he might want to be. But alas, he is in the very infancy of his imagination, and does not express any favorites as of right now. Nevertheless, he has taken to wearing dress-up clothes at therapy and loves it. He enjoys putting them on and looking in the mirror. He puts on our shoes and tries to walk. So his 'pretending muscles' are starting to flex.
So I think, this Halloween, we are going to have some fun.
Monday, October 12, 2009
Sunday, October 11, 2009
We had our first snowfall of the season. It was just a little dusting, gone before noon, but J-man insisted on going outside. Mind you, he has been in snow before, but I am not terribly sure he remembers it (he was still pretty little). So coat and hat on, I sent him out on the deck to check it out. He made it about 2 feet, past the grill, and promptly turned about and came inside. Apparently the cold isn't to his liking. I don't blame him.
I read a lot of blogs. Ok, maybe not A LOT, but a few. Most of them are written by parents of special needs kids. I find a lot of insight and inspiration from them. I wanted to share an entry made by one of these blogs (MOM- NOS). Whenever I read this entry it gives me hope not just for J-man, but for the world at large.
Check it out: The purplest.
Wednesday, October 7, 2009
Watch CBS News Videos Online
A dear friend of mine, a grad school buddy, suggested that this study mentioned was seriously flawed (indeed that is true) and that the reason we see these increased rates is because of "a broader diagnostic criteria & greater public awareness". He is certainly not the only one to feel this way... that the rates of autism are some kind of statistical anomaly and not truly reflective of "pure autism". And indeed, while these reasons may be a factor in the rate change and prevalence of autism, I would suggest that those reasons are wholly unsatisfying to both why the rate changes are being seen and what these rate changes actually mean.
Of course, there are two possible lines of reasoning for the changes in the rates of autism.
Reason One: the reason no one wants to be true is that there is a real, honest-to-goodness reason why we are seeing more autism. The possibility that... for some unknown, scary reason... children are having some major neurological event either prenatally or in the very early developmental years that results in the unique autism symptomology. The theories range from the the plausible (prenatal exposure to some kind of teratogen, possible autoimmune issues coupled with environmental or viral insult, mitochondrial issues), to the unique (folic acid overload, Vitamin D deficiency) to the crazy-ass (just Google for the nutcases).
People with no children or typical children are scared to death of Reason One... because lets face it.... if it is Reason One, it could happen to your children. It is nicer to think that it is all genetic, and you are safe, and the rate increase is all about Reason Two.
Reason Two: The new rates of autism are a statistical anomaly, the result of over diagnosis or misdiagnosis, or both (whew, thank god.... it isn't real.... anyhoo.... ).
Ok, let's make the assumption that the true occurrence of autism in the world has stayed stable for the last 1000 years (in essence, there is no other reason for more autism). Given that assumption, what are the reasons for the current changes in overall rates in autism diagnosis? The possibilies, as far as I can tell, fall into the following categories:
1) Autism has been historically under-diagnosed. Basically, this assumption suggests that the current rates are more accurate, and that the previous rates (of 1 in 150 kids) suggest a lack of overall diagnostic ability by professionals in the field and that the broader inclusion of mild to moderate cases actually does reflect the same neurological conditions that lead to these specific disorders. Thus, this suggests 50 years ago we either had:
A) A lot of mild to moderate autistic children running around not getting services, and ending up labeled learning disabled, emotionally disturbed, or ultimately becoming diagnosed autistic due worsening symptoms, or
B) The mild to moderate ones "grew out of it" (which experts say can't happen, but whatever)
2.) Autism is being grossly over-diagnosed. Basically, this assumption suggests that there has been a complete frenzy to diagnose kids with autism, even though they might not meet strict criteria. Diagnosticians are misdiagnosing kids because they either are poorly trained in recognizing 'true autism' or are motivated to "get kids services" and the easiest way is to give an autism label. Therefore, the "new autism rates" are a reflection of a misapplication of the diagnostic criteria and a "problematic" and gross broadening of the criteria.
Of course, this assumption then suggests that the kids that are being NOW diagnosed as "mild to moderate autism" are, in fact, either:
A) Just fine... nothing is wrong with them that a swift kick in the ass won't cure;
B) Suffering from some other condition that causes significant language delays, social delays, and/or sensory issues (see my review of Autistic-Like Graham's Story) and apparently we have no words for and no historic precedent for, or;
C) There are always weird kids... that is all they are and were 50 years ago.
3.) Early identification is the reason we see a rise in Autism rates. So, in the last 10-15 years, a lot of education has gone toward getting doctors and educators 'up to speed' on autism spectrum disorders and working toward an early intervention model that allows these kiddos to get services early and improve outcomes. Ok so, more awareness, more reporting, increased rates. Makes sense.
Except, and here is the part I cannot get my head around... then what happened 50 years ago? So, 50 years ago, a kid was not identified as autistic early... in fact, nothing was noticed until school age. Well, there was 1 of 3 possible scenarios:
1) Kid was not truly autistic, or "grew out of " the symptoms by the time he/she reached school age.... enough so the teacher just thought the kid was weird, but not disabled. Probably didn't do awesome in school either. Experts say that can't happen... neurology is neurology... but whatever.
2) Kid was truly autistic and was stimming like a mad-fiend when he entered kindergarten. Which, if this ended up happening the rates would go UP, right.... just the reporting TIME would change, not occurrence.
3) Once the kid entered school and still had some difficulties and behaviors, he was dealt with as LD or emotionally disturbed.
So, does that mean that we are just re-labeling the problem with new words? If the rates have truly remained the same for the last ... oh, say....1000 years, what accounts for these new kids? Are they faking? Misdiagnosed? Brats? Had they been diagnosed as something else 50 years ago? Or not at all?
That is what makes me most curious. IF the rates are really statistical anomalies, then what would we have called these other "new" kids?
Or, is it possible that these mild to moderate cases are really something NEW? That 50 years ago we didn't see these kids because they weren't there... that something more has happened than just some re-labeling shuffle.
I really don't have any answers, but I can say this. In my humble experience, parents of a child who is given an autism diagnosis rarely sit back and just accept it. Generally, every parent I know looks for second, third, and fourth opinions. Indeed, I would guess that the increased awareness even fuels THAT... going out and finding better doctors, more complete evaluations. And even if there is funny business going on (and I am sure there is)... there is a reason for it. No one I know WANTS their child to have a disability. What they want... what they need... is help for their lost child.
So, what is My Big Opinion?
Call it Autism. Call it Apraxia. Call it Sensory Processing Disorder. Hell, call it the Snowman Syndrome for all I care. But recognize that all of this really does mean something for that 1 in 100 family, regardless of what you call it. Regardless of whether these children are being correctly diagnosed, mislabeled, or are the mark of some new, scary epidemic, we cannot and must not poo-poo these rates. These rates DO mean something. They mean that for one family in one hundred, life will never be the same and they will face struggles that other families will not. It means that their child... whatever the reason... is struggling with something that impacts their ability to learn, ability to form relationships, and ability to interact with their world. For all of our fine categories and fancy diagnosic labels, let's not forget to keep our eye what is really important.
Saturday, October 3, 2009
Tuesday, September 29, 2009
Sunday, September 27, 2009
Wednesday, September 23, 2009
Saturday, September 19, 2009
Monday, September 14, 2009
Sunday, September 13, 2009
J-man has always had 'oral sensory seeking' issues. He has chewed on everything since he could reach toys. It was especially pronounced when he was younger, where he had to mouth every toy he interacted with before he could play with it. As he has gotten older, this 'sensory seeking' behavior has decreased significantly... to the point that I thought we might be over it.
But over the last few weeks it has come back with a vengeance. He is chewing on his hand, his blanket (gross!), his shirt (double gross!!), a variety of toys, and pretty much anything he can get his hands on. Our OTs have tried to shape this behavior to "chewy tubes" and other acceptable things to chew on, but the J-man is the definition of uninterested. The only thing that can interrupt this 'oral behavior' is the pacifier.
The dreaded passy.
Up until now, I never minded letting him have his passy. The way I saw it, it was a more 'normal' object to be sucking on than any of the other possible objects he might try to put in his mouth (like dirt, rocks, crayons, little people, cars, car keys, etc etc). A pacifier is 'normal'. However, the passy is starting to present some problems.
Firstly, he is getting a little OLD for a passy. I mean, he is a big boy, and I am sure he might look older than he is. So, while I could explain why a 2 1/2 year old boy has a pacifier, it isn't an easy sell. We are starting to get the sideways glances and disapproving looks... which does defeat the whole 'look normal' reasoning for using the passy in the first place.
Secondly, it is really hard to encourage vocalizations in a child who has a plug in his mouth. It is pretty easy for him to avoid making ANY noise whatsoever with the passy.
Of course, it is pretty easy for him to avoid vocalizing with his whole hand in his mouth too.
I am at a loss for what to do about this issue...except wait it out. And hope that he doesn't go to high school with a passy in his mouth.
Don't laugh, it could happen...
Monday, September 7, 2009
And the music. Specifically, the soundtrack from 'Hello Dolly' that provides the background music for the movie.
As we watched the movie for about the 1000th time, I started to sing along to the movie "....if only, for a moooo-ment, to be looooved a whole life loooooong...." Or something like that. And Jonathan became utterly fascinated with my singing. He opened my mouth wider, looked inside as if to find where this noise was coming from. Now in the spirit of full disclosure, he may have been wondering how the human mouth could make such a god-awful noise. But he seemed to be honestly trying to find out where the sounds was coming from.
Slowly, I sang the refrain over and over again. He opened and closed my mouth, peered inside, and eventually brought his mouth close to mine, opened his and emitted a tiny "ahhhhh".
He was trying to sing!
I realized then that I have never heard Jonathan sing. Not even random sounds to music. He has never even tried. He listens to it, and thinks it is great when we sing, but he never has tried to make the sounds himself.
Saturday, August 22, 2009
The best part of Vicki Forman's memoir is its honest brutality. The experience of parenting a micropremie is... unfortunately... not a singular experience. And Ms Forman's book could have focused on her heroics... the sacrifices, the successes, the 'triumph of the will' stuff. But instead, she paints a brutally honest portrait of herself, her experience, her son, and the medical establishment as a whole. She doesn't pull any punches, but... as a part of that "medical establishment" I don't feel personally hit. Many, many, many of the ethical and moral issues she presents in this memoir are not new concepts for me... I grapple with these issues every time a baby like this is born...
... how much is too much? when do you stop? what are the consequences of stopping, or not stopping care? what are we doing to families, and these children? why is that we (the medical community) can impose care on these patients, but when it comes time to remove care we require that parents be the ones to decide (nice position to put them in, ehe???)
The list goes on and on.
She is angry. Angry that she is put in this position, angry at the doctors, nurses, with choices that she can and cannot make. Angry at the situation, at the course her life has taken. And with a loss of perceived control that she feels she had (we all have this idea of perceived control... it really bites when you realize there is no such thing). With that anger comes overwhelming sadness, soul-numbing guilt, frustration, denial, vacillations between hope and fear, and emotional highs and lows that wear down any soul.
She builds up and tears down her own arguments, her straw men.... and I found myself simultaneously agreeing and disagreeing with her. She presents her experience as a special needs parent... warts and all... and does not allow the reader (or me) to raise her up on high. There are failures, and successes, and everything in between. She is a real person with real feelings, real reactions... and they are not always nice and not always friendly and not always 'good'. But they are REAL.
And that might be what I loved MOST about this book. I don't need any saintly martyrs to tell me how to be a special needs parent. I don't need anyone saying "count your blessings" and "he has a special purpose in God's plan'". Nice thought, but thoroughly unhelpful. And frankly, I really don't think that... if God exists ... he is a micro manager. I love my son more than anything... probably more than myself, to be honest.... but I hate his disability. I hate the being scared all the time: of today or uncertainty of tomorrow. I hate the fact that I... as his mommy.. may never get to experience "normal" parenting (if that even exists... apparently it does at ECFE). My worries will always be different, and our fights for the J-man will always be MORE.
And that straight up pisses me off.... and that's okay. It is okay to be this human that I am.
This Lovely Life is truly lovely. Not in a traditional way, or easy way, or a safe way. But in a very, very human way.
Wednesday, August 19, 2009
Friday, August 14, 2009
Saturday, August 8, 2009
The Green-Eyed Monster Momma is always lurking in the shadows. Sometimes her voice is a mere whisper in the void. An edge of sadness, loneliness or guilt that taints me. On good days, in good times, when Jonathan is doing well and we are seeing progress, she is faint and weakened. But she is always there, ready to rear her head and pull me down into the depths.
This weekend, she really got her hooks into me.
J-man and I went up to my parent's cabin this weekend. It is lovely... cool and green and relaxing. Jonathan loves to run in the yard, around the cabin and in the woods. But he most especially loves the water... to go on the dock and on the pontoon boat, look into the water and feel the waves. He is no happier when we are at the beach; at the water's edge, splashing and playing with the plastic boats. It is a great way to spend a summer weekend.
The cabin is located near some family friends' cabins, which makes for a lot of get-togethers and BBQs. The families work on projects together, go out boating together. I wouldn't be surprised if my parents retire near these friends and grow old together. These are lifelong friends of my parents. I grew up with their kids and they all have children of their own. Three generations of friends that are practically family.
Generally they are aware of Jonathan's issues. Of course, they do not know the depth and breadth of his delays, but I have explained briefly what is going on with him. Basically, I get pretty much the same response I get from everyone who isn't around Jonathan that much.... apparently, I am over-reacting and he will grow out of it. After this weekend they may refine their opinion... but then again, denial is a river that runs very deep.
Last night we were invited to a BBQ at their place. Jonathan was being a pill. His ability to tolerate the word "no" is very small and limited, and his temper tantrums are a work of art. I also think he was overtired and overstimulated by all the people and activity. He wanted to go to the water, to the boats, and get away from everyone. So, he and I sat on the pontoon boat at the end of the dock and watched the shore from afar. Adults chatted, children ran and played, a bonfire burned bright. And I sat alone on the boat with my son and felt so isolated and alone.
As it got darker and closer to dinner, I decided to bring Jonathan up to the house and endure the tantrum. Jonathan has a bit of the drama-king in him. He can throw himself down on the floor with the best of them. I have found that the best response in no response. Sit him down and let him rage... ignore and it will abate over time. Alas, the old ladies in the room (of which there were four) felt a need to try and 'fix' the situation. Advice whirled past me. Firmly, I said no... let him be... and thankfully my mom backed me up! So there I sat exhausted, my non-verbal tantruming two and a half year old son on the floor next to me.
I am used to being around other children of the same age as Jonathan who are developing typically. It is to be expected, and although it often brings GEMM out of the shadows, it doesn't generally fire her up. Rather, it comes into focus how behind Jonathan is, and a certain amount of despair fills my heart. But I have gotten better at pushing that aside and going on with the hope that someday those differences won't be as stark.
This evening was no different. Two other toddlers roamed around the cabin, one six months younger than Jonathan and one six months older. Both perfectly verbal and playing appropriately. They offered him toys and snacks (at their grandmas' urging), all of which we rejected with a whine and a flop by Jonathan.
One of these grandmas... a family friend of old who is not really known for her sensitivity and tack... was able to rouse GEMM to a full fury. As Jonathan lay on the floor, unengaged and acting so terribly 'autistic-like', this grandma called to her granddaughter and said "Hey Susie*, tell Pia 'I love you'."
And she piped up in this sweet little voice, "I luv you".
This 'old friend' laughed and said "Isn't that the sweetest thing you have every heard?".
And I think every organ in my body stopped.
It wasn't that Susie said it. She is very verbal. It is that her grandma... this 'friend'... prompted her to do it. To me. When my own son might not ever be able to say it, who was currently laying at my feet and moaning. It felt like a slap. It felt a deliberate 'na-na-ne-na-na'. Even GEMM was stunned. My escape couldn't be fast enough. I regrouped enough to make our excuses and bale. And as soon as I hit our car GEMM came out, crashing through my body and soul. There are no words to explain.
Later my mother said that she was sorry... that this 'friend' is flighty and non-sensibly and doesn't think. All true. But cruelty is still cruelty, even if unintentional. I have a 1000 things I wish I would have said... have done... to respond. I wish I had let GEMM out to do some damage... to inflict a little of the pain I felt. I didn't and I won't. Instead it will nest in me... and I fear what might grow.
*Susie is the name I have chosen for all cute kids who are supposedly better than the J-Man. If your name is actually Susie, please do not be offended.