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Posts Tagged ‘Advice’

Teaching Safety in Conjunction with Re-Launch of the Autism Safety Project

December 13, 2011 5 comments

Safety is a critical part of all of our lives, whether we are at home or out in the community, alone or with loved ones. Being aware of our surroundings and taking precautions to stay safe is even more important for individuals with autism and their families. The Autism Safety Project is designed to provide families affected by autism with tips, information, expert advice and resources so that everyone in our community can stay out of harm’s way.

Since we have launched the updated Autism Safety Project this week we wanted to know your best tips and ideas about teaching safety to your family and friends.

Diagnosing Autism Spectrum Disorder

June 20, 2011 48 comments

Parents are usually the first to notice the early signs or “red flags” of autism spectrum disorder.  Maybe it was something different they noticed about their child at birthday party, or the child not developing like a sibling. What was the experience that led you to seek professional advice for your child?

How did you feel when you or your child received an autism diagnosis? What were your initial steps? What advice would you share with someone who has been recently diagnosed? 

The Autism Speaks 100 Day Kit and the Asperger Syndrome and High Functioning Autism Tool Kit were created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism or AS/HFA.

Please join us Wednesday, June 22nd at 5 pm EST for ‘100 Day Toolkit’ LIVE Facebook chat with the Family Services Staff. 

Advice for Asking Questions and Advocating for Your Child

December 30, 2010 4 comments

We are so thankful for the outpouring of advice that has flooded in for us to share with the Autism Speaks Community. Who better to give advice than you all, the people that know best! We have heard from people on the autism spectrum, parents, siblings, teachers, therapists, and beyond. Your advice has been broken down into categories, and we will post accordingly!

YOU are your child’s best advocate. YOU are their voice when they need it. YOU know your child best. It’s not about them; it’s about your child. –Marisa

The best advocator and educator for your child is you. So educate yourself on different forms of therapy and treatments. Find a great pediatrician. And learn to laugh and enjoy the journey, that little person needs you. And love them for who they are…an awesome child who just happens to have Autism. –Deanna

Believe – in yourself, in your child, and most of all in the bond you share. –Keith

Early Intervention is Key.  The sooner your child receives therapy, the better chances the child has to grow. Check out the public schools to find out which has the best special education program and do everything in your power to go to that school. –Caroline

People with Autism do not plateau in their learning abilities.  They will keep growing and learning with time, patience, and consistency. That is what I have found in my son. –Doreen

Know your school system and the services that are available for you and your child.  Fight for your child; do not let the school system bully you or your child.  Insist that your child be allowed to become the best that they can be. -Linda

Do NOT assume that school personnel know more than you do about your child or autism.  I am a special education teacher whose certification program only briefly covered children with autism.  There is no state teaching license, in Wisconsin, for the area of autism.  Visit your child’s school, unannounced, and observe the programming and interaction between students and staff, students and students.  Many times special education aides are the staff members responsible for your child’s day-to-day functioning.  Do not overlook them – they are a vital piece to your child’s success. –Sheryl

Remember, you’re not alone.  There are many untapped resources to help fund your child’s road to recovery.  Know your rights, and the rights of your child when looking for these State, Federal and School District funded programs. -Ian

Have lots of mirrors and practice social situations BEFORE you go.  One step beyond social stories…don’t script them…’improv’ any new situations and talk about possible feelings and reactions.  Practice making your body match your feelings AND practice hiding your feelings when necessary. –Mary

I got the best advice to embrace my son’s autism.  Never give up, and embrace it along the way. –Kristi

Stop trying to fix them, they aren’t broke. –Ruth

You will hear so many theories and receive so many suggestions about therapies that you MUST try. Proceed with an open mind. Proceed with caution. Look for objective evidence (data, proof) of claims that treatments are effective. But above all, do what works for your child and your family. –Kelley

I wish I’d known colic is not “normal.”  Although food intolerances are not the source of our son’s problems, having stomach aches and headaches certainly made it much more difficult for him to focus on our world.  If your baby/toddler has stomach problems or cries for “no reason”, have him/her checked for food intolerances, and if you are breast feeding, eliminate the major problem foods from your diet (milk and gluten are a good starting point) to see if it helps.  It may have a major effect on your child’s behavior. -Deniz

Be patient, go with the flow, seek the best therapy you can find, and love them through it all. –Sharon

Following the GF/CF diet has cleared up my son’s cloudiness….he became much more interactive with his environment and family.  It is important to be 100% all day every day to get results!  Set a time frame and gently ease into the diet so your child does not feel penalized, there are a lot of great recipes available and people to support you! Remember to keep carbohydrate intake low if you are GF/CF! –Dens

Don’t blame yourself. –Jon

Advice for Maintaining Relationships and Staying Connected

December 28, 2010 2 comments

We are so thankful for the outpouring of advice that has flooded in for us to share with the Autism Speaks Community. Who better to give advice than you all, the people that know best! We have heard from people on the autism spectrum, parents, siblings, teachers, therapists, and beyond. Your advice has been broken down into categories, and we will post accordingly!

Having a child on the spectrum can feel isolating enough.  Don’t be afraid to tell people about your child.  Everybody knows someone touched by Autism or Asperger’s! You never know how you might help someone else by simply opening the door. -Heather

As a sibling of someone with autism, the best advice that I could give is to teach the other children or child in your family what autism is and how to be the best support and role model for their sibling with the diagnosis. Ultimately, they can be a wonderful teacher, peer model and friend to your child as they grow up into adulthood and contribute to keeping the family strong through this journey. – Elif

Being a sibling to an Autistic child, especially being the only and oldest (such as myself) I recognize the importance of family relationships. Be honest and involve siblings with all decisions. Offer lots of private time because they do lose out on experiences when bringing an Autistic child to places such as Disney or even having friends over are too stressful. Be upfront about the responsibilities we will someday face but be cautious. I realized at 12 that someday my parents will be gone but small steps ease this realization. An open dialogue and allowing siblings to have a passion or hobby they can be immersed in is helpful. You may sense resentment at times and things may be said but never doubt that we love our siblings and will do anything for them. –Natalie

When our grandson comes to us after school feeling fried and close to a meltdown, I take him aside in a peaceful spot and just hug and hold him and let him know how much I love him. He comes around quickly and is happy again. –Donna

These children require a lot of attention every day but with the help of their parents, schools and professionals they can have a successful life. We are all in it together. –Rebecca

Remember to take time for yourself. A happy, healthy mom or dad is so important for any child, especially one on the spectrum. It’s usually you and your kids against the world, so take care of yourself, so you can take care of them. –Sarah

Don’t treat it like the end of the world, because it is not! It will always get better and easier with the help of family and friends. –Erin

It is not the end of the world. As our world was turned upside down I remember asking myself “why” “why us” where did we go wrong, what could we have done different. The truth of the matter is there is nothing that we could have done different; there is nothing we could have done to prevent this from happening to our daughter. Get together with parents in your community with ASD children and talk, cry, laugh share stores find someone on line that you can connect with DO NOT TRY TO DO IT ALL ALONE!!! –Katie

Advice to Help Planning for the Future

December 24, 2010 5 comments

We are so thankful for the outpouring of advice that has flooded in for us to share with the Autism Speaks Community. Who better to give advice than you all, the people that know best! We have heard from people on the autism spectrum, parents, siblings, teachers, therapists, and beyond. Your advice has been broken down into categories, and we will post accordingly!

It gets better! Take one day at a time and remember that there can be a wonderful future for these kids. Love them and support them as much as possible. –Leann

The best advice I can give a newly diagnosed family is to have a plan, be consistent, and take it one day at a time. And always remember, everyday is progress! –Whitney

Although you need to plan for the future, don’t get unnecessarily “worked up” worrying about all the various “what ifs.”  Narrow your worries to immediate concerns. The “what ifs” may never materialize. Trust in yourself that you will never accept the way someone tells you to do something as being the “only way”! I have found the best result in everyday life has come from “thinking outside the box”. You must put yourself in their shoes and feel, smell, see, hear what they do and then you can address the situation. – Kimery

Be ready to deal with what comes in the future. –Joy

We rode the train to our local zoo and when I corrected my son as to which side to get off the train he had a huge tantrum, lots of people staring it was horrible.  I told his teacher about the incident and she said, “Lora, you can’t let what other people think EVER bother you, they have no idea what you are going through so just forget them!”  The next time we went to the Zoo my girlfriends asked if I wanted to “avoid” the train and after a moment I said, “No.  I want to go straight to the train”.  I am not putting him in a bubble.”  He never had a problem with the train since.  Live your life and don’t let other’s stares or commentary get you down.  Their judgment, their problem. –Lora

Be patient, go with the flow, seek the best therapy you can find, and love them through it all. –Sharon

Sometimes you just need treat them like they are normal… they act up discipline them, they do something great give them a kiss and show them all the time they are loved… –Marlene

I am not a parent but I do work with kids with autism. Just remember treat them with respect and treat them as you would any kid. –Debbie

Be your child’s own “job developer”! When it comes to your son/daughter, who knows them better than you do?  Think expansively when considering an workplace area that may best suit their needs, and then network, network, network! Never give up! –Ian

It isn’t a sprint. It’s a marathon.  Think about the big picture. -Robin


Advice for Parents of Newly Diagnosed Children

December 20, 2010 21 comments

We are so thankful for the outpouring of advice that has flooded in for us to share with the Autism Speaks Community. Who better to give advice than you all, the people that know best! We have heard from people on the autism spectrum, parents, siblings, teachers, therapists, and beyond. Your advice has been broken down into categories, and we will post accordingly!

Learn to celebrate every achievement, both large and small. –Liz

My advice is this: Loving persistence. There will be many, many times when you are trying so hard to connect with your child and you feel so frustrated because you believe that you are not getting through to them. Don’t stop. Your efforts in communication are not in vain, it is heard, it is cataloged in their mind, even though there is now outward sign of it. Be persistent, there will be moments that you will get feedback from a conversation that took place quite some time back, that’s how it clicked for us, the realization of “wow! He did hear me!” It’s worth every frustrating effort at those moments. Persistence is the key; you’re not being ignored, just not acknowledged… yet. –Thomas

Trust your instincts and your abilities to work with your child. Trust that you know your own child best and while the experts have a lot of training and can offer your child help, you still know your child best and you are going to be the most important therapist in your child’s life.

I wish I’d know that autism does not have to equal pain and suffering for parents and their children. It took me a few years to understand that autism can also equal joy and fun and laughter. –Kyle

Don’t be sad about what your child CAN’T do, really embrace all of the things he/she CAN DO! –Diana

Your child is not a diagnosis; they are always your child, a person, unique as any other child. –Courtney

As the parent of an autistic child, you don’t need to become an expert on Autism; you just need to become an expert on your child.  Watch them, study them, and learn what works and what doesn’t.  Then help those around them to understand. –Anita

It’s not about you. Put everything else, yourself, your pride, denial, any preconceived ideas, any fears of stigma aside and get to work as quickly as possible. Save your child with the same urgency as you would someone who is drowning. And then? Savor every small victory. As they begin to find themselves and you feel like you can breathe again, follow them wherever it is they take you and enjoy, enjoy, enjoy the journey. -Ken

These children have such a challenging time constructively processing feelings and emotions. My son at a young age started getting up at the end of movies and dancing during the credits, usually with what seemed to me like a large amount of emotion. This sparked an idea. When I would observe him having an emotional overload or getting frenzied I would turn on music and let him dance it out. He is 9 now and loves  to dance it out! We just make room and let him go. It is one of the small things that he has expressed to me that really helps him. –Ellen

1) Grief and self-pity are natural feelings when you first get the diagnosis – allow yourself to experience these emotions and forgive yourself for them. Once you get past it – and you will – focus all your energy on becoming the best advocate and teacher for your child.
2) Your child will be unique in the way he/she is motivated, responds, and takes in information – and you know them best. Share these “tips” with everyone who works with your child and work together to build upon your child’s unique qualities and strengths.  Always keep looking forward.
3) Appreciate your child for who he/she is including their unique personalities and perspectives. Accept them and take the time to fully connect with them.  He/she will bring so much joy to your life – more than you can. –Stacey

Establish a bond of trust between you and your child as soon as possible. -Clara

Remember not to get comfortable w/what you know…things are constantly changing & you must be prepared for many different obstacles to overcome!!! I wish you all the luck! & always try to have patience even when it’s so hard! –Brandye

The diagnosis does not change your child; it simply changes how you need to work with your child. Do not be angry at yourself or doctors, it does your child no good. Forget the past and the what ifs, look ahead and set the bar high for everyone, including your child. Keep hope alive!! -Amanda

Don’t fear the label.  The “diagnosis” will help you get the early intervention services that will change your world later on.  Don’t get hung up on the milestones your child is not meeting and find joy in your child each day. –Melissa

 

 

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