Read This...

I recently broke two vertebra and shattered my heel, now I am recovering and writing about that process at http://brokenmommy.blogspot.com/

Please come and enjoy the journey. Thanks, Angela

Finding A Balance

As I was rolling out the pie dough last evening, a voice of a sibling of an adult with autism was being interviewed. The thirty year old man talked about how his childhood revolved around his non-verbal brother and how the family life was decided on one factor, his brother. Whether the family went on a trip or went to the store was all based on the brother and as I listened the words spoken faded away and all I heard was anger.

Anger over not having a typical childhood, anger over not getting attention, and anger now about soon having to care for his brother. My husband, Peter (who was also listening to the radio interview) chimed in and said "that was interesting, don't you think?" Still rolling the pie dough, I stopped, and said, "No, i think it was sad."

Sad because I could feel the negative energy flowing through the radio; I almost turned off the radio in the middle of the interview. As I listened more, I reminded myself of all the families I have met and how hard they are working to balance family life.

We have come so far in creating a family life that supports all members, however the interview made clear how important it is to not make autism the center of the family. Sometimes that may mean deciding not do a therapy or an autism event, so that the whole family can thrive not just one member.

In thirty years I want my children to reflect back and remember the camping trips we took, the special movie nights, or the hikes in the forest, not us running around to this occupational therapy or that speech therapy appointment.

Effective Agenda for IEP meetings

Meeting agendas are a useful tool for any meeting and it surprise me every time I hear that they are not being used or not being used properly for IEP or team meetings. In the Build Your Family workshop I teach how to set-up a productive meeting and the first step is the meeting agenda.

Agenda ideas can either be gathered at the last meeting you had or through email. Since this would be your first agenda, email all the team members for agenda ideas. A simply, friendly email like:

Hi everyone,

I would like to make sure we cover all the areas we need to address at our next meeting, so I am going to make-up a agenda to follow. I know you all have so much on your schedules, so the agenda building can be my job. Please send me all your suggestions by (insert a date).

Thanks again for all your help,

Now, it is time to organize an agenda that you can use each month:

IEP meeting for ________________
May 19, 2009
Room#12, Elementary School

• We work hard to start the meeting on time, people come as soon as they can & they will inform the group if they need to leave early at the beginning of the meeting
• We allow people to finish speaking
• We are respectful of one another in discussions of children, adolescents & adults with ASD, their families, & the professionals, programs & agencies that work with them
• We actively solicit diverse ways of looking at things
• We use person first language (e.g., child with autism versus, autistic child)
• We recognize when more information is needed before a discussion can proceed
• We clarify actions that need to be taken, by whom and when
• We collaboratively determine agenda items for a meeting and important topics that should be discussed as a group
• We revisit our norms periodically and make changes as needed**

10:00-10:10 am — Angela will greet everyone and give updates about Tristan.

10:10-10:40 am — Review goals for IEP and make any changes.

10:40-11:00 — A discussion about need for an outside specialist to come work with Tristan and the team on reading.

**These norms are taken from the Vermont Autism Taskforce agenda.

Help Us Build a Better Program

I have been hearing a lot of frustration and pain out there over school related issues. Some of the stories told to me by parents have sucked the energy right out of the parents leaving a shell; not a great place to parent from. It seems to us at Parenting Autism, school related issues tend to be a huge obstacle to getting on with your life; they drain time, energy, and resources.

So, how can you move forward when all the players (the school) are not willing to help get there. The portion of our Build Your Family workshop that focuses on developing an Inclusive Team of Professionals has been so popular we are expanding it. So, we need your help to make it better, please take two minutes (really that is it) and fill-out this survey

Pass this link on to your friends, co-workers, neighbors, and family who have children on an IEP (the child does not have to be diagnosed with autism). The more data we collect the more information we have to help shape a new program for parents and educators.

Will You Be My Friend?

As all kids on the autism spectrum, Tristan has a difficult time with social skills. Often Tristan’s words fail him or he has a hard time retrieving the words fast enough to react to his classmates. When there is break down in communication Tristan sometimes (not always) gets frustrated and puts his hands on the other kids face. Quickly, he is able to regain himself and apologize and move on (often without teacher redirection).

Last year this scenario happened daily or even several times a day until we (home and school) used video modeling. We used video modeling to instruct Tristan how to stand in line without touching the other kids. First, Tristan was video taped in line touching the other children (not the desired behavior). Then the other kids lined-up slowly, one at a time, placing their arms down, and hands by their sides (desired behavior).

Tristan watched the video at home and within weeks the behavior switched from undesired to desired behavior. Since, we have used video modeling to help Tristan understand social situations like how to negotiate when he wants a toy that another child has. We have even used video modeling to teach Tristan the ABCs. Letters held no importance to Tristan until we placed them with a person or object that had meaning for him, like M for mommy (picture of me).

I think it is time to revive video modeling to teach Tristan some complex social situations like creating friendships. Often Tristan will suggest a play scenario like let’s build with Legos and his friend says no let’s play soccer and Tristan says “no, I don’t like soccer”, then he walks away. Instead of Tristan saying:

“How about playing Star Wars?”
or
“Ok, soccer now, Legos later.”

Tristan’s IEP goals and our parenting goals reflect social development; however sometimes they can become overshadowed by academic objectives like learning to read. I find myself reminding his school team that Tristan will be a successful read and writer, but right now, his peers are willing to practice social skills with him and as they grow older they will probably lose interest.

Tristan will need more time decode and navigate the social scene, so giving him as much time now when he and his peers are young to practice will help not only Tristan, but probably the entire class.

What is Your Plan?

As parents our number one job is to grow our children into adults and kids on the spectrum need more time and practice to master the life skills needed to have a productive, meaningful life. So, what is your plan on teaching your child… do have one? Parents with children with ASD spend hours pouring over IEP goals and services, but how much time do you devote to your parenting plan?

In my workbook and workshops, I teach parents how to develop a parenting plan based on your family values and what is important to you. Your parenting plan can be as basic or elaborate as your need it. Depending on the age of your child and their needs your parenting plan might be focusing on bathing, and identifying clean and dirty clothes, or grocery shopping and practicing making dinner.

Last year Peter and I decided that we wanted to establish a daily bathing schedule along with identifying a pattern for clean and dirty clothes. We taught Tristan that everyday he needed to shower which included instructing him how to wash his body and hair. To go along with bathing we taught Tristan that everyday he needed a clean shirt, underwear, and socks, and every second day he needed to change his pants.

First, we used picture boards to explain the steps and slowly we took away the supports. We have picture boards on the dressing sequence (1. underwear, 2. pants, 3. shirt, and 4. socks), showering (1. wash face, 2. arms, 3. legs, 4. bottom, 5. penis, 6. mid-section, and 7. hair), and the morning routine (1. undress, 2. shower, 3. dry-off, 4. get dressed, 5. floss teeth, 6. brush teeth, and 7. go down stairs).

Tristan took about a year to master his morning routine; some sections took less time to teach than others. Now, Tristan does his entire morning by himself… he even gets his backpack ready for school!

Our plan for this spring and summer is to teach Tristan to walk up our street by himself to a neighbor’s house. We have been practicing since the snow has melted from our street— the other mom stands at the end of her driveway and I pace at the end of mine and Tristan walks to the other house.

We review street safety with Tristan including walking on the side of the road (no sidewalk) and keeping your head-up so you can see cars approaching. I use direct language, like “head up, look for cars, and stay on the side of the road”. I make the language and instructions as simple as possible. Peter and I figure that by next spring Tristan could be able to walk the street without us supervising.

One of our overall parenting goals for Tristan (and Dylan and Liam) is to give them all the skills they need to be independent adults. What we have realized is that Tristan needs more supports and more time to practice the life skills we are responsible for teaching and developing, so we decided to begin earlier than later.

When Tristan was in my womb I never imagined the depth of parenting we would take on and sometimes it does seem overwhelming and frustrating, but we made a choice to be parents and you can never predict how your life will unfold.

Autism Awareness Month-- Parenting Autism Workshops

Today marks the first day of National Autism Awareness Month and the people here, behind-the-scenes at Parenting Autism decided we wanted to give back to the Autism Community by offering a FREE parenting workshop on every Saturday in April. Parents from all over Vermont and one family from Quebec have been calling and emailing to register.

As we get closer to our first workshop in Burlington, VT this Saturday the buzz of excitement grows because we know families are not getting enough support which results in splintered families, families that don’t work, and relationships that don’t flourish. We want to help you create a meaningful family while preparing your child(ren) for adulthood. Sign-up today at angela@parenting-autism.org

Burlington, Vermont Workshop
Saturday, April 4th, 2009
8:30am-12:30pm (light fare provided)
MAIN STREET LANDING PERFORMING ARTS CENTER
The Great Room
Corner of Lake & College Streets
Sixty Lake Street
Burlington, Vermont 05401

Rutland, Vermont Workshop
Saturday, April 11th, 2009
9:30am-1:30pm (lunch provided)
RUTLAND FREE LIBRARY
The Fox Room
10 Court Street
at the intersection of Court and Center Streets
Rutland, VT

St. Albans, Vermont Workshop
Saturday, April18th, 2009
9:00am-1:00pm (lunch provided)
NORTHWESTERN COUNSELING AND SUPPORT SERVICES
130 Fisher Pond Road, St. Albans, VT
(the new building)

Norwich, Vermont Workshop
April 25th, 2009
10:00am-2:00pm (light fare provided)
UPPER VALLEY EVENTS CENTER
Route 5 SouthNorwich VT

Here are some highlights from our workshop, Build Your Family:

• After Diagnosis: Grief, depression, anxiety, sadness is a host of emotions that a family must continue to face throughout the lifespan, not just after diagnosis — we help with dealing with emotions and how to make plans to move forward. Including connecting to your community to gain a support network and find “your people”.
  
• Build An Inclusive School Team: Through strong team building skills and meeting planning we teach you how to have a working team at school and at home.
  
• Create Your Family: What are your family values? How does your life support the family values? Learn how to create a weekly family meeting, family dinners, and family outings for everyone.
  
• Your Child: Learn how to prepare your child for a meaningful and productive happy adulthood now at whatever age they are. Teaching life skills in way your child can understand.
  
• Medical Issues: Learn how talk to doctors so they will understand. How does pain affect children with autism and what you can do to help?

The Circle of Crisis

I talk about the “circle of crisis” in my workshops or here on my blog, but I have not actually sat-down and explained the term. I see the circle of crisis as when a person, a family, an organization, or even a company can’t move forward — even the most simple task as calling a doctor becomes to overwhelming. You are consumed with either the anxiety of the future (how will my child survive without me as an adult) or too focused on the past (what-if my child had more intervention when my child was three) to work in the present.

Emotions get tied around the task at the present moment and become too difficult or too overwhelming to accomplish and the circle of crisis keeps revolving. Often times the task whether it is revising IEP goals for your next meeting or calling about a hearing test takes much less time than we think, if can step-out of the circle of crisis and into a peaceful state that lives in the present.

By jumping off the train of crisis you can deal in the moment and leave the future what-ifs to the future. Some strategies I discuss in my workbook and workshops are writing down steps to the task you wish to accomplish and taking the emotion out of the task-at-hand. Whether you feel sad, happy, guilty, mad, or frustrated, deal with the feeling by acknowledging how you feel and allow yourself to get back to a state of peace. Take a walk, call a friend, sit quietly— whatever it takes to get YOU back then tackle the task.

Live Now

Do you live right, now? I mean— are you present in the moment of now? Present in what is happening at the present — not the future or the past — but the now. Yes, it is a difficult task to not project forward to potential prospects or not dwell on what has occurred in your history. Take a moment — look around — what are you missing? Your children dancing around the living room to the latest tunes from your IPod or your spouse glancing at you with loving eyes or a phone call from a long-lost friend, what is more important — what you need to do to get to the next thing, event, or item on calendar or the now?

I challenged myself to living in the present; to take every opportunity that happens in the moment. The other night I snuggled on the top bunk with Tristan as we looked through one of our Waldo books I thought nothing of the piled-up dishes in the sink or laundry to add to the washer, I stayed focused on finding Waldo and guess what? We had a blast, not only did Tristan and I have fun, but we connected. Tristan knew all my energy and thoughts were on him and the activity, not on the steps of the evening or tomorrow’s phone calls.

Who knows what tomorrow will bring maybe you will win a million dollars or get hit by a car so spending all your reserves on the future or the past robs you of the present. After Tristan was diagnosed with autism I spent hours and perhaps even days at a time, researching and analyzing how Tristan could have gotten autism. I remember sitting in my warm car looking out at the children playing on the beach while Tristan and Dylan sat strapped into their car seats, so I could take a call from a pharmaceutical representative about a vaccine Tristan received two years earlier. Instead I could have been at the beach playing in the sand with my kids and living because whatever was said on the phone did not matter. What happened two years earlier did not help me or Tristan then or even now.

So, go live for the present. Challenge yourself to live an hour or a day or even a week in the now. See what the results are if you shed the baggage of the past and stop analyzing the future. Perhaps you will find what I have found — PEACE.

Was Liam Switched at Birth?

This kid is not mine! I know he looks just like me with his round, blue eyes and fair skin, but he talks. No just two year old babbling, Liam communicates! Even with gestures like finger waving when his brothers have bop him over the head and long sentences about friends at school and what he wants for dinner.

Other people even understand him; I don’t have to interrupt every single word that comes out of his mouth. I have been repeating word for word what Tristan (son #1) and Dylan (son #2) have said for the last six years... now I just stand next Liam as he belts out 1,2,3,4,5,6,7,8,9, and 10 and everyone understands him.

Tristan (son #1) has autism and Dylan (son #2) has a speech delay, so getting a kid that was meeting all the developmental milestones was highly unlikely with our gene pool. Oddly enough Liam is text book two year old (over the past seven years I have memorized all the “expert” parenting books), huh… I don’t understand how this happened.

So this is what it is like when your kid is “typical”, you play and talk about school and friends and what to make for dinner. You mean I don’t have to guess what you want for dinner or what clothes you want to wear or try to understand why you are crying. This is a strange world to me— no picture boards are needed and Liam tells me what he wants, no guessing.

Last weekend I dragged out the seven year old flash cards that I bought for Tristan (before diagnosis) because that was what “good” parents do, right?...quiz your eighteen month old about what they see on the card. Well, I have had years of failed attempts which ended ninety percent of the time with Tristan or Dylan eating the flash cards.

So, the flash card have been on the shelf with all the craft supplies (another lost cause) and I thought why not, Liam is clearly beyond eating them so why not try to expand his mind. Guess what? Liam loved them and carried them around saying what was on the card. For years I had listened to my friends discuss the development of their children and Tristan and Dylan never fit their descriptions.

It also seemed like my friends (no offense) would worry about the smallest things like whether or not to give their precious two year old Tylenol when they were teething or what kind of bathing products to use. But I guess when you are not anxious that your two or even three year old has no functioning communication those are the things to fret over.

This parenting thing is easy (I mean for the typically developing kiddos)— no speech language pathologists, occupational therapists, play therapists, special educators, and psychologists daily, tramping through my house. I say a new word and Liam repeats it and seems to understand it. Wow, this is like having a first born child again… I mean totally different from the last two. I wonder, am I qualified to raise a child with no developmental delay? Well, I guess we will find out; what a great adventure I am on.

Free Yourself

"1, 2, 3, 4, 5" Liam counts and then jumps from the dining room table into my arms.


"Mama, more please?" shouts Liam.

"OK, one more time, then no more jump." I say with my best "I mean business" look.


Most use their dining room table to lay out their best linens and grandma's china and of course practicing eating without drooling, but not us. We do sit and eat every meal at our dark, wooden, eight seater, but through out the day the boys could be standing side-by-side on the table performing the song "open shut them" or sliding to the tunes over the radio.


We do have rules and expectations for our children like no feet on the table while we are eating and everyone cleans their own dishes, but Peter and I have own guidelines to the stuff in our home:

1. We never buy anything that is not well produced and sturdy.
2. All the upholstered furniture can be machine washed or covers can be reasonably replaced.
3. We don't purchase furniture that we will cause a "great depression" (emotionally or financially) if damaged. We are saving our artisan crafted furniture buying for when our children have their own off-spring.
4. Finally, it has to look good! No frumpy, saggy hand-me-down furniture (when I was pregnant for the last time with Liam I drove all our furniture to the Salvation Army... more about this later).

I don't spend much time yelling at our three,"monkeys" about jumping on the couch or building a fort with the sofa pillows. Instead I can spend time encouraging their bonding and exploration while I get to sit back and check my email or Facebook page without feeling like I have to monitor the boys' every move.

Ask Angela

Ask Angela

The Ask Angela section is printed in th Parenting Autism newsletter every month, so send your questions to angela@parenting-autism.net.

I have recently received a bunch of questions regarding potty training. I am not a master at this, I am actually pretty lazy. I don’t push my kids and Dylan and Tristan were both potty trained after the age of four. However it didn’t take much time once they were ready. To prepare for potty boot camp I (or sometimes someone at school) created a picture board with the sequence of pottying. Since Dylan can be very sensitive to having his own stuff, Dylan’s teacher made a picture board with his picture and name.

So, in our bathroom we have two picture boards— one for Tristan and one for Dylan. In the beginning of potty boot camp I will explain that I am not buying anymore pull-ups and they will pee and poop in the toilet. I give them the rules and the directions to follow and if it is all done according to plan a reward is given.

Now, they follow each step without prompting or help (or reward). Having everyone involved in the potty boot camp is the key to success— school, family members, and etc.
With both Tristan and Dylan I thought they may enter kindergarten in pull-ups but to my surprise they potty-trained within a weekend without much effort.

The keys were: being ready, visual supports, and a good reward (and maybe enough laundry detergent). Good luck!

Begin with a Smile

Last week I was driving along the zig-zag roads that climb and descend the Green Mountains to a Build Your Family workshop that I was giving to a bunch of parents. During the drive I replay my six hour workshop in my head, sometimes quizzing myself about the sections and going through the possible questions I would be asked. I do all this to squash the fear that someone may fall asleep as I explain the need to come to an understanding of your own fears, anxiety, and sometimes even depression before you can truly move forward to preparing your child for adulthood.

After each workshop I give, I call Peter to report how many sleepers I had. To my credit I have only had one attendee fall asleep and that was a medical student during a lecture about autism. At this workshop the conversation turned hot when discussing IEP meetings and the attendees scribed pages of notes. So, I thought this would be a great topic for a newsletter.

I been to many workshops about special education law and the IEP process which I think are all valuable resources and information every parent with a child with special needs must become educated in. However, what I teach during my Build Your Family workshop revolves around behavior— your behavior and the school’s behavior. As a parent you have to know the special education laws to advocate for your child, but how you advocate can change the outcome.

First thing, the only person you can change is YOURSELF. You are going to be in a losing battle if try to change other people. However, you can change how you react to people.

When talking to folks about setting-up an IEP or team meeting, people will tell me, “Well, I have my folder on special education law and I know my child’s needs.” And I will say, “Ok, so what is the first thing you do when you walk in the room?” I always get the look, like “this lady is crazy.” How you walk into the room sets the stage for the entire meeting.

So, next time you have an IEP or team meeting, try my beginning meeting strategies:

• Get there early or at least on time.
• Leave your emotions at the door. Try to separate the emotions from the tasks at hand (I will write more about this later).
• Walk in with a smile on your face and look everyone in the eye as you greet them.
• Sit at the head of the table (you are the meeting facilitator).
• Bring a recorder and place it on the table and turn it on; so you can listen and engage everyone and still have “notes” from the meeting.
• Bring an agenda of the topics to be discussed (email then to the team in advance to have everyone able to participate and bring copies for everyone).
• Begin the meeting by thanking everyone for coming and working with your family.
• Ask everyone to stick to the topics on the agenda so you can finish the meeting on-time.

After the meeting, process how the other team member reacted to you, were they more or less responsive through out the meeting? Did you work toward bettering your child’s educational experience? Was there less or more struggle? Did you feel accomplished and heard?

Next week I will discuss other ways that behavior can dictate your IEP or team meetings.

Back on Track

Sorry I have neglected you again. I can make excuses, or show you my filled calendar, or plead for your forgiveness, but I think I won’t. You all know how it is when your household revolves around all your commitments and then at night when I should sit down at the computer and tell you about my latest adventure, I fall asleep! Right there in bed with a kid and a pile of allergy infested dust-mite collectors (Dylan’s loveys Snowy 1, 2, and 3), my only alone time taken by sleep.

Well here we are mid-February and currently no one in our house is sick, but that could change at any moment and by tonight we will all be praying to the porcelain throne. Since we veered into the realm of viruses I will add my tips to surviving a sick household.

• When you are healthy cook some chicken or turkey soup to freeze for the moments when your family has been kidnapped by germs (see recipe below).


• Buy an additional waterproof pad for the bed (not fitted). It looks like a waterproof top sheet that you can throw down on top of the bottom sheet. I find it especially helpful when I have already changed the sheets once and I don’t want to change them again. If you are lucky the vomit will stay right on the waterproof sheet and underneath is a clean, dry sheet.


• Keep a bottle of white vinegar and Borax in the laundry room. I don’t scrub or rinse. I just add a cup of white vinegar and a cup of Borax to the laundry detergent and wash with warm water. It will get out all the smells and stains.


• Stack-up old towels in an easy to access (when kids are vomiting) place, so you are ready for clean-up.


• Store a box of crackers in the pantry for the patients. It saves a trip to the store with sick kids.


• REST because if you don’t you will be the next to be feeling the pain.
  
  Angela’s Chicken Soup Recipe
  
  1 whole chicken
  3 cloves of garlic (chopped)
  6 stalks of celery (chopped)
  5 carrots (sliced)
  3 onions (chopped)
  1 bag frozen corn
  1 pint of mushrooms
  1 teaspoon tarragon
  1 teaspoon celery seed
  1 bay leaf
  Salt and pepper to taste
  1 tablespoon of lemon juice
  1 tablespoon of soy sauce
  
  Directions: Preheat the oven to 450. Place the whole chicken in a roasting pan and massage the chicken with olive oil and salt and pepper. Place the chicken in the oven for 1 hour to 1 ½ hour depending on the size; continue until fully cooked.
  
  Pick all the meat off the chicken and set aside. Place the bones and fat into a large pot and cover with water and ¼ cup of salt. Place on the stove on the highest temperature until it boils. Continue to cook for 2 hours (more if you would like) and add celery ends (leaves too), one carrot, one onion. Cook for another 40 minutes, then strain the broth out into a bowl and set aside. Compost vegetables.
  
  Place the large pot back on the stove on a medium/high temperature add olive oil and sauté 2 onions and 3 garlic cloves until light brown. Then add carrots, celery, mushrooms, and corn and simmer until cooked. Add tarragon, celery seed, bay leaf, salt, and pepper to vegetables and stir. Then add the reserve broth, lemon juice, and soy sauce and simmer until warm. Serve or store in the freezer.