Washington Autism Advocacy Group

Washington Autism Advocacy(WAA) is a grass roots state-wide coalition of families with children affected by an autism spectrum disorder.

WAA has become a leading voice in the rights of children with autismin Washington state. Our members come from all walks of life and with many experiences, but one core belief binds us together – that ourchildren deserve to be given every opportunity to become productive members of our community.

Over the past two years, WAA has introduced legislation focused on effectively supporting children with autism.

WAA has been instrumental in passing two critical pieces of legislation supporting autism including "Honoring Individuals with Autism - HR 4697 SR 8724"and "SSB6743 Regarding Training and Guidelines for Teachers of Students with Autism, and the Educational Guidelines for Parents andEducators of Students with Autism."

Our 2008-09 legislative agenda focuses on bringing Autism Insurance Parity(AIP) to Washington state. For updates on AIP visit our website http://www.washingtonautismadvocacy.org/

To learn more about the WAA, thier work and how you can help please visit thier website and sign up to get the legislative updates andhelp where you can!

http://www.washingtonautismadvocacy.org/

Planning for your IEP

IEP's for many of us are anxiety building and not an experience that we feel that we have much say in. With standardized goals that are computer generated can make parents feel like making a change to those goals are impossible. However that is not the case. Handwritten changes to the proposed IEP Goals hold the same importance as the type written ones- So here are some tips for getting your IEP Homework done before your meeting...

1. Ask your child's teacher what assessments are being done?
Did you sign a release for those assessments? Do you disagree- you can ask for an independant assessment at public expense. Make sure to request this in writing. A new law says that parents must consent to any assessments being done.

2. Ask for the Evaluation Reports at least One Week prior to the IEP Meeting.
Make sure to review them so that you are prepared to discuss and plan for the meeting. This will help you: a. identify goals for the meeting; b. review accomplishments of the last year; c. identify what you hope your child will learn in the next year; d. identify specific difficulties or strengths to bring to schools attention; e. if you want full inclusion or increased integration identify how and in what settings your child already interacts with children who do not have disabilities; and f. list any successful experiences or strategies that have been used out of school.

3. Review your feeling and desires regarding Inclusion:
The law says that to the maximum extent appropriate, as decided by the IEP Team (you are full equal member) children with disabilities shall be educated in their neighborhood schools and attend regular classes with supplemental aids and services. Today, many researchers and parents believe all children with disabilities can and should be fully included in regular classrooms.

4. Make a List of the points that you want to raise at the IEP Meeting.
Many parents get nervous or distracted at a meeting with several professionals. Thus it is good to make a list of points and questions in advance so that you dont forget. You can check off points are they are discussed and jot down answers to the questions.

5. You can bring anyone you feel is important as long as they have "knowledge or special expertise regarding the child".
These people have knowledge that will be helpful in developing a good IEP. They can be a day-care provider, grandparent, tutor, behavior specialist, or anyone you feel is important.

6. Discussion of Present Levels of Performance
Present informal and formal observations based on your experience. These are things that you can list on the IEP. Remember that this document will be shared with next years teacher and it is important that they know skills your child has and does not show until they are comfortable.

7. Decide on 2 annual goals for your child.
Writing goals is difficult. Think about what you want your child to be able to do by the end of the school year. Make sure that your goals can be taught in the classroom that the parent feels is most appropriate for their child. For example, if you want your child to have greater inclusion or full inclusion, then you should request goals that including interaction with non-disabled students, e.g. "Molly will learn to take turns by playing a game with non-disabled peers."

8. Make a list of supports that they think your child needs.
The district must provide supplementary aids and services to accommodate the special education needs of students with disabilities in integrated settings including (for example) a trained aide, use of a tape recorder or assistive device, an inclusion specialist to help the regular education teacher modify curriculum or a behavioral plan to address the need for behavioral supports. Look at the list of accommodations currently provided and brainstorm what others might be appropriate if needed.

9. Make a list of services that you want for your child and why you want them.
All related serives and related service providers, such as Speech Therapy (SLP) should be identified including frequency and duration. The parameters of the placement should be clearly stated. Parents do not have the right to require the district to provide services from a particular person in a particular classroom. However it does not hurt to ask to be included in the decision on who will be working with your child. Specific placement options should be discussed at the IEP meeting.

10. Your signature on the document
The absence of your signature on the IEP does not necessarily preclude the school district from moving forward with your child's IEP. However, pare tn do not need to sign the IEP at the meeting- you can take it home to discuss with others and think about it. Parents can consent to only part of the IEP so those services the parent agrees with can begin. Know that you can withdrawal your consent by writing to the special education administrator. If you and the district disagree on services, the last IEP remains in effect while a due process hearing is held.

11. Progress Reports
Regular progress reports are required but you can help decide what they look like. Think about what type of communication you are looking for and why. This makes it easier for the plan for reports to go from one teacher to the next.

These tips should help you feel prepared for your IEP Meeting. Remember you are your child's best and consistent advocate and your ideas and suggestions hold as much weight as the "professionals"!

Good Luck!

Positive Behavior Support-At Home

As we are getting ready for Kindergarten I have my own anxiety about how the teachers and school will deal with behaviors that arise out of Harrisons Anxiety and Autism. I have been doing some reading on Positive Behavior Support and how it is used in schools and at home. I plan to post some information from the University of Kansas as they have some great info on the subject! So here is the first installment on Positive Behavior Support dealing with home life. (thought that this was appropriate as we are on summer break right now). Also I know that most new skills and behaviors are tried at home first before used in functional settings like schools, the store, and other places. Let me know what you think. Here we go:

From website: www.beachcenter.org

When a child shows challenging behavior at home, traditional disciplinary approaches used by parents have relied on negative consequences, such as punishment. However, Positive Behavior Support (PBS) can provide a new way of looking at, thinking about, and solving difficult situations caused by challenging behavior. One of the main problems with negative consequences is that they don't teach appropriate behavior. Although punishment can stop a child's behavior immediately, it doesn't teach new skills that replace the problem behavior with more appropriate, positive behavior. PBS focuses on positive and educational approaches rather than negative consequence-based methods. Understanding the child's behavior is the first and most important step. To understand a child's behavior, it is recommended that parents observe challenging behavior carefully and think about the meaning of the behavior because every behavior occurs for a reason. In most cases, the child behavior serves as a communication tool, sending everyone a clear message about the child's feelings, physical status, and needs. The message of the child's behavior is called the "function" of the problem behavior.

Function of Behavior and Functional Behavioral Assessment (FBA). A Functional Behavioral Assessment (FBA) is the process by which we engage in detective work in order to find the meaning contained in the message (function) that the child is communicating about her/his behavior. In other words, FBA is all about answering the question, "Why does a child keep doing the challenging behavior over and over?" The FBA provides the following information to help answer that question.

What is the problem behavior?
What does it look like?
When does it happen?
Where does it happen?
Are there any home or community routines when the problem behavior seems to consistently occur?
What people (family members, friends, neighbors, community members) seem to be involved in the problem behavior when it occurs?
What do people say or do, or what happens immediately BEFORE the problem behavior occurs?
What do people say or do, or what happens immediately AFTER the problem behavior occurs?
What are people's reactions right after to the problem behavior occurs (e.g., do they give the child lots of attention, do they give him/her items or objects that he/she wants, do they stop asking him/her to do something, do they take things away from the child, do they ignore the child)?
When these questions are considered carefully and the answers connected to each other, it is possible to make a "best guess" about a function of behavior. We call this "best guess" a hypothesis (or a hunch) about the possible function of the child's problem behavior. There are several functions of behavior—both "good" and "bad" behavior. In general, these are the functions of behavior:

Getting or obtaining attention from peers, family members or others
Getting or obtaining a desirable item or an object, or gaining access to a preferred activity
Getting or obtaining desired sensory input, feelings, sensations or physiological stimulation, such as by touching things, moving the body back and forth, tapping one's leg, smelling things, or tasting/mouthing things
Avoiding or escaping unwanted attention from peers, family members or others
Avoiding or escaping non-preferred items or objects, or difficult tasks and/or non-preferred activities
Avoiding or escaping unpleasant, or unwanted sensory input, feelings, sensations or physiological stimulation, such as by hitting oneself, scratching oneself, or engaging in other self-injurious behaviors when something hurts, feels bad, is uncomfortable, etc.
A-B-C Chart in Functional Behavioral Assessment (FBA). The A-B-C chart can help summarize the sequence of events around the challenging behavior. A, B, and C stand for the antecedent, behavior, and consequence of the challenging behavior.

Antecedent: An event that happens immediately before a challenging behavior. This can also act as a "fast trigger" for the challenging behavior
Behavior: Challenging behavior
Consequence: An event that immediately follows the challenging behavior.
One additional factor to consider is what is called a "setting event." A setting event can be an important clue to investigate in order to reduce or eliminate the challenging behavior.

Setting Event: Events or circumstances that affect the likelihood of the challenging behavior occurring at a later point in time.
Sometimes we think of setting events as those events or circumstances that act as "slow triggers" and set the stage for a behavior to be more (or less) likely to happen subsequently. Common examples of setting events may include illness, lack of sleep, or a stressful experience. When the setting event seriously affects the challenging behavior, the challenging behavior is not always totally related only to events that happen immediately before or after the challenging behavior. For example, think about a child who has a painful headache and shows tantrum-type behavior because of the headache. No matter what antecedent precedes the behavior, the child might show tantrum-type behavior until the headache goes away.

The following figure shows an example of an A-B-C chart, including a setting event.





In this example of the A-B-C chart, Arnold's challenging behavior resulted in a time-out. Arnold's mom considers the time-out a punishment; however, this consequence actually may make it more likely that Arnold will engage in the same problem behavior again next time. Why? Recall that Arnold's challenging behavior started to occur when he was told to do his math homework--something he does not like to do, nor does he know how to solve the math questions required in his homework assignment. He got punished because of the challenging behavior, yet at the same time by engaging in the problem behavior, Arnold was able to avoid doing his math homework. Even though his mother thought she was punishing her son, Arnold was allowed to escape/avoid doing a really unpleasant and highly non-preferred task….and he was actually reinforced by getting to avoid this task. The function of his problem behavior was to escape/avoid doing this unpleasant task, and his mother actually helped him avoid doing his homework by "allowing" him to go to time-out for the behavior. Next time, he is quite likely to engage in the same problem behavior again, because he knows this is a way that he can successfully get out of doing his math homework (unless, of course, his mother is clever enough to require him to return to complete at least some of his math homework, after his time-out is over!).

Thus, A-B-C chart allows us to discover the function of behavior more conveniently. This approach is also applied extensively in school settings to reduce challenging behavior ("Individual PBS" in school settings).

Pre-School Graduation

I was so proud to have these photos. Harrison is excited about going to Kindergarten in the Fall. My little guy is no longer a "toddler" he is a "school age" child- when did that

happen?

There is Something about a Yardsale Scooter

WE found this wonderful scooter at a yardsale for $1.00. Harrison love to ride it and is now more daring than ever on it.

10 Tips for Ending the School Year by Pat Howey, Advocate

Print this page
1. Visit the new school or classroom.
Will your child make a major transition next fall? Will your child be moving from preschool to kindergarten, from elementary to middle school, or from middle school to high school? Plan to take your child to visit the new school or classroom before the first day of school.

2. Review your child’s IEP and progress.
Did your child make progress this school year? Did the school properly implement the IEP? Does the IEP adequately address your child’s needs? Do your child’s Goals prepare your child for further education, employment, and independent living?

3. Ask for an IEP Team Meeting if necessary.
Did you answer “No” to any of the questions above? Ask for an IEP Team Meeting to resolve these concerns. Do not let another year go by with an inappropriate IEP.

4. Prepare for the IEP Team Meeting.
Prepare a list of your child's present levels of performance. The list includes you child's strengths and the areas that are challenging. Look carefully at this list and you will better understand what your child needs. Add these needs to your list of present levels of performance. You can also add Goals, Related Services, Assistive Technology, and anything else that your list justifies as an educational need.

5. Say "Thank You" to those who helped.
Did your child have a great school year? Was this success due to a wonderful teacher, a helpful classroom aide, or a thoughtful bus driver? Say “thank you” to those who helped your child succeed. Look at what made this a good year for your child. Add that information to the list of your child’s present levels of performance.

6. Give your information list to the IEP Team before the meeting.
Do not surprise other members of the IEP Team. At least one week before the meeting, give a copy of your list to each member of the IEP Team. Take extra copies to the meeting for anyone who forgets to bring their copy. Your IEP Team Meeting will go faster and smoother if everyone has your list ahead of time.

7. Ask for a copy of any information that has been given to other members of the IEP Team.
You do not want to be surprised. Ask for copies of all information the IEP Team will discuss. You cannot be a full team member if you are left out of the loop. Ask for things like copies of teacher reports, evaluation reports, and group achievement testing.

8. Ask the IEP Team to address Extended School Year (ESY).
ESY Ask the IEP Team to address ESY early in the second semester. If there is disagreement about whether your child needs an ESY, you will need enough time to resolve this with one of the due process procedures available.

9. Find out what summer educational resources are available for your child.
An ESY is not the same as summer school. Summer School is usually a generic program that is not designed to meet your child’s individual needs. An ESY program is intended to meet the specific educational needs of your child as identified in his or her IEP. Make sure you know what services the school is offering!

10. Determine whether your child needs a new evaluation.
Does your child need new evaluations? Are you unsure whether your child has made adequate progress? Achievement testing at the beginning and end of every year will give objective answers about your child’s progress. (See Chapter 8, Your Child’s Evaluation, in Wrightslaw: From Emotions to Advocacy, 2nd Edition).

Harrison's First Trophy

I was so proud last night. Harrison played Soccer through a special program called TopSoccer where kids with disabilities are given buddies and taught the basics of soccer. It was so cool to watch. If I can find a tutorial on uploading to UTube.com then I will get some game footage and the awards ceremony up for all to see. Our little guy is growing up!

Interesting information on Service Animals

Dog Denied Spot At Autistic Boy's School Animal Is Service Dog, Boy's Family Says tinyurl.com/3msghz

Manteca, Calif. -- A dog that assists an autistic preschool student was denied entrance Monday at the boy's school, the child's mother said.

Jayden Qualls, 4 ½, tried to attend his first day of school Monday at McFall Preschool in Manteca, about 70 miles east of San Francisco. Qualls' family said he needs Houdini, a 2-year-old male Labrador retriever shepherd mix, to help him walk, reported KCRA-TV in Sacramento. Tara Qualls, the boy's mother, said the school's principal made the decision not to allow the dog into the school.

School district officials said they need to determine if Houdini is a service dog or a companion dog. They also need more time to find out if the dog is warranted at the school and if so, how he fits into the flow.

The Americans with Disabilities Act gives Jayden the right to have Houdini in school, Qualls said.

Jayden's parents bought Houdini for $13,000 from a nonprofit called Autism Services Dogs of America. The dog helps their son with walking, staying alert and emotional outbursts, they said.

There are 125 students at McFall Preschool with developmental disabilities, including autism, the San Joaquin County Office of Education said.

One Giant Step Forward!

Have you ever felt like you had to prove to the world that you were not crazy or being unrealistic about your child's abilities? That is exactly how we have been feeling this past month, thus the long blog break!

We have been working on kindergarten placement for Harrison for next year. Our IEP Team was not on the same page as we are about the reasons for wanting Harrison in an integrated or regular kindergarten class. They believed because of their "testing" and "observations" that Harrison was not "ready" and would get so far behind, then get frustrated, and finally become a behavior problem. Let me tell you I saw red when that came out! My son has never been a behavior problem (he is the most compliant-overly at times- child that many have worked with).

Yesterday we had our transition meeting from pre-school to kindergarten. The feel of the meeting was that the school was right and we were just over stretching Harrison abilities. The teachers and team did say some positive things however the "can't do, and the wont performs" were a much longer list. At one point in the meeting I started doubting what I knew to be true about my son.

The format of the meeting went something like this: (a good way to work one in my opinion)
1. The Team Arrives:
Bring a man with you, the tone of the meeting really does change when you have a man with you even if they are only there for support. THIS IS IMPORTANT!!!!

2. Introductions-who is everyone, and how are they connected to your child, how are they talking to you. What does your gut say about this person, you know your child best does it appear to be the type of person who your child will respond to?

3. Where is the child currently and how did they get there-If you are paying or participating in private therapy then make sure that you get it out at that time. My son can do many things in private therapy that the team was saying that he could not because of his short attention span and focus issue (That is called Autism right?). This is where the discussion regarding the distracting environment came in-his disability makes it hard to focus and what better place to learn to focus than in that type of environment with peers. This really opened the door for a regular general ed kindergarten for us. The team also stated that they did not consider the transition to this program and his progress successful and tried to blame it on me that I pushed and the district complied with my request. I reminded them that I am a member of the team and that the entire team from our previous placement felt it was a good move for him.

Do not let the district pin something on you that you asked for that they feel is not working. Do not take TOTAL RESPONSIBILITY for the decision you asked and the TEAM AGREED. Stand up and lay the blame right back in the entire teams lap!

4. Overview of IEP Goals and Objectives-this is hard but just let the team talk and tell you what is happening currently. If you don't have your child in regular ed or with typical developing peers and want that to happen make sure that the communication goals and the learning goals include the words "typical distracting classroom" or something similar. How do you practice these skills if you are not around a bit of distracting and interesting things?

5. THIS IS THE IMPORTANT ONE: Make a list of what type of Environment your child needs to learn in! Make sure to include thing that are important to you and you feel will make a difference in his learning. Our list looked something like this:

A Class Placement that Includes:
-Small Group instruction
-Environment that provides opportunities to practice new skills
-Typical Developing Peers
-Strong Teacher with a solid, set routine
-One to One support as needed
(OK you get the idea these were the ones that were the most important to us but there were 7-8 on the list)

6. After this is done then talk about placement. Because we have a district that has pilot project that provides opportunities for children with IEP's who may be right on the edge an opportunity to be placed in regular general education we felt that this was the best opportunity for our son. We made a comparison between the current preschool placement (which we view as extremely successful socially-academically they are right not so much- but that was not what we were looking for when we moved him) and that because the district had a program similar for kindergarten we would like to continue that environment. They tried everythign they could to "make us see" that we were setting up Harrison to "fail" however when everything that was said and done they could not make a good case as to why Harrison could not be successful in the program we felt would benefit him most.

7 Finally only sign off on the placement if you are really willing to accept that decision. YOU DO NOT HAVE TO SIGN IT AT ALL!!! The district has to provide you with a letter stating where placement will be within 10 business days (in our district) and then you have to start the paper trail process for requesting a reconsideration of that decision and go through "Due Process" and use your "Procedureal Safeguards" to make sure that your child gets what they need to make education progress.

Just a few more details : I started voiceing my desire for kindergarten placement in January of this year and did get the run around. I did get a chance to visit the intergrated kindergarten classroom and talk to the teacher about her style and how well students do in this environment. I asked her questions about her background in working with children with autism and she was able to tell me about the accomidations that she had made for some of the children with picture schedules right on the desks in the beginning of the year. My GUT (yes listen to yours too) said this is the place that my son could be successful and a teacher like this could tell me when to step back and what she needed me do or have done in private therapy to help Harrison be successful!

I finally feel like we can now finish up this school year and enjoy the excitement with all the other families who have children going to kindergarten this fall. It will be amazing, adventous, scary, exciting, and nerve racking but at least it will be our journey and one that we are ready to go on-well informed and supported.

If you or someone you know needs more information about IEP's or Speical Education Services in Eastern WA send an email to either me at davearmie@comcast.net or Families Together for People with Disabilities FTPd@familiestogether.org . The Special Education Ombudsman at OSPI (Office of the Superintendent for Public Instruction) from your state should be able to help you in providing information that may be relevant to you. If you need that information for Washington State send me an email and I will get it to you.

Families Together for People with Disabilites is a private Non-profit agency who helps to strengthen families through support and encouragement. Do you have a little extra to give? Please consider them. Donations are tax deductable! See their website at www.familiestogether.org


Good Luck and Happy Spring Everyone!

Autism Resources

As Spring arrives we are working on making sure that we are prepared to help Harrison have a jump on with the academic parts of Kindergarten so that he will be able to handle the social aspects with little frustration (I know I am dreaming but let me live in my bubble). The following 2 links I found very helpful- they were shared with me by Kristy from the ASW-Spokane Chapter. The first is for Spokane Public Schools-District 81 Kindergarten Spelling/Phonics Program Guide http://www.spokaneschools.org/ElementaryLiteracy/Spelling/K-Spelling.pdf



The second was for inforamtion on Autism directed to Physicians but I found it pretty helpful in explaining Autism to others who just dont get it!

www.helpautismnow.com

We are dealing with the flu in our household right now-I am finally getting better but Harrison is now coming down with it!

Let me know if this type of information is helpful for you and your family!

Just some quick advice worth taking

Read books that you enjoy...

Play with simple things...

Do whatever you want

whenever you want...

Look for affection when you need it...

Get serious once in a while...

Forget about diets...

Show some affection

Get angry once in a while...

Change your look...

Be happy, above all, regardless

what your challenges may be.

Have a great week!
Live simply.
Love generously.
Care deeply.
Speak kindly .
Leave the rest to God!

"Be kinder than necessary, for everyone

you meet is fighting some kind of battle."

Raising or caring for children with special needs causes some real frustrations. I hope that this post helps to insert a little humor into your day, and help put life into perspective.

And thanks, Andrea, for passing this on to me.

Eustacia Culter is Coming to Eastern WA/Northern Idaho

Autism Workshop
Eustacia Cutler Lecture and Booksigning
Author of “A Thorn in My Pocket”Sponsored by Washington State University School and Community Collaboration Center and Families Together for People with Disabilities
TWO DATES TO CHOOSE FROM!

Friday, February 29, 2008 1:00 -4:00 PMCoeur d'Alene, ID 83814

or
Friday, March 28, 2008 1:00 -4:00 PM Pullman, Washington

“There was no magic, there was just doing the best I could... and never letting go of hope.”-Eustacia

Eustacia Cutler is the mother of four children. Her oldest child is Temple Grandin, who is said to be the most successful person with autism in the world today. Eustacia is a graduate of Harvard. She has been a band singer at the Pierre Hotel, New York City, performed and written for theatre and cabaret, and written documentaries on disabilities issues for major television networks. Her current book, “A Thorn in My Pocket” describes raising Temple in the conservative world of the 1950’s.

Eustacia was one of the first to tread new water as she overcame the difficulties of “challenging the system”. Like every parent and teacher, she wanted the best for her child. She understands the myth, reality, angst, and guilt a family experiences in society. She is where you will be in the future: looking back on the things you did to help your child or students. When the “system” is not meeting the needs of your child, you must be creative and design your own program. Piece by piece, you and your child can develop a meaningful, interrelated reality. Eustacia will inspire you to reach beyond your current resources and make it work for you and your child.

The following excerpt from her book gives insight into what Eustacia felt as a mother.

‘I’m practicing Bach at the piano and Temple, now perhaps 2 1/2 but still not speaking, is on the floor beside me, absorbed in crumpling a newspaper, humming to herself, squeezing the paper, watching it slowly spring open, shredding it, gazing at the pieces that float about her. I try to entice her with colored plastic cups and spoons, but she won’t look at me.

“See the bright colors? See how the cups fit together? Now the spoons. Isn’t that fun?”

She stares for a moment and returns to her newspaper. I tell myself that children find their own playthings and don’t have to be entertained with what we think of as toys. But she looks so forlorn, sitting there absorbed in her tattered plaything, sooty with newspaper ink. Like a slum child nobody cares for. My pretty baby with her blue eyes and blonde curls. She who would prefer me to leave her alone. The snub cuts deep. Eerie in her calm refusal to engage, she’s closed the door on me, polite but firm. And so with the best intentions we each neglect the other.

Isolated, numb, we play it safe, I in my world, she in hers.

But what is her world? I turn back to the Bach.

I’m not very good at it, but it’s better than nothing. She hums. She’s humming the Bach.’

TO REGISTER GO TO www.familiestogether.org or call 1-866-326-4864.

Our Journey Begins!

When life gives you lemons….be grateful you have something to eat.

Not exactly what you were expecting right? After a year of working with Chris Curry and the Families Together staff I finally feel like I have some idea of what to make with those lemons so that they are not so bitter to swallow.

Many people try to help you by saying things like, “Only special people are given kids with special needs,” “You are such a good mom, at least you know how to work the system” and finally “Things just take time but everything will be ok you will see.”

Unfortunately, life sometimes gives you lemons and then you need a new cookbook because you only learned to cook using apples. That is what it is like to live everyday with a child who has significant developmental delays.

I know in the past 6 months I have told everyone that will listen that the parenting skills in my tool box don’t work with this child. I have asked everyone who will listen to just tell me where the parenting book for developmentally delayed children was and I would gladly pay whatever the price of the book and will implement the techniques today. Only there is no such book called, “What to Expect When you have a Developmentally Delayed/Autistic/CF/Physically Challenged/Mentally Challenged Child”

That is were Families Together comes in….they have a cookbook and they are willing to share the recipes with families like mine. My family met the staff of Families Together in September 2006 at an Enrichment Weekend that offered assistance and hope for families who include “Children who Challenge”. This sounded like our family and when we were offered an all expense paid weekend where each child would have a one on one caregiver, we were ready for a break and hopeful for some answers.
When we arrived to the weekend, I was not a happy camper- I had been eating lemons for the last 2 years. I was not used to being on the receiving end of services. I need some answers but I was sure that my son’s developmental delays could be overcome by intensive therapy and changing some things about our parenting style and life would be wonderful just like all the other normal families in the world. I sat in the back of the room angry and unwilling to admit that my family was struggling in the same ways that the other families who were attending the weekend were.

At the end of the weekend we were offered a program that including some home visits to assist in implementing a positive behavior approach to parenting special needs children. Again, I was not a happy camper. Chris came to visit us in November right after I left my job to stay home with my 3 year old son, Harrison, who was on the verge of being kicked out of daycare because of his behavior.

I cried most of the first visit and just need to have some answers on what to do and how to make sure that we were going to be able to make it with medical co-payments ranging from $150 to $250 per month, in addition to all our other living expenses as well as a parent a child who did not seem to be making much progress in therapy or at the preschool. We had a appointment with Department of Developmental Disability Services where it was determined that we had a high level of need but because we did not have a Medical Coupon issued by the state that we would need to be on a waiting list that could take up to 3 years to come to the top. My family was offered some referrals for services but Energy Assistance and Mortgage Assistance are limited to low-income families and we were just over the income guideline.

The most distressing event was that I had called to make an appointment with a specialist to have a formal evaluation and diagnosis as to what we were dealing with only to learn that we would have to wait 6 months for an appointment. I researched the specialists in the area only to find that there is only 3 in all of Spokane County and one was not taking any new patients. I was so discouraged and felt that I was given the sourest lemons ever made.

In the months that followed, we started to look forward to our monthly visits with Chris. I started to learn new ways to engage my son and communicate with him. It was really hard at first to admit that we did not know how to implement a picture schedule (we were offered one for toilet training from the school district but no instructions). My son started to learn simple sign language at preschool and this was really the first time that Harrison was able to communicate his needs-Chris taught him “waiting” and that one word has helped make our life more manageable daily.

Many of the providers assumed that we knew the language associated with services that are normally offered to families with children who have disabilities. As a social worker I was familiar with the “Alphabet Soup” of many fields but PEC, SLP, IEP, and DD were all new to my soup bowl. Chris defined the “alphabet soup” for us on each visit and offered us hope. Most of all Harrison bonded with her and started to interact with her more on each visit.

The day Harrison received a diagnosis of “Autism” I called Chris and cried. She was the most supportive to my family that day. I was so sure at that time that we were forever to eat those horrible sour lemons now that we had this horrible diagnosis. She offered us the most encouraging words and reminded us that “Harrison is still the same little boy that he was only hours before, yesterday, and a week ago.” Only now we had a name for what was wrong and proven research on how to deal with this disability to help Harrison become that person he needs to be. The help that she offered kept us going. The skills she was teaching us were working and we were starting to see some progress in Harrison.

We continued to juggle the costs associated with a special needs child and daily life but the money kept getting tighter and tighter-our savings was now gone. Finally wondering were I was going to get money for milk one week in June I called and asked what the income guidelines were for the WIC program (my husband was working all the over-time he could to keep a roof over our heads and to pay for the therapies that were needed). I learned that we were just under the income guideline by $20. I made an appointment and was offered some assistance there, but the best thing that we learned is that the Children’s Medical Income Guidelines were a bit higher. We qualified for a medical coupon (by less than $40) to cover all the co-payments for therapy and this gave us the “Golden Ticket” to Department of Developmental Disability Services.

Again I called Chris, only this time it was to share the good news that we finally were going to qualify for the services that we needed through Department of Disability Services. Once we were assigned a caseworker with DD Services we learned other new things like incontinence supplies were provided, respite care and personal care was offered and hope.

This past month I can honestly say that we have started living again. For the last couple of years we have just been surviving and trying to getting through the day…now we are starting to enjoy the wonderful flavor of lemon pie, lemonade, and mixing that lemon with sugar, and also adding other fruits and foods too.

Life is still crazy but now we are able to do more than exist…. we are able to LIVE.