In September, I posted some comments from an Autism Awareness thread on Linkedin. Parents of children on the spectrum share a piece of advice they would give to parents of newly diagnosed children. The thread is still popping up so I thought I would check back in with it and transfer a few more posts that caught my attention, beginning with:

"Brenda Considine • I was given the best advice EVER by my son's pediatrician: "Keep your child's self-esteem in tact, and he will be fine." It has guided nearly every decision we have made for him."

This advice reminded me of the shirt and hat we encouraged Curtis to get at the Boston Museum of Science this past weekend (pictured). Keeping Curt's self-esteem in tact is always a top priority for his caregivers and is vital to his success so far. We believe he can do anything and it gets him believing it too, even when he doubts it. Curtis went from being intimidated by his Razr Scooter on Christmas to taking on large hills over a two week period because we left no doubt in his mind that he could do it if he was willing to try. Now he's got a good riding foundation for when we pick bike riding lessons up again next spring.

More posts that caught my eye

Alan Fox You have to do as much as you can for your child as soon as you can. Waiting and hoping will not help. All the research says do not wait, intervene early, even without a diagnosis. Your child is unique and so is his or her autism. Anyone (author, doctor, guru, self-advocate, or me) who tells you he or she can help your child without knowing your child first cannot help your child. What works well for one will not necessarily work well for another.

Meredith Zolty Keep a notebook with all your meeting notes, doctor/therapist contact info, school details etc. Bring it with you to meetings and appointments to help coordinate your child's IEP.

Debra Severson Forgive those in the schools. They don't know that they dont know- but be patient and offer them resources to learn and ask (insist, really) districts to provide staff the training they need. Don't be afraid to disagree. Just have sound reasons and look for an alternative intervention that makes sense to you and takes in account your child's motivations. Push when you have to push.

Mary Kay Forster • Knowledge is power. You MUST be your child's advocate. Learn all you can about all kinds of therapies, help groups, treatments, etc. You have to determine what to discard as not appropriate and go forward and fight if necessary for the things your child needs. Grow a group of like-minded teachers, administrators, doctors, friends and family to help you on your way.

Brenda Difonzo The road ahead will be a long and challenging one. I would advise you not to compare your child to other "normal" children his/her age - they will achieve what they can when they're ready. Also remember to take care of yourself, your spouse and any other children you may have.


Greg, Dad

As I've stated before, I do a lot of my autism research based on what comes up on Linkedin. It's just that much easier when things show up in your inbox. There is a string that has gone around for a month or so where experienced parents of kids on the autism spectrum offer advice to parents of newly diagnosed children and information on autism. Below are some highlights from the string.


* Karen Sudom Breathe. Autism lasts a lifetime. You don't need to read everything and try everything to be a good parent. Your child is the same today as he/she was before diagnosis. I think approaching parenting as a journey takes away the panic that I've missed my chance if it isn't all perfect today.

*Debi Taylor Start by learning about how your child sees the world so you can learn that most issues are not chosen behaviors, rather sensory or avoidance survival tactics from overwhelm. Once you start seeing things from their eyes the best you can, you can start making decisions that best support your child. 

*Susan Gurry, Ed.D., BCBA-D; Play therapist • Take your time, do your research, and decide what is best for you and your family. Some kids do recover, but the 'how' and 'why' are not proven. There is so much heterogeneity in the autism spectrum that anyone who tells you that their method works on everyone is not telling the truth. What's clear from the research is that intensive early intervention is extremely valuable....but the evidence about whether it has to be all ABA or any other intensive (40 hours/week) intervention is not clear.
And everyone is going to want to sell you something: pills, vitamins, toys, CD's, reading programs, squeeze machines, flashcards....be careful and thoughtful about what you buy. 

I think the most productive use of your time is to stay engaged with the child...play with what he likes, have him eat one bite of non-preferred food before his preferred food, stay in his 'face'. 

*Renee' Barbier-Brown Autism isn't mental illness... each child is completely in tact. I read quite a bit in the early days... I read the most recommended books... Tony Atwood etc... I got involved with Easter Seals right away... they really helped because they were able to give us additional test and help us get along as a whole family. They helped us all grow in a great way. I slowly learned how to parent autism much better.

Jaye Reckers • Read as much as you can without going on total overload and remember that at the end of the day, no one will ever know your child better than you. Don't be bullied into something you don't believe in and ask for help when you need it. 

Carla Cummings • You never know what the future will hold. Your child will develop in their own, idiosyncratic way so no one can really predict how they will be functioning when thay are adults. Also, PLAY WITH YOUR CHILD! Board games are wonderful teachers. Join them in their interests and they may eventually join you in your world. And last... NORMAL IS OVERRATED -- noone ever changed the world by being normal and average!

Cinder McDonald OK, new parents, your kid is never going to be "like you". The things you get to brag about your kid doing will be markedly different from the things other parents get to brag about their kids doing. Your kid will have a lot of ups and downs, with more downs than ups. But your kid is amazing. Your kid will show you a world that you never knew existed. You will see wonder in the most ordinary things. You will never take a hug for granted. If you work very, very hard and battle with systems that act like they hate you, your child will grow into an adult who will surprise you with all they are able to do.

Jennifer Lee  Being a newly diagnosed parent - I have to say, remember there is always hope. I believe that if we could not handle this it would not have been put in front of us. The best advice I have gotten from anyone is "I am the only one who is going to advocate for my child and always follow my gut." It's not the end of the world, they are still your wonderful child, you can still have expectations and dreams for them. I plan to do whatever it takes to make sure my son has the best life possible, the same thought I had before we knew about the Autism.



Greg, Dad

Curtis is thoroughly enjoying his summer. He can also tell you how many days are left until school starts in an instant. 35 days left was the answer when I asked him today. He doesn't seem especially nervous yet and he keeps track of all kinds of things concurrently so I give no special significance to him keeping the countdown. Nevertheless, there will be plenty of reasons for his anxiety to grow as the school year nears and I expect it will. Though ultimately I expect he will be more excited than nervous. But nervous. His is missing many of the crutches, like his "BFF", who elevated his excitement about going to school.

I came across this article on LinkedIn today. It gives good advice for any parents sending kids back to school and also touches on areas I expect to cause the most anxiety for Curt. A new teacher is going to be a big adjustment. There's always that feeling out/breaking in period with Curtis and it can last a long time even with someone whom he has near daily exposure. He will have to get used to a new classroom, classmates, new cliques, a new seat, a new morning routine in the class, and likely new expectations. All things that Curtis could battle with but undoubtedly conquer. From our end, we will extenuate the positives. He will love shopping for school supplies with his mom shortly. When the school year starts, dad will still walk him to school and Caron will still be front loading his day to make him feel him feel as safe as possible. And mom will still be there to pick him up at 3 when the school day ends. Accentuating the familiar aspects of going to school serve as an armor for Curtis to take on the "unexpected" aspects of any school day and we try to keep as many of these familiar things going as we can. We will have many conversations with him about any 2nd grade anxieties I'm sure but first, there is still plenty of summer.

Greg, Dad