Social Skills Programs, Community Programs, and Camps… Oh, my!!

This list started off as only one resource, and then it grew out of control… How fun!!

For those living in the Seattle area, I recently read about this program:

PEERS - Program for the Education and Enrichment of Relational Skills; A teen friendship-making program.

This program offers social skills intervention for motivated teens in the 7th-12th grade who are interested in learning ways to help them make and keep friends. During each group session teens are taught important social skills and are given the opportunity to practice these skills in session during real play activities (e.g. playing sports, board games, etc.). Parents are taught how to assist their teens in making and keeping friends by providing feedback through coaching during weekly socialization homework assignments. Regular attendance is imperative and parent participation is required.

More about the success of the program here.

For those in Massachusetts: A friend gave me the heads up for this program. Massachusetts General Hospital is offering workshops and social skills groups for your child with autism. There is a summer social skills program, offered in Wellesley, and will run for 2 weeks, three different sessions, 9:30-12:30. There’s also an after school program being offered. Check out the program and rates here. http://www2.massgeneral.org/youthcare/social_club.html#location

I would love to have Nick attend this social skills class (it sounds great) but Wellesley would be a difficult commute for us this early in the morning.

Also in Massachusetts: Community Autism Resources is a wonderful program dedicated to helping and teaching children with autism through community programs. I have participated in several programs offered through CAR in the past years, and plan to again, for family time at Wellsprings Farms, while Meghan is home for spring break….Check out the calendar for spring here…. CAR also offers other links to programs such as, social skills groups, IEP help and Circle of Friends …

Summer camps: For those living in southeastern Massachusetts, Hanikids have great programs for all ages and special needs.

I asked Nick what he wanted to do this summer: handikids camp or sailing at the Duxbury Maritime, and he chose sailing. If anyone is in the Duxbury area this summer, here is the link.

Check out camps for kids—day/overnight for all kids—in your area.

For Everyone: Model Me Kids social skills training DVDs.

HELP: If you know of other social skills programs in your area that seem interesting, please let us know in the comments, or email me and I will let the word out…

Suggestion: my local Arc (Plymouth, MA) also offers social skills groups on an ongoing basis. Check out your local area Arc for groups and let us know at Fearless Females.

Note: all of these resources are also provided in the Resources links of this website...

Weekend Review

Unfortunately we didn’t have the best weekend with Meghan while she was home this past weekend. She wouldn’t go out with us very easily. We went to an art exhibit in our town that featured one of Nick’s paintings (more about that on my next post), but then that was all she was willing to do. We wanted to walk around Main St, Plymouth and check out some of the shops, just minus the antique shops with lots and lots of old and expensive glassware—Meghan has motor-spatial issues and she and glassware do NOT get along!! (Um, you may want to use you overactive imagination for just a few minutes now, and then do your quick little laugh, thing!! Don’t worry; I do it all the time!) However, she redirected me back to the car and didn’t want to take that walk …

Then we drove by a favorite casual place for dinner (for barbecue and ribs, oh yum!!) And I could just taste the pinot noir that would be waiting for me and calling out to me… come, come and drink me!! But then we "unanimously" realized that the noise and the seating would not work out for Meghan (sensory issues). In fact, if we happened to be at a restaurant that seemed loud and visually overwhelming for her (like TGIFs), then she would not do well, e.g., bite her hand in frustration, not focus, fidget and need to use the bathroom—a lot, and all of these are the fine makings of one huge temper tantrum—that means a smashed up table and coke on our laps (and one mom (me) sucking down some major wine!!)

So we drove along (very quickly) after imagining the “could be” scene at that one place… And, again, usage of your overactive imagination will work fine here, too!! And, so, we drove down the street to the beach. It was a nice day so we decided to take a walk, climb the rocks (our beaches are super rocky) and listen to the rolling ocean and the seagulls squawk….Ahhh, peeeeeace….

But, not really!! You see Meghan didn’t want to walk on the sand. A new sensory issue? Not sure. But this wasn’t the first time she refused to do what used to be a Meghan-all-time-favorite. Sigh!

So we continued to search for a restaurant that she wouldn’t reject, and after 30 minutes and continuous hand sign rejections (um, sign language that does not involve a finger—thank you very much!!) we drove home—humbled, confused, frustrated and hungry. We ordered in pizza and pasta, and Meghan ate the pasta.

Since Meghan has been living at school, we almost forgot how tough just going out can actually be with her. I’ve become very spoiled!! I've forgotten how everything used to be planned and plotted, questioned and imagined… and not without great tension! Nothing was taken for granted, and usually one of us (me) would have been on “alert status” at all times. Tough going!

Consider my new issue: Meghan loves to go sledding so I thought that we would take her to the mountains where there is tubing—I mean she’s doing so well at school and will kind of tolerate more outings…. So here’s the thing: since the snow has melted where we live, I thought that we could take her to the mountains in western Mass. or N.H and go tubing. But, what I’m worried about is that she might not get on the lift, or worse--panic, or that she simply won’t get out of the car after driving all the way there. And then we’ll have to consider food choices and restaurants that she may or may not eat at…. And if you have an imagination and a keen understanding of sensory issues, then the list goes on and on… Should I just forget it or try it? I really want to do more with Meghan, and have the type of fun that I know we can have as a family. I mean--it’s about time, isn’t it!?

But then again, my imagination always precedes me.

And I can’t even tell you how guilty I’m already feeling about going off to Disney World in a couple of weeks--without Meghan. We have never gone on vacation without her before, but for this trip—and to crowded and overwhelming Disney, we wanted Nick to have a real vacation with his parents and his two cousins who are also coming along. A little time for--just Nick--because he’s been so patient with his sister, and has lost out on a lot!!

Oh, the trials of raising two kids with different issues!! I’m sure most of you can relate!?

Nick and his cousins who will soon be enjoying time together at Disney!!

Chicken Fingers and Mac and Cheese

One of the biggest problems that we’re currently having with Meghan at home, and at school, is her need for consistency. I know, I know, kids with autism need to have a consistent schedule, however, Meghan also wants her food to be consistent, as well.

Lately, her only SIBs (self-injurious behaviors) have been around food selection. Meghan loves to cook, so she chooses to help with dinner preparation at her house. However, she wants to cook the same meal over and over again every single night—chicken fingers and mac and cheese. (Ohhh, I know--ideal comfort foods, how can you blame her!??)

But it just can’t be; it’s not healthy to eat the same food over and over again, especially chicken fingers and mac and cheese. I’m not sure why this is happening; she was never like this before—needing to eat the same foods over and over again. I’m guessing it could be one of two things:

When she comes home (every other weekend) she likes to make Chicken Cordon Bleu (chicken filled with ham and cheese) so we make it with her since she likes to cook. It’s funny too, because every time I make this with her I’m reminded of something Nick said a few years back, when we first started making Chicken Cordon Bleu. He said: “Uh, no Mom, it’s not Cordon Bleu, it’s Cordon Yellow” (we use yellow cheese) —like duh, what’s wrong with you, Mom!! It’s funny—sometimes Nick thinks he’s so right and the world around him is sooo wrong!!

So perhaps Meghan feels it’s like a little piece of home life at school? Could she be that nostalgic? Or it could be that chicken fingers (breaded strips of chicken) is the only thing she knows how to make (and likes to make) so she, and everyone else at her house, will just have to eat it Every. Single. Night. And for the rest of their life, too... Damn it! (Some restaurant she’s gonna own someday: “Meghan’s house of chicken fingers and mac and cheese—don’t you dare ask for anything else…” Come to think of it, it just might be a winner!!)

So I’m wondering if I should stop with the chicken when she comes home? But I’m not sure we can, since she looks forward to it so much!?

The Special Needs or the A-Word Discussion

My son, Nick, takes everything so literally. It started with his teeth brushing. I have always told him that if he doesn’t brush his teeth that they will rot out of his head—true, true! So issue number 1 is how long should he spend brushing his teeth—literally. He will then come to me and show me his teeth and ask if they’re clean—and since I know that he had been in the bathroom for what seemed like forever just scrubbing away, then I know that they’re clean.

He is like this with almost everything. It’s either a lack of confidence, or his OCD. Or maybe a little bit of both. I’ve been thinking lately that it is probably because he is becoming more aware of himself and of his surroundings at school and the other kids. Which is good, but it also brings up the why am I in a special needs class issue.

I’ve never actually had the full discussion with him about his special needs. As far as he’s concerned, he doesn’t have any real issues. I have NOT told him that he has what is considered “special needs” or that he is suspected of having autism. He wouldn’t believe me if I told him, anyway. Put it this way, if I said to him that we think that he has mild autism, then he would probably follow with: What! You think there’s something wrong with me!? He sees autism as a disorder only like his sister, Meghan, has—a severely impaired person who has trouble understanding and cannot talk. I just didn’t want to put a label on him or have him feel that he was different.

But recently he has asked me about a girl in his special needs class. He asked me why everyone was so nice her. I knew that it was his way of asking me more about her. I told him that she has Down's syndrome. I then told him what that was in terms that he could understand. I also mentioned another boy that he knows who also has Down syndrome. Then I brought up the name of another boy that he knows, he is older and in the high school that Nick will be attending next year. I told him that this boy has a type of autism called Asperger’s. I told him about these kids—all in one breath—because he had asked (in his way) and I felt that it was time. And he was just amazed. I could tell that the wheels were turning and he was starting to see people in another light.

I have now come to believe that he is thinking more readily about why he’s in a special needs class. Again, we do not talk heavily about the subject. I have always said to him that all kids learn differently and some kids just need extra help--and left it at that. So he has always referred to this classroom as the classroom with the special helpers.

Recently I’ve told him that I, too, was sent to a special class. Once for lisping, and that I needed speech therapy, and then a year later—4th grade—I was daydreaming in class so I was pulled out for "needing to learn to concentrate better"—whatever that meant!?

But what was even more impressive to him, was that his cousins: one older and one his age, and both of whom he likes to talk about and looks up to, also go to special classes. I told him they have a disorder called Dyslexia and cannot read well. Again, I described it as someone whose brain works differently.

Well wouldn’t you know that he had the biggest smile on his face, as if he was thinking that everyone needs special help to some degree and at some point in time. Which is true!

I guess we really did need to have this discussion!

What about you? What do you tell your special needs kids about their special needs?
And do you agree with how I handle this issue with my son?

Not In The Mood For This Right Now ...

I don’t care if he’s a celebrity and a do-gooder for the charities that he does believe in or worse, just wants to sell his book, but he really needs to shut up. I liked this article in the Boston Herald, it’s about a Massachusetts mom, who has an autistic son, taking on Denis Leary (about his latest autism comments) and wanting him to walk a day in her shoes—hey, mine too, why not! (over 50 comments to this article)

I’m usually open to listening to others' opinions and even playing devil’s advocate, but, today, I'm just so sick of listening to uneducated, ignorant opinions about diagnosing autism. Couldn’t Leary learn from the Michael Savage fiasco?

Unless you’re a closet Neurological Psychologist, Leary, then shut the f… up—celebrity or not! And if this is what it takes to sell your book, then you're pathetic!!

Does anyone not agree?

The articles in the Herald:
http://www.bostonherald.com/news/regional/view.bg?articleid=1128012

http://www.bostonherald.com/entertainment/lifestyle/view.bg?articleid=1126755

My Son's (Un) Just Beginnings

I’ve written about the day of my daughter’s diagnosis, so I thought it was only fitting to continue with the day of my son’s diagnosis, if you can bear it, because it was a bit different. It was just 6 months after my daughter’s autism diagnosis and one year after a speech therapist diagnosed him with PDD (Pervasive Developmental Delay) and the recommendation was: get him into a preschool program to develop his speech. Which we did by the age of 3; he was kicked out by 3.5. Oh, Boy!!!

Just shortly before his 4th birthday we had him evaluated at Children’s Hospital by a different group of doctors than we had for Meghan: pediatric pediatricians and psychologists. His diagnosis was grim, as far as I was concerned: MR (Mental Retardation).

As one can imagine, this diagnosis did not sit well with us, especially me. It was not the fact that he was diagnosed with a disorder, but PDD was what I was thinking. A much milder form of autism, but one that I could put my finger around and have it actually make sense for him. I think MR is just a label with no sense of recovery. Meaning that autism has therapies and hope, but, to me, MR sounded cold, hopeless, and hollow, like there’s nothing you can do—just love your boy, was really how we were treated. I just couldn’t understand what this diagnosis really meant, so I asked:

Me: “Does this mean that he can’t learn?”
Them: “No, of course he can learn.”
Me: “What do people with this diagnosis do for work?”
Them: “Well, a lot of ‘them’ work in wonderful places, like even here at the hospital.”
Me: “Like what, take out the trash?” (I was being sarcastic)
Them: “Yes, exactly, they mop the floor and take out the trash.” (she said, enthusiastically!)
Me: I felt physically sick “Can he learn math? Science? Reading?”
Them: “Yes.”
Me: “Algebra?”
Them: “Yes, of course.” (nervous laugh)
Me: “Then why??”

As if they had slapped me in the face and continued to punch me with every nervous word that was shaped and delivered while we sat gasping for air.

And given a box of Kleenex … but no hope.

I wasn’t giving them a hard time, I was just trying to figure it all out and, Yes, I was defensive. How can anyone label my son with no hope and a future no better than a trash man? (There’s nothing wrong with that profession, mind you, but I wanted my 4 years old to receive the benefit of the doubt and be presented with the same options that every other preschooler was given.) It was as if he was tried and convicted of a dismal future and he was only 4 years old. I wanted people to have higher expectations for him because we believed in him and this “label” just didn’t present us with any options, just a dead end and the color of gray.

Autism seemed to have hope at least, and proactive solutions: There were books and an entire therapy revolved around it (ABA), not to mention speech and language therapy; it was a process of learning and of recovery. It offered Hope.

I never went back to that hospital (as if it were their fault), and during the days following this diagnosis I told his special needs preschool teachers, speech therapist, pediatrician, friends and family what his diagnosis revealed. What I got was a pause and a “NO.” Not just a No, but a Nooo! “No, he’s not,” said every single one of them. Interesting. Our pediatrician even added, “No, he’s too smart, and I see it in the way he plays, it’s PDD, you’ll see, he’ll start to develop better language and even out,” he said.

Over the next 10 years and a few different pediatricians, lots of teachers, and one psychologist later, have all labeled Nick with a mild form of autism and we stuck with it. It makes sense for him based on what we’ve seen and how he tests; and the therapies work for him, like speech, OT, and social skills classes and have helped him develop, progress and see color, not gray.

The Bully Factor

I was visiting another blog and one that I like very much called Teen Autism and she talked about a topic that sent me back many years ago. It’s about bullies and that this mom has to homeschool her autistic son because of the unrelenting bullying at school. I commented that, thankfully, I don’t have that going on with my son, but I certainly had with my younger brother when we were kids. He has ADD/ADHD but we didn’t know it back then (1970s-1980s); instead it seemed to be a learning disability and a bit of quirky behavior; but he just couldn’t catch a break with his fellow peers. Some of the boys in the neighborhood would be so mean and violent, too. I remember kids would make slingshots and my brother was always the human target. Sure, they wouldn’t be mean to him while I was around, but I couldn’t always be around. They would steal his bike and toss it in the woods; throw things at him in passing; and yell and jeer at him.

One day my parents had the presence of mind to send him to a psychologist, but they weren’t happy about it. I think the school psychologist suggested it, so they thought it would be best to take him. I think that my parents wanted everything to just stay simple and be okay. Then one day I was asked (perhaps told) to be the guest visitor and speaker. On that day, the psychologist asked me about my brother and what I thought about the bullying. I was in the room with both my parents and my brother and felt like I was some specimen sitting there under a microscope being examined by all. The psychologist told me that my brother thought that he embarrassed me most of the time. How dreadful. I remember that I tried to play it cool, and that I didn’t want my emotions to show. I told him that it wasn’t a big deal to me that he was teased. I lied. But I didn’t want to tell the psychologist, my brother and my parents, for that matter, that I felt bad for him (and for me) that I had to witness kids mocking him behind his back. I didn’t want to tell them that I remembered the day that my brother rode his bike to McDonalds to get us both a burger and fries, and that he came back with barely anything left in his bag because the bullies got him. That I wanted to run to my room and cry my eyes out because this poor kid couldn’t even take a bike ride without being on some bully’s radar. Did he cry or complain? No. He just accepted it as if it were a mere fact of life. He told me, most matter-of-factly, that “they were after me and I couldn’t make it home with the full bag” of goodies.

I don’t know exactly when it ended. If the inauguration into manhood thwarted the bullies and that they had just found something better to do like “date” and “girls.” I think girls had something to do with it. In high school I had good friends and when my brother became a freshman, the rules changed. My brother became off limits in respect, perhaps, to his older sister: trust me, there were comments. But one of the most interesting days was when my brother’s number one adversary (if not the leader of the bullying pack himself) offered to walk with my brother, as a friend, the half mile from the school bus stop to home and, from what I understood, they had a nice greeting, shared some good peer conversation and ended on this high note: “By the way, tell your sister that I like her.” Who had the power now, baby!! ;)

“The Moment Right Before” Poem

This was one of my first poems and it is about my many trips to the park with my kids. Autism, more than 10 years ago, was one of those disorders few people really knew anything about; it wasn't as prevalent and talked about as it is now. From first appearances my kids looked like every other kid until they got a closer view of my daughter (who has severe autism) and then ...


“The Moment Right Before”

It’s the moment right before
And after I see them coming
With their big, white smiles flashing my way
And I get that feeling—ache, that’s hard to describe
And it starts with the pleasant conversation:
The trees, the weather, the park.

It’s the moment right before
And it’s a feeling I like to flirt with
For at least a moment or two
But I feel I have not right—like a minority or a hidden plague
But it feels so nice and feels so natural
The way it is meant to be.

It’s the moment right before
I can predict when to tell them
Before they realize on their own
That she’s a little different—a bit off
And save us all from their little excuses
To travel to the other end of the park.

It’s the moment right before
They can become so bold
And redirect their child from mine
By quickly brushing them away
Like a broom sweeping
As if I wouldn’t notice.

It’s the moment right before
A potential friendship dies before it can start.
It’s sad to feel this way, but also learned
From others park moms who don’t understand
About autism. Because she looks just fine—normal
As if my own reflection smiling back at me.

It’s the moment right before
People are drawn to us—like magnets
And I want to repel, before they do
Play the role that I’m the snob
And have no interest in YOU
But I do; boy, do I do.

It’s the moment right before
The color is drained from my face
As if I’ve been murdered and left for dead
To stand motionless
Like rigor mortis
And silent, too.

It the moment right before
It all seems so heartless
But it’s real and today
In a world left too busy
With no time for difficult friends
So I do understand.

It’s the moment right before
They’ll need a quick fix
And a compatible one, too,
But it still hurts
Because there are no quick fixes here
Just the moment right before.

The Different Faces of Autism

One mom, who calls herself an autism advocate, mentioned that she feels lucky even though she has a daughter with (mild) autism. She counts her blessings everyday because she has two wonderful, beautiful kids. Her autistic daughter does have challenges but she is verbal and can speak and articulate her feelings, and meltdowns are few and far between. She attends a typical classroom and is doing just fine, at least at the moment. This mom believes that her life with autism is tough, but she is standing tougher in her fight against autism and will not allow autism to define her daughter. This mom fights to educate and advocate for her child so that there is acceptance in the classroom and in society. She is considered a conqueror; a positive thinker; a survivor; and is highly regarded by her peers. The golden key here is that she knows that her daughter could have success, and she prays for it everyday. She does feel lucky and will stand up strong to autism.

This mom is also very outgoing and has lots of friends because autism doesn’t hold them back. Again, autism doesn’t have to define their family, at least most of the time.

This mom goes to birthday parties; goes on vacations, but notes that her daughter doesn’t always play well or even played with by her peers, and it breaks this mom’s heart.

Life would be perfect if only her daughter could better her life.


There is another mom who also calls herself an autism advocate. Her beautiful daughter has (severe) autism and is non-verbal and cannot articulate her feelings, therefore, attends a restricted classroom that includes a time-out room for behavioral meltdowns. Her daughter is prone to having meltdowns and being restrained. She is not capable of going out with her daughter without a behavioral plan in place. For her daughter, the school bus cannot transport her to school without the safety of a bus monitor. Going out in the community is stressful and, in most cases, not successful, but she tries. She, too, is considered a conqueror; a positive thinker; a survivor; and is highly regarded by her peers. She does not want her daughter to be defined by her autism, but it can’t be helped no matter how much she tries. The very least of her daughter’s problems is having her make friends; instead, she would just like to get through the day with a lesson learned and a smiling face, and prays for it everyday. She does not feel so lucky and feels guilty because of it. She tries hard everyday to stand up to autism, but gets defeated most of the time—autism for her is just too tough.

This mom also has an outgoing personality but doesn’t make friends very easily, autism defines her daughter just that much that it becomes hard to make and keep friends.

This mom does not go to birthday parties, because she is not invited; would go on vacation but it's very stressful rather than relaxing, so it's avoided at all cost. Her daughter can’t play well with other kids, ever, and this fact is a long running heartbreak, among other things.

Life would be perfect if only her daughter could have a life.

A Meghan Update... her residential school progress

A Meghan update:

We saw her last week, as we do every week. And she looked great! She just has this content way about her; she’s comfortable with herself and her life. I’m so grateful. Not just for what the school and teachers do, and do for every child who is welcomed through their doors, but I’m so grateful that there was a solution for Meghan and we had finally found it. Albeit, a harder solution for us, her parents, but we can't be selfish—we didn’t have kids to be selfish and hold them back from thriving—we had kids to help them blossom and grow—and then send them off to find their own life. Even if it doesn’t sit too well for two parents who will love her more than anyone else in this world.

So, Meghan seems content and at peace, that’s what it seems to us. (Does she still need me?) An observation by two people who only see her once a week, but that's almost a better thing: two virtual outsiders (as strange as that sounds) can see through the glare and see what’s really there by not seeing her everyday.

It won’t be like this forever, she will start coming home every other weekend and hopefully it will be a success. I would hate to think that we could screw this up and wreck her progress or her continuity—and that she doesn’t mind commuting the 1.5 hour trip, each way, twice a month, which I think is a good schedule for all of us.

It’s definitely a step-by-step process and we take it one day at a time… and, demonstrably, that is just what we have to do.

One of her favorite thing to do at the (her) house is swinging on the tire swing; she swings high and wide. She also loves her schoolwork and does it for a free time activity, even; she is also using all of her communication books effectively and appropriately (she has two books jammed packed with nouns, verbs, and adjectives, and one communication output device).

She started her swimming classes, for those of you who are not familiar with her school, there is a huge Olympic style pool designed specifically with special needs kids in mind. She loves it. She swims twice a week. And the treadmill, too! Who would have thought that she loves the treadmill? She's on it every chance she can get at the schools gym and house. (She never liked it at home!!) Just more proof that she is coming into her own!

More and more that I think about it, this school is a luxury—one would gather that from its hefty price tag—and at this price—I would expect a hot tub, sauna, and cabana boy ;) but these girl are only 13, so luxury for them entails: an environment of several trained teachers at their disposal for help , guidance, and activities … it’s like having a bunch of moms (or big sisters) who are guaranteed to never get over-tired or frustrated and there’s always at least one mom who will like a particular activity at any given time. Some of the “moms” are good cooks; others like to shop; and some others are just plain playful—how ideal! Who needs just one mom, when you can have a house full of moms.

"The Storm After the Diagnoses" Poem

As some of you know I did a lot of poetry writing when my kids were younger (3 and 4)--and while I was going through the emotional roller coaster of understanding and adjusting to my kids' (who are just a year apart) diagnoses (which came at me back-to-back)--my daughter is severely autistic and my son was diagnosed as pervasive developmental delay (MR) which we know now is mild autism (aspergers). This was one of the poems (or prose) that I wrote when my world had just collapsed all around me and I was making my way without much help ... It's about our previous school system and realizing that people are just people no matter what your circumstances (or life) might be. Teachers are trained to teach our children of special needs but are not trained to deal with parents of children with special needs.

"The Storm After the Diagnoses"

When you feel like you’ve just hit bottom.
When you think it couldn’t get any worse—it does.
My daughter needed more services, and I needed more help.
My son was just newly diagnosed with a disorder
That I still couldn’t digest
So I called her school’s director for help, but got no answer.
I waited for word, and got no response.
I yielded when I should have charged;
I could take no more.
My emotions were riding high
Building like a turbulent storm;
Turning the once blue skies dark; the calm ocean fierce.
I drove to the school, opened their doors
And sailed in on my tumultuous wind.
I demand help. I demand services. I demand blue skies!
The teacher: the one with the bad reputation
Was the one I spoke with and she was not sympathetic
But rather quick and dismissive. Was I rude?
I was inquiring about her boss’s whereabouts
And desperately seeking a meeting
But she didn’t seem to care
“She’ll call, she'll call”
Was all I got in a brushing-me-off kind of way,
As if I were a nuisance like a bill collector
And was appeasing me with “It’s in the mail.”
She knew about my son’s new diagnosis
And my daughter’s new problem
But did she offer to help or understand—No!
Maddeningly enough, she barely maintained eye contact
As if she had better things to do.
I grew angrier and angrier by the minute
And wasn’t about to go away without a final word for the director
And an attention grabber for an unresponsive teacher.

“Pathetic Witch” printed in neon as bright as sun
Atop my daughters IEP for all to see.
(Funny how the teacher actually got it wrong
“Cold-hearted Witch” was what I actually called her.)
Nevertheless, small lettering of ugly words
Have a powerful way of magnifying and glow
Like a big, yellow caution sign flashing brightly in my face.
The round table struggled not to laugh
And I could barely speak.
A trust between parent and teacher had gone bad.
An agreement of confidence was broken.
An emotion of dread was unanalyzed. Or was it?
I had realized at that moment that business was business
Not matter the business and delicate circumstance.
Gossip stops nowhere especially when an unsatisfactory
Reputation warrants an extra brownie point.

She sold me out; fed me to the dogs;
Led me upstream; hung me out to dry.
Look out for number one—isn’t that the philosophy?
The ugly surfaced; the nasty prevailed;
The Cold-Hearted Witch was living up to her new name.
Institutionalize was her word of the day.
DSS was also thrown my way.
Mouths hung open. Eyes glared. Solemn mood.
Silenced lingered for what seemed like an eternity
As shock waves settled in the thick of the minute
Was this a war or a child plight? I wasn’t sure?
But pay back seemed to be in store!

Lesson number one:
Remember the rules; remember the politics; remember the game.
No matter what wrong was committed; no matter whose fault it was;
No matter what feelings were exchanged, always:
Kiss up; suck up; play the political game and be friends
No matter how much you cringe
Because you will be rewarded--your child will be serviced.

Aah, Reaping the Benefits of Good Communication ... Finally!

Ever notice that good, quality communication is lacking in almost everything we do and who we know: How many can raise their mouse and say they have the benefit of living and working with good communicators? Come on… no passive aggressive husbands, boyfriends, parents, siblings, bosses (Ugh, that’s worse!) to vent about? And lets not mention school districts and special education programs of various sorts … oh, won’t go there (that's another blog). But let’s face it, it’s everywhere … and it’s called dysfunction—and we all live with it and probably have trouble living without it; except:

Meghan’s school is right on the functional communication track—that’s right—I said functional!! And, thank God for that! Because I still feel like I’ve just dumped her off somewhere and said: Ha, this is hell now you raise her. “You” meaning a crew of people: Classroom teachers (and plenty of them) residential teachers, residential caregivers, nurses, doctors, specialists … you name it they’ve got it.

As Hilary Clinton once said: “It takes a village!” And I think she’s right!

Good, effective communication has got to be the hardest thing to achieve when there are so many people “in the village,” but it’s ideal at her school. At the beginning her direct one-on-one school and residential teacher (yes, two different people) would call me everyday to report in. And I would also call the residence too, just because I could! Then it slowed to once a week with a scheduled call from her residential teacher, who we’ve gotten to know very well (personally and professionally) from the calls and our weekly visits—she’s like a house mommy!

She tells me everything that happened during her week—information reported through computer and written documentation so that everyone knows how Meghan did /and is doing on any given day, while also monitoring her progress. I’m never without info …

I’ll even get a call from the lead nurse if Meghan is having a nurse’s visit (routine or unscheduled); a dentist appointment; the eye doctor; the sniffles … they’ll call just to report in and then call again to let me know how it went and how she did (like the dentist’s visit) and without missing a beat.

And as of late, Meghan has advanced to a communication device and is constructing sentences using it--a skill she could not do so easily at her other school and home ... a benefit to her speech and language specialist and classroom teachers, no doubt. Can't wait to meet her OT specialist and adaptive PE teacher ... they'll have her swimming laps like Michael Phelps in no time!! ;)

Again, it takes an effort from everyone--together--to help a (autistic) child succeed! And good communication is the heart of this effort. But this school has got a system that makes it all seem so easy!

Now that’s refreshing! The dysfunctional family that’s isn't!

The Power of Denial

I had a friend who also had a child with special needs. He has mental retardation and I also think autism, but that would be my interpretation. This friend did have her son evaluated by a neurological psychologist but she never shared the outcome.

Instead, she chose to “defend” her son by stating that the doctors were wrong and that there was nothing wrong with him; essentially, choosing the path of denial.

The problem was that she was wasting valuable time by not helping her son with therapies that could effectively work toward helping him actually overcome his disorder, or the mere presence of it.

I found this issue very hard to be her friend: She was always looking at my kids as if they were the ones with the problems and that her son was coming along (more than mine were, which was not true) and that her son would be fine. She would also be very hard on any friend that mentioned that something might be wrong with her son—which was evident; to the point that she would even end that friendship.

She was lying, denying, and putting her friendships at great risk. Her husband, on the other hand, was the levelheaded one and who not only believed that he and his wife needed to be proactive and help their son with necessary therapies and the like…but also wanted to be open with his friends about the truth--which is so important and a healthy thing to do. I felt sorry for him but at the same time I respected him for acknowledging his son’s issues and also wanting to help his wife deal with her suffering. Boy, did he have a full plate!

One of the saddest problems with her denying the truth about her son was that when we were all together, usually at her house, she would be very hard on her son—as if to say, you have to be more than you are…you’re not good enough; and all for appearances.

This is not putting your child’s best interest at work; it’s ruining his chances of a happier life, for him and for the entire family.

As a matter of fact, she was working against the one thing that she wanted most: a recovered child.

Can anyone relate to this common issue of denial, and want to share their thoughts?

More on Denial Here.

Why I Had To Send My Autistic Child Away, and How I Did It:

For all of those readers who are wondering why I had to send my 13-year-old daughter to a residential school, well the reason surfaced one year ago this month. She came after me and attacked me. She was so enraged about her bed sheet not fitting on her bed properly that she almost broke down the door to come after me—and on more than one occasion that particular morning. Thank God my husband was in the house, because even he had trouble controlling her and he is over 6 feet tall.

This type of rage and attacking me didn’t stop that day, it continued at least once a week. One afternoon I was cooking dinner and she came running down the hall in a fit of rage, but I didn’t know it until she had me cornered in the kitchen and all I could do was turn off the burner to the stove so that she wouldn’t burn herself while she was attacking me. She grabbed me by the head and grabbed a fist-full of my hair and pulled as hard as she could, then she grabbed hold of my cheeks and my neck and pinched my skin as hard as she could, and I could see the rage in her eyes… this was not the child that I knew and loved, this was a monster wanting to hurt me…to hurt someone. The ending: Well it was the usual finale to her attacks, she grabbed hold of one of my hands and bit the surface of my hand so hard that it blew up like a balloon.

Of course I was stunned and horrified and I cried, and I cried, and after that day, I could not be alone with her—and I knew it.

Furthermore, I wanted a more fulfilling life for Meghan. I knew that I couldn't travel in the car with her anymore because I would be attacked there, too, and her brother, Nick, too, for that matter. It only took the wrong music on the radio, or Nick’s voice asking me a question to set her off. And while I was driving, too—Yikes! Talk about crazy! Risky! Where the hell is DSS when you want them!

I wanted her to enjoy more out of life, as we all do for our children. And I knew that a residential school was the only option for her to have a more fulfilling life. And let’s face it, she had me over a barrel and she knew it. She was eating anything she wanted, doing anything she wanted, and she was dragging me around the house like a rag doll because I was too afraid to be her mother.

I must mention, too, that I did have in-home help, especially during the year we spent on the waiting list for her school. I had that extra support person for a few hours a day, but it wasn’t enough to truly help Meghan and to maintain a consistency that she needed. And besides, the turnover rate for in-home help was two people a year—at least, and not necessarily the most qualified people.

Step Two: I knew that my husband was NOT on-board.

It took work on my part to help him understand what life was really like for me at home with her and the risk of being attacked. He knew I was getting attached, now more than ever. And he knows that I'm petite (5’2, 110 lbs) and Meghan was (5’5, 160lbs at the age of 12)—I had to put my foot down and tell him that I couldn’t live like this anymore—and wouldn’t. I explained that Meghan deserved a happier and more fulfilling life, and that she couldn’t possibly get it from me…from us, or from her school—for that matter. Yes, she was failing there, too. Teachers and aids were becoming afraid of her as well. Meghan was not happy and she was letting us know.

Visiting residential schools and listening to them (schools that we respected and that had an excellent reputation) was the key to understanding and helping us in making the right decision for Meghan. It soon became clear that she belong to a school that—not only understood her needs—but also could help her live a more productive and fulfilling life—A future.

As some of you know, we chose a school with an excellent reputation with helping and working with children with autism—and this was the only option for us. Even though Meghan was attacking me at home, I would endure a few hair pullings and biting and scratching for peace of mind later… and it took much later, consequently, a year's worth of waiting, but it was well worth it. (I must point out here that she was not attacking Nick—her brother—only me. I think that she knew that by hurting her brother she would be crossing a line. And she would’ve been right!! Intuitiveness on her part that helped her in the end—she’s now at the best school that she'll ever know!)

Today we know that Meghan is doing fine. She's going out into the community. She's learning at school, again. She's happy with her roommates—her friends, and the teachers all like her and they all like each other.

We all like life a little better too!

Residential School: Structure and discipline

It has been one month to this day that Meghan has been living at school: at a residential house a few miles away from her new school. How’s it going? I think Meghan is doing great and most important—she is happy and happier!

We visit her every Saturday (a 3 hour round trip drive). The school and (residential) house components are very structured. But, of course, I knew this already—that was the whole idea in the first place. I just didn’t know how strict (or rigid) the routine and level of discipline enforced at school and house were—until yesterday.

(Incidentally, visiting the house weekly is the best way to see how things really are and to get to know the staff and other students with whom Meghan is sharing her teenage years; as opposed to having her come home right away on the weekends—it’s a great thing to do.)

Back to yesterday, we were outside in the yard playing on the swings and the kids were running under the sprinkler and were wearing their bathing suits. It was fun to watch, but we definitely felt that our presence was preventing Meghan from playing freely with the other kids—as she might have otherwise.

After a while the girls went back into the house and had to change their clothes. I went along to the bedroom as well (because I am a girl) and thought I would help. Well, help, I could not…because Meghan wanted to keep her bathing suit on and put her clothes on over her suit, as she had done before at our house. But that was not the rule—or the way of the land while living at school, and the teacher enforced the change-back into her underwear. Personally, I just had to leave the room and go back downstairs and wait for Meghan with the rest of my family.

Meghan knew that I would let her keep her bathing suit on so she was trying to get me to say yes to wearing her suit—directly opposite to what the teacher was enforcing. Yikes! I guess I’m either a very lenient mother, or this program is pretty strict and super organized.

It certainly makes sense that this level of rigidity (if you will) has to subsist; for autistic kids (and 8 under this residence’s roof), this type of unwavering structure in their daily life is considered a source of comfort and does help kids with autism feel safer and happier, at least for Meghan; and a form of security and control of knowing what to expect in her day—to a tee—via her communication schedule and books. But as a mom, it was hard for me to watch her not get her way—even for such a little thing like wearing her bathing suit under her clothes. I mean I saw that little angel face looking up at me—that one that says: oh, please…and the one that I know and love—so what would you do?

But in retrospection, I am certain that it’s for the best: I remember last summer (and the summers before that, even) when Meghan got used to wearing her suit under her clothes and then had trouble switching back into her underwear when school started; just one of many channels of frustration—for both mother and daughter. So I get it!

Good Therapy

My son sees a therapist with me every month because he is on medication for his anxiety—Luvox, which has worked well for him. The therapy appointments are wonderful and I highly recommend it for any child on the autism spectrum. It’s a place where he can discuss his feelings and mine too (Yeah, I sneak stuff in, too—don’t you know it!!), but it’s also a good exercise in social skills and one-on-one interaction. And, also, since we only see her once a month, we can actually see and monitor Nick’s improvements in communication.

The therapist is someone who has spent her career working with kids and adults on the autism spectrum, so she is very familiar with Nick and his disorder—which is vital to a good patient/therapist relationship, obviously—otherwise, the therapist would probably hang herself due to all of Nick’s narrow-minded interests and perseveration tendencies (Oh, don’t I know it!!). This 60-something year old therapist doesn’t mind talking about superheroes once in a while, but she would like to change the subject and does…to help teach him good communication manners. But Nick’s clever—I’m telling you, because the last time she tried this trick, he found an in: He wanted to talk superheroes (I knew he did—I could tell that he was bursting at the seems to ask her about the latest superhero movie that she saw (or didn’t see) and why, why for the 100th time doesn’t she like Batman and Spiderman??) but she changed the subject to science and then the weather came up and BINGO, Nick’s eyes blew open and the smirk shined through (and I knew he was up to something) and he said I saw lightning the other day! And the therapist was thrilled and asked him to tell her all about lightning, and he said it was like flash---ah, Flash Gordon—that is!! (aka, superhero)

Ugh!! We all laughed.

Aah, it's Sooo good to watch someone else try to do the mothering!

Let's Talk Social Skills

Let’s talk Social Skills…

My son, Nick, has Asperger Syndrome (or mild autism), and as a child with AS, he has a very difficult time in social settings, or better yet, he avoids social situations like the plague. It is actually excruciatingly painful (figuratively speaking) to watch him NOT socialize or run away from a peer who approaches him to say hi. One day we were at our local pond for a swim and a boy from his class called out to him and came running over to say Hi. I was all smiles and thinking: It’s a boy, a real boy coming to talk to him! But Nick practically ran into the woods to avoid a conversation. Arghhh!

I’ve tried two different social skills classes to help him improve his skills, because let's face it, running away from a nice boy who wants to play, is not a boy skilled in social behavior. The latest social skills class was for an entire year and mostly one-on-one learning/coaching from the teacher, something that she felt he needed; the class prior to that one had more kids participating, but Nick didn’t apply any of the skills he learned from either of the two classes to everyday life. Hence, running in the woods when a boy says Hi.

Last year I had him take track (7th grade)—something that I knew he liked, and he did great. I showed up for all of the meets (but he didn’t need me, Yay!) and he enjoyed himself and was happy (enough) and comfortable (enough); however, he didn’t chat with anyone but the coach—and even she had to pry anything out of him.

I’ve talked to him about this issue and I’ve told him that it’s rude not to say hello to someone he knows and who says hello to him, like in the halls at school or at the mall (seen that one too) because that kid would get his feelings hurt. His reply to my attempt to appeal to his “softer side” or conscience was that he would still prefer not to say hello: “It's too hard and I’m too shy, I can’t do it.” He would say.

I know, of course, the reason he avoids talking or making conversation is because he knows that he is not talented in this area. But practice, we do…when we have people over for dinner or other social events, we do encourage the kids to sit with the adults and have them listen and participate, and by having guests and outside family members encourage Nick to participate (in a fun and humorous way) usually does the trick; he eventually opens up.

So I’m hoping that he will outgrow this “shy stage” during the next few years, like other things he has outgrown—like hugging his mom, for one.

Learn more about Asperger Syndrome (AS) Here.

Does anyone relate to this problem and can offer some advice?

An Ode to the Perfect/Not so Perfect Child

Oh, the sad stories we hear and tell:

This story was reported via the Telegraph (here), which conveyed that show business is just that: show business. The cute little girl who sang at the Olympics and who has gained world attention was just a prop: a cuter alternative to the real singer--whose only wrongdoing was her appearance of buck teeth.

Please tell me how this poor 7 year old (Yang Peiyi) is supposed to feel about herself? That she’s—what?—not good enough…even though she won the “grueling” competition to sing at the Olympics, and did sing, but she just couldn’t show her face or be recognized for her talent—until now, also reported in the Washington Post (here).

This is no different than what most parents of autistic/asperger children have to face and advocate for the rights of their child to participate with their typical peers. The brutal “not good enough to participate” in a typical classroom, school playground, school field trip, band... is what our kids are understanding and recognizing—no wonder why my kids are so shy.

Tell me, how many ASD kids “learn” to feel inadequate from the start? If you’ve seen what I’ve seen through the years, then the answer to that question is: every single one of them.

School administrators or directors would just look at me and nod:
“Yes Mrs. Collins, she is participating with her typical peers” (cue, fake smile)

Or

“Why, why do you want Meghan to be integrated with her typical peers, Mrs. Collins? "
(I think the ignorant school principal asked me that one.)

"Well, why do you think you f…-up!! " (No, I didn’t actually say that, but thought it though, while reuniting my lower jaw with the upper...)

Arghhh!

Yes, I’ve learned to get along with all of them: teachers, principals, school officials...and, let’s just say that it doesn’t hurt to send an informative (OK, nasty) letter to the school superintendent to make sure things stay—how do you say— “within our children's civil rights…”

But sport your big smile and muddle through to the next inevitable battle with the ignorant...

The Nonverbal Child

One of the biggest challenges that I’ve faced with Meghan, as opposed to Nick, was that she is nonverbal (here). I've tried and tried to get her to say words—and she would try and maybe say one word, but it was just too tough for her; some verbal approximations and nonverbal gestures are about all she had/has for communication skills, besides—tantrums, screams, pulling hair and biting—ouch!

We use(d) (PECS) communication books and augmentative communication devices (here) —3— to be exact. The only problem with the devices (electronic output) were that they were prone to breaking or malfunction (hence, "3"), especially if…um, the child is a little rough with it—like flinging it across the room—uh-huh!

Most of her tantrums were, of course, due to frustration; not being understood would send anyone over the edge—and I think Meghan was just better at it than most! I do remember when she was 3 and 4—and one of her favorite movies was Charlotte’s Web. I remember seeing her smile when the farm animals were talking and singing. I would sit back and watch her and wondered what she was thinking: huh, the farm animals can talk but I can’t?

How articulate that pig;
what a vocab the goose;
even the goslings repartee
—how hilarious?

Communication Disorder--this is the diagnosis--social inept. The component that make us come together: dismantled, impaired, incurable. The need still holds true for her, nonetheless: acceptance, friendships, relationships; camaraderie, closeness, love. We all need it, even the love incapable. I have always wondered who will rescue her for this right and save her from the lonely damage, other than her mother, father or brother? The promises come from and for her brother already. He has the personality—the skills to rescue himself; he will make it through the lonesome scare.

I wonder if her thumb will always be there?

I can only think that she enjoys communication of all sorts; I believe she gets the idea and that she understands a good deal of what is said to her. Does she think that she’s just an exception? I don’t know.

But she is trying to talk and I know that she is proud of herself when “out pops” a word that everyone can understand—she becomes giddy! But she’s coming along…there’s no time-table here; it’s a slow process from some autistic children and if she’s learning to be patient--very patient, then we must learn to be too.

More on apraxia of speech Here.

"Autism on a Bad Day" Poem

“Autism on a Bad Day’

The boiling point, melt down, crying fits,
Fist punches, hair pulling, I’d be lucky to come out clean,
Without the beating red. It sounds dysfunctional, perhaps it is.

A part of the brain that doesn’t work quite right.
A wiring that went wrong, if you will. Doctors,
Researchers, Scientists still can’t explain it, so how can I.

I pray that a melt down happens at home
Or while she’s at school—with the well equipped—
Teachers who can handle it, without the tears.

I lift weights, I need to, because in public, and she melts downs,
I must use all my power—my might, keep my cool, say a quiet
Prayer, while heaving the 40+ pounds of fighting, dead weight.

Her legs in the air, 90-degree angle (no angel), pushing against
My crotch, ripping her clothes off, finger nails digging,
Be lucky if she doesn’t bite—no easy feat being 100 pounds petite.

I just do it! People wonder how, praising me endlessly,
As if autism were my choice. And it scares because I forget
Just how much harder I have it. Ignorance is bliss, don’t forget it!

I look around to see, when I choose to see
A typical child and it catches up with me—and it’s hard.
But I must bring myself back to my world and just do it!

“We can do it” an old tin reproduction of a woman demonstrating
A muscle hangs on my kitchen wall, depicting wartime; my
war too--just different--and a reminder when it gets too tough.