The special needs hidden handbook

Blog introduction

2015-09-04T18:28:00.000-07:00

This blog is dedicated to all parents that have children with special needs; specifically those parents who have a child/children who has recently been diagnosed with special needs. It has been my personal experience working with parents of recently diagnosed child/children who inspired me to write this blog. Many parents don’t know where or who to turn to for help when their children are first diagnosed. When a situation like this arises people often turn to friends in similar situations for help, but what if you don’t have any friends in the same situation?

Do you or a friend of yours have a child with special needs and feel that there has to be help out there but don't know where or how to find it? Then this maybe the site for you. Aside from providing parents with general information I want parents to come here to converse, to share experiences, to specifically ask me questions. I may not know the answer to all of the questions; however I am determined to use all of my resources to find the best solution possible for your individual needs. The question isn't "does help exist?" its "what help exists and how can I get it?”

I directly help parents and provide them with information a daily basis. The goal of this blog is to provide parents with a simple to understand format and that is the goal of this blog. This blog is meant to serve as a guide for parents with special needs and designed to help parents effectively navigate "the system" by empowering parents with information. That is why the blog is entitled the Special Needs Hidden Handbook (snhiddenhandbook).

If you like the sound of the content please continue reading via the categories link in the right column, follow via email, comment on the forum or share with your friends with the social bookmarking buttons below each post by clicking on the buttons.

Community Calendar

2011-10-07T23:42:00.000-07:00

Please everyone come check out the community calendar that I've started by clicking here. The link will be on this page and also as a tab at the top of the blog labeled "Calendar". I figured out a way that anyone (with a gmail account) can add to the calendar. Feel free to follow the link to add events yourself by clicking here If you do not have a calendar than please email me at snhiddenhandbook@gmail.com and tell me the information about the event (please be as thorough as possible so parents will be able to take advantage of the event like the location and times) and I will be glad to add it to the calendar. I want this to be a community calendar, one that families can look at and know what different activities the community has to offer. There are often many activities available just not many people know about them and that is something I want to fix. I have posted about a few of the lesser known community activities like the sensory friendly films or Special Olympics.

This calendar is a work in progress and doesn't have many activities up on it, though with time, and everyone's help I am hoping that will change.

I'm not a mechanic.

2011-10-03T13:42:00.001-07:00

Recently I moved to a new town and have been meeting a variety of new people. During the getting to know you pleasantries, someone always asks what I do. The conversation usually sounds something like this:

Stranger: So what do you do?
Me: I am a speech-language pathologist.
Stranger: Blank stare…Wait like a speech teacher? You fix kid’s lisps and make people who stutter stop stuttering. I used to have a speech teacher. I couldn’t say my r’s. Is that what you do?
Me: A little but I actually work more with kids that have developmental disabilities, like autism or cerebral palsy.
Stranger: (slightly confused) You can fix kids like that?

And this is where the conversation gets hard. I know what the good natured stranger means. And yes technically my training as a speech language pathologist has taught me techniques to help teach children skills that will help remediate speech and language difficulties often associated with these and many other developmental disabilities. Yet, I can’t ever in good conscience answer ‘yes’ to this question. To say ‘yes’ would imply that children with disabilities are somehow broken. You can’t fix a person like you fix a car. A child that learns to communicate verbally is no more or less ‘fixed’ than the child who no longer speaks with a lisp or the individual who has just learned to point. Speech-language pathologist cannot change who your child is. We do not increase or decrease their general awesomeness. All we can do is teach them skills that will hopefully allow them to communicate with those around them in the most effective and efficient way. We, speech language pathologists, cannot fix what is not broken… but when we do our job right, we just may get to enhance.

-Megan, M.S., CCC-SLP

My Holland

2011-10-01T12:53:00.001-07:00

Many of you are likely familiar with Emily Perl Kingsley's amazing essay, Welcome to Holland in which she writes about her journey as a mother of a child with a disability. Today's guest blogger, Jess from Diary of a Mom, adores the essay but says that it doesn't always tell the whole story.
Jess says, "I have to acknowledge that the beauty of this life doesn’t exist without pain. BUT, neither does the pain exist without some beauty.”
The following is from Jess's post, My Holland, originally posted on Hopeful Parents, Oct, 2010.

There are the days that I wouldn’t trade Holland for the world

The days that I stand in awe of the windmills’ quaint majesty

And marvel at the overwhelming beauty of the tulip fields

There are the days that I scoff at Italy

The days that I feel downright sorry for those who have never been to Holland

Never wondered at the beauty created by Rembrandt’s brush

What they are missing here, I tell myself

Poor souls!

How much richer they’d be for a visit someday

For a walk in these wooden shoes

And then there are the days that I look more closely at the Dutch landscape

The days that I see past the tulip fields to the mothers wringing their hands, waiting – always waiting

... Continued HERE

Out and Abouters (Oct flyer)

2011-09-27T09:32:00.000-07:00

Below is the latest email from Caroline Musslewhite one of the organizers of the out and about group. If you have not signed up for her emails and are interested please be sure to do so at....

Caroline: carmussel@cox.net

Krista Howard: Kmhoward22486@cox.net

Out and About

Out and About is a Community Group for people who use augmentative communication, their families,
friends, therapists, and mentors

Westside Group Meeting

We welcome AAC users of all ages, using any communication device or language system

What: We will have a treasure hunt, play games, play in the water, and share snacks!
When: Thursday, October 6, 2011 4:30 – 6:30 pm
When: Goodyear Community Park

3151 N. Litchfield Road (NE corner of Litchfield & Avalon Dr)

Items to Practice:

Prepositions: under / in / at / beside
Nouns: park / table / slide / backpack / bathroom / swing
Verbs: look / get / find / help
Combos: I like / I don’t like; I see; Where is; It is
Comments & cheers (yikes / go go go! / bummer / cool /awesome)

Bring a snack to share! Bring a swimsuit & towel if you want to play in the fountain!

Please contact Caroline at carmussel@cox.net for more information.

Welcome to the club

2011-09-27T06:43:00.000-07:00

My dear friend,

I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.
When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.
You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.
You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.
You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.
You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.
This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.

You will be OK.

And I will be here for you. Every step of the way.
With love,
Jess
Originally written and posted by Jess at "a diary of a mom"

Camp Camp

2011-09-23T12:59:00.000-07:00

We think it’s time for my son Alex (13, PDD-NOS) to spend more time away from his parents because A) he seems to want, as best as we can tell, to spend more time away from his parents; and B) We want him to spend more time away from his parents.

Other efforts aside, we recently again sent Alex away to a sweet week of overnight summer camp.

“Camp? Camp?” he started saying days ago. “Camp?” he said as we took him to visit his younger, typically developing Ned at the overnight camp where Ned spent nearly a month this summer. We took Alex up there and he ran around the plywood hallways and through the screen doors; he rooted under Ned’s bunk for the green backpack that Alex himself has always taken to camp. He seemed to want to bring it home. “Camp? Piano?” Yes, this camp of Ned’s had a piano, which Alex glimpsed last year.

Ned went to camp several days before Alex. “Time to get Ned,” Alex kept saying.

This was Alex’s fifth year at his overnight camp, single weeks we’ve come to treasure for the unbroken sleep and the silent lack of Elmo. And all signs were positive at Alex’s bus pick-up. He sat and waited with my wife Jill while I stood in the endless line waiting to pass a ridiculously young person in a green T shirt his Baggie of respiration medicine. He waited in line without bolting, he said “piano” as the counselor strapped on the ID bracelet. “Do you have a piano at camp?” I asked her.

“We do!” she said.

He said good-bye to Jill; he waited for me at the bus door. “Daddy. Camp,” he said, kissing my arm. Then he vanished inside.

“Camp? Daddy? Mommy?” he said during his first phone call with us. It was much like a real phone talk. “How are you, Alex? Are you having a good time?” Hard to know if he was or he wasn’t, but he sounded reasonably stable. (Hard to know whose voice it was, too. “Do you think that was really Alex?” Jill asked after we’d hung up. “Do you think that was really Alex, Jeff? Why are you suddenly so quiet?”) A few nights later we call to speak to the young woman who’s shadowing him, his counsellor (We do!).

“He’s having a pretty good time,” she says. “We’ve taken walks down to the lake. He’s ridden horses, and today he said ‘Horse! Horse!’ He likes to run, but I keep after him. He’s turned on every light switch in the camp. I may have him call you in a few days,” she adds. “He’s been saying, ‘Daddy? Mommy? Bus...”

He’ll see that bus soon, and when he returns we’ll hear the Elmo and wake in the middle of the night or at dawn, and again we’ll fight the pressure to make any decision that sends him away for much, much longer. At least he did get to camp for a while, and for a special-needs kid -- and boy, especially for his family -- that's a diversion that I hope the budget cuts never take away.

Jeff Stimpson
Writer and speaker to educators and professionals
jeffslife.tripod.com/alextheboy
Twitter Name: Jeffslife
"Alex: The Fathering of a Preemie" (on Amazon and at academychicago.com) and "Alex the Boy: Episodes From A Family's Life With Autism" (available at vervante.com and on Amazon)

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Ensuring Success for Individuals with Special Needs

2011-09-22T13:01:00.000-07:00

Written by Maureen Bennie

Monday, 19 September 2011

Whether you are dealing with a recent diagnosis, transitioning a person to adulthood, starting a child in school, or are somewhere in the middle of these, it is important to ensure success for an individual with special needs. What can you do to help a person have the best life possible?

Here are some things to consider:

A Good Doctor – Having a supportive doctor who listens can make all the difference to a family. Find one that is knowledgeable at giving referrals to specialists for matters they can’t deal with, can see you quickly when problems arise, and can offer help with difficult problems from sleep disturbances to challenging behaviors. A doctor also needs to sign the Disability Tax Credit form (T2201 form).

Start a Registered Disability Savings Plan (RDSP) – Established in 2008, contributions to an RDSP can be made until the disabled person is 59. Read this blog post to find out more information.

Connect with a Support Group – A support group can be a great resource for information. It can also be a place to vent and not be questioned about why you feel a certain way. Talking to others in a similar situation can be comforting. You’ll meet people who have dealt with issues you are facing and can hear how they tackled them.

The Local Library – Libraries are more than just a great place to find books and other resources like DVD’s. Libraries can order in books they don’t have at their branch, offer free talks, and have community programs. Our local library offers the Story Pals program where reluctant readers practice reading aloud to a dog. This program has changed my daughter’s life –she has lost her phobia of dogs and her language skills have improved.

Establish Good Home/School Communication – During the school years, a child spends a good part of their day at school so it is important to know what is going on. Keep communication lines open between parents and teachers. Remain calm when things go wrong and try not to assign blame. Work as a team on issues that arise.

Attend Conferences and Workshops- Conferences and workshop opportunities are a great place to network and meet professionals, parents and learn about different resources. Hearing a professional speak about an aspect of special needs can broaden your information base and also provides an opportunity to ask questions face to face.

Get Involved in Community Activities – Participate in inclusive community activities so that the individual can meet their peer group and other adults. You can often make important connections in the community and find people for respite care, job opportunities or volunteer positions. Have a look at the book Get Out, Explore, and Fun for ideas on community outings.

Volunteer – Another great way to meet people and create another sense of community. Volunteer opportunities are available through organizations, sports groups, churches and community events. Read your local community circular or recreation centre brochure to find out where volunteers are needed.

Make a Will – Don’t leave things to chance. Consult with a lawyer who is familiar with will and estates and the implications around special needs.

Investigate Adult Services Early – Even if your child is not an adult yet, start investigating adult services. It takes a long time to become familiar with the paperwork and how to access services. Starting this process close to adulthood doesn’t leave enough time to connect with the right people or agencies.

Travel – Although a long trip with flights may not be possible, try shorter travel trips or even day trips. It’s important to see new things and learn to cope with new situations. Nowhere in life does everything stay the same.

Try New Things – Even though this can be stressful, change is what life is made of. Exposure to new things can create a new interest or passion. You won’t know until you try. A new experience may not go well the first time, but subsequent exposures may lessen stress. My daughter cried at her first Story Pals session, but by the third session she was really enjoying it.

These are just a few ideas to keep in mind. The bigger the community surrounding the child or adult, the more opportunity there is for success. People connected to an individual increases the likelihood that they will take an interest in their well being. The saying “It takes a village to raise a child” really is true.

About Maureen Bennie -
Maureen is the mother of two children with autism - Marc age 14 and Julia age 12. For 8 years, she managed an at-home Intensive Behavioral Intervention Program which involved working with speech pathologists, child development specialists, psychologists, occupational therapists, and physical therapists.

In June of 2003, Maureen, in conjunction with Vicki Harris, created the Autism Awareness Centre. As a director, she manages the Centre’s website, book division, communications, and assists with the planning and management of conferences the Centre organizes. The Centre has organized over 65 conferences in Canada and the UK and has provided book resource support at more than 60 events throughout Canada and the US.

Maureen is the author of over 100 articles and book reviews that have appeared in magazines, newsletters and on websites throughout North America and the UK. She is an active presenter throughout Canada on autism topics and the subject of book resources and how to use them effectively. She co-authored a book about adults on the autism spectrum published through the Autism Calgary Association.

If you like the sound of the content please continue reading via the categories link in the right column, follow via email, comment on the forum or share with your friends with the social bookmarking buttons below each post by clicking on the buttons.

Sensory Friendly Films

2011-09-21T14:37:00.000-07:00

Who knew? I just heard about this. What a great idea. This is a few select theaters that have a viewing of certain movies once a month that caters to children that have been diagnosed with Autism.

The following is a quote from the website

"The program provides a special opportunity for families to enjoy their favorite films in a safe and accepting environment. The auditoriums dedicated to the program have their lights up, the sound turned down and audience members are invited to get up and dance, walk, shout or sing!"

The schedule for the next 2 months

October 1 - Dolphin Tale

November 5 - Puss in Boots

All shows are at 10:00 am local time.
*Dates and films are subject to change.

To learn more just follow the link for Sensory Friendly Films.

Developmental preschool

2011-09-21T12:30:00.000-07:00

A common issue I find with my parents or friends that I have first notice there is an issue with their child. Many times it is grandparents that will alert the parents because if this is their first child then they don't know how children are supposed to develop (they have no frame of reference). So they notice the issue, are concerned but what do they do. They think their child would benefit from preschool but can not afford the services. If this fits your description you came to the right place.

Think your child is developing different than his friends?
Is your child about 3 years old?
Call your local school district and ask to have him screened (key words when talking to the school district is "developmental preschool"). The best time to have your child screened/evaluated is 3-4 months before they are 3 to allow time to be screened/evaluated and for the text results to return.
Areas the screen normally assesses

Physical
Gross/Fine motor

Jumping/holding a pencil

Speech

Depending on how he does on the screening he/she will be evaluated
Different test date is marked to be evaluated
Evaluation is longer than the screening and is just a more in depth assessment of usually the same areas of the screening though if there was nothing warranting, say gross motor then maybe they won't evaluate that.
After the evaluation the team has 60 days to score and decide whither or not he/she qualifies
If he/she does qualify then they may start preschool, if not then they will have to wait until kindergarten to attend (unless you want to pay for preschool)

Out and Abouters (Oct, save the date)

2011-09-21T09:16:00.000-07:00

Below is the latest email from Caroline Musslewhite one of the organizers of the out and about group. If you have not signed up for her emails and are interested please be sure to do so at....

Caroline: carmussel@cox.net

Krista Howard: Kmhoward22486@cox.net

This is just a 'Hold-the-Date' announcement.

The next Out & About will be on Thrusday, October 6th from 4:30 - 6:30.

I'm thinking that we should take advantage of the good weather. How about going to Goodyear Community Park (near the Y). The address is:

Goodyear Community Park

3151 N. Litchfield Road (NE corner of Litchfield & Avalon Dr)

We've had some really fun events there in the past, with scavenger hunts, treasure hunts, etc.

Let me know asap!

Caroline

What's an Individual Education Program (IEP)

2011-09-17T13:57:00.000-07:00

An IEP is what follows an evaluation. After the screening comes the evaluation and after the evaluation comes eligibility then IEP. “The Individualized Education Program (or IEP) lays out the school’s commitment to provide special education and related services to eligible students. Each eligible student must have an IEP in effect before he or she can receive special education and related service”

I like to remind my parents that the school is under federal law to provide these services therefore if they are not providing the services that the child on the IEP deserves/requires to make educational gains then they are breaking the law. Parents feel that the school and their employees are the ones in charge when they go the annual IEP meeting because it is held at the school and after all “they are the professionals”.

It is true that it is the schools responsibility to provide the services but it is the parent’s responsibility to ensure that the services are being provided. In a perfect world everybody would just do what is right but what happens many times is that people just do what is easiest. After all we are all just human, I am sure everybody at times does this however when the school is doing this the school and its employees are directly affecting your child and his/hers education.

My purpose in making this blog is to create a resource to empower parents with information so they will not become a parent that says “if I knew then what I knew now my child would be better off”. Those are heart breaking words, words that I do not want any of my parents that I work with to say and this blog is my feeble attempt to prevent those words from being spoken. Parents often learn the hard way how IEP’s work and therefore their children suffer.

Here is a pamphlet I found that has a lot of good general information about what parents should know if their child has an IEP. Also here is another short article that spells out IEP's and lays out some of the laws that parents need to know about.

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Optimistic Parenting

2011-09-14T15:06:00.000-07:00

Written by Maureen Bennie

I’ve just started reading Mark Durand’s new book Optimistic Parenting. Durand has studied the nature, assessment, and treatment of behavior problems in children with ASD. He has spent the past 3 decades working with individuals with ASD, their families and other professionals. He wrote this book to be a self-help guide for parents and suggests great strategies for children and parents. What I like about this book so far is the personal stories from parents. What they say and experience raising challenging children rings true – feeling guilty, no time for themselves, fear of what the future holds, frustration and exhaustion. How can you have a good life in the world of special needs? Early in the book, Durand talks about keeping a journal to gain insight into thoughts and feelings. This is a great way to discover what is really bothering you. Some things Durand found were: This will never get better or may become worse I will never have time just for me My child is doing this on purpose This situation is (someone else’s fault) for not handling it like I suggested It’s my fault there is a problem Why am I always responsible for my child’s behavior? Mothers tend to be much harder on themselves and often take the blame or feel they are being blamed by others for the problems their child has. We engage in negative self-talk and accept too much responsibility for the well-being of the family. We take on too much and try to function on our own. So how do you go from being a pessimist to an optimist? For me, feeling empowered changed my life outlook. I obtained this empowerment through reading books and attending trainings in the field of autism. The more knowledge I gained, the better I felt about my parenting situation with 2 children on the spectrum because I knew their challenges were not a result of my parenting. I also felt better equipped to deal with medical appointments, therapies, and dealing with the school. If you don’t know what questions to ask, it can be hard to get direction with solutions and coping strategies. Acquiring information also gave me valuable tools to help my children. I learned how to use visual supports, alleviate their anxiety, tackle sleep and toileting issues, and how to cater to their special dietary needs. When new problems arose, I felt confident that I would be able to address these knowing I would be able to find appropriate information through books and websites. I didn’t feel like I was at the mercy of waiting for the next therapy appointment to start working on an issue. I’ve blogged in the past about making time for just for you. Both parents need to do this. I took up figure skating at age 39 – no easy feat but the friendships I’ve made through this sport have been worth it. Skating is a challenge I do just for me. I set short and long-term goals, schedule practice time, and the mental benefits of regular exercise have kept my stress levels in check. Find something just for you and don’t feel guilty about taking time away from the family. You are a more effective parent for having done so. It is very normal to feel overwhelmed or sad, especially when a diagnosis is new. Even experienced parents still have these feelings from time to time. The beginning of the school year is always a challenge for me – new teachers and aides, new school, change of routine, and school expectations often cause feelings of despair. I know these will pass and talking to others about it helps me through the difficult month of September. What I think Optimistic Parenting can do for parents is let them know their feelings are shared by others and there are concrete ways to improve your outlook. The author allows parents to explore the dark side of parenting, but then offers do-able strategies on how to improve the situation. I was pleased to see a chapter in this book devoted to sleep issues, which I think is a huge factor in both a child’s behavior and quality of family life. No one functions well with chronic sleep deprivation. I never had more than 4 hours of broken sleep for 7 years which greatly affected my ability to make good decisions and tried my patience both at work and home. Parents who read this book will feel empowered to change things for the better and feel more in control. Changing our perception of a challenging situation can change the way we address it. The more tools and strategies you have at your fingertips, the better you will cope. No one has a perfect life and we don’t have to be happy all the time. Most people want to feel like they are doing their best and making the right decisions for their family. By addressing our negative side and thinking more optimistically, we can do just that. About Maureen Bennie - Maureen is the mother of two children with autism - Marc age 14 and Julia age 12. For 8 years, she managed an at-home Intensive Behavioral Intervention Program which involved working with speech pathologists, child development specialists, psychologists, occupational therapists, and physical therapists. In June of 2003, Maureen, in conjunction with Vicki Harris, created the Autism Awareness Centre. As a director, she manages the Centre’s website, book division, communications, and assists with the planning and management of conferences the Centre organizes. The Centre has organized over 65 conferences in Canada and the UK and has provided book resource support at more than 60 events throughout Canada and the US. Maureen is the author of over 100 articles and book reviews that have appeared in magazines, newsletters and on websites throughout North America and the UK. She is an active presenter throughout Canada on autism topics and the subject of book resources and how to use them effectively. She co-authored a book about adults on the autism spectrum published through the Autism Calgary Association. If you like what you read please feel free to follow to receive the latest posts to your email account or use the social bookmark buttons below to post to popular social sites like twitter and facebook.

But he has some words....

2011-09-13T11:21:00.000-07:00

AAC stands for augmentative and alternative communication. This commonly used acronym is an umbrella term that encompasses any mode of communication that is used to supplement or used in lieu of verbal communication. A person’s AAC system could be as simple as a letter board that he/she uses when a new communication partner cannot understand what the person said to an elaborate, high tech communication device accessed via eye gaze. Each individuals AAC system is different and typically involves different modes of communication dependent on situation and familiarity. This post could go on for pages if I tried to explain what AAC is or can be, but the first question we, the SLP and family, needs to ask is if the individual being serviced would benefit from an AAC system. The answer is yes, if the child is not able to meet all communicative function with a variety of communication partners in all settings. What that system looks like… well that is something to discuss with your child’s SLP, teachers, etc. For the sake of this post, I want to focus specifically on children with autism with some verbal output and if AAC is ever appropriate for these children.

In my opinion if your child is 3-5 years old and not yet using words spontaneously/independently, it is time to look into creating an AAC system for your child. This may take the form of PECS, a communication device, sign, whatever. That is something that you will determine based on your child’s abilities and family needs. What is important is that you think about getting something in place. I think that it can be obvious for many individuals that if your child is 4 and still not saying a thing that you may want to consider an AAC device. But what if your child is 5, and says ‘I want cookie’ when you bring out the cookie and say “What do you want?” Is that spontaneous/independent communication? I realize that you have probably worked really hard to get your child to this point and you should be proud of you and your child’s achievement! Your child is definitely requesting, but is relying on either the visual prompt of the cookie or the verbal prompt of “What do you want?” If your child has been at this place for a while, it may be time to think about an AAC device.

For whatever reason, many children with autism are better able to initiate requests and become stronger independent communicators with an AAC device. I don’t know if the device itself serves as a prompt to help the child initiate communication or I have read adults with autism say that the sensory experience of speech is not worth the end result so they communicate with devices instead. Whatever the case, it is important for you (and your SLP) to constantly be evaluating the type of communication your child is using and if he/she is truly able to express wants/needs and comments spontaneously and independently. If not, bring up the possible need for an AAC system/device to your therapist and see what he/she thinks. You know your child best and will forever be their biggest advocate. Make your SLP think and consider all options… we want what’s best for your child too. Sometimes we just may need help seeing what that may be!

-Megan M.S. CCC-SLP

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Welcome to Holland

2011-09-10T17:20:00.000-07:00

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very
lovely things ... about Holland.

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(AAC) in the community (Sept)

2011-09-08T13:16:00.000-07:00

I just caught wind of an outing that happens I believe once a month that is specifically for people who use an Alternative Augmentative Communication (AAC) device. It is called "Out & About" and the contact information says to contact Caroline Musselwhite or Krista Howard. It is my understanding, thus far, you must contact one of these two people to get on their "Out & About" email list.

Also I found that she has a lot of additional resources if you Google her name.

Caroline: carmussel@cox.net

Krista Howard: Kmhoward22486@cox.net

There is an activity this next Thursday (9/15/2011) with the flyer information below:

Westside Group Meeting

We welcome AAC users of all ages, using any communication device or language system

What: We will have a scavenger hunt!!
When: Thursday, September 15, 2011 4:30 – 6:30 pm
Where: Desert Sky Mall – Food Court

7611 West Thomas Road

Items to Practice:

Attention Getter: Excuse me. Hello!
Question: Do you have _______? Is it?
Thanks: Thank you. Thanks so much.
Comments (wow / rats / yay / bummer / cool / awesome)
Closings: Thanks/ that’s all / goodbye)

Bring money for a snack if you want

If this sounds like an activity you are interested in participating in then be sure to email Dr. Caroline Musselwhite or Krista Howard and ask to be put on the "Out & About" email list.

Any additional information that you might know about that I have not posted but can help other families please post the information in the forum. You can enter the form by clicking here.

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City based services

2011-09-08T12:50:00.000-07:00

I did some digging and found the adaptive recreational parks and recreation sites and contact information. Turns out, as far as I know, the only cities that have adaptive recreational activities is Surprise, Peoria and Glendale. I was surprised when they didn't mention the east valley. I am sure there is stuff over there and as I find it I will post it. I will make a post about each city, their contact information and the current information I have about their program. I love the programs that are offered, though there is usually a minimal cost.

These adaptive programs are just like the normal programs cities offer just adaptive to fit the needs or children that have needs that are special. It is great for parents and caretakers to go and watch/participate in activities with your children that they might not get to do normally. It is also a great way for families to connect with one an other, to network and build friendships.

This is one place that you can go to where your child is not the "different one". Not only is he not the "different one" but the program is built around him/her. He/she is the star. And please read all the posts in the different cities about their adaptive programs because if a different city offers something you think you and your child would be interested in you are allowed to attend. Do not think that the city boundaries mean people in other cities can not attend.

Any additional information that you might know about that I have not posted but can help other families please post the information in the forum. You can enter the form by clicking here.

Glendale's Adaptive Recreation Program

2011-09-08T12:47:00.000-07:00

The city of Glendale also has an adaptive recreation program though I was told that Peoria actually hosts much of their program. Something that parents love about the Glendale program is their theater and bowling. I don't think bowling is all that unique but the theater program is. And don't forget that you are allowed to attend different cities adaptive recreation programs.
Glendale also has a newsletter and a magazine. You can email the contact person below or you can go to their site and read it which is a nice addition.

Katherine O'Connor

Recreation Coordinator

Glendale Adult Center

5970 West Brown Street

Glendale, AZ 85302

(623) 930-4333

koconnor@glendaleaz.com

Any additional information that you might know about that I have not posted but can help other families please post the information in the forum. You can enter the form by clicking here.

The city of Surprise's Adaptive Recreation Program

2011-09-08T11:10:00.000-07:00

The City of Surprise has an Adaptiverecreation program and I have personally taken part of some of their events as a volunteer. The families that take part love the program and think it is probably the best of the programs.

The contact information is below

Joe Gladieux at 623.222.2257

recreation@surpriseaz.com

The city of Peoria's Adaptive Recreation Program

2011-09-08T10:52:00.000-07:00

The following link will take you directly to the city of Peoria's Adaptive Recreation Program. Half way down the page there is a link that will allow you to download the most recent newsletter that I believe is published quarterly. You can also contact Jodi Roth-Jones who was very helpful. You can ask her to be put on the newsletter email list to tell you about all the upcoming activities.

Jodi Roth-Jones, CTRS

Adaptive Recreation Coordinator

Community Service Department

City of Peoria

Office Location: 8335 W Jefferson, Peoria, AZ 85345

623-773-7719 (direct line)

623-486-8501 (fax)

Mailing address: 8401 W Monroe, Peoria, AZ 85345

jodi.roth-jones@peoriaaz.gov

Forum

2011-09-05T22:24:00.000-07:00

Please don't forget to check out the brand new forum feature of the blog. Everybody can interact with each other and learn collectively which can be done by clicking the add "new topic" button, then you can freely post about anything you would like. The forum is at the top of the home page and is labeled "forum" or just click here.

Department of Developmental Disabilities (DDD)

2011-09-04T18:27:00.001-07:00

Here is there website.

If you are new to all of this than probably the first thing you want to do is to "apply for DD services" here.

Just click apply.

If you have any questions regarding DDD please post them on the forum. To enter the forum click here.

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What to do once DDD has accepted my application

2011-09-04T18:26:00.003-07:00

Once you have been approved through DDD you will be issued a support coordinator.

What is a Support Coordinator (SC)

2011-09-04T18:26:00.001-07:00

What is a support coordinator and what is their purpose? A support coordinator is what the name implies they are to coordinate support. All to often however this is not the case, they often can be more of a hindrance than a support. I do want to say that it is not entirely their fault (they are often overworked) and because of this it is important to send them frequent reminders of things that they said they were going to do.
These people are government issues workers sent to manage a case load of individuals with special needs. They do not only monitor their current developmental levels and report it they are there to inform the parents of other services that your child could possibly benefit.
Listed below are the "Do's" of a support coordinator

problem solve with the parents of current needs
discuss how these needs can be met
make a plan on how these needs will be met

Listed below are the "Don'ts" or "are not supposed to" of a support coordinator

Show up late (that is not within reason)
Spend the first half hour recapping the last visit and the next half hour discussing things they should know about your child.
find excuses not to provide services for your child. They should be advocating for your child not against. Unless the request is legitimately not appropriate.

A few tips to know whither or not you should keep your support coordinator if they:

Provide suggestions of possible services
Provide the services that were discussed
Ask you how your current services are doing
Keep you (the parent) updated on the status of requests
Come to their meetings every 3 months (like they are supposed to)
In general care about the parents and realize that they are new to the processes and help them along.
If they are hindering more than helping then call their supervisor and request a new one.

Remember these support coordinators are to coordinate support and if they are not doing so than they are wasting everybody's time most importantly your child's.

Common services that are provided through the government that you must ask your support coordinator are listed here.

For additional questions please post them on the forum. To enter the forum click here.

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Which company should I choose to provide services?

2011-09-04T18:25:00.001-07:00

How to chose a service provider agency. What company do you want to chose to provide services for your child? You may have never thought of this or thought that it wasn't important. I will explain why it is important and that not all companies are the same.

Lets start off with some basics of how an agency works. These services are federally mandated meaning the government is paying to have these services. So they pay an agency which then pays the employees just like any business. Now these rates are static, the can change year to year but typically stay the same. These rates can be looked up on the Department of Developmental Disabilities website but then the company decides how much they want to pay their employees. These employees only are required by the state to have I believe a high school diploma and must be over the age of 18. Some companies start their employees out at a low flat rate and some at a higher flat rate. The ones that pay a higher rate usually require more like more education or experience and the ones that pay a lower rate require less from their employees. Having said just that which would you choose?

How does a company help you choose your provider?
A company is paid only if their service providers are providing services. So it can sometime seem like the mentality or the thinking process of some of these companies is like the following.

Company needs money --> We have providers that need hours --> So have the providers call the parents

Doesn't seem like to flawed of a model does it? Not until you realize how many people there are to choose from meshed with availability. When those are factored in the number of valid applicants go down. So a better company uses the following model.

A new family started with the company ---> Lets visit the family to get a feeling for their needs --> Now lets filter through our available providers who might fit what the parents want (personality, gender, availability etc.) --> After they narrow down the list to the the best fit candidates the company has them call you

This small extra step might seem trivial but it really does make a difference and helps the parents avoid the feeling "is there anyone out there that can help?".

Why does employee pay a factor to consider when choosing an agency?

One more item to consider when choosing an agency is how much they pay their providers. This may not seem important but there is a relationship between how much they pay and their expectations. The more they pay the more they expect, not just in performance but in other factors like education and experience which are not technically qualifiers for the position.
So the 2 things parents should ask when choosing which agency to allow to provide services for my child are

How do you help me choose a provider?
How much do you pay your providers?

If you have further questions please post them in the forum. To enter the forum click here.

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