The End of A Journey, Son's Aging Out - A Future Fading Away

The End of A Journey, Son's Aging Out - A Future Fading Away

As I walked into summer school with Nick this morning I was hit by a wave of grief, and I didn't know what it was, or why, or where it came from.  I froze, held back tears and struggled to get my balance. I took a deep breath, and then I got it. I was face to face with the end of a journey. Next year Nick will be a senior and all that we have known; in the way of structure, things to do, support and plans based on the possibility of the future, the gift of the unknown will be gone. The future we fought so hard to make as bright and potential filled as possible, is here, and for all of our accomplishments and hard work, my kiddo has arrived at this place, still fully dependent on others and I'm so sad. 

Nick will be a senior, but he won't really graduate, because he's on diploma track. He'll stay in school somewhere for a few more years, but only because there are no options.  If I can't find a better choice for him, he'll be the 20, 21 and 22 year old on a HS campus, the special ed kid who's stuck, the school mascot who stayed behind after the party was over and the image makes me sad.  

Please know I am so grateful he will still have somewhere to go, that he has options, but I am also sad.  At this moment I feel like confirmation that a little dream (hope, prayer or denial) I had deep inside that he would have more, unexpectedly just up and died today! 

I know I have to find another dream, another perspective and I'll get my wind back. Just had to share, to be heard, because I know so many of you appreciate my positivity and a few have asked if I ever just loose it?  The answer is yes, I do. Today I did.  I'll pick myself up, and I'll be good until the next time, the next wave, the next visit with the grief that keeps on giving. 

Week 11 - Lessons from Nick.

If you think about, or just look around, you see that everyone could have a diagnosis of something...or many things! 

Nick is my reminder that we are all more alike than we are different. It helps to remember that.

The Best Thanksgiving Post Ever! When your life changes in an instant, who will you be.

This young man's attitude of gratitude puts life in perspective!

Pictures of  his motorcycle from the Police Report

A dear friend who's family had one heck of a year, shared her son's  Facebook post with me and I had to share it with all of you. It's not just any post, it's a must read inspirational post written by a courageous young man, Xander. Xanders life was changed last year in a motorcycle accident.

 

In Xander's words....

On Election Day

“It’s been a beastly year.” Every time I go to the doctor, they ask me if I'm depressed. I kinda laugh and say "no" and think to myself, why would I be? Then I think why am I not? I lost everything I care about.  Skating, snowboarding, my jobs, my girl friend. I lost my life, so why am I not sad?  Before the accident, I got to work in my dream store, I got paid to hang out with models in hot tubs and take their pictures, I learned how to tre flip, I got to skate the Berrics, I skated the marathon! I got to ride Mammoth when they were hit with 18 feet of powder, I got to drive a convertible r8. I turned 12! When I was 7 I thought 12 year old's were old as x*%!!. I bought a car, I bought a Mac, I bought Nikes! I never smoked, I fell in love, I learned how to develop and print film, I climbed the x*%ing Great Wall of China. I touched the Hollywood sign! Even before the accident, people asked me how I was never sad, never depressed. I got to do things I never imagined, I loved life, I was living the dream. I don't care what I didn't do, or what I can't do now, because at 20 years old, I was so happy with my life, so satisfied, like soooo stoked. They thought I wasn't going to make it for two days after the accident, but I did. Then they told me what I wouldn't be able to do, but they didn't say anything about me bungee jumping, or chest pressing 300 pounds, or doing pull ups on a streetlight, or meeting some of the sickest people ever. It’s been a year, a horrible year, but I'm still alive, still happier than everyone I know. If you're depressed or sad or bored, or even if you're not, go and do something that will change your life, something you have always dreamed of, something you never imagined happening. Who knows if you'll have the chance to do it again. "If you have the opportunity to play this game called life, you have to appreciate every moment. A lot of people don't appreciate their moment until it's passed." ~ Kanye. Appreciate it all, life's dope.
                                                                        *****

Wow! Happy Thanksgiving Xander, Cheryl, Robert and Zavier you're all amazing. 
Hugs,
Donna

ASD's Missing Link: Empathy. Nicky Made A Connection!

I'm in shock! Nicky unprompted, went into the kitchen and put chicken nuggets on the grill. When they were cooked he proceeded to get two plates. He divided the nuggets evenly on the grill, took half off and put them on a plate. Then he took the plate over to his longtime behaviorist "Miss Wendy" said "Thank You" and then went back and put the other nuggets on a plate for himself! This is HUGH. Nicky has NEVER made food for or served anyone other than himself unless we were right over his shoulder telling him what to do, armed with a reinforcer.

Equally miraculous was how he did this, with such ease and non chi lance as if this was just a part of his normal routine. Maybe in his mind, it always has been, he just wasn't able to express it yet.

Good Day!

PS: Another tribute to ABA and the pains of repeating! Never give up!!!

Changing Interventions, Part I: Transitioning Out of Intensive ABA

Nicky has been getting various ABA based interventions since he was diagnosed, which means our entire family has been getting ABA since he was diagnosed! Now his team is saying he's had these services too long. Combined with CA in budget crisis, well they have to move the kids forward. They are nudging us toward a new model "Life Skills" described as more flexible than our current program. Flexible??? What does that mean? More flexible, for who? Does it mean a lower grade services provided by staff with less skill? Does it mean we're on our own now? Does it mean this is his plateau?  Does it mean he will lose his structure and regress?

I Don't Want to Change!!!!!!!

I know we've been working toward this moment. We've changed his school program to be life skills based, we took him off the diploma track and my team says this will be good.

I'm nervous, anxious and feeling ton's of uncertainly. I'm not sure how much of my response is rational and how much is just my visceral reaction to change with some random fear thrown in. If it's fear, am I afraid for him or am I afraid for me? Maybe I'm not sure if I will be able to handle it. 

One things for sure, this journey has taught me I don't like change! They say our kids become prompt dependent, maybe I'm support dependent. Ugh!!!  I'll keep you posted.

iPad, Apps, Autism, Holidays...Am I the only one confused?!

I’ve read and seen so much about iPad & tablet “Apps” helping our kids learn and communicate.  I don't want my kiddo to miss out, but I've hesitated because he's a computer obsessed kid. I have to be sure how we are going to use it, when he will use it and where. If I don’t, I could just add one more obsession to his list, one more thing for him to perseverate on and risk missing out on the  benefits. 

My first step: to learn about the apps available.  I found two resources – so far –  that give the most info in one place, both links are below.  I found a book on Amazon (that’s inexpensive) called Apps for Autism that lists more than 200 apps and how they work and Autism Speaks has listed app’s. 

Amazon.com: Customer Discussions: Apps for Autism: An Essential ...

www.amazon.com/Apps-Autism-Essential-Effective-Communication/...

Apps for Autism: An Essential Guide to Over 200 Effective Apps for Improving Communication, Behavior, Social Skills, and More! forum ...

http://www.autismspeaks.org/family-services/resource-library/autism-apps

Next I’m going to look into tablets. Does it have to be an iPad? Will the new $199.00 Amazon Tablet do the trick? What about the new iPad scheduled to come out early next year that’s supposed to be less expensive?  What are the factors that determine what pad is best?  If anyone already knows the answers to these questions pls  email me (autismdaybyday@gmail.com) and I’ll post your information. 

The Little Tricks & Steps to Independence #1 "Cooking"

Problem: Safe Cooking
Solution: Counter Top Grill

It was 6:00am when I walked into the kitchen to see three eggs broken on the stove and chicken nuggets in the stove top well with flames all around! I got shivers as I contemplated what could have happened if I didn't walk in when I did.  Once I passed panic mode I could see the up side; Nicky was moving himself toward  independent. He wanted to make his own breakfast.
The challenge; How to build on his interest for being independent, without setting the house on fire!? 

Nicky's first attempt at cooking for himself!

Solution:  I went out and purchased George Forman style counter top grill complete with timer and auto "off/on" switch. The timer shuts off ALL the heat, if he forget's the food, and if he set's the timer for too long, the worst that can happen is the food cooks to death. There are never FLAMES involved...unlike my stove, toaster oven or microwave. In a very short time Nicky was cooking almost all the foods he loves; chicken nuggets, tater tots, potato wedges, sweet potato slices, grilled cheese sandwiches, all by himself.  Less the fact that he still has to be reminded to close the refrigerator, it's been a full proof solution in our house.

How he cooks now :) 

Bonus benefits

• It's grills instead of frying and he makes at least one meal a day, everyday on it all by himself.  
• Since he hit puberty he's hungry all the time. I'd be a slave to the kitchen if he couldn't get food for himself. 

Please share your independence solutions.  Use comments or Email me at autismdaybyday@gmail.com. Either way I'll post and we can all share!

First the Vacuum, then the World! Vacuum & Independence, a connection.

Nicky looks about as happy as any other teenager asked to vacuum!  However he’s learning more than most teenagers, he’s learning focus in ways that are critical for him to be out in the world. Right now he can’t drive a shopping cart without running into people or abandoning it. I love vacuuming; it's helps the family, Nicky earns money for things he wants and if you look closely you'll see he's learning how to stay focused on a tool, a task and his environment all at the same time. That's a BIG DEAL for him. True, enough vacuuming may take its toll on the walls he runs into,  but it’s better than being hit by a shopping cart!  Imagine all the things he will be able to learn once he gets this down; grocery shopping, safely riding a bike, roller skating, who knows! 

A typical moment. He's as unhappy as any
 kid doing chores. 

Finally! My Bed Is Empty!

Evyn slept on the floor outside my bedroom door for three days - where she stood firm and refused to let an incredibly determined Nicky go into Mom's bed. Night after night, all night long he protested, tantrumed and yelled and unlike Mom, Evyn stood firm "No Mommies Bed!".  She refused to give in, so thanks to her Nicky is now sleeping in his own bed!  I AM SO HAPPY. It was time, well past time. I guess I wasn't ready until now. I was too worried about all the frightening things that could happen if he got out of bed and I didn't hear him, or if he had a seizure or got hurt and I wasn't right there.  I felt safer when I knew he was right next to me. I wasn't ready to have him 20 feet away.

There's nothing like rolling over and being startled by the sight of  my child,  looking more like a man than a boy still sleeping in my bed to bring on a reality check. Suddenly I knew I was ready. I knew we would be okay and slowly I let myself get excited about the possibilities. No more waking up to the sound of a kiddo peeing, no more being slapped in the face as his body flails, no more sleeping in a tiny corner because he's sprawled out all over the bed, no more waking up to find his hand on my tush!
It's a good day and night.  Thanks Evyn.

Transitions "Please Bring on the Chairs"

Nicky was in 4^th grade the first time a therapist said we needed to begin helping Nicky with work skills. It sounded great, until they told me what they had in mind; Nicky stacking chairs in the classroom after the kids left so the janitor could sweep up.   I thought “That’s it?!, we’re preparing my child to be a chair stacker, what’s he doing working his way up to, janitor! That’s the best we have to offer him? He’s just a little kid and we’re training him to be a janitor! Oh no not my child, he’s a smart kid, NO not my Nicky.  

He’s in 7^th grade now, and with high school  right around the corner and the real world in view, I’ve changed my tune.  Today all I can say is “Please, bring on the Chairs!”  Well not necessarily chairs, but please help him learn independence.  When he was 7, it was too soon for me to think about Nicky the adult, it was all I could do to meet the needs of Nicky the child.  It seemed so far away, but now it’s almost here and I feel the pressure of teaching him life skills while he's in school.  Fortunately for me his teams are wiser than I had the ability to be, they've pushed independence skills into his program for years at home and at school.  Thanks to them he’s been learning all along.

 

Today I just want him to be able to have a job, and I understand the baby steps to that goal are giving him responsibilities.  If he is going to survive in the world and feel good about himself, he must have jobs that he can do independently so jobs it is. At home it’s  feeding the dog, taking out the recycle, taking out the trash, putting  his plate in the sink, cleaning up his playroom, and eating at the dinner table with a place-mat, napkin and fork, making his own snacks.  His school has a little farm and he loves animals. He has a job working on the farm and he works everyday raking, feeding, and gathering eggs. His team has set up a system to simulate a real work place complete with a clipboard in the office where he checks in before and after the job is done.
Nicky takes pride in doing his job and he's learning  how to do a job on his own. It's good. 

 

It’s taken so long to get here but now I understand. His quality of life will be determined by his ability to live in the real world. His ability to live in the real world will be determined by his level of self-reliance,  and independence.  My job is to help him be as independent as possible. Thank goodness everyone on his team knew not to listen to me as they continued to incorporate skills for independence in all of his programs!  Because today, I would be a very happy mom knowing that my son could get around town, have his own apartment and hold down any job, that he enjoyed doing! Yes that includes being a janitor.

PS: Unless of course his perfect job comes along. The job description would read: We are seeking an applicant who is kind, loves puzzles, water and video’s is an expert in the ABC’s, memorized names of most animals in the world and loves to swing. 

“Prompts” and Circumstance

“Prompts” and Circumstance

Avoid the dangers of “Prompt” Dependence!!  We've all heard it. First I was taught to give Nicky prompts, then I was told he's getting to many prompts. One day prompts are part of the solution, the next, part of the problem! Oh yeah, nothing simple about his journey.  

 

A clinician associated with Nicky’s program visited us to see how we were doing. The main observation: Nicky was getting too many prompts from me to help him manage his behavior, he should be more independent.  I resisted the pull to feel judged, remembering my note to self “It’s not about you, it’s about Nicky” and I saw her point of view.  Unlike me, she didn’t focus on how far he had come, or how hard we had worked to get him to this point, she only knew who Nicky was in that moment and she only saw his potential. She brought a new pair of eyes, and I guess we needed it.  

 

(Can you believe I’m the same protective defensive clawed mama bear who used to have to restrain herself in these situations!?)   

It's true, I do everything to help Nicky manage his behaviors, not just for him, but for me too.  Nicky out of control is awful, and I want to avoid the aggression, tantrums and meltdowns.  I was so locked into stopping them by all means possible, I didn't see that I had become part of problem.  Nicky has been taught self-management skills, and he knows them. The problem was, I was still prompting him to use the skills, instead of standing back -providing no prompts - and letting him figure out when and how to use the skill on his own.  Our goal after all is getting him to use the skills consistently and without assistance, so he can always rely on them, and that’s the only way to independence! I got it, at least for now.

 

I made a visual tool for Nicky to replace me giving him  prompts.  It's a behavior/consequence cheat sheet showing Nicky what behaviors result in a “Happy” Nicky and what result in a “Sad” Nicky.  I used all things that he knows and understands, things he wants and cares about, to help him connect the dots of consequence to his real world. On the Happy side are things that make him happy or lead him to things that make him happy. For example having a calm body earns him free time. If he earns free time he get's to go on his computer or play a video and that make's him happy. So he connects the positive behaviors that lead to happy events.  Same for the sad Nicky list. 

 

 I put them in his back pack and around the house.  To make sure they were handy so I don’t have to prompt him, I just hand him the card.  It’s been a few weeks and  it's working. Here’s  what it looks like:

 

 As always I open to feedback! 

An ASD Day

Nicky 's social skills are better, but better than what? He used to not talk to people, now he talks to people, randon people but it's what he says that needs work. Today he saw a cute little girl in the zoo and she had a dinosaur on her T Shirt. So Nicky happily yelled to her "Dragon Tales, Dragon Tales. Hi Dragon Tales" and with great excitement about meeting the little girl he began to jump up and down and make noises.  The little girl just froze and I said "your shirt reminds him of dragon tails, so now thats you". She looked wide eyed at her mom frightened and left. The mom, just took her and walked away.  He was happy - she was scared. The Great disconnect our kids face.  Clearly, we are not there yet  :(   It's time to return to working on basic greetings. 

Autistic adults pose challenge

I am frighted about how we are going to providing housing for people with ASD. So much so I chaired a committee looking into housing, and the crisis in CA. It is a crisis and I pray we find a way to meet the need. After you read this you will perhaps better understand my off color jokes about Nicky and I sharing a room in assisted living. It really isn't a joke at all, but a reality that we will all meet face to face.

_____
Several of Arizona's leading real-estate groups have tackled a growing national housing problem in a new report, Opening Doors: A Discussion of Residential Options for Adults Living With Autism and Related Disorders.

During the next 15 years, more than 500,000 children with autism disorders will become adults. Now, most adults with autism live with their aging parents, who won't outlive their children. Autistic adults currently have few options for housing away from their families.


"The potential crisis in housing and services for this population is an issue not only for families and local communities, but for society as a whole," said Joe Blackbourn, a Valley developer and former board member of Southwest Autism Research & Resource Center.

The housing needs for the growing population of autistic adults must become part of a community's growth plans, according to research from the Urban Land Institute Arizona, SARRC, Arizona State University's Stardust Center for Affordable Homes & the Family, and the ASU Herberger Institute School of Architecture.

The Opening Doors study, released last week, looks at potential models for affordable homes and financing options needed to build projects for autistic adults.

Backers of the research are already scouting properties in metropolitan Phoenix that can be renovated into those residential models. These projects will help the ailing housing market by filling and converting abandoned properties and funneling money, including federal funds, toward construction projects.

The research was funded through grants by Urban Land Foundation, Pivotal Foundation and SARRC.

The housing portion of the research introduces builders, architects, developers, planners, public officials and others involved in residential development to the conditions of adults with autism that demand a new approach to the design and development of homes, said Sherry Ahrentzen, associate director of research at the Stardust Center.

Kim Steele, associate professor of landscape architecture at ASU's Herberger Institute, said the 10 resident-based design goals from the research range from neighborhood amenities to technology needed in homes for autistic adults.

Autistic adults pose challenge

Nicky's first day of a Team Sport - Lookout Basketball

Today was Nicky's first day on a basketball league and it was fantastic! It was so exciting, me and my boy at his first day of a team sport...WOW. He doesn't know how to play, but it didn't matter he had a great time running back and forth, up and down the court. He got three chances to shoot and we were both grinning from ear to ear! Everyone tell's me he'll be playing like a pro in a few weeks :) LOL. I'm just happy he was there, in the game.

Tiny back story a parent told me today. Its a small league run by volunteer coaches. The head coach used to coach a traditional boys team, and one of the boys had a sister with special needs. Every week this young girl would yell "coach when do I get to play". She apparently asked this question all season. At the end of the season the coach said, get a team together an I'll coach you. This began a team of kids with all types of disabilities that has now grown to over 40 kids at a local park. The coach volunteers his time and he is phenomenal. He was so excited to have us, I felt like Nicky was first draft choice, playing for the Lakers.

Thank God for the people who do, because they care and because they can. Thank you Julius for getting little man on the court!

Note: Many of our unique kids with ASD have barriers to being able to participate in team sports. For some kids they can't handle the loud noise. Other's can't process the language fast enough to follow commands that are essential to play, some don't have the motor skills and others don't have the ability to reference or anticipate other players actions. Nicky just can't stay focused and he doesn't anticipate others. I am sure he will get hit by many a basket ball while he's looking the other direction..or just jumping up and down thinking about what he wants to do next. BONK!!! When he roller skates, I pull him around the rink, he doesn't look at where he is going, his body goes one way while his eye's are looking all around. He's a danger on wheels, but we keep trying. Don't see a drivers license in his future!

Social Skills vs Academics My Struggle with Priorities

EQ vs IQ an Autism Challenge

Today I heard about parents of a high school student who took their son off the diploma track resistant to surrendering their fight to have him meet the standard academic requirements. The work load was a major source of frustration that seemed to exacerbate the gap between him and the other kids. His therapeutic aid welcomed the change (which the school had been pushing for sometime) because he was strongly committed to focusing more on the social than academic success. I listened with sadness because I understand why families hold on to grades. I understand how hard it is to feel like we have left another piece of our child's shot at a "normal" life, behind.

Experts told me over and over “Don’t worry so much about his grades – they will come or not - his ability to socialize and develop friends and life skills are what's most important”. However, Nicky’s social skills were nearly non existent and seemed to progress so slowly that I grew to take great comfort in Nicky’s ability to do educational activities, even if they were rote. It was his knowledge of every animal, his incredible memory, his love of the ABC’s and his ability to read that gave me something to talk about.

It was in his exceptional skill with puzzles or the computer that let me brag about him. His rote/academic skills gave me something to say; not sports, his favorite new toy, or parties or what happened the other day with his friends. When it came to "academic" type stuff my child had peers and I too could measure his progress, like other parents. It was those skills, those moments that opened the door for us to participate in the “normal” club and lessened my ongoing grief.
And there was a bonus, Nicky's academic skills give me an opportunity to teach kids and adults that, yes my son has autism, but he is not retarded. He is more than they see and more than they think he is! I hold on to these moments, not just for Nicky, but because they give ME a feeling of normalcy and an escape from the painful reminders of my son’s autism.

Today socialization is still difficult. We barely find play dates. Nicky doesn’t initiate inviting kids over and for the most part kids do not invite themselves. I remember when his social skills team pushed me to get the neighborhood kids to come and play. I invited a neighbor - that I didn't really know - to bring her two boys, who were around Nicky’s age over for a play date. Disaster! We had a mix up on the time so when she arrived I was not home. A therapist was with Nicky but had not prepared him or set up activities. Unprepared for a change in routine and new kids Nicky proceeded to have a major tantrum and meltdown; which scared away the kids and the mom. They never accepted a play date again. I’ve invited another neighborhood boy over, but he’s not apt to accept the invitation since Nicky showed up naked at his house and commandeered his VCR, armed only with his blanket and the video he wanted to watch.

The kids from school are kind to Nicky, but he doesn’t get invited to hang out with them. I believe the kids like him, but he is not a kid who is out doing what other 11 year old boys do and he has never been the social equal of his peers at any age. His best friends are great boys who have some type of challenge, whose parents understand and encourage the friendships. Without them there would be nothing.

When Nicky was 2 I couldn't completely comprehended what the experts meant, but I get it now. If Nicky is the most brilliant person to ever walk the earth, and he can’t function in society; make friends, communicate with people, order food in a restaurant, eat with utensils, go independently to the restroom, ride a bus, get dressed, keep his cloths on, walk safely across the street, hold a job or cook his own food we all lose.

Nicky is 11, and the clock continues to tick. The edge his rote skills gave him in elementary school has faded. I am feeling anxious about him being ready for the world not the classroom. Next month Nicky will enroll in a basketball team. His male social skills therapist is going to work with him every week. I accept that Nicky won’t like it at first, he never does, but we are not going to let that stop us. I’m confident that if we can first just teach him to tolerate it he will slowly come to like either the sport of just being with the team. Both would be great, but I’ll gladly take either one.

So, the most important thing I can do – for both of us - is push him as hard as he can be pushed to learn how to function in this world. I have to remind myself every day what’s really important and I have to give others permission to remind me to, which they happily do.

and the journey continues :)

Anger & Ignorance Two Parts of the Inclusion Solution

Today when I picked Nicky up from school and I asked his therapeutic aide my daily question. "How did it go today?" His aide took a deep breath, sighed and said, "Not so good. We had an incident." Following a long silence that seemed to last forever, he went on to explain how he had left the class room to take a break, while Nicky stayed behind with another aide. While on his break he heard a commotion coming from the classroom. He rushed into the room to see the girl Nicky sits next to huddled with her friends and yelling, "He Spit On Me, He Spit On Me!" The aide who had been watching Nicky had been called out of the classroom so Nicky was by himself when whatever happened took place. I was pleased to hear that the teacher in the room remained calm, despite the upset to both the aides and kids.

When I heard this I was puzzled because I know that Nicky's behaviors do not include spitting on people. Nonetheless, whatever did happen resulted in a young girl having saliva on her sweater - it was not that Nicky had intentionally spit on her. That said, I was relieved when his aide told me that some of the kids still joined him for lunch and they did not think Nicky had spit on her. At the same time I was sad to hear that any of Nicky's classmates were upset, frightened, angry, repelled or disgusted by his actions. I also worried that this incident might give them a reason to stay away from him or make him more of an outsider than he already is.

This is not the first time that an action of Nicky's - which other kids were not familiar with - had gotten him into trouble. In elementary school Nicky ran into the boy’s restroom right as the bell rang for recess instead of making his usual trip on his own before or after recess. The restroom was quickly filled with loud screaming boys running all around. Nicky went into sensory overload and began jumping and hand-flapping. He hand-flapped right into another little boy who thought Nicky had intentionally hit him. The boy turned around and punched Nicky dead in the mouth! That was a hard day.

In both of these situations I knew what Nicky was doing and I knew he never meant to harm anyone. He just doesn't have the same controls over his body that most of us have and take for granted. Nonetheless, I know he behaves in ways that people are not used to and it can be both disconcerting and frightening.

Today, I could see his aide was shaken. He was worried that Nicky had been unfairly targeted and would be ostracized. He was angry that kids were making fun of Nicky and that this moment might define him for the rest of the year, or longer. It hurt him because he wanted to protect Nicky and he wanted to protect himself. I know, because I have been there. I used to be the one who got upset and defensive when people stared at us, didn't include him, or treated him in any way that was unkind. I know, intellectually, that most people are not intentionally being hurtful or mean. But in the moment, when their words or actions hurt, their ignorance wasn't a good enough excuse. I was unforgiving and angry.

Over the years concern for Nicky's well being has grown larger than my need to control outcomes, larger than my embarrassment, larger than my disappointment, pain and fear. Slowly I've moved away from being so angry and judgmental about the things people say or do. Like a bonk on the head, one day I realized that my feelings were keeping me from being a larger part of making it better for Nicky and me. It was I who wanted Nicky fully included in his schools and community, not necessarily the other way around. It was I who was unable to see that these challenging situations were opportunities to teach people about Nicky so that he could be included in our community. This awareness made it helped me to accept that people don't understand Nicky or Autism. It has made it possible for me to respond to people objectively. Now I work to see questions/situations as opportunities for every person who talks to me to learn something about Autism.


I see questions like "Can he read?" or "Can he understand me?" or “Can I talk to him?” as opportunities to teach. Instead of stupid questions that used to hurt my feelings and make me angry. I now smile, take a breath, get in touch with my gratitude and I say things like "Wow, good question, thanks for asking. Yes, you can talk to him and, yes, he can read. He's a great reader and he writes too, as a matter of fact he spells better than most people I know. He memorizes almost everything so don't hesitate to ask him how to spell a word if you ever get stuck. He's a great kid who's got a great 'thinker' but his processor is messed up." So different from how I responded when I was angry and defensive.

Today I was able to hear the aide, I was able to put myself in his protective defensive shoes and talk about the lessons I'd learned. Specifically, I have come to believe that our role is not to judge, but to be the calm ship in the storms created by fear, a steady force that calms people who don't understand and use these tough situations to help others learn. It’s the only way I have found to really be part of the "inclusion solution", one situation at a time.

My Vacation Ahh Ha Moment!

For the past 4 years I have meticulously planned what I thought would be fantastic vacations that would thrill the kids, instead I repeatedly came home disappointed, frustrated and broke.

This year it hit me, I've been approaching family vacation all wrong! Despite the time, money and effort I put into creating our "Perfect Family Vacations" nobody was really ever happy. Evyn (my teenager) was almost always angry that her brother had to be part of our vacation. So when I would say "Let's go do…." she would refuse. She didn't want to go anywhere her brother went (which was everywhere since it was only the 3 of us and leaving him alone was not an option). Then as if on cue, Nicky's agitation would increase - being asked to wait and the tension oozing from me as I begged, cajoled or demanded his sister to join us, only sent him into tantrum mode - reinforcing why his sister didn't want to hang out with him. I couldn’t believe I was begging kids to have fun.

I started feeling frustrated, angry, sad and hurt because it seemed to me that at the very least my big kid could be appreciative or show some visible signs of excitement. It seemed I was the only one who cared if we had a good time. But, in retrospect I realize that I didn't just care that my family had a nice vacation I had packed a extra bag filled with single parent guilt and desires to create fairy tale memories in our very un fairy tale life.

After years of failures I finally learned and this year I got it right. I learned that I cannot "plan" a perfect vacation for our family, because nothing ruins a trip faster than loading it down with too many expectations. I learned to drop all my ideas about "how vacations should be". I learned that I was delusional thinking that my kids would be magically transformed into different people because we were on vacation. So I gave up my fantasy this year and accepted that I can't make us the family you see in the travel video's! So on this trip, I gave in (I didn't say gave up) and just let the cards fall as they may and we actually had moments where we looked like one of those vacation video families. Incredible!!!

So how did I get there, I had to:
• Drop all expectations of having the perfect trip.
• Not spend so much money that if they don't have fun, I will feel angry or resentful or in debt.
• Accept that my kids don't seem to care where we go as long as there is water (preferably a pool)
• Plan a vacation where a pool is the centerpiece.
• Get the teenager her own room (even if it means a cheaper hotel)
• Resist the temptation to pressure my daughter to participate in activities with us.
• Be willing to just go about my business, CALMLY no matter how either of them behaves.
• Eliminate activities/plans that had to attended at a certain time or you forfeit your money because they create too much pressure.
• Commit to enjoying myself, not making them enjoy themselves
• Repeat to myself “Pressure Free” and resist my natural tendency to over plan
• Keep vacations local. Airplanes, passports and borders are too much when traveling with my kids.
• Nothing takes the joy out a family trip faster than stress. Just find a place, park us, relax and enjoy each other.
• Pack our cloths and not my guilt! :)

We’re home now and I’m happy and so are the kids and if I may be so bold, I think they even enjoyed each other.

Good Night Nicky! One More Way our Kids are "Special"

Nicky's favorite place to sleep is in my bed. Given the opportunity he even likes to choose my pajamas, preferably red! Yep, he likes the red and white stripped oversized T shirt I wore when I was pregnant with him.

This all sounds sweet, and when he was smaller sharing a bed was comforting and useful. I was right there when he would wake up at night (which was often) to help him get back to sleep and I always knew where he was. I could sleep because I knew what he was doing, where he was and that he was still alive! I didn't have to worry that he had escaped from the house and run naked to the neighbors with his videos and blanket in tow and taken over their family VCR. I didn't have to be concerned about running in the street looking for him in my pajama's or the little faces of horrified children who had been pushed away from their TV by a naked child, or wonder if he had decided to cook an egg on the stove - minus the pan - or worry if he had decided to go downstairs and watch video's all night, or if the freezer had been opened in the middle of the night leaving all of our food to spoil.

Oh, yes there were benefits to keeping Nicky close, very close. At the same time, like all kids he is so beautiful when he's sleeps and he likes to have me near. I know this because every night, with his eyes still closed I watch his precious little hand reach, fingers stretched apart, extending from his body reaching out searching the bed to see if I am there. If the hand finds me, he returns to his peaceful sleep. If the hand does not find me, he wakes up and screams "Mom!". If he doesn't find me immediately, he's up for the count and so am I. So to minimize sleep deprivation I learned to stay near by.

Now at 11 years old he's just a little to old to be sleeping with me and sleeping with him. It’s just not so precious anymore. Not so precious when; I am sound asleep out like a light and BAM!!! That precious little hand smacks me hard across the face and then it grabs my hair and pulls with all it's might! Crap, what a way to wake up. Not cool, when his favorite pillow is my bottom, which he attempts to uncover and fluff up before putting his head on it. Then there are the nights he pops up at 4AM, turns on all the lights in the house and then uses my bed (while I'm still in it) for a trampoline. Oh and let's not leave out my very favorite. I'm sound asleep and suddenly I hear a little noise and then I'm all wet!!! Nicky has peed on me, the bed, the sheets, the blankets he's soaked and he calmly roles over ready to return to his sound sleep. I leap up, pissed, literally, wake him up send him to the rest room and clean up begins. Oh yes, night time is "Special". LOL

Moving on...Like all mom’s I always say "sweet dreams" to Nicky and its part of his favorite story "Good Night Gorilla". But unlike most kids, Nicky and I have never talked about dreams. He has never alluded to me that he knows what a dream is, or that he had ever had one. But today I opened my eyes and there was Nicky. He woke me up, turned and faced me, looked me in the eyes and here's our conversation:

Nicky: "Mommy dreamed. Pictures in my head. I saw sheeps eating the grass and they got hit by a tractor".
Me: "Wow, you had a dream with sheep are they okay?"
Nicky: "The tractor hit flamingos then the flamingos went to the hospital".
Me: "Really?"
Nicky: "I was sad that the flamingos were at hospital."
Me: "Did you see anything else?"
Nicky: "Sheeps"

Those are his words. His precious words. This is a little miracle for me. It's not everyday that he stares into my eyes, his eyes filled with emotion and I get a peek into Nicky's world. Today I received the best gift he could give me, a completely novel, unprompted, unscripted conversation recalling something about him. Something out of his imagination. I am so happy I didn't miss this moment. It was all worth it, the bad nights, the wet beds because I got to be there. There in that moment when something happened that had never happened before.



Donna

"Thank You Mommy"... Happy Mothers Day

I wanted to share something special on mothers day. Then it hit me, the perfect post! Last year a friend sent me a beautiful message. Although it was sent to me, it was a message for all moms who love and support their kids everyday.

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"It's during these extra hard days that it becomes very clear why God sent Nicky to YOU. Nicky is an angel who was sent to Earth in a form that may never allow him to feel the hurt, of disappoint from bad people, crapy bosses, shity girlfriends, or bad credit. He just is a wondrous, peaceful, ball of pure joy, who deserves to be protected and shielded from anything that could ever hurt him. In his infinite wisdom, God sent an ANGEL from heaven to an ANGEL on Earth, and that would be YOU. As draining as it is for you, to watch you keep it together and endure his challenges is remarkable on so many levels it's impossible to put into words. Deep inside him, there's a healthy boy trapped inside that body who knows that you are there for him. Since he can't tell you, I'll say it for him..

"Thank you mommy for always being here to hold me and protect me when I'm hurting. I know I will get better as long as I have you. I Love You."

Now, go have a good day!

Happy Mothers Day Everyone

Anything But SEX!

I don’t like to talk about my son and sex. Some how in my brain I connected sexual issues with Nicky being grown up, which always seemed so far in the future. So I closed the door and avoided going there. I did a good job for years, but it seems that I can't ignore it anymore as the messages hit me daily. From the young man at the restaurant last week to the conversations last week with therapists, the message that surrounds me is "Nicky Is Growing up". Maybe it's because Nicky leaves the safe environment of his elementary school this year to begin middle school and I know the next phase, is now.

I remember when he was only 4 and I was sitting in a therapy waiting room - for social skills class - when a young man with ASD (about 14 years old) began opening magazines and pointing at the models breasts and screaming “boobs, boobs, tits” as he loudly laughed and jumped around the room. I froze, with my eyes like saucers praying that this would not be my path. His mom began speaking to another mom and they talked about how their kids had developed sexual obsessions. I think in that moment I said to myself “oh no, I’m not going there, anywhere but there!" and I took the conversation about sex and my son off the table.

A few years ago a friend told me that her 11 year old son with ASD had been sexually molested by a 14 year old boy with ASD. It was clear to me that she was traumatized by what had happened and was clutching to sanity as she tried to determine what to do next. How would she protect him in the future? How would she tell the other boys parents, who had recently adopted this boy? How would she talk to her son? How would she get help for her son? She did get him help and she was brave enough to get her entire family help. Later she told me about the wonderful sex education/safety classes she attended and recommended that I check them out.

I listened and I told her how great it was, but I knew I wasn’t ready, to face this topic head on. I just kept praying that I would not have to go there, at the same time I was thinking OMG how do I keep my son safe. Don’t we have enough challenges, now I have to be reminded of one more way our kids are vulnerable and cannot protect themselves.

Seems I can run, but I can't hide. This week I heard three stories about our kids and sex.

Story 1 One therapist said “There is a little girl with MR at school and she dress’s like Britney Spears. She is cute, but she looks provocative and she is a target for the boys and men, she can’t defend herself. I am afraid for her. I wish I could talk to her parents”

Story 2 A therapist who works at a middle school said “One of the girls in my special day class at school has a boy friend they both have serious developmental disabilities and I think they are having sex. I asked the mom about birth control and she does not think it is right for her daughter. She thinks their relationship is cute she is happy her daughter has someone. What about the baby they might create that these kids can’t care for?”

Story 3 A different therapist reported. A dad of a boy with ASD asked me about his son. He said that his son had begun masturbating and he just well, couldn't get the job done. He didn’t know what to do. So he wanted to know if he should teach him to finish the job? The therapist said “NO” would you teach your typical son that?

So, I get it. We are all struggling to figure this out. We are all doing the best we can to cling on to whatever version of reality that helps us get through the days. But right now I'm hearing that I can’t run forever. Yes, it's tough because I'm a single mom and I think this is a job for a dad. Yes, it's natural for this to be that “private” stuff our children work out as they become independent adults and I don't know if I can handle this unnatural part of parenting a child who is also a young man. The caregiver role is clearly defined for our small children, but not so clearly defined for children adults with developmental disabilities who only partially grow up, who we may parent forever. It is unnatural and awkward for me. Nonetheless it seems I will have to find the courage to get past my discomfort and get involved. Wish me luck.