You have a spine! Now use it!

This story starts with a keychain. A spinal column keychain.


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About 6 years ago I was just beginning my journey of understanding autism. I was trying desperately to connect with support groups in order to get some help with my boys. There were only a few groups in my area at the time, and they all seemed to be falling apart to some degree or another.

I managed to find a group that I really liked, and although it was slipping into oblivion, the leader took some time to connect with me. She saw my earnestness. She became my mentor. She became my friend. She helped me to become the mother, advocate, and leader that I am today.

One day she showed me her spinal column keychain. She told me that every parent of a child with autism or other special needs needed to have one. I gave her a cursory nod, but truly didn’t understand the importance of what she was telling me.

I get it now. I completely get it.

At the beginning of my family’s journey, I was going through the motions because I didn’t really know what else to do. I spent many nights up at all hours, scouring the vast Google universe, trying to glean whatever knowledge I could about autism, schooling, therapies and the like.

The word “advocacy” was an enigma. I knew it at a visceral level, but I didn’t truly understand what it meant.

I continued to learn. I began to question the status quo. I began to demand more. My kids deserved more. I became a more powerful and informed mother.

I realized I had a spine and I needed to use it. I needed to no longer be afraid, but be strong and stand for what I believed in for my kids. I needed to consider myself the expert. I was THE expert and I had to trust myself in that role, even more than putting my trust in so-called experts with lots of letters behind their name. I AM THE EXPERT.

Things will never be the same as they used to be, because I became an advocate.

As you know, I run a nonprofit organization and a support group. Advocacy is part of my job. The words, “find your spine and use it” are now the foundation of all advocacy training I do with families. It is that important. It is the first step to becoming an advocate for your child.

Advocacy is a bit of a game. A dance, really.

Parents need to feel empowered and claim their expertise regarding their own children. If they can’t do that, or aren’t willing to try, then they won’t get very far. And, they certainly won’t get their children what they need. You will need to learn how to hold other experts accountable for their particular responsibilities in your child’s life. In doing so, your child will be better served.

Advocacy doesn’t automatically mean a battle. But, it means you need to think like a warrior. You need to be proactive, and you need to be willing to stand for what you believe in. You need to find your inner mama bear and arm yourself with information and intention.

Preparation will put you in a better position to get what you need for your child. The proof is in the pudding, and in this case, documentation is king. Whoever has the best data wins. Take notes about everything because you never know when you will need a particular tidbit of information to prove a point or make a case.

This not only applies to educational advocacy, it applies to medical advocacy and more. When you know what you need and you aren’t afraid to ask for it, and you have documentation to prove your point of view, then you will have infinitely more success.

Parents who always defer to the “authority” or the “expert” will generally be treated as a doormat. It might not feel that way at first because everyone is being so helpful to you and your child. But, this helpful attitude can sometimes come from a place of them being allowed to do whatever they want and not having to be questioned about anything in the process. The cooperative parent is always the easiest for them to deal with and they’ll have smiles on their faces when they see you coming. But, over time, your rose-colored glasses will become less rosy as your child gets older. You will begin to see the holes and issues as they really are.

I feel sorry for the children of parents who don’t want to deal with anything because it’s too overwhelming, and they would rather completely bury their head in the sand. Those parents will not get very far until they are willing to see the truth for what it is. And, sometimes the truth is ugly. Avoiding the truth isn’t helping the kids that really need the help. I worry about the long-term future of children in these types of situations.  

I have seen over and over again that experts respect an informed parent. They will treat you differently when you have demonstrated your expertise and that you are willing to ask questions and hold them accountable. They will recognize that they can’t get away with steamrolling you, pulling the wool over your eyes, or placating you as a distraction. They will treat you as an equal and you will often get much further toward the desired outcome for your child.

It's always best to use a personality of sugar and spice and everything nice, but you have to also be willing to let them hear the mama bear growl in all the right places so that they know you mean business. Only unleash the mama bear when necessary. If you overdo it, then you are shooting yourself in the foot. A constant negative personality or an attitude that doesn’t consider compromise will get you nowhere fast, and you will find the experts will fight you harder and longer than before. And, that is something that none of us want.  

There are exceptions to every rule, and I’ve seen my fair share of them. But, as a general rule, parents who have found their spine and are willing to use it, will get much further to help their children than those who are wet noodles.

I encourage you to think about your spine and how it relates to being a better advocate for your child. It certainly isn’t easy, but please find your spine and stand tall with me…for all of our kids.     

Inclusion vs. Segregation

This topic has been coming up a lot lately for me. It’s relevant in schools, in families, in circles of friends, and just in living life with a child that has special needs in a world that doesn’t always understand or tolerate them. It’s the argument between how to keep our kids in a safe and appropriate environment, and how to balance that with living in the real world.

Those of you that are raising a child with autism are well aware of the challenges that come with taking your child out into public, particularly when they are younger and less able to control their actions. This can be made worse when they do not have words for communication. Some of our kids that are more significantly affected will show their differences more obviously. You might take a look at them and just know that something is going on. Others that are less impacted by their diagnosis have more “invisible” symptoms. These less visible traits can be the bothersome things that get a child labeled as a “brat” or the mother as a “bad parent” when they are out in the real world.

In our schools, parents can fight bitterly for keeping their child in a self-contained setting because it is the most appropriate for their needs with the additional supports they might access in those classrooms. For others, the fight is to move the child out of that environment because it is stifling their growth and they need exposure to typical peers in a mainstream setting. Each can be equally appropriate, depending on the child.

A few weeks ago, a good friend of mine told me about a trip she planned for her kids to go out for dine-in fast food, with the assistance of their ABA therapist. This took some intent and planning and did not happen overnight. They made sure to go at a time that was off peak hours so they would have a better chance to escape without a meltdown. The trip out to the restaurant was no easy feat, particularly since she has 3 young kids diagnosed on the spectrum. She was dreading it, but knew that it would provide much needed practice for her kids, and it would be helpful to have the support of the professional that would accompany her that day.  

As you might expect, the experience had a few hiccups. And, someone at the restaurant could not resist making an intolerant comment when her youngest son started acting up. As a parent, when those things happen, you try that much harder to try to make your kid fit the mold of what is expected in public, and you become keenly aware of how different they are in that moment. It can be excruciating to try to overcompensate and do anything to make things better when you are the target of negative attention like that. She maintained her calm, but this person could not resist continuing to make disparaging remarks. And, like probably anyone in her shoes would do in the same situation, after a certain amount of time passed and the agitation increased, she let him have it. Loudly.     

I have had plenty of moments when Grumpy Badger was wildly melting down in public while we were waiting to check out at the grocery store, or when he would start screaming in the library, etc. I got my fair share of judgmental and searing stares, as I avoided eye contact with others and tried to rush my boys out of the situation before it got even worse.

I tend to be fairly non-confrontational, but those experiences taught me something. As a parent, you have to find your spine and use it when needed! Sometimes you have to be willing to provide an impromptu autism awareness lesson for those around you. If you can do it without yelling or breaking down into sobbing, all the better.   

Things have gotten a lot easier for us as we venture out beyond the doors of our home. We are no longer in crisis all the time. My boys have grown in their skills and abilities, and they are gaining maturity in certain areas. We have our moments when things are still difficult, but it’s definitely not as hard as it once was. For that, I’m thankful. But, I also vividly remember what it was like. And, I know so many people that are continuing to go through these situations daily and may not ever know what it’s like to have a reprieve.

This topic came up again when I was recently interviewed by a college student about the challenges of parenting a child with a special need. She was specifically looking to learn about the perceived societal stigmas and how parents cope with those pressures. I realized that the way I deal with the stigmas and expectations is very different than when I first became a parent.

To be blunt, I don’t give much of a crap anymore about what people think about me, my kids, or my parenting. This is autism, and it ain’t always pretty.    

One of the things I have been working on through my nonprofit is the normalization of differences and creating tolerance for special needs in all settings. I have given many presentations touching on this topic. It’s needed everywhere. Through educating and bringing awareness to a group of people interacting with the public (which includes families that have children with special needs, like mine), some of those people become the catalyst for change. They can take the information to heart and forward on their new perspective to others. I know it works. People have told me how they’ve shared the message, and it’s gone far beyond them after they heard me talk one day. The word can spread when people are willing to listen. The impact can be far-reaching.    

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I just read a very interesting article posted on March 16, 2013 from Amy S.F. Lutz in Slate Magazine on this very thing. Please take a moment to read it here. It’s well worth a few minutes of your time! She provides a lot of context and makes you really think about this idea of special needs segregation vs. inclusion.

For me, it is a very loaded topic because it touches on so many things.

I can’t help but draw a parallel between the intolerances shown toward people of different races and the intolerances shown toward people with both visible and invisible disabilities. It’s like we have a new “ism” now, but there is no defined name for it other than discrimination and intolerance.

A new form of segregation can be found in a self-contained classroom, whether that’s good or bad.

Self-inflicted segregation happens when parents will bend over backwards to conduct errands at off-peak times, trying to avoid large audiences and be as inconspicuous as possible. I have done this more times than I can count. It’s usually much safer at home, and this is why so many autism families feel so isolated.

We know that the world isn’t ready to deal with the influx of children and adults with autism and other special needs. As parents, we are trying to prepare our kids for the world and also prepare the world for our kids.

Have you thought about how to educate others and create awareness without it feeling confrontational and creating further discord? What works for you? What hasn’t worked?

If you haven’t yet thought about it, maybe now is the time.             

 

Flashback Friday: Teachers need to know!

It’s August! Have you thought about your kids going back to school yet? Have you starting shopping for school supplies?

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I had the opportunity to speak about autism with some college students studying education. We got into a nice discussion about how parents communicate with teachers. What was reaffirmed to me that evening is the absolute importance of parents communicating with teachers. It’s critical.

You are the expert!

Let me repeat that. YOU. are. the. EXPERT.

I mean it!

Your child may be surrounded by therapeutic and education experts in the school environment, but you are the expert when it comes to your child.

Use your voice. What you share about your child can better equip the teaching team to be successful in working with your child.

One of the best ways to start off the school year is to write a letter of introduction about your child. I do this every single year for both of my boys. It’s an excellent practice to get into, and I guarantee the teachers appreciate it.

Take some time and think about your child – their strengths, triggers, calming strategies, etc., and then write it up in an email or a letter to their teacher, or drop it off in person at the school. By having this information ahead of when the students arrive, the teacher will have time to review the information as they plan their classroom for the fall. 

Check out the post I wrote about this last year and get started on your child's letter of introduction. It's definitely worth the time to put it all together!

Defending Champion!

Last week I got a call from the Principal. Of course, my immediate response was a sinking feeling in my gut, as I prepared myself for whatever bad news was about to come my way. The first words out of the Principal’s mouth were to reassure me that nothing was wrong. Thank God for that!

She proceeds to tell me that she has Monkey in the office with her and that he wants to talk with me. He gets on the line and says, “Guess what, Mommy?”

“What?”

“I just won the spelling bee!”

“You did? That’s awesome, kid! Great job! I’m so proud of you!”

“Uh huh.”

There was an awkward silence while he tried to think of something else to say to me, and he clearly was not ready to relinquish the phone back to the Principal. So, I started asking him some questions about his experience at the spelling bee and he was able to talk with me a little bit about it.

Monkey does not have a ton of experience on the telephone, so he was not completely certain of how to talk with me beyond sharing his big news. He had some trouble figuring out what to talk about and when he should give back the phone to the Principal. We muddled through the conversation and I ended up instructing him to hang up the phone, and that I would talk with him more about the spelling bee when he got home from school. In our mutual confusion, I ended up hanging up the phone right as the Principal got back on the line. Oops!

He had been so excited about the prospect of the spelling bee that he had been chattering for a few days about it. He told me that the winners, starting in 3^rd grade and beyond, get their name engraved on the plaque in the Principal’s office. He had made up his mind that he really wanted his name up on the wall forevermore.  

The night before the spelling bee, he was up late. I think it was the first time I’d really ever seen him too excited to sleep. He’s had nights where “weird thoughts” kept him from sleeping, but this was something new. He ended up asking for a “nighttime vitamin” (melatonin) to help make his brain slow down so he could sleep, and he fell asleep 30 minutes later.

The following morning, instead of his usual wake-up time curled up in a blanket on the couch, he was dressed and ready to go even before I was awake. He told me that he wanted to surprise me and he was clearly excited for the spelling bee. I thought that was awesome. During breakfast I gave him some words of encouragement, reminding him to slow his thoughts down and to think about his answer before he spoke.

Needless to say, he went to school that day and came home a winner. I understand from one of the teachers that he conducted himself very appropriately during the spelling bee, which of course made me very happy to hear. Monkey is an amazing speller and I couldn’t be more proud of him! He is now a 2-year defending champion and he’s already talking about how he can’t wait to get his name on the wall plaque again next year. I hope he does!

       

Silly Creatures Giveaway

How was your Memorial Day weekend? I hope it was great! We did a lot of stuff around my house, but somehow we ended up with a bigger mess than we started with. Somehow I need to find some time to fix that problem!

I am happy to announce that today we have a giveaway! A while ago I was contact by Flor, the owner and creator of Silly Creatures. After reading her story and visiting her website, I was excited to have the opportunity to share one of her Silly Creatures with you.

I love the fact that her products are all made with eco-friendly and natural materials, like organic cotton. In addition, Flor is working toward receiving a B Corporation certification. I had no idea what this was until I learned more about it here. Certified B Corporations use “the power of business to solve social and environmental problems.” That’s pretty cool!

Even before I decided to run a nonprofit, I always felt more compelled to do business with companies who were generous. I truly appreciate that Silly Creatures gives back to the community and is making a difference for meaningful organizations and programs.

The company and concept of Silly Creatures started as a request from Flor’s son, Simon. He drew pictures of what he wanted and even gave the creatures names. Flor bought the supplies and started to make her first Silly Creature. When Simon wanted to play with the stuffing, Flor decided to create a digestive tract. A child could then pretend to feed the toy and have the “food” come out the other side.  

The K-BEU family of Silly Creatures

The Silly Creatures idea was born, and several different types are now available. Polished stones serve as the food that kids can give to the creatures, and then they can push it through the digestive tract. The creatures provide play with several functions, including learning about anatomy and also helping to develop fine motor skills.

Flor was kind enough to send me a Silly Creature to give away to you! Isn’t that great? If you have a child that you think would enjoy this toy, please take a moment and enter to win! The giveaway will be open through Saturday and then I’ll announce the winner next Monday.

Don’t forget to visit Silly Creatures on Facebook and Twitter! Good luck!  



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I think, therefore my head hurts.

There are a few posts I wanted to write in the past couple of weeks, but things have just not materialized. My mind is swimming right now with everything going on in my life.

I feel like I've been notably absent from the blog recently and I probably needed to at least check in and let you guys know I'm still here. I'm alive and kicking, but I'm always on the go! I barely have time to eat, much less write a witty, awesome post for you to read! Because, as you know, ALL of my posts are witty and awesome! (Did I just hear a retching sound somewhere?)

I have been so busy working on the nonprofit - having meetings, advocating, speaking, writing, event planning, thinking, reading, strategizing, organizing, creating and dreaming - that I've barely been home the past two weeks. Make that this month. Well, if I'm honest with myself, I've been at a dead run since the end of February. 

Last week I realized that in only a few more weeks, school is out for the summer. Talk about having a heart attack right then and there! How and when did this happen? I didn't give my permission for time to move this quickly! There is so much work to be done before the end of the year!

I just have to say that even though my schedule has been out of control and insane, I'm happy. I am 1,000% passionate about the work I'm doing, even though I'm not yet funded. I could not ask for a better or more supportive husband, and I have the world's greatest friend in Miss C. Without their support, the nonprofit work would be impossible.

And you know what? People are showing up. To participate. To volunteer. There are some really great people choosing to get involved with what I'm trying to do and help me create something worthwhile and valuable to the special needs community. That right there is astounding and humbling.

When the kids are out on summer break in only a few short weeks, my schedule will clear for the first time in months. Even though I dread summer break and what that transition will mean for my boys, I think there will also be a small sense of relief as well. The thought of slowing down long enough to catch my breath is kind of thrilling! Work will not cease, but the intensity will lessen. And, this is going to sound crazy, but I'm looking forward to doing some plain old filing! I also hope to finish organizing my nonprofit's office and finally getting the last of the stuff out of boxes and into their proper places. I think that will be a good summer project.

Something deep inside me tells me that I'm doing what I need to be doing, and it's happening at the right time. I am convinced that this is going to all work out somehow. Even though there are hurdles and obstacles, things will all fall into place. Personally I have a lot of fears and worries, but God is giving me a sense of peace. Doors have been opening and I am just walking through them. In fact, I can't wait for the next doors to open so that I can walk through them, too. Bring on the doors!

That's where I'm at right now. It's a good place. A bit nuts, but good.

For the final push into summer over these next few weeks, it will be hit or miss around here. I will try to post once per week (and I'll be pretty darn proud of myself if I do more than that!). I hope to see you back here early next week when I will feature a new giveaway. Be watching for that!



Autism epidemic, continued

Last week I told you how I felt about the new autism numbers per the CDC. In case you missed it, the prevalence of autism is now 1 in 88. My post prompted a rather lengthy comment from Heidi that I felt needed further discussion. I reached out to my blogger friend, Cari from Bubble Gum on My Shoe (an awesome gal who has done guest posts for me before – here and here), to help me field the questions that Heidi posed. Without skipping a beat, she got right to it and added some great value to the discussion. Unfortunately, my mind doesn’t work that fast and I needed a bit more time. I want to continue on what Heidi and Cari started, and weigh in with my own thoughts, too.

Well, what I didn’t realize is how much I would have to say about this! My post got to be out of control and way too long for any sane person to read. In an effort to save you from reading for over an hour, I broke up some of it into a separate post on Monday to coincide with World Autism Awareness Day.

So, now I’ll bring you back to the original comment that spurred this on and begin the discussion. Get ready....here we go!

An observation about advocacy

Through the work I’ve been doing at my nonprofit, I have been very involved in educational advocacy. I can honestly say that I feel like I’ve been swimming in the advocacy pool and my fingers are getting pruney from it!

Any parent who has ever attended an IEP meeting knows that things can sometimes get very intense, especially when you do not agree with the school district’s recommendations for your child. Often those situations can be difficult to navigate and are full of emotion as you try to do the best you can.

I can tell you that my personal experience with getting my boys the education they need and deserve has been more positive than most people I know. I realize how fortunate I am to be able to say that. It hasn’t been perfect, but it could be a lot worse!  

As an advocate, I have sat through a variety of meetings in several school districts. One thing keeps coming to mind:

In an IEP meeting, why are informed and knowledgeable parents treated in an adversarial manner?

Now, this doesn’t happen all the time. In fact, I’ve been witness to some wonderful moments where things work well because the district recognizes the value of parental input.

Unfortunately, this is usually not the norm. To me, it would seem logical to expect that parents who are active participants in their child’s educational process would be treated as collaborative partners in the shaping of the IEP. Parents are often a very rich source of information about their child and much can be accomplished with a positive approach.

As a parent, you are an expert. It may not feel like it, but you are! If you have gone through the process of diagnosis, read every book you can get your hands on about the diagnosis, and have participated in various forms of private therapy in order to help your child, you are an EXPERT. If you feel like you don’t know anything because your kid is melting down again and you don’t know how to handle it today because your usual tricks aren’t working, you are still an EXPERT on your child.

Parents can be overwhelmed by the IEP process because it’s full of legal mumbo jumbo, there is vocabulary that is difficult to understand, and there are a lot of people in the room who have letters behind their name. It’s intimidating, for sure. God forbid you hear horror stories from your friends who have had awful IEP experiences! It’s a safe bet that you will feel some level of fear or dread as you participate in that setting.

When parents are able to claim a sense of expertise and power, they can ask insightful questions and help to effectively strategize with the rest of the team, which leads to positive changes for their child’s IEP. This is, of course, when things go well. Many times they do not go well. And then, that smart, powerful parent turns into an adversary in the eyes of the district.

I hate to see this happen! In my experience, and that of some of my colleagues, this can happen more often than not. The opportunity for improving a child’s IEP (and their school experience) is wasted. And it’s sad.

I don’t really have a well-developed idea to go along with this observation. This has been mulling around in my brain for a very long time now and I figured it was time to at least start the conversation. I haven’t prepared some glorious argument about what this means to me, or a list of tips and tricks to combat this kind of situation. I just wanted to share the idea of it. It’s food for thought. It’s not a complete thought. It’s a work in progress.

Educational advocacy and IEP’s are such hot button issues, that I’d be interested in your thoughts. Do you agree that sometimes the parent can be seen as the adversary? How do you respond to that? What things have helped you get what you needed for your child’s education? Feel free to share in the comments below.

Flashback Friday: Letter of introduction

Parents are always looking for better ways to communicate with their child's teacher. One way I do this is to prepare a letter of introduction for my children. This became extremely relevant this week when Prince Charming started at a new school. As part of his transition process, I provided a letter to his new teacher.

This topic has also come up several times this week when I was talking with other parents. It seems that I'm not the only one thinking about teacher communication. So, I thought I would recycle my introduction letter post for you. I hope you find it helpful.

Click here to read it.

Moving on up!

If you were on Facebook yesterday, you may have already seen my big news. Yesterday was a very significant day!

For the first time ever, both of my boys attend the same school! Prince Charming has been in a self-contained program in another school that was more suited to his needs and offered more support. We've been working toward getting him into a regular classroom for quite some time. After his big regression last spring, it seemed even further away. Now the boys go to the same school, on the same bus, with the same schedule! It's wonderful!

I am proud to say that Prince Charming has done better than any of us expected this year and made the transition out of a self-contained classroom much sooner than we thought possible. Granted, we pushed him harder than maybe we should have, and it hasn't been without problems. But, he's now in our neighborhood school with Monkey for the first time. And, his teacher gave a glowing report of his first day. I hope the honeymoon period lasts and lasts. He has most definitely earned it!

Ready for school....together for the first time!

The most exciting part...riding the bus together!

Sorry, doctor. You're wrong.

I was doing some shopping at my local vitamin and supplement store when a lady looking at children’s vitamins noticed me quickly placing some products in my basket. She watched me for a minute and then asked if I could recommend some vitamins for her son. I looked over and saw a young boy sprawled out flat on his belly quietly playing with a car a couple feet away from his mom. I asked the mom some specific questions to try to learn about her situation so that maybe I could provide some guidance.

I learned that her 4-year old son was not eating. The mom was grasping at straws to get some sort of nutrition into his body. When he chose to eat, his diet was extremely limited – full of wheat and dairy. Sound familiar? He was also not communicating verbally with much success. The alarm bells were very loud in my head as she shared more with me. While she was talking, I glanced at him occasionally and watched him play with his car on the floor. He was passively listening, only trying to speak or use crude sign language when prompted by his mom. He wouldn’t communicate directly with me, instead using his mom as a translator for his very special hybridized language of Spanish, sign, and English.  

I began to share a bit about my boys and their journey since we learned about autism and their food allergies. The lights seemed to be turning on in her head. She knew there was something going on with her son. It was very obvious to me also, and I had just met him.

This mom had done everything right. She was seeking high-quality supplements to try to help her son avoid vitamin deficiencies from his lack of food intake. She told me his hearing was fine, but he wasn’t picking up speech as he should at the age of 4. Even his own father has great difficulty understanding him.

She told me that she had taken her son to the doctor to discuss her concerns about his lack of speech development and his daily refusals to eat. The doctor told her to not worry about the food thing and that he would talk eventually. His advice was to just give it some more time.  

OMFG! In my head I am going freaking nuts when I hear her say those words. I’m concocting an imaginary plan to go visit this excuse for a doctor and scream obscenities at him.

Give him some more time? He’s four! Obviously something is wrong. Hellloooo! So, the mom should just wait until he enters kindergarten and the teacher has a heart attack when she realizes how delayed this child is? That would be a huge disservice to the child, his family, and his future teachers.

I felt awful for this mom. I was her not that long ago. I had blind faith in our doctors. I heard those same words when I brought my son's delays to his attention. Oh, just give him some time. Boys are slower to develop speech. It will be okay. 



Don't forget...doctors are always right! Especially about cigarettes!

NO! No, it’s not okay! He doesn’t need more time! He needs help! NOW! The wait and see attitude infuriates me to no end. And, now that I have the clarity of 20/20 hindsight, I can almost taste my fury when I hear those same words again.    

Unfortunately, I listened to our doctor longer than I should have and I lost precious time that I will never get back. I finally figured out that I was getting nowhere fast and that I needed to take control of our situation. And I did. And my boys are better for it. I shudder to think where we would be if I had continued to wait per the doctor’s recommendation. It makes me cringe just thinking about it.

I spoke with the mom about food allergies. I also told her about free developmental assessments available in her school district. She was floored that such a service exists. I didn’t specifically tell her to pursue an autism diagnosis for her son, but I mentioned how my boys did many similar things at the same age. And, I used the word autism a lot. I feel very confident that this mom will call the school district to get an assessment for her son. I’m about 99.9% sure that they will find areas of delay and that he will qualify for developmental preschool. I have no doubt. A proper diagnosis will hopefully come in time, but the first priority is getting this kid assessed and qualified for a specialized education.

I gave her my card and asked her to keep in touch with me. I am very interested to see the outcome for this precious boy. I can only hope and pray that he gets the help he needs and deserves. Lord knows his doctor didn’t help him one bit with his ignorant remark. Jerk. Thank God this mom followed her instinct. 

Despite my hurry that day, I am so glad that I chose to take those few minutes to talk with that mom. I can only hope that a seed was planted and that positive changes are on the horizon for her son.  

Moms, you have a wonderful gift of intuition. You know your child. Don’t accept the garbage you are fed if there is any shred of doubt in your heart. Do what you do best and seek the answers for your child. You, like all of us mother warriors, are smarter than your doctor when it comes to your child. Trust yourself.

I’m curious to know how many of you had a similar experience with your child’s doctor. Did they give you the crappy line about waiting, too?

Introducing your child to their new teacher

It’s the most wonderful time of the year! It’s school time again! While I was prepping things last night for my boys’ first day of school, I was got to thinking about the process we go through each year to prepare the teachers for their arrival.

After my boys were diagnosed, I came up with the idea to write a letter introducing each of my boys to their teacher. I found that there was a lot I wanted to share with the teachers. But, downloading a whole bunch of information to them over the phone or in-person wasn’t necessarily the best approach because I couldn’t expect them to remember everything.  So, by placing the details in a letter, the teacher would have an individualized resource to refer to whenever needed. It was almost like giving them an answer key about my boys. Did you like that? Answer key. Teacher. Pretty slick, right? ;-) Moving on…

I’ve been writing introduction letters since 2008, and they average anywhere from 2-5 pages each. Each year I receive gratitude and many positive comments about the letters, since the teachers feel like they know and understand my kids before school even begins. Usually I write the letters during the summer and then email them or drop them off at the school several weeks in advance of the start of school. This way, the teacher will have them when they first start back to begin prepping their classrooms.

I thought that I would share the format of my letter with you. If you are not already doing something similar, this might give you the inspiration to try it for yourself. If writing a letter of introduction to a teacher is old hat to you, then great job! Read on, and maybe you can give me suggestions on how I can improve my format for next year. Here we go!  

Date

Dear Mr./Ms. Teacher:

I wanted to take this opportunity to give you some information about my child, _____, in preparation for him/her entering your class. You likely already know that he/she has an IEP. I would like to go a bit further than what you will find in the IEP, and provide you with a more in-depth perspective about my child so that you will understand him/her better.

First, my child is diagnosed with _____ and _____.

Give a brief description of their diagnosis (all of them, if there is more than one). Tell them what it means and how it affects your child. Be sure to include information about food allergies or other issues that are relevant and may need special attention.

Next, I would like to share some of his/her positive attributes and strengths.

It’s always good to start at the beginning with what your child has going for them. What makes them special and unique? List several things that are great about your child.

Now I would like to tell you about his/her favorite things, which are great motivators.

Try to list a few things your child responds positively to, like their favorite cartoon character, or their favorite toy, etc.     

In terms of academics, I would like to give you some information about his/her strengths and difficulties.

The IEP will probably go into this, but what do you see as the areas where your child excels? Areas of academic success can also be motivators. What are the things that your child struggles with in the classroom, or with homework?  

Next, I think it will be good for you to understand some of my child’s behaviors, triggers, and things we are working to improve.

Does your child have some odd, negative, or stimulatory behaviors? Share whatever you see at home that could also occur in the classroom. What things will trigger a meltdown? What are the things you are working on in private therapy?

I would now like to share with you some strategies and suggestions to deal with the previously listed behaviors and triggers.

What things work to help diffuse your child at home or therapy? Do you have a reward system? Do you use any calming techniques? What kinds of tools, words, or actions will help the teacher? Or, if you haven’t yet figured out what works, tell them what hasn’t worked so they know not to do those things.

In closing, I would like to thank you for reading this letter. I realize that I’ve given you a lot of information to digest about one child. I believe that your understanding of _____ through this letter and your upcoming experiences with him/her will serve to help him/her grow and better participate in your classroom. I fully expect him/her to have a marvelous year and to enjoy your class. Please do not hesitate to call or email me. I am including my contact information below. _____ and I are looking forward to a great year!   

Don’t forget to add in any other special requests or additional information that is relevant to your child’s success in the classroom.

Sincerely,

__________

Phone Numbers
Email

I realize that school has already started, but it is never too late to provide useful information about your child to their teacher. I think you will agree that it is a very good exercise to get into the habit of, and it will benefit both the teacher and your child. And, it will help you have less stress knowing  that you were proactive in getting the school year off to the right start.

For those of you who have written letters like this before, what things do you include that I didn’t touch on here? I’d love to hear your comments! Maybe you’ll inspire me to make some changes to my letter for next year!

Happy Back to School, everyone!

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Young boy with autism is handcuffed

I read this article and I couldn’t get it out of my head. It struck me how easily something like this could happen to my son or many other kids I know.

An 8-year old boy with autism had a meltdown on a school bus and was then handcuffed and taken to the local children’s hospital for a mental health hold. They kept the boy in handcuffs long after he had calmed down. The mother was not allowed to escort her son to the hospital and instead the boy was transported by the police.

So many things run through my head when I think once again about this story.  

First, this whole thing is so very sad. For the mom. For the dad. For the child. For autism parents like me. For everyone. It also makes me angry. Very angry.   

Second, can you say lawsuit? There are so many things that could have legal remedy here. Most importantly is the lack of proper IEP implementation.

Third, the meltdown trigger could be so simple that it’s tragic to see how the whole thing unfolded. The article mentioned that the boy required a special seat belt for his bus transportation. Have any of you, like me, ever seen the calming effect of a seat belt (like a 5-point harness) on a child in full-tilt meltdown? Could it be all about the sensory for this boy?

There were times when Grumpy Badger would be flipping out in public, and all I could do was remove him from the situation and go sit with him in the car (belted into his car seat) until he calmed down. Sometimes getting him belted in, despite his physical struggle, was the only way to stop the escalation of his meltdown.

Along the same lines, isn’t it also safe to conjecture that something as insignificant as a change in routine (like this boy not having his special seat belt on the bus that day) could cause a meltdown, particularly if there is a sensory component to it? I think it is very possible.

The idea that it all could have come down to a change in routine and an easily-identifiable sensory issue really gets me. Could it have really been that simple?

The parents concerns over this incident should be pondered very carefully by the school district. The mother questioned why the police “didn’t take the handcuffs off once he had calmed down.” Very good question, mom! I don’t think there will be any sort of acceptable answer to that one. The father said, “It’s humiliating and it’s inhumane. If you’re going to tell me that ten adults can’t handle a 40 or 50 pound child, then there is something wrong. He didn’t need to be in handcuffs.” Dad, your words ring very true to me!

I could go on and on about this, but I don’t think you need or want me to hammer the point home in extremely minute detail. I think it’s fairly obvious that I don’t like what happened to this 8-year old boy one bit. This child was improperly served by his school and the situation was dealt with in the wrong way. Plain and simple. I can only pray that I never have to experience something like this with my own children.  

What are your thoughts about this incident? Please share your comments below.  

A new chapter

This weekend I was a part of something wonderful and I wanted to share it with you. I’ve been running a support group for special needs families for almost 3 years now and have been doing it as a one-woman show pretty much the entire time. I have always been happy to do it because I know that the group is needed in my area, and frankly, I need the support for myself. Each meeting I get to connect with great people. No matter the diagnosis, we all share similar struggles. And, many of the attendees I can now call my friends. The whole thing is a true blessing to me.

The best part is that I have an opportunity to learn something new at each meeting. The speakers always have great information to share and I soak it up like a sponge. I have a desire to learn, not only for myself, but for the sake of my children. This should come as no surprise. I was always a nerdy kid and got really good grades. I even went back to college (before kids!) to get my Master’s degree because I thought it would be fun. I still get weird looks about that one, especially when people learn that it wasn’t to gain fame and fortune or an executive position somewhere. I just like school, I guess. Yes, I know I’m strange.

As an aside, I’ll tell ya what that fancy and very expensive degree got me in the job department...nada. Zip. Zilch. I’ve always found a job easily, but even with an MBA and an extensive job search in the past year, I got nothin.’

I am a self-proclaimed busy body and not having a job when our family could use some financial help is not my idea of fun. To make myself feel better, I always find ways to stay busy and do work (even if it is unpaid). Helloooo, can you say blogging? Anyway, I got to thinking about how I could create my own job doing what I love. I’ve found that my mindset has changed drastically since my boys’ diagnosis. My heart is truly in the special needs community now. It’s what I am passionate about. I mean, how can I not be passionate about something that affects me every single day?

Since I started the group I’ve met hundreds of people who have children with autism and other special needs. Not one person has had an easy time of anything. We all struggle and there are some significant needs out there. I have to say that my life is pretty darn easy compared to some people I know. I recognize that and I appreciate what I have. I also see it as an opportunity to do something when others might not be able to.

I began thinking that I should take my group to the next level.

My first radio interview!

Do you have 30 minutes to spare? You should head over to the Total Tutor’s Total Education Show on Blog Talk Radio and hear yours truly in my very first one-on-one radio interview. You may recall that I was on the Total Tutor’s show as a call-in guest not that long ago. I even wrote about it here.

I was really surprised when the host, Neil Haley, asked to conduct a full interview with me for his show a couple of days ago. It was exciting but it also gave me that same small wave of nausea I used to get before going into a final exam. It was scary to think about filling a half-hour just with me. Luckily, he had lots of great questions, so it wasn’t as hard as I imagined. Of course, I was nervous and messed up here and there. Oh well.   

The interview took place on Tuesday, May 10th and is now available for instant online streaming or you can download it and listen to it later. 

He asked me about my blog and why I started it. I got to share a little bit about my kiddos and some of the progress they’ve made. He also asked me to talk about my support group. I even got to spend a moment on my soapbox and speak about the need for insurance reform for autism in the State of Washington. We talked about other stuff, too. You’ll just have to listen to the interview to find out the rest!   

I’m happy to say that I got through the interview and I didn’t totally bomb it. Yay for that! I hope you have a chance to listen to the show, and feel free to give me your feedback. 

Total Education Hour Radio Show

Last Friday, February 18th, I was one of the callers on the Total Education Radio Show, featured on BlogTalkRadio. The show is hosted by Neil Haley, the Total Tutor. Featuring special guests Dr. Shellie Hipsky and Dr. Kari Miller, the topic of discussion was educational advocacy, IEP's, inclusion, and procedural safeguards.

I was the show's second caller (right around 28 minutes into the program). On the topic of IEP's and educational advocacy, I had a chance to discuss the importance of connecting with other special needs families locally through a support group. It is these connections that have a huge impact in knowing what to expect at an IEP meeting, particularly when you are new to the process.

It is also very important that you are not alone when you go to IEP meetings. Bring your spouse, a friend, neighbor, or anyone who is willing to sit in the meeting with you to be another set of ears. It's even better when they can take notes for you so you can focus solely on interacting with the IEP team.

I also talked about how a parent should not feel pressured to sign the IEP before the meeting's conclusion, particularly when modifications are made during the meeting. It is perfectly alright to take a copy of the IEP home with you to review with your spouse, a friend, another special needs parent, or an educational advocate. Getting another person's perspective can often be very helpful to ensure the IEP is written in the best interest of your child.

To listen to the Total Education Hour show from 2/18/11, click here.