Joel, Autism and I

Career & Employment Opportunity (Part 3)

2011-12-20T13:41:00.000-08:00

Part 3 – Finding Employment:

Even though I am not at this juncture, I am conscientious of the fact that the time will come when I will have to cross this bridge; my 22 year old son Joel is in the process of attending an adult training center and we are all hoping he acquires the necessary skills to find a job that suits him.

Nevertheless, I still wanted to know what, if any, employment opportunities are available for persons with disabilities. So, as I browsed through various web sites I am pleased to write that, currently, there are several career options. Thanks to the Federal Government and the Americans with Disabilities Act (ADA) hiring options for the disabled has increased. Both entities share intricate parts in ensuring the disabled are an inclusive part of our working community.

For example, the Social Security Administration has a website that provides necessary services to prepare and place beneficiaries with employment. Visit this site http://www.ssa.gov/work/ for valuable information on how the program works and who can benefit from this service. Also, the US Department of Education is actively looking to recruit persons with disabilities and Hispanics. This website http://www2.ed.gov/about/jobs/open/edhires/index.html provides information on job listings and plans for employment.

Although I very much appreciate the government’s efforts, I quickly became curious on the availability of work in the private sector. What does midsize businesses and Corporate America have to offer persons with disabilities?

The truth is, disabled persons face great challenges in obtaining employment in the private sector. And even though, the Department of Labor latest report showed an overall improvement, among the disabled unemployment remains considerably high (in part because Corporate America is disabled too with fear and uncertainty).

It would behoove parents, guardians and persons with disabilities looking for work in the private sector to rely on organizations dedicated to this endeavor. Many of these programs are run by non-profit organizations, who have strong ties to employers and companies in the community.

Take a look at some of the links I found during my research. One of these may be what you are looking for:
EARN http://www.askearn.org/g-jobseeker.cfm Employer Assistance and Resource Network is a resource for employers seeking to recruit, hire, and retain qualified employees with disabilities. EARN has a jobseeker page to help the disabled find work.
HIRE DISABILITIES SOLUTIONS http://www.hireds.com/ this site is dedicated to connecting individuals with disabilities with employers. They provide tools for skill building and concentrate on promoting what a disabled person can do as well as how an employer can benefit from hiring a person with disability.
LATPRO http://www.latpro.com/index.php?1324318902 this online company connects employers and recruiters to Hispanic professionals. This site provides free services for jobseekers and can be a perfect fit for persons with disabilities seeking to use their bilingual language skills.
SALUDOS http://www.saludos.com/ this site is dedicated to connecting Hispanic bilingual professionals with companies looking to diversify their workforce. Again, can be a perfect fit for persons with disabilities seeking to use their bilingual language skills.
EOP http://www.eop.com/ Equal Opportunity Publications, Inc specializes in diversity recruitment. They are dedicated to helping women, minority groups, and people with disabilities through expos, online job boards, and career magazines.

I will not fool anyone by ending this article with false expectations. Truthfully, experience tells me the private industry is frightened stiff of the disabled. Our challenge is to change the mindset and help employers develop confidence in how to accommodate a disabled employee.

I do see possibility in these hopeful trends I've listed above.

Education and Vocational Training (Part 2)

2011-10-16T12:25:00.000-07:00

Part 2 – Life after High School:
The transition from adolescence to adulthood is challenging for any youth and though many teenagers make the transition without a hitch, for young adults with disabilities, the challenges are even greater.

For those not familiar with the term “transition plan”, it is the process of planning and setting meaningful future goals while in high school. Transition is a period in which something undergoes a change and passes from one stage to another. For example, if the disabled student were working on job skills in high school then perhaps a normal transition would be for him/her to sharpen that skill through vocational training after graduation; and the students Individual Education Plan (IEP) should indicate that particular transition service.

Historically, disabled students were less likely to engage in vocational training, seek higher education or employment opportunities because the information and opportunities were not readily available; not to mention, many did not have a suitable transition plan in place or their IEP did not include a plan at all.

The Department of Education (DOE) has made great strides to improve this service, and recognized the significance of a well-designed transition plan. For this and other reasons, DOE in conjunction with President Obama has appropriated grants to help sustain programs for disabled students in the transition phase. The intent of these programs is to focus on academic and job skills in postsecondary schools programs for students with disabilities and provides the support they need to succeed.

So where do you begin? Begin, if at all possible, at least 2 years before graduation to ensure the plan makes sense and it is a natural positive progression of development for your transition age child. Look at Youthhood.org a free, interactive website that young adults and their teachers, parents and mentors can use to plan for life after high school[1] their only requirement is that users register on their site http://www.youthhood.org/

You may also visit Disability.gov This site has invaluable resources for students with disabilities, parents, teachers, and anyone searching for information about life after high school. https://www.disability.gov/education/student_resources/preparing_for_college

Also, below I have compiled sub-sections of information and resources to help you in your search.

Preparing for higher education: Training for Future Success
College Guides – visit below sites for a comprehensive look at college options
http://tucollaborative.org/pdfs/education/College_Guide.pdf

http://www.heath.gwu.edu/modules/awareness-of-postsecondary-options/

Disability Friendly Colleges – this online college guide for students with physical disability contains interactive charts of the most disability friendly colleges and profiles of the colleges that provide services necessary for students with physical disabilities to live on campus[2]
http://www.disabilityfriendlycolleges.com/

Preparing for a Vocational Training: Development & Leadership
If college is not an option, you may want to consider an internship or apprenticeship program. Below are sites to help you get started.

Internships
http://ncld-youth.info/Downloads/intern-guide-final.pdf

Apprenticeships
http://www.careeronestop.org/EducationTraining/Find/ApprenticeshipOffices.aspx
http://www.dol.gov/odep/categories/youth/apprenticeship.htm

Volunteering: Finding your niche
In the event you are unable to find an educational and vocational opportunity that suits your young adult perhaps volunteering may help them find their niche.

National Youth Leadership Network – Promotes leadership development, education, employment, independent living, health, and wellness among young people with disabilities. http://www.nyln.org/
AmeriCorps - This program administered by the Corporation for National and Community Service that allows people of all ages and background to obtain help paying for education in exchange for a year of service[3]. http://www.americorps.gov/

National Service Resources – NSR methods for including people with disabilities in national service programs, including accessibility, assessments, mentoring, special education, students as camp counselors, and many other ideas[4]http://www.nationalserviceresources.org/practices/topic/152

United We Serve – Visit The United We Serve search engine to find hundreds of volunteer opportunities. Simply select a category from the drop down menu in the blue box in the upper right hand corner of the home page, enter your zip code or state and click the “Find Opportunities Now” button[5]. http://www.serve.gov/

Remember, there is no time like the present. Start planning today!

[1] http://www.youthhood.org/ description as written on site
[2] http://www.disabilityfriendlycolleges.com/ description as written on site
[3] http://www.americorps.gov/ description as written on site
[4] http://www.nationalserviceresources.org/practices/topic/152 description as written on site
[5] http://www.serve.gov/ description as written on site

Planning for the Future (3 part series)

2011-08-27T10:26:00.000-07:00

It never occurred to me that I would have to ask the Florida Family Court for the right to make decisions about my son’s future. There was no doubt, in my mind, that I had a God given right to decide how my son would live out the rest of his life. After all, I am MOM and he is autistic and incapable of making life long decisions. Wrong. My son’s mental disability, according to the State of Florida, does not change the fact that at the age of 18 he is an adult.

In order to make vital decisions concerning the adult life of an individual with disabilities, a surrogate decision-maker must be appointed by the court to make personal and/or financial decisions for that individual.[i] In other words, a parent must become the child’s legal guardian otherwise, the disabled child becomes a ward of the state (state’s dependent).

The truth of the matter is, whether you want to or not, you should start planning your child’s transition to adulthood while he/she is a junior in high school. Two years before graduation may seem excessive, but you will need the time to plan, gather pertinent information, learn your rights, review legal documents, and/or employ someone to help you with the process.

Starting this process early will ensure your child’s needs are met to your satisfaction and not to those of a complete stranger, like a state employee. Below six steps will help you get started:

1. Create a Personnel file (also known as a Care Notebook) – creating a file or notebook will help with organization. Include separate sections for medical records, school IEP (Individualized Education Plan) reports, provider’s contact information, behavior assessments and anything you deem pertinent to your child’s life. Remember to keep the current records in the front, reverse chronological order will keep you up-to-date. Here is a great tool to get you started – visit this site for step by step instructions http://www.medicalhomeinfo.org/for_families/care_notebook/

2. Clarify Requirements – determine what coordinated services your transition-age child will need; independent living, vocational/educational programs, housing assistance, adult daycare services, college, etc. Keep in mind that while all states offer adult programs for the disabled, most programs have a waiting list. Therefore, it will behoove you to be prepared and know, in advance, what your objectives are.

3. Legal & Professional Assistance – the transition to adulthood is as much a legal matter as a personal one. Seek professional assistance by speaking with experts who can guide you through legal options, such as guardianship or special need trusts. Build a professional support group that includes disability attorneys & legal aids to help you complete legal forms. If your child is not receiving such entitlements as Social Security and Medicaid, visit your local government office or go online to https://www.disability.gov/home/i_want_to/disability_benefits for more information about social security benefits and other programs.

4. Connect with your Support Coordinator – If your child is receiving state disability benefits, speak with the state support coordinator assigned to your child’s case. Ask for referrals to service agencies and non-profit organizations. Do not forget that you have an invaluable support group right at your child’s school. Ask the Special Education department for direction and assistance with adult services. Speak with your child’s teacher about your objectives and plans. Search online for organizations dedicated to helping families living with disabilities, such as The National Autism Society, CARD @ USF, and The Arc. Moreover, do not forget to visit the government’s career planning site. The site is a great resource for career planning, mentoring, apprenticeships, job training, and youth programs. https://www.disability.gov/employment/career_planning Remember to exhaust all your options before making a final decision.

5. Final list/Perfect Fit – once the groundwork is complete, tour, tour, tour. Call and visit the places on your list to determine if it is a good fit for your transition-age child. If adult vocational training is on your list, call the school and speak with the admissions counselor or schedule a tour. You want to ask about programs for disabled students, see those services in action, check out their setting, and meet the staff. A tour will help you make an informed decision.

6. Take Care of You – Meeting the needs of your transition-age child will have its challenges and you will face ongoing challenges throughout this process. Make time to take care of yourself and other family members. Perhaps therapy or counseling services will help you and your family deal with this ongoing burden. If therapy is not an option, do not underestimate the power of support groups, friends, and other parents in similar situations. Speaking with families in similar situations can be very therapeutic. The truth is, if you do not take care of yourself, you will not have the mental or physical energy to take care of others.

Next post; Part 2 – Higher Education/Vocational Training coming soon
______________________________________________________
[i] Guardianship; Florida State Courts http://www.flcourts.org/gen_public/family/self_help/guardianship/index.shtml

Where Have You Been?

2011-08-14T09:49:00.000-07:00

Quick update....

Hi! I know its been a couple of months since I've written on my personal blog but it is with good reason.

I have been invited to join a professional site and share my expertise with other communities. Feel free to visit jossie.escuchame.org and join my friends tab and leave a comment. I would love to know what you think of it.

For the moment I will be posting similar or same articles on both my personal and professional sites until I can rearrange my schedule to dedicate time to writing both with different perspectives (still working on it).

Needless to say, thank you to all of you for your support. I know I have said thank you so many times over that some of you are asking me to stop LOL. Fat chance! Thank you...Thank you....Thank you...

In the meantime....please read my latest post - The "F" Word

With Care...

The "F" Word

2011-08-14T09:37:00.000-07:00

If you want to see our politicians run for cover, just mention the F word – FUNDING. The term has become taboo in modern day politics. Everyone wants it but personal interests blur the line between right and wrong. Sadly, the disabled fall on this very thin line. Some say it is due to a lack of understanding, others say it is a lack of appreciation but most agree that it is a lack of empathy.

Besides the obvious disadvantages, this is especially compelling because the ability to earn an income is non-existent. Basic essentials like using a spoon, putting on a pair of pants, and writing a thought you and I take for granted but it is a daily struggle for people with physical and mental disabilities. And to add insult to injury, future funding is on the chopping block.

I thought it only befitting that as a parent of an autistic son, I share my research technique in hopes that I can help families find the funding sources they need. Here's a sure method that works.

Once a qualified professional has diagnosed your relative with a physical and/or mental disability, chances are they will refer you to your local State Human Services or Social services agency for assistance. Receiving assistance from social services is actually a positive step because it can help you qualify for other grants, specifically free grants.

Upon diagnosis, your next step will be to determine what type of aid you and your child/adult need. This is particularly important because some grants will only pay for especific items or needs. Such as, Financial, Respite Care, Daycare, Behavior therapy, Speech therapy or Residential placement. After establishing your specific need, develop a support group; begin by talking to school officials, medical doctors, psychiatrist, social workers, medwaiver coordinators, and other parents. The legwork will prove to be invaluable.

After compiling the information from your support group, do an online search and make a note of contact information to grants relevant to your specific needs (visit your local public library for free computer access - if one is not readily available at your home). Then, be patient because this can be a tedious process.

With this in mind, I decided to put my research process to the test to determine current grant availabilities. This is what I found:

a) Housing grants for individuals with disabilities – contact Housing and Urban Development Center (HUD) and the Rural Housing Service of the US Department of Agriculture http://portal.hud.gov/hudportal/HUD?src=/topics/information_for_disabled_persons

b) Helping Hand for Relief and Development – provides financial assistance to families in need of medical treatment, medical tests, supplements, behavioral therapy for autistic children (note: these moneys to do cover tuition, respite care, security items or entertainment; family yearly income must not exceed $50,000; 2011 funds are exhausted; funds availability resume in 2012 ) http://www.hhrd.org/ or contact leslie@nationalautism.org

c) Medical Grants by United Healthcare Children’s Foundation (UHC) for children with Autism – They first want you to know that this process may not be an easy one but they encourage families to apply especially if medical health insurance does not cover certain services. This nonprofit charity “is in the form of a medical grant to be used for medical services not covered or not completely covered by commercial health benefit plans” (as written by http://uhccf.org/ )

d) Autism Cares – provides support for families with disabilities, specifically autism, during natural disasters and other catastrophic life events. Their mission is to help families pay for living expenses (housing, utilities, day care, etc). Applications are available online. Note: the maximum per family is a onetime support award of $1000. http://www.autismcares.org/site/c.mqLOIYOBKlF/b.4745901/k.BD21/Home.htm

e) Autism Speaks Baker Summer Camp Program – “has selected eligible camps in the US to identify qualified campers and offer scholarship funds for financially disadvantaged children with Autism Spectrum Disorder (ASD) to attend a summer camp” (as written - http://www.autismspeaks.org/family-services/grants/baker-summer-camp-program) Visit this link for a list of camps that currently receive scholarship funds.

f) Grants.gov (http://grants.gov/) this site is quite cumbersome and overwhelming. However, you can find a professional grant seeker from one of the nonprofit organizations to do the legwork for you. Nevertheless, if you decide to visit this site here’s how - in the left-navigation pane on the main page, click on Find Grant Opportunities then click on Browse by Category.

This process may be tedious but a necessary one for the betterment of your disabled child or relative. Not to mention, the welcomed relief you will feel once the services are in place.

NOTE OF CAUTION: When searching online for a grant, any grant opportunity, be mindful of scams and fraudulent grants. Sadly, swindlers are everywhere. If your search leads you to a site in which the organization, company, or association requires you to pay a fee in advance, close the page, THIS IS A SCAM! Grants by definition are free.

Good luck!

Deciphering the Mystery

2011-06-13T13:31:00.000-07:00

I was recently told in casual conversation that "Autism is a real mystery" and when I asked this individual to elaborate, his answer was simple, "it's what I've heard". I was surprised by the cavalier response and I gave him my blog address. But I couldn't get his comment out of my head. Was he right? Is this disorder a "real mystery" today? Is it impossible to decipher (make sense of)?

Two years after my son was admitted to his first group home, his medication intake was as follows: 2 pills in the morning, 1 pill at noon, 2 pills at 3pm and 1 pill at bedtime. My son was drugged and lethargic 24/7. I became angry every time I attended his IEP meetings (individual evaluation plan) because his doctor, with pen poised in midair, would say "there isn't enough information to determine what will work, so, I'm prescribing..."

WHAT?! If you don't have a good assessment why are you medicating? I realized I needed to educate myself in order to fight against this medical treatment. I was angry that his caretakers wouldn't listen to my logic and research until my fears came true. Joel became immune to the meds, his behavior worsen and he was admitted to Morton Plant Hospital detox unit. And Yes, I was ready to burn down the group home with every staff member in it (except the kids, of course).

The good news is I won the war, Joel was moved from this particular group home to a behavioral focus group home and within 18 months he was completely clean. To this day, Joel's caretakers focus on his behavior, diet and communication skills without the use of medication.

Now I ask, does it stand true that autism is a real mystery? In Joel's case the answer is NO, his previous caretakers were just idiots. I want to believe that the gentleman meant to say that despite proven statistics and all of the medical information available, global understanding is the real mystery because awareness of this disorder does not capture enough attention. Autism is in fact known as the most common ASD today and it affects 1 in 58 boys in the United States.

According to The International Autism Research and Education Center (Icare4autism.org) there are several main components of autism that can help people understand ASDs.

The components (as specified on the Icare4autism.org) are:
1) Autism is a complex developmental disorder
2) Autism is likely caused by neurological problems early in a child’s life
3) Autism mainly affects developmental, social and communication skills
4) Autism is just one of several Pervasive Developmental Disorders (PDDs) including: Asperger’s Syndrome, Rett Syndrome, Childhood Disintegrative Disorder, and Pervasive Development Disorder Not Otherwise Specified (PDD-NOS).

The Common Signs of Autism & other Spectrum Disorders are:

Difficulty with social interaction
Problems with verbal and nonverbal communication
Repetitive behaviors or narrow, obsessive interests

Please visit http://www.icare4autism.org/what-is-autism/signs-of-autism/ for more info

Finally, I will admit that I do get it...individuals unaffected by autism have a difficult time grasping what it is like to live with this disorder. But I am an optimist and I have to believe awareness will go global and we'll find a cure.

Celebrating Milestones

2011-05-24T06:25:00.000-07:00

In 1987, at the tender age of 24 and married for only 2 years, I became enamorada with the idea of having children and a legacy.

Who would of thought that I would be so lucky as to get pregnant around my birthday! Nine months after that 24th birthday, my eldest son Joseph was born and the following year, Joel came along. My boys were fortunate to experience life's wonders together and I was/am fortunate to be a part of it all.

Last week my autistic son Joel celebrated his 22nd Birthday and next week he graduates from high school! This birthday and graduation marks two huge milestones in his life and ours. We are having the most amazing time wrapping our heads around the thought of Joel walking on stage, wearing his royal blue cap and gown and matching tassel that we just can't stop talking about it and I can't stop smiling.

At my dining room table, stories of Joel's first year in school makes us laugh out loud and stories of Joel's much improved behavior makes us silent in amazement.

So, to commemorate both milestones and considering this Memorial Day falls after his birthday but a few days before his graduation, I decided to have a Memorial Day BBQ in his honor and include all of his favorites (and ours).

Our celebration will include...
-red/white/blue hand written keep sake invitations for family & friends;
-balloons, noise makers and decorations through out the house and back yard;
-a menu of grilled chicken, macaroni salad, arroz amarillo con habichuelas coloradas (red beans & yellow rice...Joel's favorite dish) and all staples of a Memorial Day BBQ (ribs, burgers & hot dogs, baked beans, salads & apple pie);
-a wild variety of music (salsa, Latin jazz and Joel's favorite movie "The Scorpion King" playing in the background LOL);
-Finally, loads of hugs, kisses and love. What can be better than that!

Happy Birthday Joel! and Happy Memorial Day to all!
Jossie

How Does It All Work?

2011-04-26T15:39:00.000-07:00

If you are a parent of a disabled child in Florida, then you are familiar with APD (Agency for Persons with Disabilities), the process and the ongoing challenges to prove your child's need for services.

In 1997 Joel's school counselor, teacher, psychiatrist and nurse decided to do an intervention with me because Joel had become extremely violent with them. I was devastated and embarrassed but I understood their concerns.

I explained the difficulty I was having getting behavioral services approved and the ongoing nightmare with the application. The school referred me to PARC (Pinellas Association for Retarded Children) and I immediately felt relief. PARC guided me through the process and completed many of the forms with me. As a matter of fact, PARC was the first behavioral group home Joel attended.

Truth be told, unless you have a clear understanding of the requirements, they are nearly impossible to meet. Without proper guidance from service providers, parents and families are lost and left behind. But the biggest fear amoung families with disabled members is regress. Do you remember the old mental institutions? Click on link below and turn up the volume but PLEASE DO NOT VIEW THIS CLIP IF YOU HAVE A WEAK STOMACH OR HEART http://www.youtube.com/watch?v=ozgUw4n4hJo&feature=related

So, How Does It All Work? Why are these providers a vital part of this process? Below is a video link, I REALLY HOPE YOU DO WATCH.

Two things I hope you take from this video 1)empathy for the advocates who are dedicated to helping the mentally disabled and their families live better lives and 2)a new found appreciation for the need to fund these services.

Visit www.TheBehaviorAnalyst.com/FreeVideos.aspx and scroll to the bottom left side of the page to access the video entitled Consumer Services under the Florida Medicaid Waiver

Hat off to all Service Providers...with out you, we would be lost.

Thank you!
Jossie

THANK YOU for your SUPPORT

2011-04-19T06:43:00.000-07:00

I am so grateful for all the personal emails sent to me and I thank you for doing your part to protect those that can’t protect themselves.

Sometime last week, I read in the paper that Legislative leaders stepped (http://www.tampabay.com/opinion/editorials/legislature-must-remedy-scotts-hasty-cuts-to-vulnerable/1163323) up to the plate to lift the budget cuts targeted to reduce funding for the disabled; so, of course, I had to verify the information. I texted my contact at the State and was told that the cuts were lifted.

I can not THANK YOU enough. I do believe that the picketing, letters sent, phone calls made and emails sent to our legislators’ – WORKED! We won this small battle in an ongoing war. Funding is still an active issue but at least our legislators’ are working on a funding source.

So...now that Part one of my “Pay it Forward” campaign is complete; I can concentrate on Part 2.

This is a favorite. This is where I organize a charity event; the “Pay it Forward” charity BBQ date has been chosen, the venue secured LOL and the invitations mailed. I look forward to sharing a fun filled day with my family and friends for this worthy cause. See you at the BBQ!

Thank you so much for your support!
Jossie

Autism Awareness Month

2011-04-07T18:00:00.000-07:00

The month of April is a favorite month for me. It is the month friends and families with ASD (Autism Spectrum Disorders) come together to conduct awareness. On April 2, buildings around the world were lit in bright blue to kick off Autism Awareness Month. And if you missed it, just visit lightitupblue.org and you will see photos of the participants.

I was happily surprised by the number of email invitations I received that I decided to bring my family and friends together to conduct awareness. In fact, I believe it is my responsibility as a parent of an autistic child to share part of the recent article published on the Autism Speaks website  (http://www.autismspeaks.org/donate/we_need_answers.php),
“…Autism is a growing national…public health crisis. … a staggering 57 percent increase from 2002 to 2006, and a 600 percent increase in just the past 20 years. …These new findings reinforce that autism is an urgent and growing public health crisis that affects most individuals across their lifespan and demands a commensurate level of action from both the public and private sectors…”

For this reason and the fact that funding for the disabled has been included in State budget cuts…I decided to do my part to increase awareness and contribute as best I can. First, I am organizing a “Pay it Forward” Charity BBQ to benefit a non-profit group home, my charity of choice, that serves the developmentally disabled in my local area. I am hoping that this small measure of kindness will spark compassion and the ripples of benevolence reaches multitudes.    Second, I am writing to my Legislator and Senator to voice my opinion on this travesty of cutting funding from individuals that CAN'T fend for themselves. In my opinion, this is classic bullying by those in power!!

As Jon Purnell, former US Ambassador once said   "This kind of cooperation is important, and is especially important when times are tough politically."   I realize that he was not specifically refering to helping the disabled, but in this instance, the quote is just as applicable.

Pay if forward, any way you can....

Sooo....just in case you decide that you would like to voice your opinion and you live in Florida...below is a list of contact information:

Senator Bill Nelson- D 1-(202)-224-5274, billnelson.senate.gov/contact/index.cfm

Senator Marco Rubio 1 (202) 224-3041, rubio.senate.gov/public/index.cfm/contact

City Senate- Ronda Storms- 813-651-2189 Fax: 813-651-2188, storms.ronda.web@flsenate.gov

US Congressman- Alcee Hastings- https://forms.house.gov/alceehastings/webforms/issue.suscribe.htm- click on contact and make your complain or concern

Pay if forward!

Jossie

Defining Normal

2011-03-19T14:35:00.000-07:00

The first time I 'paid' attention to the word "normal" I was in middle school. A teacher (who's name I can't remember) scolded a student for bouncing off the walls and running in the hallway and not "acting" normal. Within seconds, the boy's expression went from fear to clueless as he shouted "this is normal!" And for the first time, I understood that normalcy is a very personal thing.

According to the Webster's dictionary, normal is "conforming with an accepted standard or norm".  However, definining ones standard or norm is an idiosyncracy. Defining normal, a way of behaving or thinking, is peculiar to an individual or group.  Everyones normal is different.

The second time I 'paid' attention to normality was when my son Joel was diagnosed autistic. I knew I needed a new normal but accepting it wasn't as easy. My new normal, however defined, was going to affect everyone in my life, especially my eldest son Joseph.  Needless to say, I made lots of mistakes along the way.

I was haunted by two questions; How do I know what normal is for Joel? and How do I create normal for Joel?

Unable to come up with an answer, I asked Joel's psychiatrist. His suggestion involved a very daunting task but turned out to be sound advice.  He advised me to watch the behavior.  Noticed Joel's happy moments and his intense moments. Learn what triggers his good and bad moods.  Be vigilent.

Sounds easy, right? No, it isn't. As a matter of fact, it is difficult and heart breaking. However, what I can tell you is that by following this simple advise, interacting with Joel became much more rewarding and his violent episodes diminished.  Once I was able to recognized the behavior, I was able to redirect.

Defining normal for me was learning that all behavior is communication and by focussing on his behavior I learned my son's needs, wants, likes and dislikes.  Yay!

**********
If you get a chance, buy and read Ten Things Every Child with Autism Wishes you Knew by Ellen Notbohm.  http://search.barnesandnoble.com/books/product.aspx?ean=9781932565300&#TABS

I wish this book was around in 1997!

Wishing you success,
Jossie

Aha! Moment

2011-02-16T18:40:00.000-08:00

After Joel’s diagnosis, I was overwhelmed and lost. I was faced with the challenge of educating an autistic child. And to my surprise, it was Joel's older brother that taught me a lesson.

...when Joel was 4…

A child’s laugher interrupted my slumber. I rubbed my eyes and propped myself on the bed then reached for my robe. I peeked outside my bedroom door. The laughter became clearer. I tippy toed down the hallway towards their room, pushed the door wide open, and screamed Aha! To my disappointment, the room was empty. I walked into the living room then the kitchen. “Wash your hair with this.” Joseph laughed. My heart sunk and images crossed my mind; garage…sharp tools…glue…Oh God! I busted through the door, startling Joseph to his feet. Joseph stood, frozen in place, with one hand on Joel head and a bottle of plaster in the other. “Look what Joel did Mom!” he tattled. Joel sat in the middle of the garage, his hair covered in white chalky plaster. “Give me that!” I ripped the sticky bottle from Joseph's hand. Joel laughed, holding his stomach like the pillsbury dough boy, as he ran into the house. Joseph had no choice but to follow; his hand was practically stuck to Joel’s head.

Aha!

Even though, the incident was unpleasant and Joel was bald for a week, Joseph taught me a simple yet important lesson. Joel's a tactile learner. Joel imitated every movement his older brother made and to this day he loves shampooing his hair. If you are a parent of an autistic child, then you know teaching personal hygiene is just a challenging as teaching them to read. Children, normal or disabled, have 3 basic learning styles; visual, auditory and kinesthetic. Once I knew Joel's learning style, I was able to modify my technique and emphasize a method of learning that motivated him.

Below are some links about learning styles and techniques that I found to be current and informative. I hope you do too.

http://www.autism-aspergers-asd.com/?hop=htdtinc

http://www.nlconcepts.com/

http://www.autisminspiration.com/public/department2.cfm

http://www.bridges4kids.org/articles/2004/8-04/ASA7-04.html

Making Sense of it All (Day of Discovery)

2011-02-07T11:30:00.000-08:00

It was the brightest corner in the office and the saddest moment in my life. It's been nearly an hour and my son was still in with the psychiatrist. I desperately wanted to be a fly on the wall. I got up to ask the receptionist how much longer but before I could, the office door flung opened. Joel ran out like a hurricane. His eyes were dark, full of anger and rage. Joel’s howling screams brought the receptionist to her feet. Joel came at me with both fists flailing about his head; suddenly, with the speed of 5 Tasmanian devils, he turned his anger towards the Psychiatrist.

The Doctor was no match for my son. I wanted to run out of the office but I’ve seen this side of Joel before. I leaped over the small coffee table, knocking the magazines on to the floor. Instinctively, I grabbed Joel's shirt with one hand and covered his mouth with the other. I could feel Joel's teeth in the palm of my hand. The doctor raised his eye brows and stepped back as though struck. I lifted my son and buried my face in his chest. This gesture seemed to mean something to Joel. He lost his strength in my arms. Exhausted, he wrapped his arms around my head and began to cry. The Doctor compassionately put his hand on my forearm and a tear fell down my cheek as I told him of my struggles.

Joel and I were curled up on the sofa, playing. Brightly colored toys, puzzles and books lay on the sofa and on the floor in front of us. I'd slowly sound out words. I repeated this process for several minutes at a time. But my boy doesn't respond. He stares blankly at me. My heart flutters at the thought that Joel is almost 3 and hadn't uttered a word. Ever!

My solution was simple; keep at it. I moved closer to face Joel, my mouth inches from Joel’s eyes; I slowly repeated the same word over and over again - Mama. Joel grows anxious. He kept fidgeting. I straighten out his body and tried again. He put up a good fight. I gave in. He bolted to his bedroom, faced the mirror and began to scream and cry at his reflection. I felt the sting of Joel’s pain. I was stuck in this scary place, numb with fear. My perfect little boy wasn’t perfect any more.

I was determined to find the cause and cure of my son's frustration. Our appointment with his pediatrician was scheduled for later that day and Joel was in a great mood. The drive to the sitter’s house was uneventful. Joel sat quietly in the back seat. I felt optimistic about this new babysitter. She was an experienced sitter. As I approached her house, I felt a surge of emotion; optimism and dread. After carefully explaining Joel’s short comings and the fact that SHE was sitter number 18 and he had an appointment later that day, I paid her a week in advance and she agreed to give it a try.

When I pulled into the parking lot at work, my boss had been waiting for me at the front door. This is never a good sign. The sitter was on the phone sobbing uncontrollable. And before I could say another word, my boss pushed me out the door. I took a deep breath, got into my car and drove. I leaned far over the wheel, clutching it tight, praying Joel and the sitter were OK.

The paramedics were already there. I closed my eyes as my heart sunk. I feared the worst. The front door was open and I could hear Joel's cry and the muffled groans of a woman. It was the sitter. The paramedics were working on her wound. My face softened with concern and guilt. The sitter turned her head towards me and waved her hand in dismissal. I grabbed Joel's hand and held on tight. The sitter shifted a bit and angrily explained how Joel's behavior changed from unresponsive to disturbing. And within a flash, he attacked her, latching onto her stomach, teeth first.

Sobbing, I called the pediatrician and she referred me to All Children's Hospital Medical Center just a few miles away. As I entered the hospital, I felt battered and raw inside. Unable to face anyone along the way, I briskly walked along the corridor and signed in.

It would be on this day that my son was diagnosed autistic. The psychiatrist's words sounded so sharp, I felt stabbed by them. The pain literally took my breath away. It took a moment to make sense of it all; I had found the cause of my son's frustration but there is no cure.

I love you Joel.

Vision and Mission

2011-01-23T11:24:00.000-08:00

I know first hand that living with a child or adult with a disability can be a joy and a challenge. My son Joel was diagnosed autistic in 1992 and my only wish, once I knew there was no cure, was to ensure he had a happy and productive life. However, finding the resources, guidance, support and encouragement I needed to help my son was practically non-existent. In 1992, autism was still a great mystery to the medical community. I have experienced the sorrows of his set backs and the joys of his progressions and I am proud to say that he will be celebrating his 22nd birthday this coming May.

A few days ago, as I was speaking with a 26 year old mother of an autistic child, I realized that my experience, however different, could be a useful source of information.

On my site I hope to provide current, valuable and useful information to families dealing with children and adults with Autism and related disabilities. I will posts informational articles, personal essays and interview professionals in their field in an effort to provide current information for today's parent.

Included on my blog will be local links to help families in the Tampa Bay area in Florida, find the resources needed for respite care, school and community support and guidance as well as community outings and local events.

To a successful journey!

Jossie E