May 11

Mother’s Day 2014

mother-child-sling-17311151Happy mother’s Day to all the caring loving selfless mothers out there.

Happy mother’s day to all the warrior moms with special needs kids.

The ones, who never tired to stay up one more night when the child just simply can’t or won’t sleep.

To those, who fights over and over to get the child into a care of the medical professional who actually care.

To those, who stand up to that medical professional, and won’t allow her child to be pumped with more drugs.

To those, who stay up all night to research what is the best possible treatment for her child, so he/she may advance and reach their full potential.

To those, who fight back tears and appears tough on IEP meetings to get all the services for her kids.

To those, who become  a FBI agent  when it’s come to her child’s safety.

To those, who become a lioness when it comes to protect their child.

Mothers have bottomless hearts, never-ending patience, abundant excuses to forgive, and the best healing hugs anyone can ever ask. Mothers many times get shortchanged, but they never look at it that way, they see it as an investment for the future for their kids.

Celebrate your mothers, and make sure that every day will be a mother’s day. It is not about those flowers,  box of chocolate, or even a special lunch or dinner on mother’s day that matter;  what matters is the beautiful memory growing up with a very special lady that we can call  our mother.

I am fortunate to have a wonderful caring mom, who taught me from a very young age that, regardless what the world say I have to believe in myself, and fight for the cause that matter. She gave me the strength to stand up for myself, to believe in a good cause even when I have no one to share it with, to stand by my children in the most difficult situations and believe in their abilities, and their bright future.

What the word “MOTHER” means to me?…EVERYTHING

Apr 29

Autism Acceptance Month

puzzle-thumbs-up1This month we raised awareness, and we wanted others to accept our family members with autism. It is important to educate the general public about autism, but it is crucial to reach acceptance.

The month is almost over, in some places lots had been done, and hopefully it will continue throughout the years coming. There are places where despite all the awareness efforts, things did not change any or very little improvement can be seen.

I want all of those who had been working very hard in this month to make a difference, to be patient. Great achievements take a lot of effort and more than a month. Consistency is the key, and if we can change a perception of people one at a time, we are on the right track.

Many times we lose sight of the smaller achievements, and we are focusing on the big goal we want to reach. It is nothing wrong to keep our eyes on a greater good, but we should never ignore those small victories we accomplished. Those small successes add up and pave a strong foundation to our cause.

I salute you all who are working with ASD kids/adults, helping them to be a valuable members for their society. I salute you all who worked hard to educate the public about this condition.

I salute you all who reached acceptance of these kids/adults and their families.

 

 

 

Apr 25

CLM Conference

CLM_Logo (640x522)An exciting news for all the CLM followers and users. There will be a conference held in Pennsylvania on June 18th, 2014.

For those who are not familiar with CLM, it means Competent Learner Model.

This model is being used successfully all over the world to help children with all types of disabilities including autism.

The conference will enable us to ;

  • Hear about global CLM implementation projects
  • Network with other leaders and coaches currently implementing CLM
  • Deepen your understanding of CLM instructional design
  • Interact with experts on sustainable implementation practices, elements of instructional design, generative instruction, and fluency building technology
  • To attend this conference live or webcast, registration is required. Please register  by June 6th to ensure your spot on this event.

To find out about the agenda click here.

You will find the link there for registering this event. Don’t miss this opportunity!

Apr 22

Siblings or Victims?

siblingsMany of us have typical children, and we get the questions from family members and strangers, “How do you take care of your “normal” child? Do you have time for her/him? Do you feel guilty not spending enough time? Wouldn’t be better for her/him to stay with a family member who has time and doesn’t have to deal with an ASD child.’

Yes, I heard all these questions and more, and I know others had to deal with ignorant questions and comments too.

One may ask, are these typical siblings  victims of the circumstance. The answer is absolutely NO. No one is a victim here, except the person who continues to ask those foolish ignorant questions.

Those typical siblings will grow up as anyone else would, but these kids might learn more responsibility than others would.These children will develop more compassion than others would if they are not exposed to situations where they can learn it.

Typical children can even became their ASD siblings greatest advocate. I wrote about the benefits of growing up with a special need child. Click here to read about it.

Now, let me address those questions I wrote on the top one by one from my  perspective.

How do you take care of your normal child? This is really a degrading questions. Normal is very subjective. What is normal for me might not be for you simply because of our race, culture or geographic location. A better choice of words would be much more appropriate and less insulting.

Furthermore, a parent always struggles to give  her/his child all the time they need, and even more. It is certainly a natural feeling for a good parent to feel sometimes inadequate, not being able to spend time with either of the children. This question put even more pressure on those stressed out parents. So please stop, and maybe you can bring over a dish for the family so that mom doesn’t have to take time away from either of the kids to cook that day.

Do you have time for him/her?  Yes, I have time for both of my kids, and if I don’t I will make time. My children do not look deprived nor neglected, so these kind of questions are insulting to me. Please mind your own time management and leave other’s time alone.

Do you feel guilty not spending enough time with her/him? If you read these questions, basically they all mean the same. So I am not sure what is the problem with this person who is asking about the same concept over and over again. Comprehension, or not good enough of the vocabulary? So again, I spend time with my kids and I do not have to hover over them always, because everyone needs their own space and time to develop independence.

Wouldn’t be better for her/him to stay with a family member who has time and doesn’t have to deal with an ASD child/”.… Now this  is the cherry on the top of the ignorance. When you always insinuating that the child might feel left out , sending him/her to a family member would definitely make them feel unwanted.

I want to raise children when they feel wanted ,loved close to me and know, regardless what is our current situation we will be together thick or thin. What am I teaching my children if I send them away to a family to look after them, so I can take care of the special-need child?  I want both of my kids to know, there are extreme situations, when  this is necessary , like the time when Amin was in ICU and my daughter was not allowed to come in with me. She stayed with her grandparents while I stayed in the hospital. Even at that time, every day I came to see her, talked to her every hour she called. That is an extreme time, but no other time proved to be this way. We have to teach kids to learn to adapt to anything that may arise, and compromise. Our life is not just compromise, we have a lot of fun, and yes we do give up things at times because something came up. That is life, the things we plan not always work out the way we want it. If we buckle and cry about it, we will raise kids who will never be able to comprise and deal with changes.

For those people who felt sorry for my daughter  that she would never be able to get married because of her brother…Just know she would never want to marry into a family where a special need individual is unwanted or looked down upon. There are plenty of families who are open-minded and that is all we need to know at this time.

In conclusion, if you see your typical sibling child as a victim, she/he will be a victim. If you see them as equals, and see how they grow into a responsible adult, than they always be that way. No, I do not see my daughter as a victim of being a sister of an ASD child. She had learned a lot from this situation and became a strong, compassionate, loving and very intelligent young lady.

 

 

Apr 18

Free online Workshop

There is a free online workshop sponsored by Momsfightingautism.com on April 26th and 27th 11am-8pm EST. Here is the time converter link to make sure  you won’t miss this great opportunity .

This two days event will focus on “Thriving from Adolescence to Adulthood with Autism, Preparing for Independence and Growth”.

this is a great subject we all need to focus on, because our kids are growing really fast and we need to prepare for their future. we must do everything in our power to ensure them an easy transition, and to be able to look after them, make decision for them if they are not able.

This event needs pre -.registration. Click on this link below to reserve your spot.

http://clicks.aweber.com/y/ct/?l=EbpxY&m=3iJEuARdoJh4sR5&b=zhDJUoqZK5nl2i94Kd9B2A

 

Here is the list for the speakers.

Chantal Sicile-Kira
Chantal Sicile-Kira’s passion for empowering others has led her
to become an award-winning author of five books, speaker, and
leader in the field of adolescence and transition to adulthood. She
has been involved with autism for over 25 years as both a parent
and a professional on both sides of the Atlantic

Greg Zibricky, CFP
With nearly 30 years of experience, Greg is recognized and regarded
for his expertise in the fields of Financial and Special Needs
Planning. He specializes in asset management, lifetime income
strategies, life insurance solutions and trust funding. Greg has in
depth experience working with people’s most difficult life
transitions.

Tom Ott L.C.S.W.
Tom is a Licensed Clinical Social Worker with over 35 years of
experience in assisting and supporting individuals with
intellectual and developmental disabilities and their families.
Presently he supports people through his individual and group work
in a specialty clinic and he also assists people in making a plan
for their future, based on their desires, situation and options. He
works at a voluntary, non-profit agency and has collaborated with
many other voluntary agencies and governmental partners.

Laura Shumaker
Laura Shumaker is a nationally recognized writer, autism and
disabilities advocate. Her essays have appeared in many places,
including the New York Times, CNN, NPR, and in a popular autism and
disabilities blog for The San Francisco Chronicle. Her oldest son
oldest, Matthew, is the subject of her book.

Nathan D. DeCorpo
Mr. DeCorpo is a practicing attorney and a member of the National
Association of Elder Law Attorneys as well as a Committee Member of
the Trusts and Estates Sections of the Queens and Nassau County Bar
Associations. Mr. DeCorpo is a frequent speaker on issues of asset
preservation and works directly with the Quality Services for the
Autism Community.

Mitchell Weisbrot
Mr. Weisbrot is now a Special Care Planner at CWP and currently one
of only 127 Chartered Special Needs Consultants in the country. He
was presented with the “NY Mets Spirit Award” in
recognition of his efforts to enrich the lives of individuals with
disabilities. Mr. Weisbrot has three sons on the autism spectrum.

Apr 15

Caretakers of an Autistic child

mother-child-hand-630x280I wrote about some very basic traits of an autistic person in my previous post. These might be look simple to you, but it is important for all who are effected by this disorder.

There are some things that I want you to consider when you are dealing with a parent/caretaker who has an autistic individual to care for. 

1).It’s been said that parents/caretakers of and ASD kid are like  combat solders. This description couldn’t be more precise. At least in my life that is certainly the case. As mush as my son improving, we still have our daily challenges and new issues to figure out.

These parents need to be on alert 24/7. They have to watch their kids so they don’t run away, they won’t harm themselves or others at times. They need to develop an escape route if there is a major meltdown, or over-stimulation coming on their way. Help the children with sensory issues that requires intense physical activity. Extreme fatigue from all those sleepless nights. 

2).The planner. A detailed planning for every trip or outings, to cover all issues that may arise. 

3). The patient. Parent/caretakers of an ASD child develop a great amount of patience. They have to, otherwise life would be more difficult.  It is not unheard of when these adults can watch the same movie, sing the same song, draw the same picture over and over again with a smile on their face.

4).The medical professional. Many of the children with ASD have medical problems. Some more serious than others. The parent need to learn how to respond to those emergencies, how to take care of the kids until the ambulance will arrive, or be able to take them to the hospital. Learning CPR is a must, learning about the medications they take is essential, right down to all the side effects. How to respond to certain health issues in  not the most conventional way. Learning the effect of all the medications and supplements. Preventing illnesses and accidents as much as possible.

5) The dietitian. This skill had to be learned too. Our kids have lots of environmental and food allergies. We had to research and relearn to cook, and make all the fast-foods they would like from scratch. We learn to make flour, bread, hide vegetables in their food. Investigate the source of the food, to get the cleanest and a most nutritional value.

6). The farmer.  Oh yes, this is one that takes some time to get used to, but eventually it comes to us very easily. 

We learn to grow out food, so we can give our kids organic, without harmful pesticides or even worse GMO food. Some of us going as far as getting chicken and raising them for food.  

7).The Investigator. Many times we are forced to explore the source of supplements, foods,  the background of those who are teaching and giving therapy to our kids. We look into environmental factors, toxins that surround us at home and outside of our houses. Find the best and most trustworthy places for our kids takes a lot of looking into matters, and we sure develop a skill of an investigator.

8).The teacher and the therapist. We learn from our kids professional teachers and therapist, so we can carry out all that teaching at home too. Learning new technical words, abbreviations, taking data.

9). The Financial planner. This one is another difficult skill, but we have no choice but to learn it. In order to ensure a better future for our kids we have to be smart about financial planning. This is certainly my least favorite subject.

10) The researcher. Caretakers/parents have to look what resources and help are available for their kids through the state, or even private. This is not an easy job, when you have to be in touch and deal with a lot of bureaucracy.

Figure out the way how to get help that is quality and safe, had never been an easy task.

11).The Psychologist. Helping him/herself to come to terms with autism in a family, explain  this to the rest of the family. Consulting siblings and immediate family members, juggling with everyone’s emotions as well as your own.

These are only few things that parents with autistic children have to adopt to. We do it  gladly, but it would be certainly easier if others would take  it into consideration that our lives are not ordinary like the ones with typical kids. We have to be more involved in many different ways. So please, if that parent doesn’t answer your email right away, or answer your call or text, give them a break and know they would be more than happy to chit-chat with you, but they have much more serious issues to deal with at the present.

Please know if she /he is yawning while you are conversing with them, it is not because they think you are boring, (sometimes it might be the case) but they might not had a good sleep for days or weeks or even months. 

If they don’t accept your invitation for your dinner/pool party over and over again, that might be because the child’s schedule is in conflict.

If they are wearing sunglasses even on a cloudy day, it is not because they want to look cool, they might just be hiding they bloodshot eyes from sleep-deprivation or crying.

We ask you to give us a benefit of a doubt before you start judging us or labeling us.

 

Apr 12

9 Points I Want You to Know About Autism

Autism-Acceptance-001You need to be living in a deserted island in order to not know about autism. It is on every media outlet, and right now this month is autism awareness month, so you get a double dose about this subject.

We hear about acceptance, red flags, struggles, milestones, celebrations. Those are all our every day life’s occurrences, just like when you have a typical kid.

Most of us have  neurotypical child, so we all know what we do for them, what we talk about , and the same goes for the kids with autism, but it might be more detailed and a bit more deeper.

Still, we have a long way to go to see more defined acceptance and understanding. So here are a few tips for those who are not living with and ASD child, but want to know more about them.

1).The ASD child might not be verbal, meaning doesn’t talk, or have no functional speech, but they still understand what you are saying. So watch your words, because words can hurt just as much as physical harm. We should all be accountable of what, when or how we say  things to these individuals, and their caretakers.

2).Also, try to be respectful, because there is no reason not to be. Here is a main reason why we should give them respect…these kids have to make a huge effort to learn things that it comes to the rest of us  naturally. Yet they still manage to get up every morning and go on with their lives,even put a smile on their face. Lets face it, they work much harder than you and me together.

3).When you talk to them talk to them as you would to anyone else. They do understand, and they might even reply if they are verbal. Give them a chance and treat them as your equal.

4). Please don’t get hang up on the famous “eye contact” subject. If someone is looking at you it doesn’t mean they listen to you, or if they don’t look at you, they might be very well listening. Trust me, been there done that. Sometimes I am annoyed by certain people when they talk to me. I look at them, but learned to tune them out and have no clue what they saying nor do I have any interest of what they are telling me. If you wonder, NO, I am not autistic just a typical human being.  Now, these kids  may not look at you, but they hear and comprehend everything you have to tell them. So don’t get offended if they don’t look at you.

5). If you witness one of their meltdowns, don’t jump into conclusions. We all have those moments when we want to scream and stomp and cry. Sometimes we do it, in private, or have a good cry, or we call someone to vent. These kids don’t know how to cope when they are overwhelmed, and many times they can not verbalize their complex feelings. These individuals are the most honest, transparent human beings you will ever meet. They will never hide what they feel, nor will they disguise it like us.One of the amazing qualities they have. that you will  never have to worry about mind games when you are dealing with autistic kids/adults. So how cool is that. Just knowing this should be enough of an excuse to cut them some slacks and overlook their tantrum. That would be a great help for the parents and caretakers too. One less stress to deal with, they don’t have to endure the stares, and ignorant comments.

6).When you know someone with this diagnosis, don’t condemn them or treat them as such. Look at their ability not their disability. Trust me, when you really get to know them, you will be so surprised how much gift these kids can offer to the world.

7). Look at these kids/adults as you would any typical individuals. They have their own unique passion, interest of  many things, or just one area that gives them fascination. They have dreams and goals they want to achieve. Help them to fulfill their life goals by respecting them, and encourage them.

8).Forgive them and find excuses for their shortcomings. We all have faults, we just hide it better.

9).Before you judge, learn more about autism, and accept that not everyone is doing things the same way, and not everyone progresses the same rate. We are used to a certain social norm, which we created for ourselves, we need to be open-minded and allow others to create their own norms.

This year, this month is an autism acceptance month. Please accept our kids as they are, and pray that they will reach their full potential.

Thank you, from a bottom of my heart.

Amin’s mom

Apr 07

Forum on Autism and Environment

toxic-chemicalsWe all heard many contemplation what may cause autism. The numbers are staggering, and rising every year.

There is speculation about environmental influences regards to this epidemic, but none has been scientifically proved.

Although when we eliminate or even reduce toxins from out life, we might be able to see  some positive sings.

The National Institute of Environmental Health Sciences will have a forum on April 22nd, 2014, where they discuss environment and autism.

This event is open to general public and registration is required.

Here is more information regards to this event from the Autism Speaks website.
The National Institute of Environmental Health Sciences (NIEHS) is hosting a virtual forum on autism spectrum disorders and the environment on Tuesday, April 22 from 2 to 2 pm Eastern. The live webcast will be open to the public and feature a panel of autism research experts who will take questions. Registration is required and now open here.
Questions for the panelists can be submitted beforehand as well as during the webcast via the website or the @NIEHS Twitter account using the hashtag #autismforum2014. The panel will answer and discuss as many questions as possible during the live event.
The panel will include NIEHS Director Linda Birnbaum, Ph.D. and four autism research experts:
* Alan Brown, Columbia University
* Irva Hertz-Picciotto, UC Davis MIND Institute
* Avi Reichenberg, Ichan School of Medicine at Mount Sinai
* Heather Volk, Keck School of Medicine and Saban Research Institute, Children’s Hospital Los Angeles

Apr 04

Adult Medical Survey

ARI announcing a new research survey for adults with autism. It is a perfect time to complete this survey to help documenting  medical problems associated with autism in adulthood.

please take time to complete this survey.

Participate in Research that Makes a Difference During Autism Awareness Month  

ipad
April is Autism Awareness month — the perfect time to take part in ARI’s Research surveys. Participants who complete the new Adult Medical Survey and/or the updated ARI E-2 Survey will automatically be entered for a chance to win an Apple iPad.  

Adult Medical Survey 

If you have a son or daughter age 18 years or older, or you are on the autism spectrum and are age 18 or older, we would appreciate it if you could complete this survey. 

Who: Chief Investigator Steve M. Edelson, Ph.D., Executive Director,  and Valerie Paradiz, Ph.D., Autistic Global Initiative, Autism Research Institute. 

What: Comprehensive, consent-based online survey. The survey may take up to one hour to complete – you can start the survey and then save it, and return and complete it another time. The survey is online at:www.AdultASDSurvey.com. 

Purpose: The purpose this survey is to document medical problems commonly associated with adults (18 years and older) on the autism spectrum.

Compensation: Participants will be entered in a contest to win an Apple iPad. The first drawing will be held on May 1, 2014. Note: one entry per individual with ASD. 

Where: International – this study is open to participants worldwide.   

When: Starts April 1, 2014.

Take the Adult Survey  

 

Parents & Caregivers Urged to Complete Updated ARI E-2 Survey to Identify Autism Subtypes   

 

Who: Chief Investigator Steve M. Edelson, Ph.D., Executive Director, Autism Research Institute.
 

What: Comprehensive, consent-based online survey. The survey is lengthy and may take up to two hours to complete – you can start the survey and then save it, and return and complete it another time. The

survey is online at: www.AutismResearchSurvey.com. 

Purpose: (1) To corroborate previous research on subtyping autism and (2) to determine, based on parent responses, possible underlying causes and the effectiveness of various interventions in relation to each subtype. 

Compensation: Participants who complete the entire survey will receive a complimentary one-year subscription to ARI’s science newsletter, the Autism Research Review International. In addition, participants will be entered in a contest to win an Apple iPad. Note: one entry per individual with ASD.   
Once the data has been collected and analyzed, we will send a summary report to all of the participants. If we do replicate our previous findings, we will also inform each participant to which subgroup their son or daughter belongs to.

Where: International – this study is open to participants worldwide.   

When: Data collection is ongoing, but the next drawing will take place on May 30, 2014. The winner of the drawing will not be announced publicly. 

 

 Take the Subtype Survey  

 

At the Autism Research Institute we have focused on providing information that is unbiased and broad-reaching, to assist families in making informed treatment decisions. If you can't join us live for the lecture and Q&A on the day a talk occurs, you can catch the replay online. Free certificates of participation are available for select talks upon completion of a brief knowledge quiz. Visit ARI's Online Learning site  

Apr 03

Autism Awareness In Riyadh SA

20140403_102442It’s been 2 years we moved to Riyadh, and this is the second year I will attend a program that king Faisal hospital’s autism team offers to the general public.

This year I know more people , so they are able to tell me about all the happenings during this month. Sadly I already missed  yesterday’s event due to rain.Yes, coming from Florida rain means nothing to me, but it has a new meaning and side-effects when you live here in Riyadh. We did not have any rain for a while, but when it rains it pours, and it causes danger on the roads.

Today in King Faisal Hospital there will be an event called “LEARN” It will be held in the hospital at the North Tower from 1 pm-5 pm. This event welcomes everyone from the hospital and general public as well. So make an arrangement, get a sitter and attend this event this afternoon. You will be going home with information that can potentially benefit your entire family. As for those who has no family members with autism, you will gain knowledge and understanding and more compassion toward these individuals and their caretakers.It is certainly a must attend event.

April 4-5 there is a program by the same group “ASK” This program will be carried out with highly educated personnel who can answer your questions about autism. They will be in a public place, welcoming you with your concerns and questions. Don’t miss this opportunity! The tentative places are Centria Mall and Panorama Mall.  The time will be 4 pm – 10 pm. The window of opportunity is big enough for all the people who are busy with work and life, yet they still be able to attend at one point of time.

For me Panorama mall works great because I can get all my gluten-free stuff from Danube. Sadly I know nothing about Centria mall, but I am certain after they answered your questions you can find  some fun there too besides getting your shopping done.

April 8 2014, there will be a lecture to professionals and families about developmental milestones in typical children.This event will be held at Prince Salman Auditorium, KFSH&RC, Riyadh.

This lecture will shed light on typical milestones in children and their relation to other disorders. This is another must attend  event for all, as they will discuss the red flags you must identify, and early screening. 

April 9, 2014. On this day  a parent training will be held. Behavioral management of ASD and ABA approach. Fathers and mothers are welcome, but please leave your kids with a responsible caretaker so you may be able to concentrate on the lecture. You need to sign up for this event, as the seating is limited. I will include the emails and the websites link on the bottom of this post.

The speakers will be Dr, Timothy Charles Fuller, and Dr, Christine Marie Coffman. I highly recommend this parent training to all who has any contact with ASD children.

April 10th, 2014 will be a workshop for professionals regards to ABA approach. the speakers will be Dr. Fuller and Dr. Coffman in this event.

April 11-12, 2014 an event will be held “ASK” This will be at Panorama mall and Riyadh Gallery from 4pm -10pm.

Professionals will answer your questions about autism. If you can’t make it on April 4th and 5th , this time hopefully you all can get your questions answered.

April 19th, 2014 the event called “STEP” will be held at King Fahed stadium at 6:30 pm. This event aiming to make cultural  awareness of ASD in the community.  This will include lots of events, and the one that will stand out is the “walkathon” with celebrities. This event will be a great family outing, learning and embracing autism, gain more knowledge, understanding and compassion.

Here are the links for more information regards to all autism awareness related questions you have. Feel free to email or visit the websites for more information on these events.

cfar@kfshrc.edu.sa

cfar.kfshrc.edu.sa

966 114647272 extension 36701

966 11 557 6616

I encourage you to attend as many  happenings as you can, or convenient for your family. These programs are meant to benefit your entire family, make you understand autism, embrace it, and tackle the issues you might have. You may be able to gain more information about resources available in this area too.

 

Disclaimer; I have no affiliation with King Faisal hospital, the Autism research center. I gain no benefit  from passing this information to general public. I wrote about this event solely to relay information that might be a potential benefit to you. 

 

 

 

 

 

 

 

 

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