Wow! The first day of middle school! So exciting for everyone. We are writing to tell you a little about our son Patrick, who is in your child’s class this year.
You will not be told anything about our son by school staff. Federal law (HIPAA) prevents school personnel from divulging any diagnoses of any children that have been placed in your child’s classroom. So, because we realize you may hear your child speak about our son, or you might notice his differences yourself, in the spirit of inclusion and understanding, we want to tell you a little bit about him and his diagnosis of autism.
If you are not familiar with autism by now, we are actually a little surprised, with the incidence in our children’s age group (11-12 years old) being 1 in 88 kids (editor’s note: This blog originally ran two years ago. The incidence for 12-year-old children in 2014 was 1 in 68) . That being said, “if you’ve met one person with autism, you’ve met one person with autism” so we’re going to keep typing . . .
We want to backtrack and tell you why we decided to write this letter, the first time we’ve done something like this in the history of Patrick’s schooling. About a month ago, while flying home from an autism conference, we sat next to a young man who was clearly a college student in our town. We had heard that this particular college employs counselors dedicated to students on the autism spectrum, so after a little small talk about the size and temperature of the plane, we asked him if he knew if this was true and if he had met any of these students with autism. As it turned out, this student had an interesting story. He had been paired with a student with autism his junior year, and they were placed in an apartment-style dormitory. He shared with us that he regretted the way that it turned out, but that he had had to go to the school and ask to be moved from this apartment. The young man with autism could not/would not clean or cook for himself. He often was frustrated and aggressive. He once had a meltdown because he did not know how to mail a package. Our seatmate had become his caretaker, not a fair position for a busy college student. As we talked, it hit us: wow, something as simple as mailing a package was a huge issue. We asked our new friend to think: how do we know how to mail a package? Did a teacher or parent sit us down at some point and demonstrate step-by-step how to do this? The answer is probably not. And it hit us, it’s going to take a large amount of attention to seemingly very mundane life skills to get Patrick through life. To make sure he becomes a taxpayer instead of a tax user. We also realized how unfair it was that this student had been put in this position. Where were the parents? How was he so clearly set up to fail? As Patrick’s parents, we feel we’re responsible. So we have hired a behaviorist (with the help of a state waiver) who thinks up things that we haven’t thought to teach Patrick. Things like how to order food for himself, pack his own belongings for the beach or pool or trip, and to be responsible for getting those things home again, how to deal with anxiety of not wanting to play like the other kids, or share like the other kids, how to read personal cues and listen well to others. So why are we telling you all of this, you ask?
Because, we can’t do this alone. We need your help. If your child says, “Patrick is annoying”, then maybe you can say, “Patrick got sick when he was little and needs your help to catch up on the things he missed out on learning.” If your child says, “I don’t understand why Patrick does the things he does,” then say “We need to support our classmates: what if it were YOU that needed extra help? Wouldn’t you want others to help YOU?” We’re not asking that you take Patrick on as a project. We are hoping that your child can be a part of our solution by being aware and positive. The biggest thing we’re asking is for understanding, and as it is with kids, we believe the rest will fall into place.
We will be the first to admit that this is not stuff we would have thought up if Patrick were not in our life. The “different” kids in our schools were stuffed away in a corner, and, if you happened to walk by, you might steal a glance, but that’s about all the exposure we got back then. No one integrated these children so that we could learn that they are people, too. Our generation is at a disadvantage when it comes to these issues. We can imagine that if we had only typical children and one said to me, “A boy in class is so weird/annoying,” we would have said, “Well, stay away from him!” and left it at that without another thought!
But in today’s world, children like Patrick are everywhere! We ask you to please help us to help Patrick by talking this through with your kids or, if it would help, include us in this conversation. Patrick and many kids like him are very funny and loving, and someday Patrick even might help your kid in math or computers! 😉 We look forward to our year. We invite any questions or discussions you might like to share. Feel free to contact us, and thank you so much for your time and consideration!
For more by Blaze, click here.
Nice. However this kind of approach works today, but what about tomorrow when 10% of the students will be autistic. What about with 50%? The rate is not declining and is not slowing down. It is accelerating up. Radical changes have to be made to stop the curve. Or economy will collapse. State will collapse.
I am the grandma of a sweet 5 year old grandson who will be starting kindergarden in sept 2015. He has severe food allergies. Peanut, treenut, dairy, beef and eggs. We have always packed his own food. We never go to resteraunts. Playdates are almost always at his home. We have to ask children and adults to please wash their hands thoroughly before playing.
When prescool has an after the play or show party, he cannot participate in treats from the many cookie and candies like the other kids.
Events and associations can be heartbraking and frustrating for parents…and grandparents.
The behavior of a child with allergies can also present a very aggitated and aggresive child. For instance, when you are continuously told …no, you cannot have any of those treats..we have yours, a 5 year old gets a bit tired of trying to understand why others leave them out. So i think some similar issues and behaviors are dealt with.
Please understand, i realize some disibilities are difficult in different aspects. And i am not writing to say a child with food allergies has the exact same level of needs in school as a child with autism, or other disabilities. I am writing because i was moved by Blazes letter..as many similar issues have been presented with my grandbaby.
My son and daughter-in-law moved to a neighborhood where the K thru 6 school had a NO NUT POLICY. However, our town of Butler, PA is going through many changes before the new school year. Closing a number of the K thru 6 and herding them to the remaining schools. Overpopulating the schools presents issues not only with food allergy control, there are many, and I’m certain i need not explain them to the Thinking Mom’s Revolution.
We must all be an advocate, a voice. For children who need some extra help, some recognition! Then..you can only hope it does not fall on deaf ears.
Therefore Blaze (whose letter so reminds me of my son, whom i couldn’t be any more proud of for his love and diligence ) I thank you also for a beautiful letter that may be used for a guideline for others who would like to present a heartfelt and concerned letter addressed to others you give anything you have in hope it would spark awareness, compassion and concern for a child other than their own!
Sincerely and with love and gratefulness. ..Sheree Clark mom and nana
What a wonderful letter! Having a child with any type of disability is very hard on a parent and the way other children treat them is difficult on the child.
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Communication like this is such a key to understanding and helping others. Caring is enhaced when we communicate well. Bravo to you for writing and sharing this! Would love to hear an update on how things went for your son that (this?) year. 🙂 Thanks for sharing this!
~ Ali (Mom to a little guy, 10, with classic ASD, mainstreamed with 100% support.)
Nova Scotia, Canada
Thank you for this article as we are far from middle school now, the insight is invaluable in dealing with our own minor problems with sensory processing disorder. I am so greatful to have found such great resouces and the brave parents that are willing to go there. thankyou for your openness.
Is it true that HIPPA applies to schools? Please tell me that you aren’t mistaken. According to my daughter, her 5th grade teacher was very condescending and judgmental when she announced multiple times to the classroom that one of the students was out with the chickenpox. The teacher said his NAME and also remarked that she didn’t know how that could possibly happen. I believe it was done to scare the other kids. I wanted to report it, but after looking at HIPPA, I thought it didn’t apply in the school setting. This teacher repeated the same announcement to me personally when I visited the classroom the next day. UUUUUGGHH!
A teacher asking how could this happen? Does she not understand chicken pox is a virus?
I grew up without HIPPA, it was very common for teachers to announce why a student was absent. Probably saved the, “where’s John? Where’s Jane?” questions throughout the day. But now, they should know it’s personal business, protected by law, and that not all parents buy into the Varicella vaccine. Deal with it.
When it comes to chicken pox and small viruses or even large ones if it can physically effect other children normally the school will send a letter home. But when it comes to autism and other mental or physical disorders or disadvantages you will never betold because it is a hippa privacy matter
It’s against the law to divulge ANY medical info about a child or an adult ANYWHERE. HIPAA isn’t just about doctors, hospitals and the like – it’s any place and any time for any/all medical conditions. It is the responsibility of the school district to send home a blanket note to all students and resident families to make them aware there is a case of chickenpox, flu, lice or, as happened recently here, tuberculosis. NO NAMES are released. Pertinent contacts that are at risk are made aware when necessary. Otherwise, that teacher definitely violated HIPAA. I’m sorry. That’s NOT acceptable.
Wow! This was so wonderfully written! I have never quivered in telling others that my child is on the spectrum as it helps to front-load and prevent judgment. However, this is a wonderful way to enlist the help of others and bring back the “village” concept of raising a child! As a former teacher, I know the power that peers can have in helping to shape other children in their classroom. I watched as my class rallied around a girl with Fragile X and a 60 IQ to ensure she knew how to read and do simple addition and subtraction. And she is one of many that I have challenged my students to “take-on” and they did so with gusto. This letter helps parents to guide their kids in the right direction on being a part of the solution, rather than the problem. Let’s hope Patrick has his best year ever and sees more growth than any one could have ever imagined!!
A must see movie about you – brave mothers and about one brave reseracher…
“Hear the Silence” – one amazing movie we didn’t even know existed.
Spread the word!
Oh my God. Just Oh my God…the first 5 minutes. I had a small panic attack; this is our life, isn’t it?
The video is unavailable at this time. Wondering if there is a different link to access it?
Thank you for sharing your story. Congrats for being the parents that you are to truly care for your son and his classmates.
My name is ChrisAnn Lilly I was a first time middle school parent last year and I was lost so this past year I have started a group for our school it is called. PAWS it stands for Parents Active With Students we help read test allowed,help in lunchroom, dismissal,tailgating, help in recourse room,and were ever we are needed to make our school more smoothly.
My story starts with my daughters Kenndal is 13 she struggles so much in school her reading levels are low so she goes to a special room for help. I will say she made the Honor Roll this semester and full tears of joy .
My Daughter Brooklyn has epilepsy and it is a constant reminder that she is a blessing daily her attitude is what keeps me going.
From a mom to a mom please keep up and I know that God has our backs.
ChrisAnn Lilly 616 204-0450
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Sam and Kim,
It is hard to believe that Patrick is going to middle school! Your updates on Patrick continue to amaze me, he sure isn’t the same five year old I met so many years ago. I am so proud of you all and mostly of Patrick. I will be praying for a great transition to middle school for Patrick!
Kate aka Mrs. Varell-a
You might want to run it by some friends with neurotypical children first. I kinda suspect that we autism parents would have a completely different reaction to it than parents of NT kids. For example, if you take a step back, paragraph 3 may be absolutely on target, but it actually comes across as a little snide, especially to someone who really doesn’t know what we know.
It’s like the vaccine issue. People told me about vaccines before my kids had reactions. I didn’t believe they knew what they weretalking about until it was my own kid who was affected. I suspect most people are going to be just as pre-programmed by the propaganda as I was, and will not be able to see the obvious until it’s their own kid. And even then, there are many who can’t/won’t see.
I think it’s a brilliant letter; I guess I’m just kinda disillusioned about human nature right now. 🙁
I don’t have children period, and I thought the letter was amazing- well written, thoughtful & considered. If I were any sane, intelligent, caring, loving mother I would pay attention, respect it & talk to my child who was in the class to be sensitive to Patrick & his needs.
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Wow! Im so glad i read this. What u wrote in this letter is invaluable both to us spectrum parents reading it now & those who u intend on reaching by writing it. I cant explain why but reading this, of all the things (much deeper things) that I read on a daily basis, brings me to tears. Prob bc it touches on soooo many diff emotions all at once!! We hv many yrs ahead of us b4 my son reaches college age,heck many yrs still until mid schl. He will be 7 this Sep& in 2nd gr. So why does readin this leave me an emotional wreck in tears? Prob bc for the first time, this past schl yr, i witnessed w my own eyes w my son on the plygrd-the EXACT reason why a letter like this is necessary. It shouldnt be. It makes me sad. But truth is, its really ALL we cld do. Thats it. The rest is up to everyone else-parents,students,teachers…& that is SCARY!! We can only hope by instilling our wisdom,knowledge&experience into others they will ‘get it’& adapt. It is our job. It has to be.Its my full time, mentally/emotionally/physically exhausting, back breaking, hairpulling,sweating,yelling, hugging,swearing,kissing,squeezing,crying,
CRAZY job! And theres nothin more i want to be doin than this. That is why I put 1000% of my energy into my son! I spend so much time-researching, reading, organizing, teaching, directing,repeating,showing,explaining,telling, explaining,modeling,waiting,&EXPLAINING AGAIN!!!!Every wakin breath of mine is his. I know what i hv to do to help him reach his max potential.And i do it. Its alot. ALOT. I often wonder if its all for nothin. I am vesting all this into his future now but is it gonna show down the road. Is workin so hard to get him to master these daily life skills that important.BC I get alot of slack from everyone in my life-thinkin i go overboard,do too much, make xtra work for myself, worry about lil things, shldnt exert so much energy into EVERY single thing I do for him to the point of neglecting myself. How can I not? I have high hopes for him. How can I not? He is nearly recovered at 6. He has come sooo far. He WILL go to college. But we have a long way to go still & u reminded me that many new challenges will constantly have to be tackled as the years go by. Thank u for the eye opener! Today’s frustration of him tryin to clean up his room correctly is tomorrow’s frustration of him trying to mail a pkg successfully. And so it is confirmed for me. A future trip to the post office will be planned. And we will mail pkgs to family on the east coast. He will learn the process. We will mail cards & he will learn every step. I will teach him how to do each step. Over&over. He will learn how to address labels correctly,use stamps,how they weigh pkgs,how much they charge, how to pay. Then he will do it himself. With my help. Over&over, until he can successfully mail a pkg by himself. And then we will move onto the next thing. I wont give up. Ever. But more importantly I will CONTINUE TO GIVE IT MY ALL. BC he is MY ALL. *tears* Thank you:)
(Oh & i think i will write a letter to his 2nd gr classmates families in Sep also.)
Wow- love this. Thank you so much for sharing!! I am going to use this as a guide to write a letter for my son’s school. He has tuberous sclerosis complex and autistic tendencies (not formally diagnosed yet). Awesome post!
Beautiful letter! I pray that the students will see Patrick for who he is, and for who he can become. Maybe Patrick can help them as well. There is so much value locked up in these precious children, that we long for the day when the ‘ hidden’ is revealed, and the light and joy of life will be brought forth from these children! What a joy that will be!
Love your post. My 5 year old son is recovered from autism. He was recently placed in a new class for summer camp with a girl on the spectrum. He told me that she yells out in class a lot and he imitated the stimming sounds she was making. I told him that “Alli” needed extra love and kindness. My son asked if she was autistic. I said yes. I reminded him that he was once autistic too and that he needs to help other autistic kids at school who haven’t recovered yet. When I picked him up from school yesterday he gave Alli a hug goodbye and told me that he loved her. What a tender heart he has!
I wrote a letter like this for my son’s classmate’s parents when my son was in 1st grade. He is now going into 4th grade, but homeschooled. Thank you for the reminder for how very important it is to teach life skills like mailing a package that most of us take for granted. It IS hard to know what to teach the children without really thinking about it. I bought a copy of the ABBLS-R which is an educational evaluation and curriculum and it has helped me as a reference on what my son should know.
Bombdiggity!! Things I had never considered. My guy on the spectrum is 4. I LOVE that I got to read this now, instead of years from now. THANK YOU!
Great! I’ll be using this…thanks again!
LOVE LOVE LOVE THIS! You are amazing!
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What a great idea. Go Patrick!!
The piece of this article that hits home is the part about a third party discussing the limitations of a student that obviously met the admissions standards for college, but was not able to sustain daily living.
That is the huge myth about individuals with ASD who appear more capable due to their statistics on paper. It’s often a double edged sword and those things catch up eventually.
It is essential that families ensure your child’s skill sets are well rounded in all areas of daily living, community access, and that things like hygiene become something that is worked on daily.
Granted all of this will be choice options as they become adults, however we do need to prepare them for life and all that it entails.
Not easy and it does take work. But I can imagine too that this individual with ASD had to go through to acclimate to a roomie to begin with and then have to do so again.
Wise words, Mama. I love it, and will be sharing it.
What a great letter – you TM’s amaze me!!!!! May we all steal and distribute???? I would certainly love to hand this to my child’s new teacher and parents!!!!!
Steal away! Adapt it to your needs! Whatever you need and want is great with us!!! xo
Glad to see this, because I just had to send out an “emergency” letter to other parents on behalf of my daughter. I did some plagerizin’. I hope you don’t mind. You are just so perfectly eloquent. Thank you!
What a wonderful letter and a great way to get the whole class involved in supporting your son! Super job!
Great letter although I do not know if I would send it out to other parents, there is still so much ignorance surrounding Autism and other LD/DD. I feel the majority of parents would set their kids up to “watch” for your sons difficulties and report them back to them possibly setting off a chain reaction of more ignorance.
I would send it to every member of the faculty that will encounter your son in MS, I sent a detailed letter to everyone of my daughters teachers last year (entering MS 7th grade) it made such a difference in the way they approached her and she had a wonderful year!
Excellent article today! I will be sharing this with the moms in my area and maybe some of them will even ‘borrow’ your language for letters of their own. Daily living skills are so important in order for our children to be successful in life. The story of the college kid that could not cook or clean for himself really hit me.
This is brilliant & I will share widely with other parents to adapt. A bi-product of raising my son has been my own education about disability awareness and the opportunity at every turn to help others move from fear and prejudice to understanding and compassion.
Wonderful reminder to all . If it were that the parents in my childs class were 1/4 involved, engaged and thinkers as you are. Many of the parents are not approachable:( denial or just let the system deal. I have approached teachers and principal to let them know that I am available to help them and my daughter understands her classmates need help. Thanks for the great post and I am sharing 🙂
What a fantastic idea and letter! I am blatantly stealing this from you for my son’s class next year 😉 Thanks!
I am thrilled that this letter could help you, Lori!!! Let us know how it goes! <3
Wow! Your absolutely right! The last thing these kids need is to be passed off as weird. Their is a reason for their “weirdness” or their “slowness.” I am currently reading Dr. Herbert’s book “The Autism Revolution.” In her book she explains why children with “autism” exhibit the behavior they do. I came to the conclusion a few years ago as I began to study this that behavior is how a child hears, how a child sees, and how a child feels. Its even more than that…….. when your nervous system, proprioception, and vestibular are compromised strange behaviors occur. This book puts you in the body and the brain of these kids. If teachers and administrators all across the country would read this book over the summer I believe the classroom would be a much friendlier and accepting place for children on the spectrum.
This is very very very thought provoking. Thank you so much for sharing….
Thanks, Sugah, and MUAH back at ya! xo
I wish I had written this letter myself. I love you Blaze and love that you did this for your sweet boy. xoxo
HUGS to you, Sainty! xoox