To the family of Mikaela Lynch, please accept our deepest sympathy and condolences. Mikaela’s death was a very unfortunate accident that has had a whiplash effect in many ways. First, your child was missing, second your child dies, then all of a sudden thousands of people out of right field are pointing fingers at you and playing the blame game.

Blaming the family is just wrong and it is heartless. These people are heartbroken and grieving.  They need us now because they are hurting. There are people out there saying that Mikaela’s parents were not prepared for disaster and that they should’ve been paying attention. Some say they are bad parents and this is all their fault. I find these comments unacceptable, ignorant, demeaning, and damaging.

Being a dad of a wonderful autistic child, I can do everything I can to prevent an accident or avoid a disaster but disasters and accidents will impose their own will when we least expect it. From our experiences with Angel, we know that autistic children are attracted to foreign objects, animals, plants, lights, and things that are colorful. Children with autism are also drawn to water. In an effort to appease their curiosity, some of them look for ways to explore their surroundings without understanding the potential dangers around them. This lack of awareness of danger is multiplied because their cognitive skills do not always coincide with their chronological age. This could mean a five-year old having the cognitive skills of a one-year old. So where does this leave us as a community?

The tragic death of Mikaela is a reminder that wandering in the autism community is a REAL issue that NEEDS national attention.

When states do not extend Amber Alerts to cases like Mikaela’s and the news media ignores the missing person reports, the chances of these children being found alive decreases tremendously. When the public is not properly addressed regarding the concerns of the autistic community, there will be many people who will make ignorant comments. This is wrong and unfortunate.

To those who criticize, please remember that when you point one finger at the parents and you ask the wrong questions, there are three fingers pointing back at you with three suggestions:

1. learn about autism and its characteristics
2. show support to parents and organizations who deal with autism
3. don’t cast any blame whatsoever without having been a parent AND a parent of an autistic child
   (and even then blame helps no one)

I do hope that the government and media will see a missing autistic child report as a more serious matter and put things in place to minimize these cases.

Lastly, I openly challenge anyone who really feels that these parents should be blamed and scorned because of the circumstances leading to their unfortunate loss.

R.I.P Mikaela Lynch, Owen Black, Drew Howell and all children with autism who have lost their lives.

Please visit the National Autism Association  and AWAARE Web sites for more information on wandering and how we can keep our children safe. You can also sign up to get their free Big Red Safety Box.

Please share your thoughts in the comments.

Sincerely,

Dad of Angel

The post Autism and Wandering: How Many More Must Die? appeared first on Sailling Autistic Seas.

Do you know what today is? It’s my “Bloggyversary.” Yes, I am channeling my inner Tony Toni Tone because Sailing Autistic Seas turned 1 today.

I have to admit that this Web site has been therapeutic for me. When Angel was diagnosed with autism, I needed to find an outlet to express my emotions and share information with other parents. Sailing Autistic Seas has been that outlet.

When Angel was diagnosed, I felt alone. I was not physically alone but I felt emotionally alone. I wasn’t sure how to articulate my feelings to friends and family because I was still processing them myself.

This Web site has given me great opportunities to meet some wonderful people and expand my support system. For a parent of a child with autism, this kind of support means more than words can ever express.

I know that I cannot put a price on what it feels like to know that someone understands how I feel. It is priceless! I also know that there are not many special needs bloggers who look like me. Trust me I have looked. I think the few of us that exist are trying our best to fill a void in the special needs community. This whole experience has been a journey that I have embraced.

From the moment I wrote my first post, I was committed to posting twice per week. But life happened. As home, parenting, and work commitments increased, my guilt of not devoting enough time to this Web site increased as well. Then, I made a decision to go easy on myself. This was not supposed to be a source of stress but a source of stress relief. So, I decided to write when I have something to say.

I have learned so much over the last year and I look forward to learning more. Over the last year, I have also developed a keen interest in special needs advocacy. I want to pay it forward and help others as I have been helped. 

I want to thank each and every one of you for following my journey with Angel. Your support means so much and I hope I have been able to offer you the same support when you need it.

Sailing Autistic Seas will continue to evolve. Sailing Autistic Seas will also continue to be  informative, resourceful, and engaging. Now, I have some questions for all of you. What will you like to see more of on my Web site? What has been the most helpful? What has been the least helpful?  

Share your thoughts in the comments below and thank you for sailing the seas with us this past year. I appreciate you staying on board as we sail into another year.

Sincerely,

Miz Kp

The post Sailing Autistic Seas Turns 1 appeared first on Sailling Autistic Seas.

I am sharing this story to let you know that I love my son unconditionally. I love him and yet I have spent Mother’s Day after Mother’s Day feeling sorry for myself. There have been no unprompted Happy Mother’s Day greetings from Angel. There have been no cards and pictures that he made without help.

This Mother’s Day, I will make a conscious effort to adjust how I think. I will not feel sorry for myself this year. I will not spend the day wallowing in self pity. I will not spend the day comparing Angel to typical kids his age who can make cards and presents and wish their mothers Happy Mother’s Day!

I will focus on the fact that my son loves me— unconditionally.

When Angel wraps his little arms around my neck and says, “Hug? Hug? Awwwww.” I know that he loves me. When he smothers my cheeks with kisses, and says “muah,” I know he adores me.

Angel has taught me to pay closer attention to the nonverbal ways of expressing love, the “action” ways. You know, the ways that go beyond symbolism and words.

I admit that I am a work in progress. However, part of accepting my son and everything that comes with his autism diagnosis is realizing that he is who he is and I have to adapt.

He may not understand Mother’s Day and what it means but I will take meaning from the ways he show­­s love toward me every day.

Happy Mother’s Day! to all the wonderful mothers and grandmothers! You are a true blessing. Hope you have a wonderful and blessed day!

What does Mother’s Day mean to you? Please share your thoughts in the comments below.

Sincerely,

Miz Kp

The post Mother’s Day: He Loves Me! He Loves Me More! appeared first on Sailling Autistic Seas.

Answer: Columbia, MD

For more information on the Sensory Friendly Movie program visit the AMC Theaters Web site.
This program is done in collaboration with the Autism Society.

Thanks to everyone for taking part. Look out for next Thursday’s question. You never know, it could be the week that the winner gets a prize.

Have a great weekend.

Sincerely,

Miz Kp

The post Trivia Thursdays (No. 2- Answer and Winner) appeared first on Sailling Autistic Seas.

Any week could be a prize week for the person who answers correctly. You never know when the prize will be awarded, so it is a good idea to play weekly.

Now on to the rules:

• Mandatory: You must visit the link provided for that week to enter and leave a comment on the Trivia Post.For additional chances to win:
• Leave your answer in the comments on Facebook and Like us at https://www.facebook.com/autisticseas
• Tweet your answer and follow us on Twitter at https://twitter.com/autisticseas.
  If entering via twitter use the hashtag #SAStriviathursdays
• I will assign a number to each entry with the correct answer and the winner will be chosen by random.org’s random number generator.
• The winner will be announced on Friday mornings and if a particular week is a prize week, then the winner will be notified of his/her prize.
• The last entry will be accepted at midnight EST on that Thursday.

TODAY’S QUESTION: What U.S. city held the FIRST sensory friendly film for families of children with autism?

Feel free to message me if you have any questions and please spread the word. Thank you.

 Sincerely,

Miz Kp

The post Trivia Thursdays (No. 2) appeared first on Sailling Autistic Seas.

Answer: The Education for All Handicapped Children Act was signed into law by President Gerald Ford in 1975. It was also known as P.L. 94-142. This was the first piece of legislation that sought to guarantee FAPE for every special education student. It went through a series of amendments and became the Individuals with Disabilities Education Act (IDEA) in 1990.

We had a few correct answers but only one winner was picked via random.org.

Congratulations Angie!

Thanks to everyone for taking part. Look out for next Thursday’s question. You never know, it could be the week that the winner gets a prize.

Have a great weekend.

Sincerely,

Miz Kp

The post Trivia Thursdays (No. 1- Answer and Winner) appeared first on Sailling Autistic Seas.

Any week could be a prize week for the person who answers correctly. You never know when the prize will be awarded, so it is a good idea to play weekly.

Now on to the rules:

• Mandatory: You must visit the link provided for that week to enter and leave a comment on the Trivia Post.
  For additional chances to win:
• Leave your answer in the comments on Facebook and Like us at https://www.facebook.com/autisticseas
• Tweet your answer and follow us on Twitter at https://twitter.com/autisticseas.
  If entering via twitter use the hashtag #SAStriviathursdays
• I will assign a number to each entry with the correct answer and the winner will be chosen by random.org’s random number generator.
• The winner will be announced on Friday mornings and if a particular week is a prize week, then the winner will be notified of his/her prize.
• The last entry will be accepted at midnight EST on that Thursday.

TODAY’S QUESTION: What piece of legislation was signed into law in 1975 to provide students with disabilities a free and appropriate education?

Feel free to message me if you have any questions and please spread the word. Thank you.

 Sincerely,

Miz Kp

The post Trivia Thursdays (No. 1) appeared first on Sailling Autistic Seas.

This week I present to you Edwin C. Bryner, Jr. a 59-year old stay-at home married father of two boys who are on the autism spectrum. Edwin lives in Dunbar, PA.

What is the first thing that comes to your mind when you think of autism awareness?

It’s not fair; I wanted normal smart kids.

How old was your child when he or she was diagnosed with autism? How old is your child now?

Both of my sons were diagnosed at age 5.

Edwin’s Oldest Son, Jeremy
(Jeremy is 19-years old.)

Do you think that autism acceptance should be included in the national dialogue about autism awareness?

Yes, because there are so many more autistic people.

How can we translate what we know about autism into actions that can help our children and the way they are perceived in society?

My children were treated like they were re******!

Name some action words that you would like society to embrace so we can propel autism awareness and acceptance forward. Give a reason for each word.

Equal: So they can be accepted in society.

Consumer: They can buy goods or services.

Able-bodied: Most can be trained for employment.

Do you think that Autism Awareness Month is effective in educating the public about autism? What would you like to see more of? What would you like to see less of?

We need more ways for caregivers to get funds to live on while staying at home.

What impact, if any, has autism awareness had on your family?

My oldest is high-functioning PDD and my youngest is diagnosed with Aspergers Syndrome.

Is there anything else you would like to add?

Yes. I work on Twitter for #AutismFriendlyBusinessLLC and I have been helping @Kevin_Healey in his anti-bullying campaign!

Thank you, Edwin for sharing your thoughts with us.

You can find Edwin at:

Twitter: https://twitter.com/BrynerEdwin

Please show your support in the comments below.

Final Word: Thanks to Edwin and all of the other parents who shared their thoughts with us during Autism Awareness Month. As we move forward beyond April, let us remember that autism awareness does NOT end on April 30th. For us parents, it is something we live with every day. Our hope is that awareness and acceptance can transcend the boundaries of our lives and spread throughout the societies that we and our children live in.

Thanks to you my readers for your support. It is always appreciated.

Sincerely,
Miz Kp

The post Autism Awareness: Moving Forward appeared first on Sailling Autistic Seas.

This week I present to you Nell Escalante who will share her thoughts with us on autism awareness. Nell is a Bronx Latina who sews, designs, crafts, mothers two special needs kids (“M” and Dan), and loves the God that created it all. Nell says: “It’s all good and it’s all me.”

What is the first thing that comes to your mind when you think of autism awareness?

Honestly, these days, what comes to mind is all of the commercials that will be talking about autism and how my 10-year old will react to them. My son’s awareness of his own diagnosis happened last year during Autism Awareness month. He saw a commercial and point blank asked me if he had autism. He already knows his little brother has autism. It caught me off guard and I asked him if he really wanted to know and he said he didn’t know and didn’t want to talk about it anymore. This was good though because it started a series of conversations from that point on and this year when the commercials came on he was more open to talking about it with us. So yes, at this moment, that is what comes to mind.

How old was your child when he or she was diagnosed with autism? How old is your child now?

I have two on the spectrum. The oldest is 10 and he was diagnosed at age two. He was easier to diagnose because he had classic autistic behaviors; routine driven, poor eye contact, liked to rock ( I mean on the couch, not with a guitar, lol) aversion to change, etc. My youngest , he’s six, was harder to diagnose because he had great eye contact and was very affectionate but I knew something was amiss. He wasn’t talking at 15 months and had super sensory issues. The neurologists kept telling me to give it some time when I brought him in with my concerns this early (at 15 months). He was finally given a diagnosis at two as well.

Do you think that autism acceptance should be included in the national dialogue about autism awareness?

Yes, of course. I think Autism Acceptance is about giving a voice to those that actually have autism. To learn from their perspective, to see through their eyes. I find this fascinating especially since my own 10-year old is grappling with his diagnosis as he is becoming more aware. I would want him to feel accepted and eventually would love for him to meet other autistic people who have accepted their strengths and limits (and we all have limits!) and feel empowered.  Awareness and acceptance go hand in hand. People need to first become aware before they begin to accept.

How can we translate what we know about autism into actions that can help our children and the way they are perceived in society? 

Let me continue from where I left off at question #3. Autism Acceptance does not mean that everything is okay and these children/adults do not need any services. This is why we need both awareness and acceptance. When we become aware about what autism really is, we realize that autistic people are smart, have their own personalities and gifts, and can be functioning members of society given the right settings and support. It goes without saying that the school system needs to continue to accommodate our children’s needs. This is their right, it is not a nice thing to do, it is their right, as human beings…and not only in schools but in restaurants, after school programs, the doctor’s office, etc. There should be a level of awareness and respect that just translates into decent human kindness.

Name four action words that you would like society to embrace so we can propel autism awareness and acceptance forward. Give a reason for each word.

Respect: Society needs to truly know that our kids are different not less.  Like  I said before, it’s not social action to accommodate our children, it is their right.

Kindness: This goes without saying. There is a lack of kindness in our society on all levels. I think that disability is a great opportunity to manifest kindness. I know this from experience.

Joy: Autism is not a death sentence. There continues to be joy in caring for my children and in their everyday lives. We laugh a lot in our house. There are challenges but there are great rewards.

Respite: In order to care for our children, we need to be cared for as well. It’s a whole package. It’s not just obtaining services for our children, it’s also parents getting a much needed break. My husband always says that the kids need a break from us just as much as we need a break from them. Unfortunately, not all of us have support systems in place like friends and family that can care for our kids. We need more respite programs so that families can continue to live life fully.

Do you think that Autism Awareness Month is effective in educating the public about autism? What would you like to see more of? What would you like to see less of?

I think it is quite effective. I would like to see more practical approaches to autism awareness. Society should be encouraged to do something nice for a family dealing with autism. Offer babysitting one night, or to cook dinner for the family, or to pay for a manicure.  It’s these little things that mean a lot. The other day, my friend’s from church did this for me. They took me out to get my nails done. This is autism awareness. It meant the world to me.  Being aware that families like ours have it hard and we need help, and if you are like me, sometimes we are afraid to ask.

What impact, if any, has autism awareness had on your family?

I kind of mentioned this in question but I do have to credit Autism Awareness month with ushering my 10-year old’s son into his own autism awareness. I always wondered what the right time was to tell my son about his diagnosis. When I inquired at school, they told me to wait for him to start asking the questions, that is when you know he was ready. The commercials during this month prompted my son to ask the questions and that has been quite “impactful” in our family.

Is there anything else you would like to add?

I would like to thank you for this opportunity to give my two cents about Autism Awareness month.

Do you plan to celebrate Autism Awareness Month? Why? Why not?

Not really. I think this month benefits those that do need to learn more. It’s my life. With two on the spectrum, it’s pretty difficult not be aware of autism around these parts! lol.  I liken this month to Black History Month or Hispanic Heritage Month or Woman’s History month. It helps you to stop and think about the achievements of those that embody these cultures (gender). Same with April and Autism Awareness. These months are needed to bring awareness to those that don’t have it.  For those of us that do have this awareness, it’s life as usual.

Thank you, Nell  for sharing your thoughts with us.

You can find Nell at:

Facebook: Nelsec Designs She talks about her  about her DIY fashion blog and her online shop here.
Author Nellie Escalante Here she talks candidly about her life as a special needs mom and about her upcoming book.

Twitter: @Nelesc

Portfolio: Nelesc’s Photostream

Web site: Nelesc Designs

Please show your support in the comments below.

Sincerely,

Miz Kp

The post Autism Awareness: Translating Into Action appeared first on Sailling Autistic Seas.

This week I present to you Nick’s Mommy who will share her thoughts with us on autism awareness. Nick’s Mommy and her only child, Nick, live in New York City. 

What is the first thing that comes to your mind when you think of autism awareness?

Acceptance and respect for our children.  I want people to know that a person with autism is just like everyone else, they have feelings and they deserve respect.

How old was your child when he or she was diagnosed with autism? How old is your child now? 

Nicholas began evaluations when he was 22 months and at that time he was labeled PDD-NOS.  He is now six and a half with a diagnosis of autism.

What is your perception about the way autism is portrayed in mass media?   Give an example or examples.  

I think that any news coverage about autism is a good thing   Recently there was a story that the age of the grandfather may raise the risk of a child being autistic – which sounds somewhat odd but what if that finding combined with something else leads to a big discovery. I want to know that studies are being conducted and I want the news to cover these studies.

As far as the entertainment media and how autism is portrayed in television and movies – it’s getting better.   I recently saw a wonderful program on MTV called “World of Jenks” which dealt with a young man with autism – so positive and moving, we need more stories like this one.   There are small, independent movies with positive images of autistic children, but they don’t get the big releases.   I cannot tell you how many times people have mentioned to me Dustin Hoffmans’ Rain Man character as their only reference to an autistic individual – this movie is about 25 years old.   It is time for a change.

Do you think that autism awareness has an impact on this portrayal?  

Absolutely, especially during autism awareness month.  There are many activities going on in April to spread awareness and news media will have a few stories, but so often the images that are portrayed are very negative or always so sad.  Let’s see some stories with autistic adults who are working and independent and happy.

What responsibility do journalists have to give accurate portrayals of autism in their news reports and opinions?   

I am sure that the journalists do their research so that the stories they put forth are as accurate as possible but I would like to see more interviews with “regular” parents raising children with autism, not so much the celebrities who have become spokespersons -  not at all minimizing the impact of autism in their lives – but it’s  not the same as a family raising more than one child with autism and their struggles to find appropriate  school placements or being able to work outside the home.   I would hope that journalist would do more stories about early intervention and how important having the appropriate educational opportunities can make a huge difference to a child with autism.

Have the perceptions of autism in the media affected the way people react to your son and other children with autism?   

I have been very vocal about Nick’s diagnosis from the very beginning and sometimes I might get the “I’m so sorry”or “He doesn’t look autistic” comment.   I don’t get offended at all and just make sure to let them know that he understands everything they are saying and to feel free to talk to him – he won’t bite!    I try to break the ice and let them know that it’s OK, we are all right.

How do you feel about the prevalence of autism-related news stories during autism awareness month? Do you think it would be a good thing if this coverage was year round? 

It’s fantastic, there are so many activities happening this month and its great to hear about them.    I would love that autism awareness was a year round event, but it’s up to us as parents to spread awareness during the entire year and don’t let it become last months’ cause.

If you could give advice to others regarding what they read and hear about autism in the media, what would it be?

Don’t assume and don’t act like an expert just because you happen to see a story on the news.   It’s impossible to learn everything about autism based on a five-minute news segment or a story you read about a celebrity’s child being cured – please don’t assume that every child you meet with autism is the same.   Get to know your neighbor’s child, your co-worker’s family member and ask questions.

Is there anything else you would like to add?

Just that I’m thankful anytime I hear about autism awareness on social media, on television, in newspapers.   It’s important to get information to parents whose child is newly diagnosed or who thinks that possibly their child might be autistic.

Do you plan to celebrate Autism Awareness Month? Why? Why not?  

Absolutely!  I feel that as Nick’s mom its my responsibility to get the word out and let everyone know that Nick is autistic and he is wonderful!

Thank you, Nick’s Mommy for sharing your thoughts with us.

You can find Nick’s Mommy at:

Twitter: https://twitter.com/ASDNicholasMom

Please show your support in the comments below.

Sincerely,

Miz Kp

The post Autism Awareness and the Media appeared first on Sailling Autistic Seas.