What are My Top 6 Go-To Blogs?

Despite what goes on in my home from day-to-day, I truly never have to feel alone as a parent raising a child with Autism. It’s 2012, and the number of resources, experts, and all-around amazing souls available at the click of my mouse is one of the backbones of my survival. I wish this were the case when we first got a diagnosis and I was overwhelmed, frustrated, scared and confused (and very, very isolated)… but, as we know, everything happens in perfect timing.

These six blogs are my go-to places for experience, strength and hope. I am honored to have connected with everyone here, and can’t wait to do more together in some capacity in 2012. Here are my Top 6:

Louise Sattler
Louise is one of my soul sisters that I can’t wait to meet in person! She is a nationally recognized speaker that infuses her delivery with the kind of humor I adore. She is also a psychologist and owner of Signing Families™.  As soon as I get my act together, rather BALANCED (a non-negotiable goal for me in 2012!), we will collaborate and create greatness! Her support of my voice in the Autism community means more to me than I could ever express.

Gluten Free Gigi
Another soul sister that shares my city… we keep threatening to meet in person and finally share coffee talk! She took being gluten free by the horns and instead of balking about the foods she used to love she started creating masterpieces in the kitchen. Gigi has discovered creating and preparing these new, gluten free healthier versions of the foods she loves isn’t that difficult, is better for her and her family, and much less expensive than buying pre-packaged, gluten free foods and mixes. I have much to learn from her, and boy am I relieved! I’m so tired of buying $9 boxes of “Lemur Puffs” that make my son turn his nose up and say, “It’s not the SAAAAAME!”

Connie Hammer – Parent Coaching for Autism

Connie is an amazing, positive support for parents that especially want to take the struggle out of common hardships when it comes to raising a child with Autism. Bedtime, potty issues, holiday meltdowns – you name it. She celebrates and honors each parent and child as the individual they are, rather than pushing a “cookie cutter” system. I learn something from every single one of her blogs and newsletters.

Gabrielle Kaplan-Mayer – Kitchen Classroom 4 Kids

Ms. Kaplan-Mayer wrote The Kitchen Classroom: 32 Visual GFCF Recipes to Boost Developmental Skills. We loved it so much I wrote a review about it. What I love is that this is not just a cookbook (cue Twilight Zone music… anyone else remember that episode? To Serve Man?). Specific activities are spelled out to help develop fine and gross motor skills, assist with cognitive abilities, speech and language, and address sensory input issues. She has a Recipe of the Week blog that is really fun!

Kid Companions

Creators of Chewelry, this blog offers a wide array of viewpoints and resources when it comes to everything special needs. Their goal is to help special kids be themselves and thrive. Each of their products give us parents peace of mind and support our special children. If your child is like mine and destroys pens, straws, clothing, video game styluses (stylii?) and whatever else is near because of chewing fixations… you need Chewelry!

Stark. Raving. Mad. Mommy.

I have no idea what her real name is, but I’ve been following her over all forms of social media for quite some time. Her sardonic wit and twisted perspectives sometimes get me through the day. It’s a little edgy and in your face, but come on – don’t we all crave that sometimes? She writes about parenting, sensory processing disorder, anxiety, ADHD, allergies, asthma, Asperger Syndrome, and whatever else is cooking at any given moment. Good stuff!

So there it is. There are a lot of other amazing people I currently support and collaborate with, but in order to keep things consistent (I have little specks of Monk in me from time to time) everyone listed here must have a blog that is updated regularly.

What blogs provide great value for you? Let me know by commenting below or on the SOA Facebook page!

When Your Child Wanders…

When Justin was in first grade the principal had a strict policy of no parents walking their children into the classroom. (More about that inane rule and how I combated it in another post…) But for that portion of the year I was entering the school with him and saying goodbye just before he turned the corner to head to class.

One morning I dropped him off, business as usual. At that time, I would typically turn right out of the parking lot and head to work; however that day I realized I forgot my lunch AND needed to get gas in the car. I drove back home and then past the school once again toward the gas station. The bell had rung and school was in session. About six blocks past the school I saw a small child with a backpack casually walking down the street. My heart sank as I realized it was MY child.

When I pulled over and brought him back to school they had no concern whatsoever that he hadn’t made it to class – they simply thought he was out sick that day. I went over and over in my head the scenarios that COULD HAVE played out if I hadn’t forgotten my lunch and needed gas that day. The thought of the myriad possible outcomes were magnified by the realization that I would not have even found out he was missing until I went to pick him up at the end of the work day.

Another time, he was playing with the garden hose outside in the front yard. This was a normal activity for him, and I always peeked out the window frequently to check on him. On this particular day, I blinked and he disappeared. Gone. No shirt, wet pants, and no shoes… vanished.

I immediately grabbed his sister and her best friend and started screaming his name while walking up and down our dead end block. Some neighbors heard my panicked shouts and offered to drive the vicinity and look for him. A thousand thoughts were racing through my head as I searched every nook and cranny of the woods, front and back yard, inside the house several times (maybe he’s just hiding, oh please God let him be hiding), and down several neighboring blocks.

I called the police. Being in the Fire Department I heard my own call go over the scanner and it really hit me. My baby is lost. What have I done? How could this have happened? It was just a few minutes…

I will never forget the feelings that washed over me as I saw my neighbor driving up with Justin in the front seat. Tears welled up as I experienced every possible human emotion simultaneously, hugging him tighter than I ever have. I was able to cancel the police call and take my little angel home to dry off.

He had no explanation for why he left the yard or where he was going. These two experiences absolutely changed my perspective about Autism and wandering.

How do you minimize the risk?

I know how lucky I am that my son is still with me today. That is part of what drives me to train Emergency Responders. However, you must assume that police and fire currently have no knowledge or Autism training and take preventative measures. Here are some practical steps you can take so you don’t have to go through what I did:

1. Safety-proof your home. Home should be a safe haven. In addition to traditional childproofing for small children, you will have to take some extra measures for your child with Autism.

2. Install door alarms. Many children with Autism are prone to wandering. Alarms offer great back up protection. You also may want to consider a personal GPS device for your child.

3. Carry an Autism Emergency ID Card. Emergency ID cards will help people on the scene of an emergency know how to approach and communicate with your child. Include contact information and important behavioral traits of your child.

4. Have your child wear an Emergency ID Tag. In addition to ID cards, tags are another great way to get the attention of emergency responders. If your child cannot tolerate wearing tags around their neck or wrists (if sensory and tactile issues are present), try attaching them to your child’s shoelace. (This of course would not have helped when my child was shirtless and shoeless… but there are so many different kinds of ID tags to choose from now, thank goodness)

5. Arm your child with a form of communication. Whether your child is verbal or non-verbal, communication is a challenge. Create a visual safety book for your child with key questions and answers he or she may be asked in an emergency situation. Practice, practice, practice! I also highly recommend Signing Families for additional communication resources and tools.

6. Get to know your neighbors. It’s a good idea to introduce yourself and your child to your neighbors. You can explain what Autism is, along with some of your child’s behaviors that would strike other people as odd. This way they will call you instead of the police, or help direct your child home if found wandering.

7. Extend the introduction to places you frequent. Introducing your child to a local store owner, diner staff, or other places you regularly visit can go a long way. Instead of a knee-jerk reaction to an odd or inappropriate behavior, a clerk will know your child and be able to intervene safely or inform you of what they may observe. This is also a good idea in vacation spots!

8. Register your child with public safety. Contact your local police precinct, fire department, and hospital and register your child with their database of special needs families.

9. Teach safety procedures to your child. Even with Autism ID cards and tags, your child may still cross the street without looking or enter a dangerous situation. Use real-life situations (like being lost in a store) and repeat drills with your child as often as possible.

10. Use social stories. Teach your child how to handle emergency situations like fire, burglary, blackouts, strangers at the door, when someone is hurt, and calling 911.

Have you had any close calls with your child? What preventative measures do you employ in your home or neighborhood? Let me know by commenting below or posting on my Facebook page – I always welcome your stories and feedback!

Bad Behavior or Shedding Old Skin?

Have you experienced some exciting, big changes in your child with Autism after an intensive therapy program? Did you find that shortly after you noticed great progress you were also witnessing some less than desirable behaviors?

When you start to “retrain” the brain, It’s like peeling layers of an onion and getting your child closer to their true self. Being previously veiled by sensory overload and expending most of their energy simply trying to navigate through day-to-day experiences, your child is most likely now starting to take interest in people rather than objects, become curious, and feel many emotions for the first time. Do they know how to deal with these emotions? Probably not!

You may start to see some challenging (and downright ugly) behaviors and automatically assume your child is regressing or your therapy is ineffective.

Remember that it’s like starting over in many ways. They are experiencing the world around them with new senses. While in survival mode, your child was incapable of learning some of the tools necessary for coping with everyday situations. After substantial progress is made in the way they process sensory input, they are now open to understand and practice these skills for the first time. But it does take patience.

Maybe they just found their voice and are starting to express extreme likes and dislikes, or preferences for people and activities. Maybe they are so curious they are asking incessant questions about every sentence that comes out of your mouth. Perhaps they are touching things more, or having a new kind of tantrum when they don’t get their way. Take a step back and remember this is all new.

Last night my son was in his room and I started hearing unearthly screams from behind the closed door, each swelling louder than the last, with increasing frustration. He was trying to make something work that wasn’t cooperating. My first instinct as a mother was to run in and comfort him and perhaps even correct the problem; I hated hearing him so upset! There was also a part of me that was flinching with each piercing scream, and I admittedly had control the urge to yell even louder to get him to stop.

Either action would have been a true disservice to him. What I needed to do was sit with him and explain what happens when we let ourselves get that frustrated with things. I needed to teach him a manageable protocol for dealing with those feelings, before they get to the point where he’s breaking items because he can’t get it them function correctly.

I made it clear that it was always okay for him to feel whatever he was feeling, but that there were other things he could do to deal with those feelings. We talked about how to handle it when something isn’t working – not continuing to do the same thing repeatedly (only harder), but to stop, take five deep breaths and either ask for help or start asking questions. What am I not seeing? Is there another way to do this? If it can’t be done, can I be okay with that? Can mom help? Should I call for her?

Social stories and visual cues are great tools – it’s a good time to revisit some past attempts that may or may not have been successful for you before. My son and I started employing American Sign Language and certain codes from the police and fire scanner to alert each other that it’s time to use one of our new behaviors. As often as possible, I lead him to try and work out the progression on his own instead of solely giving him exact instructions.

It’s a new and exciting time when this kind of progress is made. It’s also easy to have expectations about coping skills and behaviors you assume should come with that progress. It’s my experience that I can always use a “refresher course” on the very things I’m teaching my son for the first time.

How about you? What are some behaviors you’ve mistaken for regression? What are some ways you worked through them with your child? I’d love to hear your stories, so please comment below or post them on my Facebook page so we can help each other!

My Top 10 Autism Support Tools

As you know, I’ve seen incredible progress in my son during the past five years. I am happy to report that he has never undergone any traditional therapies outside of the home; everything we have done together on this amazing journey was created from my research and personal connections made over Twitter, LinkedIn or Facebook. These connections led to expert interviews and the introduction to some really unique tools that made a huge difference in our lives. Here are my current favorites (in no set order):

Chewelry - Kid Companions is a chewable and wearable fidget that is safe, stylish and effective. It’s the perfect alternative to fidget toys and chewys and worn as “chewelry” is less-than-discreet.

This awesome product keeps my child from destroying costly toys and clothes and actually helps him focus and stay on task!
Calmer By Nature DVDs and CD – With no music or voiceovers – only the raw sounds of nature – the film helps with Stress, Anxiety, Insomnia, Sensory Problems, Alzheimer’s, Dementia, Autism, Sensory Processing Disorders, Cognitive Behavior Therapy, ADHD, and Mental Illnesses. In addition to helping Justin get relaxed at bedtime, it also:

  • Calms him before an outing he may be feeling anxious over
  • Redirects him during times of high stimulation
  • Provides him with short, 10-minute “cool down” times when he needs a sensory break
  • Gives him ideas for drawing and video creation projects
  • Starts conversations about the wildlife we see on the film

Yoga Ball - I bought my yoga ball years ago as part of my never-ending fitness research and it has been such a versatile staple in my home! From traditional use in my fitness routines to my daughter using it as a “dinosaur egg”, my son rolling around on it, and its employment as bedtime proprioceptive tool… it was the best $25 I ever spent!

Many times our evening ritual consists of “hot dog”: rolling him up in a blanket and using the yoga ball for deep compression on his back. We use different patterns as “toppings”; like circles are called onions, vertical rolling is called ketchup, etc. This is an instant calming tool that never disappoints.

Sandbells - These are our favorite fitness accessories when we work outside – we do overhead carries, throws, passes, and much more! They are safer than dumbbells and offer a sensory experience to boot!

DSi XL – Many parents would argue that video game systems are not a support tool. Here’s why I encourage my son’s use of his DSi XL: Flipnotes. He creates videos using an application that mimics old-fashioned, frame-by-frame animation. Sometimes they are 800+ pages long. He then adds music and voices to these videos and posts them in his Flipnote community, where his fellow creators rate and share them. It’s really neat to see the patience and detail that goes into the creation of these animations!

Digestive Enzymes/Probiotics – These are not a replacement for a diet free of gluten and casein (and other common culprits for food sensitivities like soy and corn!), however digestive support is essential in children on the Autism spectrum. There is a direct link between digestion and behavior. To be completely transparent, we are not on a 100% GFCF diet but we do our best! These enzymes and probiotics help step in with support where we fall short with diet alone.

EnListen® - With all the alternative, natural and creative strategies I try at home to help improve my sons symptoms and behavior deficits, the one thing I cannot do for him is change the way he processes sound! Sound Training has been such a gift and blessing in our house. While it is not a magic bullet by any means, the gains I have seen on a physical, cognitive, and adaptive level have been unmatched.

Social Media - As parents we often throw our entire being into helping those we love,  especially our children. The one thing we forget is that we need support, too! I have met some incredible people on unique but similar journeys over social media that I never would have encountered otherwise. I personally want to thank every single person that has connected with me on the social web. Your presence in my life – regardless of capacity or length of time – has made my universe a better place.

Signing Families - Louise is one of my favorite ladies on the Internet! One day we will meet in person and I bet it will be like we’ve known each other for years :) She has been teaching American Sign Language for more than 20 years to families with hearing and non-hearing children, college students, staff at public and private school systems and businesses. She also shares one of my other passions and provides materials to Emergency Responders.

Sign language has opened myriad doors for my son in regard to communication. I believe American Sign Language can give a voice to all who struggle with language for many reasons.

EFT - A little more “alternative” than some other techniques, EFT can help parents overcome limiting beliefs, fears, and frustrations, as well as deal with any grief or overwhelm that accompanies have a special needs child. I have also worked with my son directly and helped him break through a huge block he had with self esteem. It may or may not be for you, but you’ve got nothing to lose if you want to check it out!

Many times we also do EFT while listening to Jeff Gold’s Escapes… another great calming and relaxing CD of original music.

What are your favorite tools? Do you use them at home or outside of the house?