letter

To Whom it May Concern,

I am the parent of a special needs child.  I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me.

Please do not pass judgement of me without knowing why I did not attend the school PTA breakfasts or community picnics.  Please take a few minutes to understand why I did not take you up on your offer to have lunch or grab a cup of coffee.  Although we see each other in the supermarket or at school functions, I don’t think you really ever knew me, actually, I can guarantee that you did not know me because just as my child was different, so was I.

I was in survival mode to keep my family in tact and to give my child the best quality of life possible.

I was presented with parental decisions that have torn me apart and kept me up more nights than I can possibly remember.

I had spent most days of the week at therapy and doctors appointments and most nights up researching treatments and medication options.

I was forced into isolation at times due to the stigma and viagra tadalafil misconceptions that are epidemic in our society.

I became proficient at prioritizing my life and learning to let the little things go, to look at others with compassion instead of tabloid material and to turn a blind eye to the stares or ignorant comments.

I did the best I could.

I survived.

I am one of the lucky ones, my child has blossomed and has exceeded all our expectations.

I have now become strong, I have become confident and I have become a fierce advocate for parents of special needs children.  The growth did not come without much pain and many tears but it came.

So I ask you, please

The next time you see a parent struggling with a raging child, a child terrified to go into school, a child making odd movements or sounds, a child that seems to be in a world of their own ….. be kind.  Give a smile of recognition for what that parent is going through.  Ask if there is anything you can do to help, give them a pat on the hand or offer for them to go ahead of you on line.

The next time you have a birthday party for your child remember that their child has a hard time with a lot of sensory issues and social situations.  Please send their child that invitation and how to buy cialis know that more times than not they will not be able to attend but appreciate being included.  Understand that in order for their child to go to the party they may need to stay for a little while and please make them feel welcome.  When they let you know that their child cannot make the party consider inviting that child for a one on one playdate or an outing at the park.

The next time you are grading homework papers please understand that their child struggles, some with learning disabilities others with the exhaustion of  their disorders or the obsession with perfectionism.  The Perfectionism is not necessarily to have the answers right but to have it “feel” right for them.  They have spent hours doing what most can do in ten minutes. A paper returned with red circles and comments only hurts a child’s self esteem and causes school anxiety. Please understand that when they see the school come up on their caller ID their hearts sink, remember to tell them about all the gains their children are making as well as their deficits.  Take a minute before that call and know that they appreciate all you do and want  a collaborative  relationship in their child’s education.

The next time you are in the teachers lounge, please do not discuss their child.  Please do not make negative comments about their parenting or their child’s behavior, it gets back to them and it gets back to other parents in their community.

The next time you pass the cafeteria and buy abilify online see their child sitting alone please consider inviting that child to eat lunch in your classroom and be your helper that period.  Consider working with a guidance counselor to set up a lunch buddy group in a different area.

The next time they are at the CSE meeting planning their chid’s IEP know that they are educated, informed and confident knowing special education law.  Know that they have found the courage to stand up to conformity and will explore every option to give their child the differentiated educated that will show their gifts and not just their disabilities.  Understand that educating a child with special needs is one of the most difficult tasks a parent can face. Know that the last thing they want is an adversarial relationship.  Please show them the same respect they show you.

The next time you are creating an educational plan please take into consideration that their child may have specific interests or obsessions.  Foster those interests, instead of taking away that art class for a resource class consider adding an art class instead. Think outside the box, these parents do.

The next time you see that child in a wheelchair unable to speak or control their movements, don’t stare, don’t look away, say hello.  Do not assume that because this child is nonverbal that they are not intelligent or do not understand the awkwardness that you feel.  Take a moment out of your day to show kindness, support a parent enduring incredible pain and just give them a smile.

The next time your child comes home telling you how Johnny or Susie is so weird, take the time to teach about differences.  Take the time to talk  about compassion, acceptance and special needs. Please remember that your child learns from you.  Be a role model, mirror respect and discourage gossip.

The next time you hear a comment about how out of style these kids are, educate about tactile sensitivities and visit web site the fact that these kids cannot tolerate many textures and fits.  Imagine what it would feel like to have sandpaper in your stilettos or tight elastic holding on your tie.

The next time you see an out of control child do not assume it is bad parenting.  Understand that many of these disorders have an organic basis, are biological and are real illnesses. When you hear the words mental illness, take out the “mental” and remember  ”illness”.

Know that it is this generation that can stomp the stigma and create a world of acceptance.

The next time other parents are talking about “Those Kids” be our heroes, stand up for us.

The next time you see a special needs child know they are not just special in their needs but in their brilliance as well.

Take the time to meet our children.  Take the time to know us.

 

AFTER POST:  Thank you for the tremendous response to this writing and requests to post or share on your blogs, websites or educator sites. This writing has been viewed over 150,000 times and I appreciate your support.  Feel free to copy in its exact form and use author credits to comply with copyright without direct permission.

 

 

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154 Responses to “Dear School Personnel, Community Members, Teachers, Parents and Neighbors”

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  1. Hi
    I’m a mom of a daughter with special needs, hearing impaired and several medical issues. I’m trying to pass the word of Understanding along to parents of children with physical disabilities, mental health issues and Parents who just need a hug or a save place to vent about their struggles. A place to read our story so they don’t feel so alone.
    Your letter to the school personnel takes me to a spot where we struggle so much with our girl. A place we find she struggles so much to go to daily.
    Can I ask your permission to put a copy of your letter on my website?
    Thanks
    Trudy

  2. Only a parent who has been there can understand. Thanks I’d appreciate your sharing it

  3. Thank you for this. My son has special needs but looks “normal” (as much as I hate that word). He has Autistic-like behaviors, obsessions, and rages. People have no idea what it is like, and judging does not help. This made me cry/

    • @Marianne Wonderfully said. Parents with special children have this special bond. I feel sad when some family members dont seem to understand my sons situation; or dont want to understand because they are actually ‘afraid’ to. WE all have this little voice inside which at times want to explode and only best offers scream, or just lose it; specially when we come across people who are indifferent and/or just plain ignorant.

  4. This made me cry as well, you captured our lives brilliantly in a way only someone who is walking the path can.

  5. Thank you so much for this beautiful piece of writing. I have a brilliant child who suffers from ADD, dyslexia and dysgraphia. His teachers did not want to accomodate him by giving him oral tests. Finally after much distress, we got it approved. Yes, we as parents have to fight for our children because no one else will. My hat goes off to you.

  6. Melissa, having a child with invisible disabilities is harder than having a child with physical ones I believe. The compassion and respect is often not there and the stigma creates so many additional issues

    • @Marianne – I so agree with you. I get the “but he looks normal” comment so often! I remember being at urgent care w/him one day and he was having a meltdown from the long wait & of course there’s always someone with a rude comment. I lost it & yelled that he had a disability that affected his behavior and how soooooorry I was (sarcastically of course) that he wasn’t in a wheelchair or walking with a white cane so they could see the disability. I had never lost it like I did that day! It actually felt pretty good LOL.

      Thanks so much for this letter! Made me cry. A LOT!!

      • @Stacie I totally agree with you. There are a lot of ignorant and unintelligent people out there. Lets just say, they are the Pathetic ones. My 15 yr old looks taller, and bigger than those his age; people assume he is matured for his age which hes not of course. His social skills are very poor; he so wants to belong but cant really help himself from making inappropriate remarks, and actions.

      • I share most of the experiences Marianne depicts in this excellent piece. @Stacy, I love it that you lost it. Sometimes “they” (and we all know who they are) need to hear our frustration unabridged by politeness. I once lost it on this lady who was passing judgement on me when I was at the store, struggling with my kids and no prescription levitra I was so sleep deprived there was no holding back. I am normally very reserved, but I screamed at her and didn’t mince words….and within my tirade told her that she had no idea and rather than stand there criticizing me she should instead offer to HELP! She stood there dumbfounded. I am sure I didn’t win her over, but it felt good to, for once, to let it rip.

    • Janette, Australia

      Reply

      July 15, 2011

      Thank you for posting this. Invisible disabilities are harder to deal with for both child and parents. My daughter was a “normal” adolescent girl until a year go when she developed a hip disorder called SUFE. It’s common but its cause is unknown; it’s complex but managable; it’s managable but years from now it will turn into a debilitating chronic illness. I still sit and do all the things you’ve written about. And yes, I’m still running into those who turn the other cheek. Your words give me hope. Thanks!

  7. WOW, very well done! Like the expression, “out of the mouth’s of babes” this one is “out of the mouths of special needs parents”. Love it!

  8. I love this. I wish every teacher and every parent would read it. I believe any parent that has a child with special needs has these same feelings. I do. Thank you for sharing

  9. What a heartfelt, beautiful post. Thank you for writing this, for speaking for us and them. Lovely.

  10. Trev. York.UK.

    Reply

    June 27, 2011

    Nice one! couldn’t be put better.

  11. Beautifully said!

  12. Christine, Ozarks

    Reply

    June 27, 2011

    Way to summarize a very complex set of experiences and www.ncitech.co.uk emotions! I cried, too, but it is so good to know that others share the experience. I find it particularly hard to choose my battles. But my ASD child is my third, so I avoid eye contact in public anyway when my child is acting up–there sure are a pack of sourpusses out there who are quick to judge any child and parent. But there are sure some lovely people out there, too, who have made my day with an encouraging smile. Thanks for sharing this great piece of writing!

  13. Thanks for the comments. Christine I have found and others as well that sometimes you can have a small business card printed up very inexpensively explaining your childs disorder with the name of a foundation that they can go to for more information and awareness.

    I think back when I was in my twenties and uninformed and I think I too rolled my eyes and was guilty of judgement. I think we not only owe our children advocacy to ensure they are treated with respect but also to educate others. It’s time to stop looking away and avoiding eye contact. It’s time to communicate to educate so no other mother or father has to feel that sense of shame ever again.

  14. Thank you so much – well said, although my son is 27 now I still often struggle with not being able to attend things, although lucky after all these years most of my inner circle gets it.

  15. Well done! Thank you for having this dialogue, so needed and buy propecia pills much appreciated.

  16. Hi Marianne,
    I have to tell you, your letter is the most REAL, tear jerking letter I have ever read. As a special needs mom trying to make sense of all of it, this letter hits so many tender spots when it comes to our children. It is more painful that people can truly imagine if they do not live it. The sense of loss, the feeling of being left out, people not understanding the internal suffering and the school staff not being collaberative, just to mention a few of the many things we face and NEVER IMAGINED WE WOULD!
    Thanks for your honestly and for sharing :)
    Best to you and your family,
    Amy

  17. Stephanie Wenther

    Reply

    June 28, 2011

    I cannot stop crying. This letter is so perfectly written and so well said. I am going to share this with everyone. Thank you for putting into words what many of us feel but didn’t know how to express!

  18. I love your honesty and compassion. Beautiful.
    You are precious to our community.
    Thank you for being you,
    Eric

  19. just a mom of a learning disabled child

    Reply

    June 28, 2011

    Ive been there and been judged. Ive had my child isolated from the first day of school by a new teacher who simply read his IEP and assumed that he would be nothing but problems and we like it then forced him day after day to work with the one child he could not get along with. Ive also had the teachers who loved my child and sent him gifts in the mail just to say she was thinking of him…little things like a card on his birthday or a pack of stickers. when I see the parents look at me and think Im a horrible mom because my child is different and because of his learning disability and inability to express himself well enough developed behavior problems too. Then even when he tried his hardest it was not good enough because his teacher would look for something…anything he did to send a note home to tell me something negative. And then tell me it was my fault because I stayed home with my child instead of sending him to daycare and working like all the other moms so I did not expose him socially e3nough. This article only touches on what it is like to have a special needs child. But cant even begin to express how much you love him/her not in spite of those special needs but because of them. Because they teach you tolerance and acceptance and what unconditional love really means. I feel I was blessed to have my son not burdened in any way and wish that people could see that about every child labeled “special needs”!

  20. What a fantastic post, sums up the feelings perfectly. Brought tears to my eyes. You know you are not alone in how you feel but when you see it written in front of you it just validates that its ok to feel like losing the head when someone says “but he/she looks normal” i’ve had friends say that, or ah isn’t it a shame”, no its not, he’s a beaautiful shild and purchase cheap viagra a darling son that i wouldn’t change. Who’s to say what “normal” is anymore anyway. Sorry for the rant ;-) Beautiful post, top marks x

  21. OMG I so could have said all this. Thank you so much for saying what is in my head so much of the time.

  22. Kimberly Lowe

    Reply

    June 28, 2011

    Marianne, thank you. You put my thought into a complete sentence, to form the perfect letter. Great job!

  23. Wonderful post. I cried tears of recognition. Tears of continued frustration.

    Our older daughter is the one in the wheelchair and who cannot speak. I can count on one hand how many times in the last fifteen years that people asked me if I was OK. People talk to me about my daughter as if she were an invalid. She is not an invalid. She has cerebral palsy.

    Others have assumed they could raise her better than we could. Their judgments have been profoundly hurtful. It’s taken me almost all of her life to get her label changed from Severe to Profound to Moderate to Severe because the prevailing assumption is that physically disabled equals mentally disabled.

    Regardless of label, we have a daughter who has a wicked sense of humor and a spark in her eyes. I hope more people start to look into those beautiful eyes of hers and start to see into her soul. She is so much more than a girl in a wheelchair.

    Thank you again.

  24. Love, Love, Love this letter. Awesome insite into the world of so many parents and students. My grandson has Autism with major sensory issues. He starts public school in the fall. We are still overwhelmed and learning. His parents are in self-imposed isolation mode. I’m trying to learn everything I can, but much of the time they don’t want to try new things and listen to new options. There is frustration within families as well as with school and online levitra tablet the outside world. Thank you for this letter!!!!

  25. Beautiful. Thank You.

  26. Elaine van Zon

    Reply

    June 28, 2011

    This is fabulous sweetheat, as a humble teachetr I often get frustrated about how little care and understanding there is among my collegues for the needs of our autistic students. Can I print this and share it at school and do you mind if I post it on my blog too?

  27. Dani Feierstein

    Reply

    June 28, 2011

    What an incredibly powerful message. my son is 31 with a genetic disability. it includes autism, MR, a controlled seizure disorder. He is wonderful and a joy to be around. Very innocent and trusting which scares the daylights out of me. We works at a sheltered workshop and is so proud of his paycheck. I am so proud of him.

  28. I am so glad this writing has touched so many of you. Please feel free to share it on your blogs, websites or schools but please give author credit. Thanks

  29. Like a lot of other people on here this made me cry as well. I have two little boys ages 3 & 5 both on the spectrum and the challenges are many. Right now I’m trying really hard to “keep it together” as they are on school vacation. The extended year summer program cannot start fast enough. Being off their routines is torture for us all. ;-)

  30. Silvia Hierro

    Reply

    June 28, 2011

    I am a mother of 4 children. I am a mother of a special need child who was recently diagnosed after 5 yrs of trying to find the right answer and lcppm.org the mother of a sweet little girl that is displaying many of her brother’s behavior. I am in the emotional stage right now and your letter made cry. So much cruelty and judgement from society!!! Thanks for sharing!

  31. Awesome! This is up there with Richard Lavoie’s F.A.T. City Workshop. “Some” of the teachers get it but very few parents have any idea what it’s like unless they have a child that struggles. If every PTA across the country took 15 minutes to open the first meeting of the year reading this, imagine how much progress could be made. Adults (and kids) aren’t evil, they just don’t know. Mind if we share this?

  32. I read this post and my heart sank. As an educator, psychologist and a parent of two children (both who had IEPs) I could relate to so much of what you posted. Thanks so much for sharing and being a tireless voice for parents and children with learning challenges everywhere.

  33. Thank you for expressing what I’ve never been able to write down yet. Lately, when I try to find the blessings in the not-very-special needs, I see that there are other people in the world like you, who don’t judge, and who have gone through so much in your life. Thank you for teaching me today.

  34. Loren Echevarria

    Reply

    June 29, 2011

    I agree…it also helps to hear it from another parent survivor.

  35. Hello i want to thank you from the bottom of my heart for writing this beautiful letter. I am also a mom of a child with many challenges including develpmetal delay, speech delay and many sensory issues to name a few and cheap cialis india you really wrote what i feel! Thank you so much!!!

  36. Kerstin Talamini

    Reply

    June 29, 2011

    Your words express so much of what I feel so many days and nights. Survival mode, trying to keep it together, endless nights on the internet with the believe, that today is the day I will find the groundbreaking therapy that will help him….thank you for this beautiful letter and thank you all for making me see, that there are many of us who love our children with all our hearts!

  37. This is a beautifully crafted post. My son with Williams syndrome is not yet school age but this post has given me the tools to talk about some of the challenges that I fear we will face as he gets bit older. Thank you!

  38. This post had me in tears. I am definitely going to share this. I am new at all of this, my daghter just turned 10 months old and is now in OT for what, as of right now, they are thinking is Sensory Progressive Disorder. She is only testing at a six month old developmental leval, does not babble, laugh, or even sit up on her own, mch less anything else. I always hear the same thing, but she “looks” fine! I do not know what I am expecting in the future since she is still so young but at the end of the day, I am still just so happy she is healthy and happy. But I have had to fight and annoy several different Dr’s to get to the point we are at. I will contine to fight and be my childs biggest advocate. Because in the end, we are the ones who know our children more than any Dr could even begin to.
    Im so grateful to have been able to read this post and hear how I feel and what I worry about. Reading several of these other posts as well, yo all INSPIRE me. My thoughts and tramadol generic well wishes are with each and every one of you.
    THANK YOU SO MUCH!

  39. Thank you for writing this. I will be sharing with my family, friends and community!
    Jenni J

  40. My son is one of those that, on the outside, appears normal. Especially on a good behavior kind of day.

    But, he’s autistic.

    On the days that he seems spoiled, screaming, crying, kicking, tantrumming, etc and acting like a 2-year-old, it’s very obvious that something is out of whack. As he’s gotten older (he’s 12, now) most people can tell that there’s some type of issue going on, not that he’s just being disobedient or disruptive. Most will now ask.

    But, we DO still get stares. Unkind words. Or worse yet, those that look away in horror at my “disobeying” child. I take that opportunity to educate others and help spread awareness. Most people will walk away with a greater appreciation for their own situation and, while I don’t want pity, I do want compassion for my son and how he experiences life.

    I hope you don’t mind…. but I want to share this on Facebook and on my own blog – how do I share on my blog? (do you have a preferred way?)

  41. Joel Yanofsky

    Reply

    June 29, 2011

    Thanks for this, Marianne. Very moving and buy viagra or levitra worthwhile. The kind of message that needs to get out there.

  42. thankyou for sharing and if you dont mind i will send to the principal of the school were my son go.Becouse she as no consideration about lot of things for special needs children, for her my son is curedhe dont need anyservices .Anyway thakyou again so much.CIAO

  43. Thank you so much for sharing this. It brought tears to my eyes. My daughter is 9 and just now going through the frustrating stage of finding a diagnosis that fits her behavior. She looks ‘normal’ as I have read above, but her behavior, thoughts, obsessions, and a lot of times even her speech, is on a different level as yours or mine. For nine years we’ve struggled, been judged as bad parents, blamed for her ‘terrible’ behavior with the fits, yelling, meltdowns, etc and spent many a night crying myself to sleep. Even my family chooses to judge and be very critical, and sometimes downright mean, to and about my wonderful daughter.

    She lives in a world that we can only imagine. Her doctor once said he would love, just once, to get into children like her’s minds, just to see how they work. Unfortunately, he is one of the few ‘official’ people who understand and know that something is different. She’s had a slew of teachers who have never failed to find an opportunity to tell me just how terrible she is in class, but very seldom tell me the good things she’s done, the progress she’s made, etc. Her principal told me “she can’t have a disability, she gets great grades”.

    I would love to be able to send this on to my child’s school to help them see and understand the struggles we go through as a parent and even a family and to realize that every time they look down upon her, scold her for something she cannot control, or punish her for the same, she is giving her another reason to become depressed and what is levitra down on herself.

    Thank you so much for sharing!

  44. Wow. I didn’t realize so many others got the “she/he looks normal” routine. My all time favorite is “what’s wrong with her?” I’ve learned to swallow my irritation and with a smile say “nothing that’s not wrong with any teenager that thinks they know everything and that parents are stupid, but if you mean, what is her health condition, she has…….” and use it as an opp for subtly teaching some sensitivity and tact. it’s comforting to know I’m not alone in this…..

  45. Thank you for so articulately expressing the experiences and lives so many of us live. I have always tried to highlight the positives, but these experiences I know all too well. I am thankful for those in our lives who are positive..but there is always the late nights, worrying about holding the family together amongst the advocacy, the research, etc..etc..What a great letter…Thank you so much for sharing..

  46. You said it all! xxx

  47. Thank you for writing this, as a new mom and potentially a mom of a child with a disability……to early to tell, my child is developing normally, but things can change so quickly. I am always trying to see what others live with so I can develop compassion and understanding. As my son gets older, he is going to be exposed to all kinds of people in this world and I hope to teach him that everyone is different, but everyone has something extra special that makes them who they are and if you can find that one thing, he will have so many friends in life. I hope to teach him that all the kids in his class are going to be different and will have different needs and buy viagra online usa that he will always need to be patient, kind and understanding and remember that not everyone will be just like him. I hope as a parent, I can remember to say hello, and show support to all the parents I come into contact with. We are all in this together…right? After reading this, I’ll be sure to invite your child to the birthday party and hope you can come for even a short time, I’ll be sure to say hello to you and your child and teach my son to do the same and I promise not to judge, judging someone does not help anyone.
    Thanks for the post and for helping educate some of us new moms! Your post will stay with me for years to come!

  48. Someone posted this link on my community Facebook page. I would like to share it next week in its entirety on my blog! It is beautiful! I of course will give you full credit! Just beautifully written! Thank you!

  49. Thank you for sharing this. This brought tears to my eyes. If only we could walk a mile in someone’s shoes before passing judgment or making negative comments. It would save so many hurts, and more importantly, if those comments were positive and uplifting instead, could just help a struggling caregiver and encourage them to keep going. A little love and canadian cialis online understanding go such a long way.

    Now I would like to share a story with you that touched my heart. Someone sent it to me recently and it was just what I needed, as the caregiver of a special needs child. I hope it encourages you also:

    A Blue Rose

    Having four visiting family members, my wife was very busy, so I offered to go to the store for her to get some needed items.

    I scurried around the store, gathered up my goodies and headed for the checkout counter, but I was blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn’t in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, “Mommy, I’m over here.”

    It was obvious now, he was mentally challenged, and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, “Hey Buddy, what’s your name?”

    “My name is Denny and I’m shopping with my mother,” he responded proudly.

    “Wow,” I said, “that’s a cool name; I wish my name was Denny, but my name is Steve.”

    “Steve, like Stevarino?” he asked. “Yes,” I answered. “How old are you Denny?”

    “How old am I now, Mommy?” he asked his mother as she slowly came over from the next aisle.

    “You’re fifteen-years-old Denny; now be a good boy and cialis united health care let the man pass by.”

    I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles, and school. I watched his brown eyes dance with excitement, because he was the center of someone’s attention. He then abruptly turned and headed toward the toy section.

    Denny’s mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn’t even look at him, much less talk to him.

    I told her that it was my pleasure, and then I said something I have no idea where it came from. I told her that there are plenty of red, yellow, and pink roses in God’s Garden; however, blue roses are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a blue rose and if someone doesn’t stop and smell that rose with their heart and touch that rose with their kindness, then they’ve really missed a blessing.

    She was silent for a second, then with a tear in her eye she asked, “Who are you?”

    Without thinking I said, “Oh, I’m probably just a dandelion, but I sure love living in this beautiful garden.”

    She reached out, squeezed my hand and said, “God bless you!” and then I had tears in my eyes.

    May I suggest, the next time you see a blue rose, don’t turn your head and discount generic cialis online no prescription walk off. Take the time to smile and say hello. Why? Because, but for the grace of God, this mother or father could be you. This could be your child, grandchild, niece, or nephew. What a difference a kind word, or a moment of your time can mean to that person or their family.

    From an old dandelion

    People will forget what you said; people will forget what you did, but people will never forget how you made them feel!—Anonymous

  50. I have 2 wonderful sons who are both on the autistic spectrum. Eldest diagnosed at age 3 and youngest at age 6…In my day when they were little having two was unusual..I have been through both the SEN schools with one and mainstream with the other…My eldest lad is now at university, he still isn’t that great socially with people he doesn’t know but he’s doing extremely well…Minor blip of spending 2 years on a course he found boring (engineering) and now doing computing with animation…Tomorrow 1st july one very proud mum will be watching him being given an award for academic excellence :o ) Not bad for someone who didn’t speak until he was 5 and who struggled with bullying in primary school. With the right input as this blog post is saying then they can blossom and achieve well in whatever way life takes them

  51. Please read “Out of my Mind” by Sharon Draper. EXCELLENT book…

  52. Pingback: Help Schools, Teachers and Parents Understand Learning Disabilities | Easy IEP Help

  53. Marianne,
    What you wrote was so true and heartfelt. It is fantastic that you use your voice to help unite us all. I applaud you and all your efforts. You know I am a big fan of yours. We have come a very long way. When Brandon was born thirty-eight years ago I had no one to talk to and thanks to the Internet that has all changed. We need to keep talking, keep writing, keep believing and together we can, will and are making a huge difference. It is all about educating others and coming from a place of kindness and peace, step by step one day at a time . Keep up the great work!

  54. very well put, wish I could put it so well, would you give permission for me to put this on the website of a support group fot parents of children with asd I help run please?

  55. truely insperational and so so very true i will be copy and pasteing this in to my notes on facebook i hope u dnt mind and i will link this page too xxx

    everyone needs to know the way it is x

    i have a son wth ADHD, aspgers and other sensory issues but people mis jude him all the time :(

    thanks you for this xx

  56. Thank you for your words! I, too, have been in your shoes, but with 2 children at the same time. This writing describes exactly why I became a special education teacher, after raising my sons through struggles. I, too, am a strong advocate for parent and child rights, although sometimes it means fighting the same system that employs me. I will share your article with my fellow educators and the parents of children that I serve.

  57. I was one of the people you are talking about; Intolerant, lack of understanding, stereotyping children and parents, until my son was diagnosed with Asperger’s Syndrome.

    I am now a different person compared to what I was 5 years ago. Life can be difficult at times but very rewarding. I am grateful to my wife and 10 year old som for showing me the light. If Jamie could be born again, I would want him just the way he is, honest and always seeing the positive attributes of others. He is special and I consider myself lucky to be his father.

  58. Marianne,what an eloquently worded post. i very well relate to this from a number of different “hats” or perspectives. This should be sent to cse and cpse offices for distribution!

  59. Marianne,

    Thank you so much for writing a letter articulating so much of what so many parents go through. As I reread this post it occurred to me how much you are asking for just common courtesy respect and basic human kindness.

    No they don’t know you. They don’t know how there are days it is impossible to go to a PTA meeting – that one more meeting, session or appointment would be more than you can bear.

    But as you know – you are far from alone. You do so much for so many. Please make sure that you also care for yourself. It is so very important and so difficult to do when you have a child with special needs. You are far more of a hero than you realize and heroes have needs as well. God bless you.

  60. OpinionsToGo

    Reply

    July 4, 2011

    A beautifully written letter, with a message that everyone must hear. I, for one am sorry that you even had to write it. In the year 2011, one would think that man would be evolved enough to know how to treat EVERY HUMAN BEING!
    I can only lead by example.

  61. Marianne,
    Just catching up on my “blog reading” during the (US) holiday, and all I can say is, Wow!

    This post can give insight to families without the experience and will give words to those constantly in them. I think you covered it all.

    Thanks for giving your permission to republish in the “After-Post…” I know I will be passing it along (and your blog). Sincerely,
    Michael Harris

  62. Marinne, Wow!!! This post does blow me away, since I have a grown adult daughter that was labeled, while attending her young school years!!! My husband and I (as well as her twin sister)fought for her to be able to accomplish and be recognized as an individual and all you have said. She looked “normal” and she was able to learn. But she was picked on, bullied, was called names by her peers and left along at the cafe,during lunch etc. We were told by the school to have her tested and we did, at numerous hospital’s and the same conclusion was that she was a child that had a “learning disability”. We didn’t want to call it “special needs” or “learning disability, even though that is what they continued to call her. As she grew and still had problems with her class mates and the teacher’s putting red marks all over her papers, some did understand and took those steps to work with us and go by the reguired Ed Plan. Those teachers’ I will be ever greatful, because they did understand and guided my daughter. Now she was in High School, what a joke, I continued to fight for her and she’s come home and tell me she didn’t want to go to school any more. It took tooth and needles to get her up to go to school in the morning. Working with her and her homework was a job. She would know the material, but couldn’t always put it on paper and the tests would be too hard for her. She did receive an award for accomplishment, and it wasn’t for her school work. When we received the invitation to go see her receive her award she was so thrilled. She did go to Sunday School, sang in choir and girl scouts, she did Summer Theatre and she did have a couple friends that were “special needs”, but she wanted the “normal students” to like her. At the time, I spoke to my Mom and she reminded me of the challenges that I had as well, and how they were kind of the same as my daughter. Yet, I took the next step and wasn’t going to let others put me down either.
    So we went the next step and found another school for her, a Technical High School with her interest of Plants and Flowers. Her last three years of High School was a GREAT Success and she wanted to go to school. She made many friends and most teachers’ did her ED Plan. Although at her other high school before they had told me she wouldn’t have graduated with a High School diploma, she would have had a certificate, … that had done it for me and her, because I was told this and that she wouldn’t make it in College. I had heard that about myself, as well, but I did graduate, and have two College degrees. So don’t ever tell me I can’t accomplish something nor my daughter either, it does make us more determined to make our goals and achievements.
    She had between a 3 – 4 point average at the Technical High School, and they were hard courses, but she made it. She had scholarships to go to college, and she has a College Degree in Floriculture and has been working for 10 years, doing Floriculture and other jobs were she works. She,(and her sister) are very talented young women and will always accomplish what they want.
    I still believe with All My Heart that my mother lived until my daughter graduated from College and than she was able to pass on knowing that she had accomplished her goals of finishing her College dream. I do totally agree that as parents we must always stand up for our children and when our families have to deal with “special needs” or “disabilites”, and “normal” children we need them to remember the special blue rose. So as an conclusion…my daughter has a “learning style” of her own and she is a special and unique individual, just like her twin sister, and like everyone else in the world that God has created in this World of Ours. God Bless!!! Thanks again for writing this and being able to pass it on to others in my life. We are a very Special Lady.

  63. SUNDARRAJAN

    Reply

    July 8, 2011

    I AM SO MOVED ; I FELT LIKE IT WAS ME SPEAKING BUT WITH SO MUCH MORE ARTICULATION; YOU ECHO ALL OUR THOUGHTS; I FEEL SO GALD THAT IAM NOT ALONE

    GOD BLESS YOU AND YOUR CHILDREN

  64. I am now homeschooling my ADHD/dysgraphic/anxious/stuttering and other speech issues child due to all the ignorance out there. Because he is smart, he tested out of any services on an illegally used RTI despite the fact that I had an evaluation done. The school would also not recognize his dysgraphia or speech issues at all since age 4………yes………..I tried even back then to get help. His anxiety levels were through the roof once again so I pulled him out mid year grade 2 rather than fight the bureaucratic red tape for the next few years while he slipped into further depression. So glad I did! His speech is bettering again, he spells on level and every other subject is now in the 99th percentiles for his grade. He loves it because our home is a quiet, structured place where work can be accomplished and he never has to stay in for recess. The teachers at his homeschool coop. do not see what the problem was. For them, he is always attentive and quiet. It has been 7 months now and things just seem to keep looking up for us:)

  65. I wrote something a few months ago that I really want to share with you all, because I want you to KNOW what you’re doing is working. My special needs child is Autistic and is also non-verbal, SID, and possibly has difficulty with motor planting… Thank you so much for all of your selfless efforts.

    To those who went on this journey before me:

    I’m always amazed by how many stories I hear of those around me having had such a hard time getting the services and help they need for their children. How the “professionals” they’ve come up against told them “your child is Autistic, they will never live independent lives, never be able to speak, never go to college, never get married, or even have a job.”

    I have had a super easy time (once someone did listen to me, all it took for me was that FIRST person to listen), to get everything in place my daughter needs and the family needs to help her (and themselves too, really). No one has ever said “she will never do this-or-that”. Her Speech Path has said she makes a lot of different noises and I really think she will speak one day, we just don’t know when that is. The OT has said, one really never knows what the child is capable of and you shouldn’t limit them to whatever so-and-so-professional says. The school(it’s a small public school) goes above and beyond to work with us and do various things to try and make her more comfortable with the school. So much so, that she walks into the classrooms after speech (ALL of ‘em) and the teachers just say “hey Faith!” then she generally walks out of them (sometimes a lot), but they all do this to try and help her transition of beginning school be “less” traumatizing on her next year.

    So, I just gotta say a BIG “Thank you” to those parents who went on this journey before me and worked endlessly, tirelessly and selflessly to have their voices heard because I KNOW that you are the reason my journey has been so much easier to get what my child needs to help her have the most productive life she can possibly have and why I have run into professionals with hope for her and her future. Without the tireless work you have put in, this wouldn’t be someone’s reality. I’m so sorry it hasn’t been more people’s and wasn’t yours, but it IS helping and making the way easier for our children who so desperately need help, understanding, and kindness.

  66. HI,

    This letter gave me goose bumps and I will share it far and wide with the link to this site. I have always felt so alone with these same feelings and I was the the adult social outcast because my children were different. At first I was comforted to see I am not alone looking at all the comments then I was saddened to see so many others that have been burdened with this same loss.

    I always say you are only as happy as your saddest child and what that does to a mother is hard to describe. You did a great job to let others have a look into our lives.

    I have a 20 yr old son, who is still as autistic as the day is long and a 19 yr old son, who with help of a team of adults and therapies is off to college and will do wonderfully in life. The less severe child was harder to raise and caused more fighting and heart break. He was the one who needed the understanding.

    I survived breast cancer with a bi-lateral mastectomy a few years back and I believe it was caused by the stress of raising my 3 kiddos with special needs.

    Thanks Marianne for putting my feelings into words.

    Rebecca

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  68. Wow, this post has reached thousands of Parents, Schools, Education Websites and publications as well as educators all over the world. Thank you all for sharing, the best way to educate is to communicate. We will get there, just keep sharing.

  69. This letter certainly hits home!!! I am the mother of 4, with my youngest suffering from cerebral palsy. I was very active in the community, school and our church before having DJ…I sometimes feel now that many exclude me because they know I am BUSY – I wish they would invite and let me decide how busy I am. Having a child with specials needs changes you and your whole family – but not all for the bad. DJ has brought our family closer together. I no longer sweat the small things – like having a spotless house – but instead take great pride in the accomplishments DJ makes – and how much his siblings love him!!!

    • I don’t know how old your child is but congratulations for getting where every special needs parent needs to go, the point of acceptance and confidence.

  70. Jillian Damon

    Reply

    July 23, 2011

    I felt like this was speaking to our family…thank you.

  71. I love this & so true. As a Grammie to a beautiful little boy with special needs I can relate. The world out there needs to take the time & see how special these kids really are.

  72. Marianne,
    This letter speaks for me an so many other parents of a child with special needs. My only daughter has Autism. She is 9 years old and the sweetest little girl you will ever meet. It is a shame how ignorant people can be when she suffers from a meltdown in the grocery store, mall, etc….
    Another Mom with a special needs child started a playgroup in our area and it has been wonderful getting our kids together to play without judgement and parents to share stories, information and to support one another.
    We are making a difference in our community, this week a local water park is re-opening after hours for a “Waterpark fun for Special Needs children”.

    I recommend to anyone with a special needs child to join a similiar type of group “or” create one as they will be surprised on the response they get.
    We have grown from 3 members to 120 in just a few weeks.

    Thank you again and I will definately share your letter with others.

    • That is incredible and so important for these kids. I have also had on Special Playdate they have a fantastic resource here in NYC that arranges playdates for special needs kids something like an online dating service. Good luck to you.

  73. Thank you so much for this article. I wish I could make every person everywhere read it, absorb it, practice it. Please, please, no more judgment. Thank you!!!

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  75. What a beautifully written, heartfelt piece. I would be absolutely honoured if you would drop by my blog and read about the book I’m putting together – I would love a piece from you to contribute. If you know of anyone else who might also like to say something please feel free to share. http://alittlelessalone.blogspot.com/ I know it will take a while to compile enough stories but I’m well underway and have the passion and drive to get this done – so others might feel a little less alone. Thankyou for your time xx Trine

  76. Pain and joy only a mama with a special child can know….beautiful just beautiful.

  77. you moved me with your words.every word rang true for me in this one
    thankyou so much

  78. I really appreciate this blog. It made me cry as I too am a parent of a special need child. This journey has been rough on many levels but ultimately, I honor God for trusting me with my little angel.
    We are expecting Great things in her future. Autism is only a portion of who she is…
    thanks for sharing

  79. so well said , I am a care giver and I see the strain’s and rewards, Family’s have daily. and I do wish that more ” THe of World” could ” see the other side of this wonderful children :

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  81. Even though my son is only 2 years old, you have addressed all of the concerns that already plague the brief sleep I get at night when he manages to sleepss for longer than two hours spurts. I may just have cards printed with this link for everyone I encounter when our journey with school begins! On second thought, I may just print them now and hand them to the grocery cashier, the flight attendant, the elderly lady at church that asks me three times if I realize that he has lost is shoe…

    • Thank you, please do feel free to use this on a card. I used to have cards also it is a great way to educate and not have to put your child in an uncomfortable position.

  82. SO TRUE! I love this, thank you!

  83. You may well ask, why a parent who does not have children with special needs would find this piece so moving? All I do is sell children’s books!

    The point is, I meet far too many friends and customers who are going through exactly what you describe. By that I mean, starting from square one. Despite the millions of parents who have gone before us, no real “path” seems to have been worn for the next. Everyone still has to “push water uphill” everyday.

    I don’t need to have a special child to see that this is the 21st century. We understand more now than we have ever done. We have brilliant folks around the globe with real solutions – right now! What makes me cry tears of frustration? That the education system will still be like this when my little girls have children.

    I just can’t have it (as we say in the UK). Why should it be up to the parent to advocate for their child, educate the ignorant, battle with the system? My goal is to bring everyone together in one spot and DEMAND IT. When the “popular will” becomes the “political will” change will happen.

    I may even burn my bra! Who is with me?

    Lisa Nichols
    The Book Mums, UK

    • LOL Love it. I think things are shifting but the stigma is still there, that is why I do what I do everyday, educate and support – not much more any of us can do.

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  85. Dear Marianne, you have read my mind and delved into my heart. Your article made me cry. It is my life completely. My son Ethan (now 10) has been diagnosed with ODD – oppositional defiant disorder and for most of his school days we have lived as your article. I have now set up SENtense a local support group in the UK for families of special needs kids and we have our own Facebook page too. I came across you articles by chance, they are so moving. I hope you don’t mind that I have put them on our page? Thank you for fighting our cause, it’s nice to know someone else cares. All the best, Yani x

    • Thank you Yani, get in touch with me through TheCoffeeKlatch.com website Id like to hear more about how special needs kids are accommodated there in the UK

  86. Marianne,
    This is SO touching!! I wish there were more people like you in this world! Anyone who reads this will stop next time they’re in a situation with a special needs child – or a parent of children with challenges, act more kind!! We all need to open our eyes and hearts more often! I will be sharing this with many of the families I work with!!

  87. every day i am touched by wonderful stories that make this journey worthwhile.. thank you everyone for sharing.. it made me feel alive again!

  88. I am a teacher and a mom of a special needs child. I will admit I have looked at the special education students differently since Olivia was born. Some people just won’t get it until they live in it. I was oblivious to what a life with a special needs child would be like. But here I am with a two year old that has delays in every way and I love her more than anything. She is very special to me and many others. I really hope she will get treated the way she deserves when she starts school, which is in February. My husband and I will be her advocates along the way!

  89. I will share this wonderful letter on my blog.

    Thank you.

  90. Hey There. I found your blog the use of msn. This is a very neatly written article. I’ll be sure to bookmark it and come back to learn extra of your helpful info. Thank you for the post. I’ll certainly return.

  91. Definitely imagine that which you said. Your favourite justification appeared to be on the internet the easiest factor to take into accout of. I say to you, I definitely get annoyed even as folks think about concerns that they just do not recognize about. You managed to hit the nail upon the highest and also outlined out the whole thing without having side effect , people can take a signal. Will likely be again to get more. Thanks

  92. So beautiful, my son is a baby with severe epilepsy and will have special needs and learning issues as a result. This is indeed the life unexpected and it is excruciatingly painful and difficult on a daily basis but it has huge rewards and beauty and joy none the less. Love and happiness to all x

  93. Thank you everyone.

  94. Wow…this hit home. I have 2 boys with ADHD, OCD and one with autistic tendencies and yes, people who are not in this type of situation would not understand. People stare, make fun and also have the nerve to make comments. People really need to stop being so ignorant and educate themselves and their children to children who are “a little different”…

  95. This is just perfect and expresses everything that my husband and I have felt the last 10 years with our beautiful daughter. Great to find you on Twitter! I look forward to reading more of your great site.

  96. This is such a help to me… I have a 14yr old who hits his younger brothers and sister for no reason yet to him there is a good reason be it ‘they looked at me’ or ‘they said something’. I have just had him looked at to see if he has autism but they say as he is well behaved in school then no even though he is very different at home. My whole family has been bullied both verbally and physically to the point I’ve had windows in my home smashed and I have been both verbally and physically abused by teenage kids on the street over the past 5yrs. My 14yr old son was punched in the eye last October during school for saying something about another kid… I believe my son when he told me his version of the events but because there was three others giving a slightly different version of what was said they were believed and he was suspended for three days.

    My son looks ‘normal’, he is very intelligent but has made a conscious decision to fail his term tests so that he can stay in a lower class as most of the bullies in his year are in the top class.

    As a family we have been through so much over the past 12yrs. My daughter died when she was 6yrs old in 2000, my ex partner was abusive (which I hid and never told anyone about) I had to move with just my children and nothing else, and that’s just the tip of my iceberg…

    Reading this article has given me hope just knowing that someone else in the world writes as if they have lived my life …. Thank you so much, such a comfort just knowing about this….

  97. Very well put! Thank you for advocating for us!!!

  98. Hi my names Kim and I have a 21 year old daughter with aspergers and various other disabilities and a 19 year old son with CB (cerebral palsy). My son is in a wheelchair but my 21 year old daughter gets stared at more than he does because of the way she acts due to her disabilities both are hard work but in different ways but I love them both equally. Thanks for your post its nice to know I’m not alone.

  99. I was suggested this website by way of my cousin. I am now not certain whether this publish is written by him as nobody else recognise such special approximately my trouble. You are incredible! Thank you!

  100. At the risk of sounding overly emotional and corny I need to say that you are my hero!
    Thank you for putting into words what I wish every teacher aand person, in genral, could understand about being a parent to a child with special needs.

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  102. thanks marryan for writing this on behalf of all of us it brought tears to my eyes havnt cried for loooong time now. yes there is pain there is isolation in my live put one thing i m sure about that parenting aspecial need child had made me a better humanbeing because now i know pain and isolation i know worry and fear of the unknown put i also know support,struggle,try and success im more cabable to understand the pain that other people might feel i had became more sensetive and caring person and ilearned to appreciate all kind of peautiful things that life brings from time to time im sure all parents of special need kids appreciate the moments of peace more than any one else would bcause we only have them once in a while!thanks for helping us speak out
    keep up the good work

  103. Thank you from a mom whose adult son is still struggling to overcome great challenges. He works so hard every day, and his effort is often overlooked because sometimes he falls.

  104. My son is 8 with Aspergers Syndrome. I cried when I read this. Feels like you’re talking about us. Thanks for posting. I’m not alone. :)

    • No you are not. Join us as the chinese proverb goes… To know the road ahead ask those coming back.

  105. I just read this and it was exactly the words I spoke today at a school meeting ,I have two children diagnosed with disabilities. Today I am having one of those hopeless days.I was overwhelmed and emotional and lost.I am going to put today behind me and move forward .I amke a living caring for children with special needs that is my passion after 16 years of trying to understand and be compassionate I work hard so other parents do not have to go through it feeling alone. I am the parent and yet some days feel helpless .So thank you for speaking for me and giving me strenghth when I feel conquered.

  106. Georgette Michalkovich

    Reply

    January 20, 2012

    As the mother of a special needs daughter, who is now 40 years old, I can relate to all that you wrote about in this letter. You would think that after 40 years, times would have changed, but I see in your letter all of the things that I and my daughter had to struggle with still exist. Thank you for making people aware of the fact that our children are “special”, but they are also “gifts from God”, and they have “great big hearts”, and we can learn from them, how to love unconditionally!!

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  108. I have noticed that most parents of special needs children are very special themselves; they are caring, intelligent, patient people that I admire. I being a nurse have made home visits for professional reasons and marveled how families and their special needs children function. Often permitting needs of child these children are better mannered, loving and caring. Yes, I want to thank you for your article and I wish you and other special needs families the best. God has chosen you wisely not every family is equip to handle the many situations that I can only imagine that you find yourself in.
    God Bless you and your family
    Susan

  109. Thank you Susan, that is so touching.

  110. I have posted this a second time. First time was last summer. Figure I might reach a few new people. Thank you for expressing what we are thinking and educating the world around us.

  111. I HAVE A VERY SPECIAL LITTLE COUSIN THAT HAS AUTISUM . AND I THINK IT IS VERY UNFAIR THE WAY SCHOOL’S TREAT CHILDREN THAT HAVE A DISABILITY.

  112. This is an excellent post. I teach Technology in a highly specialized autistic strand school. This means I see regular Ed classes, autistic classes, and integrated classes. I have five children at home who do not have special needs, but I constantly tell them stories about all of my students so they can understand these differences and realize how it makes these children special. I have students of all types and I love learning how to engage them and foster their learning. I wish that everyone could see what an amazing (albeit challenging) experience it can be!

  113. My son is Autistic and non-verbal. He’s only three, but reading your post made me realize a lot of the challenges our family will face as he gets older and goes to school. It made me cry. He’s the sweetest, happiest little boy and it’s sad to think about how lonely he may be as an adult. Thank you for this.

    • As I always say, accepting the diagnosis is one thing, accepting the life it will bring is something very different and much more important. Please don’t assume he will be alone and lonely. Fostering his interests will open doors for him and help him find those with similar interests. Yes, your road is long but the rewards will be plenty. Let me know if you need any support along the way and join us on our three new programs on Special Needs Talk Radio that will help you on your journey. Best of luck to you.

  114. Beautifully written! I have a chronically ill child with autism (vaccine injured at 14 mths old and later diagnosed with autism). Thank you so much!

  115. Thank you for this beautifully written letter. Reading this helps me know I’m not alone and validates some of the feelings I have experienced along our journey.

  116. When you have a child who has special needs your role in life changes.
    You could not have predicted the moment when it all changed. But it does and it will.
    Mother expands to become…teacher, advocate, mentor, advocate, director, friend, human rights advocate, medical specialist “in your child” and the list continues. That road you traveled is gone at least for the time being. The love you have for your child is immeasurable. It is this love which sustains us and allows us to put “it all into perspective” especially this precious time we have. Hold your head up high and never look back when the stares are constant. Teach others at every opportunity. Even the ones who are ignorant. It will reap the greatest reward.

  117. beckyjayne popejacobs

    Reply

    February 6, 2012

    WOW you had me @ the first linewe have been in the same war for our 2 little asd andels here in tenn yea the buckleof the bible belt it kills my husband but he is moretimidthan I AM TIGERMOM they will help my children or someone will we have tried and done almost everything but hbot the best is stuff GOD just put in our buggy we have a great love and bond for our kids and each other that NOONE has broken in 6 yrs guess thats good for these days ALIGN probiotics otc and cent .88 yogurts shots @ walmart tried to kroger to sale them melaton. strawberrys for naps hope this helps someone IF I live trough this I will fight for all us tigermoms out here who sufferin silence with our sweet perfect defenseless innocent children GOD BLESSYOU and ny christ give you strength and peace becca

  118. beckyjayne popejacobs

    Reply

    February 6, 2012

    ok

  119. I read your blog with a heavy heart. It could have been written by me, indeed, I wrote several just like it, during all of my son’s school years. Sad thing is, all our hard work didn’t accomplish a thing. He’s now 24 and out in the world. School turned out to be a bitter experience for him and he was encouraged by school personnel to leave school in his Sophomore year and go get his GED instead.

    His entire school career was wrought with complexities of school meetings with teachers, aides, administrators, psychologists, tests, regular Ed teachers wanting him out of their classroom, special Ed teachers wanting him out of school altogether. And all this for a parent who threw her life into the school parent associations – PTA’s, PTO’s, district wide committees, district advisory committees, school board elected positions, state board of education equity committee – knowing full well that schools look down their noses at ‘uninvolved’ parents, but alas, I came to learn there’s a paradox view of involved parents who come apprised of special student rights & responsibilities that make us viewed as adversaries and threats, and we rarely meet in the middle…. Having to fight for an IEP, or a component of same, this should be the first clue that something is not right at your child’s school and you may need to call in some conflict resolution mediators to assist you in coming to terms for some sort of an outcome for your child that appears to resemble an education for your student and not a prison term.

    The real tragedy of my child’s education isn’t that his outcome was that he didn’t receive an education in that facility, hated school, dreaded going every day, got called names by other kids that should have been his peer group, didn’t get to participate in any extracirricular activities like sports that help round out a kids life and prepare them for real world experiences, but instead he got segregated from the main stream day and dealt with in ‘the naughty barn’. No, that wasn’t the real tragedy. The real tragedy was that through it all – from the time he started school in Kindergarten all the way through his Sophomore year before he was ‘encouraged to drop out and get a GED’ (a discussion that should have been brought to me as a parent first, before the seed was planted in his head, where all he could hear was ‘I won’t ever have to deal with this place again the rest of my life’ – through it all, and all the labels & acronyms that schools just love to slap on kids in this diagnosis crazy world, no one, NO ONE, ever suggested we send him for a EEG.

    I was the best advocate for my child there ever was, and indeed, often his only advocate. I spent hour after hour scouring through books and IEP’s and cutting edge educational research trying to find out what was best for my son. His needs changed from year to year and I had to fight his middle school principal for an IEP by the time he entered his Middle school years. School life was easier when he had one, maybe two teachers in his school day, but by the time he was in midde school – a day full of transitions for the ‘untransitionable’, it seemed I was at war from the second we enrolled there. Where was all this resistance coming from in a school concept that is student centered and wrapped with services around the student, a team of educators sharing about your child on a daily basis, sharing vital information, so there are no gaps, no missing holes in their difficult adolescent years? Where was the team, wasn’t I on that team? And why was it I was the only advocate for my child in that entire school, on a team built to insure success for every student? (well….almost every student ).

    Didn’t anyone else in that school see success in my son’s future besides the school custodian, a man he looked up to and often volunteered to help because he saw himself in that custodians world, where they had a shared knowledge there were bad kids at that school – kids my child saw take advantage of their environment that created messes that they knew someone else had to clean up – those same kids were the golden athletes and were allowed to tease and torture and torment my son on a daily basis, without so much as a single reprimand from the administration. Was it really so difficult to understand that not every kid – and especially middle school kids – aren’t all little clones of one another, and certainly, not all kids are athletes and success can and should be encouraged and recognized in a variety of ways in a school community – theres plenty of room at the table of success in a school, and they aren’t all sitting athletes table.

    From the minute the seed was planted that he should drop out in his Sophomore year, get his GED, and get a job, the seed took hold and was steadily growing a tap root, not matter how much weed killer I applied to it. Here was a kid who was being turned out into the world with very little life skills department.. Sure, I had taught him how to cook and clean, and he had plenty of responsibilities at home, but there was so much lacking in his life skills department I didn’t know where to start. He got a job, opened a bank account, I worked & worked with him on how to write checks and balance a bank account – something he just couldn’t grasp without holding his head as of it might explode. Things weren’t going so well. His father, from whom I was divorced, had him dropped from his medical insurance and stopped paying child support because he was no longer officially in school. I was so busy dealing with this fledgling dropout that I didnt have it in me to pursue finding an attorney who could work in a state other than our own, in order to preserve the child support and heath insurance benefits of a this 15 year old child. Sure he was attending his GED classes at the community college, but they were boring; impersonal. He found them just as boring as his high school was – the only difference now was, nobody cared if bothered to show up. The part time job didn’t cover the gas money it took for him to drive to work everyday, so he went looking for better work. Where does a 15 year old kid work a work permit, but without a high school diploma go looking for work that pays more than minimum wage? A factory, that’s where.

    I am one of those people who believes there are no accidents in life. Maybe every second of every minute of his life up to now, even the bad school experience parts, happened just as they did so they would lead him up to this very moment that completely changed everything.

    So, here was Proud son, who was no longer seeking that GED, had landed himself a factory job. A job that paid him more than he’d ever eared at any job is his life, and if you added up the salary, hour for hour, he was even earning more than his college professor step father was earning – if he’d be getting paid for all the hours he actually worked, that is. Fine choice there son, maybe there’s a chance for you to make it on your own yet in this big world. Yet, the strangest thing happened within a couple hours of going in on his very first day.

    I get a phone call at home, from a woman identifying herself as the factory nurse, and she said she had a few questions for me. “Drats”, I think. ‘lT’s starting already, and they are noticing some of the fancy school acronyms – acronyms that keep people out of the work place, and I’m entirely shaken I might say the wrong thing and blow his very first day of work. Then I listen closer and she asked me medical history questions. “here we go again…down the medical history path, where we always start” and I’m certain they are already searching for a reason not to employ this kid, who I’m now certain, has no future…

    Then I listen closer and hear ‘Does Mitchell or anyone in your family have any history of epilepsy? Has he,, to the best of your knowledge, ever had a grand mall seizure? Do you have a hospital preference, because we have called an ambulance and they should be here shortly and we need to know where you would like us to take him.”.

    And there it was, that one second where The Universe all came together and unified it’s theory of Mitchell and everything, I mean everything fit into place. The factory nurse then put my son’s supervisor on the phone and he explained to me exactly what had happened, right before, during and after this seizure occurred. The Ephinany that explained it all. From quirky moments to absence seizures – to grand mall seizures that teachers took as threatening postures to their safety instead of recognizing them for what they were. All those years of school collapsed down into one big miserable failure on the part of every professional that ever worked with my son right before me eyes. Did I feel guilty, that I did not recognize these seizures? Indeed I did. There were times I witnessed him Make tight fists with his hands, moments when some subjects just got too difficult to handle (like balancing a check book) and he just ‘checked out’ on me, or just held his head and shook. There were times like that. But, I have to say, I’m not a professional school anything (except parent), took no schooling in as a school psychologists, teacher, administrator, special Ed teacher, Superintendent. I am none of those things. Why, I ask, didn’t a single one of them, including the early childhood specialty clinics ever perform an EEG on this kid? Wouldn’t that be the FIRST thing you’d do for a kid experiencing some setbacks in his educational process, that were cognitive in nature. Wouldn’t you do this one test, because it’s non invasive and relatively cheap to perform? Why wouldn’t they do that? What went wrong & where?

    As a side note, I need to inject a few more important lines here. By the time Mitchell had his first Grand Mall performance in public, he had no health insurance. (remember, his father had it cancelled, great dad…). He lost the job that where had a grand mall seizure on during his very first day. He went years looking for work, and shared with his potential employers that he had epilepsy (which he needed to do, because by now he was seizing regularly and it was a safety issue.). Employers were reluctant to hire a kid without a high school diploma who might get hurt on the job, so jobs weren’t exactly forthcoming. Jobs he did get, had no health insurance benefits, and by now, he/we were bured in hospital/Dr. Bills. Contrary to popular belief, there isn’t a safety net for the sick in our country. Sure the emergency room saw him, but emergency rooms don’t treat epilepsy long term, and the Hospitals and Doctors, ambulance services, well they, knowing he had no job, turned him over to collections. By the time those collection agencies caught up with him (because we moved twice, and didn’t know these bills existed) selling our home to pay my own heaps of medical bills for long term unresolved medical Issues of my own, his bills had already been turned over to the court for collections and had court fees attached to them. we had no choice but to pay them and hope this doesn’t scar his credit rate so badly that he might some day move out & get a place of his own.

    He did go on & get his GED. He was right – the classes were repetitive and boring, so the GED teacher allowed him to take his tests and he passed them all, first go around. As hard as school was for him all those years, he was paying attention (between seizures) and had a love for learning and curiosity about the world that led him down the path of self education, and it paid off.

    Just last week, he started a new job. He turned 24 thos year & there have been so many jobs all these years. This one – is at the factory right where he had his first publicly acknowledged seizure, when he was 17. They remembered him & knew what happened that day was not his fault and believes in second chances. I’m keeping my fingers crossed for him this time. He desperately wants to earn a living wage & get a place of his own.

    So sorry this comment to your blog is so long. It’s a story that I felt could be of benefit to other parents & maybe they can learn from our mistakes…

  120. That you for the post, I too am one of those people who believes there are no accidents in life. It is hard to understand why a simple test was not done. I wish you and your son the very best.

  121. Thank you, I have just been looking for info about this subject for a long time and yours is the greatest I’ve came upon so far. However, what in regards to the bottom line? Are you certain about the supply?|What i do not realize is in fact how you’re now not actually a lot more smartly-favored than you might be now. You are very intelligent.

  122. neel griffin

    Reply

    March 26, 2012

    I am so suurprised that all of you with special needs kids are going through this on a daily basis! It is common sense that when a so called “normal” looking child acts out there is most likely something more going on. I remember when my daughter was four she looked like she was eight. She had a temper tantrum and one lady actually said to me, “Don’t you think you should teach your child how to behave in public? “. Well at the tme I was mortified, I did not speak back to her because I was astonished that anyone could jump to such a quick conclusion and then have the audacity to say it out loud when I obviously was already dealing with a difficult situation anyway I could go on and on,:) Keep on keeping on parents!:)

  123. This is exactly how I felt. I felt very alone at times. My son received few invitations. Now, he is entering high school. He still has only a few friends, but at least they are keepers. Thanks for sharing.

  124. It’s like the T-Shirt slogans we see about various demanding sports. You know the ones that say something like, “Once you’ve gone one on one wrestling on the mat…everything else is easy.” That’s how I think of my situation with our son with special needs. All the other stuff we deal with with our neurotypical children, pales in comparison to the growth we blossom into with our special needs children. Thank you and God Bless.

  125. very well said thanks for sharing xx

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  130. Thank you for this. It is exactly how I feel raising an Aspie and I will pass it on.

  131. Thank you for taking the time to write this powerful commentary. The description of the lifestyle is spot on. This blog post needs to be distributed in every media format to help people understand and consider walking with compassion.

  132. Saying thank you isn’t enough…our group is just creating the USA organization that exists in other countries for kids diagnosed with Kabuki Syndrome.

    I have been preaching ‘Awareness’ as our vision and reason for existing. This is the perfect answer to what I mean by awareness.

    I have shared this to our Facebook community and with our Board of Directors. I would love to have our Website team and Social Media team link back to this blog if you would permit it.

    My sister is the mother of Olivia, age 6, diagnosed with Kabuki Syndrome…and she is my hero. I could never explain myself well enough to make people understand why…this does it!

    THANK YOU!!!

  133. Thank you to everyone for the kind words….. so much change is in the air……. I think we are finally making a difference for our kids.

  134. I couldn’t refrain from commenting. Perfectly written!

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