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.