autism street

*

I typed something I thought might be poetic.

And then I deleted it all – one letter at a time.

It was a story about a house on Autism Street – I thought a pretty little metaphor might make it easier to say.

It didn’t.

The truth does not always fit into pretty metaphors.

My Brooke’s autism – our family’s autism – is a fact of our lives. It challenges each and every one of us – none more than my baby girl.

We walk a high wire, arms out, heads up. We search for our footing; we fight for our balance. We scan the crowd. We seek compassion. We sniff out pockets of understanding.

We hound the experts; we beg, borrow and steal the tools for our girl to live the fullest life she possibly can. We pray for acceptance. We try our damndest to celebrate what we have the luxury of calling her differences.

It isn’t easy. Not by a long shot.

But our neighbors on Autism Street live vastly different lives.

They live in houses where autism is about survival. Where there are no words. Where connection, engagement, a momentary, fleeting interaction is everything.

Where constant vigilance takes its toll. Where sleep is a precious memory. Where children growing up and growing stronger is terrifying.

Where tempests brew without warning and siblings are versed in self-defense. Where psychotropic drugs are a necessary evil. Where cabinets and pantries are secured behind lock and key. Where seizures are constant. Where skills once mastered vanish with the wind. Where potty training happens – again and again and again.

Where children vanish in the blink of an eye – wandering into the world armed with superhuman coordination, uninhibited by any sense of danger.

When we host a block party here on Autism Street, we’re reminded that our high wire act is really awfully quaint.

*

We need compassion, understanding and the tools to teach our girl to fly.

Our neighbors need HELP.

The need it NOW.

They need answers.

They need services for these kids – for themselves. They need a place to turn. They need a strategy – short-term, long-term, the distant future. They need a break.

Too many of them are living under siege.

*

To those of you who read Diary without a further connection to autism, I am grateful. I beg you though, please, please always remember as you read …

Our autism is just one house on the block, not remotely representative of its neighbors.

Our friends need help.

And by God they need it now.

99 thoughts on “autism street

  1. I used to work with a young man whose family literally had to build him a padded “cell” to keep him safe at night. I had forgotten about them and the reminder is appreciated. Sometimes what we struggle with just isn’t so bad.

  2. That does put Autism Street into perspective. This post was incredibly touching, Jess. I hope and pray that all will get the help they need to make their world a better place.

    Love you,
    Mom

  3. people have told me in the past that “we have it easy, at least your kid is verbal”. I’ve even had someone tell me “your son has the cool autism”….

    M. has Asperger’s Syndrome/ADHD and is riddled w.anxiety….we have an autism home that struggles EVERY DAY.
    M. is explosive, impulsive and we walk on eggshells every moment of every day. There is nothing cool about what we go through, and no one lives our experience.

    Thank you Jess for calling Autism St to everyone’s attention…

    • Sharon I have been in that same boat! My daughter also has Asperger’s with sever Anxiety disorder and a minor tick disorder. And I have had other mom’s tell me that my daughter “has the easiest autism of all”. I think some parents on Autism Street need to realize it’s not easy in any of our homes and need to support each other not throw judgement! I wish this blog could be posted to EVERY person that has to deal with an autistic loved one’s e-mail!!

      Thank you Jess for bloggin the truth and helping us all realize we are not alone in this path!!!

      • We are in the same boat with the “easy” type of autism. No type of autism is easy. Each type has its own challanges. All of us who live on Autism Street nee to remember that no house is the same and we all have our difficulties. We all struggle to find our children in the mist of the disorder. My son speaks, which makes it worse when he goes weeks refussing to speak. It is dfficult to lose something that you had… Thank you for the blog, it was very touching and very truthful.

      • I’m with you both. My son is an aspy and has severe anxiety. I also have another son with more severe autism. We are really struggling. We live in an area with very limited resourcses and feel very alone. It’s a comfort to me to come here and see that, in fact, I’m not alone. I wish I could wipe this disorder away and have my sons (and everyone with autism) mentally and physically healthy.

    • Sharon I don’t think there are any easy types of autism & I’m horrified that you’ve been told that! My little boy has very limited language (all of it needs driven or echolalia) and very limited interaction. He is the happiest little boy in the world and is totally unaware that he is different in any way. My heart breaks for you having to see your child so anxious and with so much anger. Our daily struggles might be very different but if WE can’t understand each others issues how can we expect understanding and compassion from the rest of the world?

    • I so agree – if my son has the “cool autism” then maybe I want to exchange it for the ‘un-cool” variety.
      Being almost ‘normal’ and being very painfully aware of it as you cannot reach “normal”, is so painful to watch, to experience, god forbid ‘to live it’ .

      I cannot express the daily struggles my son feels, especially at the already confusing age of 12 yrs old. I cannot make his ‘monster’s’ go away. I can only do my best to help his comprehend how the world works; ironically, many of us ‘normal’ people feel confused as well.

      Unfortunately, my son lives with his brother who has RAD (reactive attachment disorder). His brother torments his brother. He does not care.

      I am one of many family members, who take on the responsibly of their raising their bio children’s children – before knowledge of their disadvantage. Yes, my grandchildren. I have been deprived the time honored right of being a grandmother. I am their mom – I cannot be their comforting grandmother. This makes me angry as it could have been avoided.

      Likely, the Autism could not have been avoided, but the RAD most certainly could have been negated. Where one child is in need of multiple services, the other is a thorn in both our sides – because his mother, my daughter chose to be a an absent parent to him. Now who is paying the consequences – my Aspie and me, that’s who.

      Instead of embracing my Aspie’s uniqueness, he is taunted even in his own home – where it should be safe.

      I am an upset parent, with no where to turn – ” things aren’t that bad – you don’t need services, etc”

      I am not alone with this dilemma – I was made a ‘Grandma’ at the age of 39!! forgive me, as a single parent while I vent – LOUDLY!!

  4. Though, as you’ve said, our challenges are still painful, heart breaking and huge for us to face…we are lucky. I have friends with kids so much more severe. Who need drugs just so they don’t hit themselves in the face constantly. This poor mom can’t sleep at night for fears one of her TWO boys with Autism will wander out of the house at night. Another friend who’s son is non verbal, and stims so bad that it’s to the point he could hurt himself.
    Parents who have no hope their child will ever be independent or productive. The parents who fight for the services and help they and their children so desperately need and deserve. Answers we all need. I have FEAR…but there is at least *hope* underneath it.
    Thank you for reminding ALL of us Jess. Well said and spoken as always. Advocate for ALL the children. And pray for them and their families. Some times we need things put in perspective. It’s such a broad umbrella to be under, and the Spectrum is so vast- it’s almost impossible to compare. Any one living on Autism Street has a devastating and heavy load to bare. Each house with it’s own unique set of challenges. Let’s remember to remain a community through it all.

  5. I struggle with this all the time…feeling bad for getting frustrated or complaining when I know that others have much more difficult experiences than mine. As Sharon said, our ASD/ADHD/ODD child is bright, articulate, and independent, but not easy. A “normal” day in our house is a difficult day. Yet here on Autism St., we recognize that every one of our neighbors has their own challenges and victories. Thanks Jess, for sharing yours and for letting us know that we do have neighbors who understand our struggles and joys.

  6. Eloquently written as usual….. thanks for the reminder that we are all neighbors in a community. We may not all share the same story, but we all need each other’s help, support and understanding. I pray for all of those effected everyday.

  7. One of the many things I love about you is your ability to ALWAYS hold all of our kids in your heart and to share reminders of the different struggles and triumphs. Thank you. If we had a neighborhood watch committee, I’d totally nominate you to be the leader! 🙂 xo

  8. Your writing is is more powerful than words alone. We don’t know it as our life, but please know that as compassionate people… We care. And so, my hope is that the mothers of the children who do not speak, the siblings of those who act out physically and the fathers of the men who will never live on their own… I hope they know we love their children too. Just like we love the little ones who visit our swingsets in our own neighborhoods. We care. And we Believe that there is hope… In finding answers, and in teaching the world to embrace the children, families and adults living with autism. {And in the meantime, we will take care of the ignorant neighbors who stare, the mean kids who cause trouble and the unknowing parents who pass judgement. With any luck, we will get to them before you run into them in the supermarket. -Benefit of the doubt, They have no idea AND no manners. So, Please know that they drive the rest of us (outside the autistic community) crazy too.) In the meantime, keep writing. Continue to share your stories. Educate. Advocate. Exhaust yourself at all costs to make this world a better place. It’s so worth it 😉 xo

  9. Thank you for saying this. It’s not an exaggeration. We are out here. We love our babies. But we are living the sort of lives that make people uncomfortable to think about. It’s hard to reach out for help. Thank you, Jess for that big heart of yours.. Reminding everyone we are here.

  10. I am someone who has to lock the pantry and who is very scared I will have to school the whole family in self defense as the years to go by. Or at least my poor son who is often the recipient of his sister’s rages. It can be very lonely, too.

  11. Amen – beautifully said. We can’t really compare our own autism experience with others – it’s apples and oranges. Generically we’re under the same umbrella term of autism, but the spectrum is so vast, comparisons don’t mean much at all. I know our son has “mild” autism (Aspergers), but that doesn’t make life in our home easy by any stretch of the imagination. I’m grateful his autism needs are less severe than many other people with autism, but I have no illusions about the hurdles we’ll face as he grows up. I live on Autism Street. We’re a diverse bunch of neighbors. Take a walk and stop to talk once in a while; we can learn from each other, and share our hard-earned knowledge, victories and tears.

    • We’re a diverse bunch of neighbors. Take a walk and stop to talk once in a while; we can learn from each other, and share our hard-earned knowledge, victories and tears.

      Amen

  12. For those of us with Aspergers children, this really lets us know how easy we actually have it. I mean we deal with some day to day issues, but there are those out there who would KILL to switch diagnoses with us. As I try to educate others, I try to keep in mind that our house is relatively “quiet” and there are so many out there who desperately need help. Prayers out to those homes! We support you!

    • There is nothing “easy” about my son’s Asperger’s diagnosis. Please, please, do not say that Asperger’s children have it easy.
      Every day is a challenge w.my Aspie/ADHD/anxiety riddled son. Every day.
      Asperger’s children do NOT have it easy…..

      • Just another example of why we can never, ever generalize. Why one word (in this case Asperger’s) is not enough to describe a life. Why it’s up to us to show the world that ALL of these various diagnoses are just words – that each of them houses myriad and dramatically varied experiences.

        Keep telling your stories, ladies. Every chance you get.

    • Aspbergers is NOT easy or relatively quiet. Sorry, but this just really upset me. My 14 year old is going thru the awkward teen stage if trying to fit in with his peers, and finding his footing, all with the added challenge of Asbergers and being bipolar. We keep meds in a safe, watch for the ticks that give clues of an impending melt downs, and have consoled his brother too many times when he’s the unlucky target of his bothers swear word filled verbal ticks. Nope, nothing easy here about my Aspie. I understand if my reply is deleted, I just had to say something as our house belongs on this street as much as anyone else. I don’t look at the other homes and think I have it easy, I see them and am grateful there are other homes who understand.

      • As I said to another commenter, I’m not here to whitewash. As long as comments are respectful, they stand.

        Like Sharon’s comment above, I think this conversation amplifies the need to avoid generalizations when we speak about our kids.

        I have zero doubt that Mary meant absolutely no harm with her words – quite the contrary. But landmines are everywhere and can be tough to avoid given how widely varied our experiences are – even under the same label.

        We can all take so much of this with us as we interact with each other – and the world at large – moving forward.

        Thank you all for adding your perspective to the conversation.

  13. Thank you Jess. All the houses on Autism Street are so very different. This is an awareness level that the general public does not have. This post makes me angry too, because it’s another reminder of how HARD this is for those on the street, and that we are so severely lackig in resources and respite and a PLAN for how to help each other. I hope this post is spread far and wide, for those in the muck of autism to realize they are not alone on the street, and for those who live one street over to remember that we are here, and we need help. 9

  14. Thank you Jess, Laurel, and everyone else that has posted for your beautiful words. I too live on Autism Street. Most days I am thankful that my son has Asperger’s (aka a mild form of autism) and is verbal. Other days I hate autism sooo much I could scream. I hate it for all the struggles he has – we his family have – and the struggles of the other kids with autism and their families. No one chooses to live on Autism Street and in spite of the joys our kids give us, I think we would all like to move away.

    Sorry for the negavitity but it’s been one of those days. Jess, if you decide to delete my post, I will understand and won’t be offended.

    • Jess, if you decide to delete my post, I will understand and won’t be offended.

      I wouldn’t dream of it.

      Autism is messy. These days exist. I’m not here to whitewash a thing.

      I hope today is a better day.

  15. No matter where you live on this street…life is difficult. It’s not the dream that you have for your family. The worry is constant…the anxiety is palpable. The eggshells are fragile and can break at any moment. Peace is a precious commodity that you feel entitled to, but you don’t always get. Thank you for your open heart and for writing this beautiful piece. Hugs Mama…

  16. The isolation endured by families engaged in constant siege mode is both exhausting, and devastating. Thank you for reminding all of us who dwell in the “land of differences” not to forget those of us who are not so fortunate. Beautifully written!

  17. You have inspired me Jess. I opened your blog this morning needing a boost after a difficult weekend. I was feeling broken and needy. And your post reminded me that many Moms dream of two high functioning children. So rather than wallowing in the fact that talking two ASD children to the park alone is exhausting and almost impossible, and thinking I need respite, am going to GIVE respite if it is possible. I have many evenings where my totally capable and loving husband could care for our two; there are many Moms in challenging situations that deserve a break. Thank you for inspiring me – no better way to beat a funk.

  18. I have friends with Autism, and my son suffers from a Traumatic Brain Injury (TBI). Although different in may ways, the similarities can be surprising….the lack of acceptance and understanding, the lack of support and compassion, the wanting our children to have friends, be loved, and “fit in”…..I read Diary everyday….thank you for sharing

    • Although different in may ways, the similarities can be surprising….the lack of acceptance and understanding, the lack of support and compassion, the wanting our children to have friends, be loved, and “fit in”

      you know, i think in the grand scheme of things, these are universal truths of parenting ANY child – and for a child with special needs, no matter what they may be, they are magnified.

      thank you for coming to the block party. all are always welcome here 🙂

  19. I am a neighbor who lives on Autism Street. We have a 14 year old “high functioning autism” teen and a 4 year old who is on the same path. My heart and prayers go out to all my friends on this path. However autism is impacting a family it is challenging on the best days. Sometimes I feel so isolated and alone because so many people not on this street don’t get it. Trying to educate them in addition to parenting these kids is so exhausting. Even educating family members – explaining it and getting them to understanding it are so different from LIVING it. But we press on. Thank goodness for this diary – it has inspired me and moved my mindset into a better place.

    • Even educating family members – explaining it and getting them to understanding it are so different from LIVING it.

      lord ain’t that the truth.

      (and thank you)

  20. I am always grateful that our autism isn’t is bad as it could be. I am blessed and remember it daily that my child is affectionate. I pray for those like us and those left fortunate. Help is needed.

  21. Yes. Through desperate, frustrated, weary tears, YES. Thank you so much, Jess. We are all so different with so many needs, but a few are universal… love, understanding, patience to name a few. So eloquently stated. Thank you a thousand times for advocating for this little, five member family in Texas you haven’t even met in a town you’ve never heard of. THANK YOU! ❤

  22. Wow, Jess, another wonderfully thought-provoking post. I usually read Diary first thing in the morning, and I often carry it with me through the day.

    This one made me think again about how troubling it is to think in binaries–good/ bad, black/white– or even along a spectrum of “better” to “worse.” In this case, as in so many others, it’s so hard so know what’s better, and what’s worse. Who has it harder, and who has it easier. Some children face many more challenges than others, but some families have more challenges than others unrelated to Autism (unemployment, deployment, divorce, ill grandparents, no grandparents, it goes on and on). Some of the privileges and some of the difficulties are more visible than others, but we can’t assume we know what they are.

    I have to think that there are just lots of differences, and we should be compassionate and open to helping all the families on this street. We all love our kids and we all struggle to do our best for them.

    Thanks again for this blog.

    • I have to think that there are just lots of differences, and we should be compassionate and open to helping all the families on this street. We all love our kids and we all struggle to do our best for them.

      that’s it, isn’t it? so simple in the end.

      thank you.

  23. I recently had an encounter with a mother and her 9 year old son at the doctor’s office. He was on the spectrum and she had to protect us from his enthusiasm. Too much to mention here, b/c I’m really bad at short-handing things I find important. When we left her, I thought very hard about what their options would be as he got older and stronger. And I began to truly appreciate my son’s place on the spectrum.

    I can’t say I will never feel sorry for myself again. But every single time I do, I will consider every other person on the spectrum, also.

    Very very humbling

  24. I often think of our kids as snowflakes. No two are the same yet they are all on the spectrum. I find it hard when someone says that our daughter must be “mild” or on “the higher side”. Yes some days are easier than other but I often wonder if are easier days are that because we are better prepared, less tired parents those days. I often think in my head if we never had to leave the house our life would be golden but we do.

  25. yes, yes, yes. thank you for this.
    you faithfully love, celebrate and fight for all of us on Autism Street. love.

  26. Pingback: autism street « a diary of a mom | My Autism Site | All About Autism

  27. Pingback: Well written blog by a Mom about life on "Autism Street" https://adiaryofamom.wordpress.com/2011/08/08/autism-street/ | My Autism Site | All About Autism

  28. Here’s the thing, which Karin articulated so well, we ALL have different challenges. So,please, let’s not compare our “degrees of suffering” with one another. Tough as many days are, there are ways in which my seemingly severely impacted son is NOT as deeply affected as some other “higher functioning” people. There are stories I hear from moms of other children that make me grateful I’m not in their shoes. Every one of our families has challenges and copes in myriad ways. Let’s honor them all and find ways to lift each other up, light the path when it feels dark or scary, and celebrate the joys of loving our children instead of comparing.

  29. So glad you didn’t delete it once again. This word picture of Autism Street is very helpful to me. For so long I was in denial that we lived here, and when I finally accepted it for myself, others didn’t because our issues are ‘high functioning’.
    I finally find someone’s story that sounds like our own, and they shut me out. Another day I will read their story and ACHE for them, powerless to help. I may only know a small percentage of their pain, but it is the same pain. Loving these thoughts from the Autism St. Block Party! Thank you for welcoming all to this street.

  30. I love this post Jess. And you know I have never once wished Boy Wonder was HFA or Aspergers. I’ve wished no child had autism. No matter how lightly touched or deeply affected it still creates difficulties and challenges none of us ever imagined when that pregnancy test came up positive.

  31. This was such a wonderful, thought provoking post.
    Does anyone else go for days without ever seeing their neighbors? That’s how I feel lately – so much so that my daughter doesn’t want to leave the house, it’s just too difficult for her. As much as I love the encouragement and acceptance of this neighborhood, there are still days when I wish I could put my house on the market…..

  32. I just wanted to express what a few others have, no matter where your child falls on the spectrum, no matter where your “house” is on autism street, life on this street is never easy. Each of our children have their own abilities and disabilities that make life challenging. I live in a “duplex” on autism street (both of my children have one form or another of autism). Being verbal doesn’t make the challenges of raising them any easier, just different. No melt down is “mild” or “Easy”. Just having Aspergers or high functioning autism doesn’t guarantee an independent life for them when they grow up. We all need to stick together to fight for a place for our children in the world. In-fighting over who has it worse doesn’t achieve that goal. Only a united front demanding awareness, understanding and acceptance will achieve that and to do it we have to first become aware of all the residents on autism street, learn to understand other residents on autism street’s challenges, and accept that all of our children do live here and accept their families as our neighbors & fellow soldiers here in the trenches.

  33. Yes. You’re not alone. We’re in a very small town in the country, and don’t really leave the house unless it’s one of the places we have to go. There’s a support group, but it’s an hour away and meets once a month (and we have yet to learn of the meeting until it’s the day after). We don’t see our physical neighbors, much less (in person) anyone on Autism St. I get so lonely, but when I go out, I get my feeling hurt just about every time and it’s hard on our boy. THe babies (3 yrs and 18 mos) are great, it’s easy for them. Severely autistic big bro, 6, likes to go out but stims, wanders, bolts at times, and therefore usually it’s me who wants to stay in and shut the curtains. I’m inexplicably thankful that I’m home, though the money is crazy tight, but the drawback is being the family that everyone just says “is hard to get to know” meaning they just can’t stomach us. *sigh* We gotta stick together, neighbors. ❤ Like so many have said, it's matters not where our kiddos are on the spectrum. It's all hard in its unique way. Thank you for being here!!! 🙂

  34. thank you for your eloquent words. we are just moving in on Autism street and I do realize the much more serious struggles our neighbors face. In fact I know our physical neighbors have doubted our families struggles for years because they seem so mild, but my daughter has some good coping strategies and most often her anxiety and communication issues surface where she is most comfortable – our home.
    Thanks for sharing – it’s good to know I am not living here alone.
    JC

  35. I have a 13 year old autistic son and not many around here understand autism not many kids in thisneighborhood with it and i can 100% related to what the mother in the above story says completely

  36. I live on Autism St. The Verbal one. But like my pastor says: New Levels New Devils. Granted I am truly lucky to have a super verbal child. My struggles are mainly in retraining him into tolerating the sensory piece, which drives him wild or being able to let family members interact with him without him saying something a little too direct that can hurt someone. I remind myself when I run into a friend whose son has “deeper” struggles than mine and I am thankful at the very least JAM gives me clues by expressing jists of what he is not feeling, from then on I can be detective mom, teacher mom and help him discover a way to get around these struggles he is having. The main issue I do have is doing it all alone, as his dad is not involved in this process. He sees him regularly, but to him there is no autism. Dunno what his deal is with that. Having been by my sons side since he was diagnosed early on at age 2, seeing him struggle in speech classes, being with him thru all the work that has brought him to verbal stage, including the homeopathic treatment, its rather insulting to have someone diss all that work as nothing. Anyhow, everyone has their own levels they are dealing with. I do feel slightly sad when someone dismisses our autism not being as bad as theirs. I am dealing with the aftermaths of it in a different way from you, that is all.

  37. This is wonderfully written. As a grizzled veteran of a severely autistic daughter, I have seen so much. It hasn’t gotten any easier over the years, but I guess I have learned not to expect too much. My daughter is never going to be able to live an independent life. I must confess that at times I have had “Aspie envy”, but I do truly understand that autism street is a hard, tough neighborhood, no matter what your address is.

  38. as a single mother with 5 and 6 yr old boys, both on the high functioning spectrum, every day is more and more difficult….this post gave me HOPE…this past week has been hard and its nice to know that there are people out there who can identify….my friends and family can only listen to so much of my LONG days with the boys before they stop calling me for a few days in hope that if they dont call, things will get better….but they dont:( i just wish more people were more informed…thank you so much for this!! it is exactly what i needed to read today:)

  39. As always, you know how to put my thoughts into words in a way I could never imagine. After all the advocating we all do, the fact that autism is so different in each of our kids, it makes it more difficult for people to “get it”. Its hard for us to grasp, much much harder for those not touched by it in a daily basis. Education and awareness can come from us, but I think we need to pray to God for acceptance and understanding, because that can only come from the inside. When that happens, then all the help these families need will overflow, hopefully.

  40. I too live on Autism street. My granddaughter was diagnosed with PDD at age 3. Later she was diagnosed with Aspbergers. She lives with me and for the most part she is a relatively quiet child. Through trial and error we have learned what makes her tick so we do the things that make our lives (and hers) easier. She has longed to have friends but just couldnt figure out how to keep them. When she was 13 she found friends in her mind (thus developing Schizophrenia) It was a very hard 2 years a there didnt seem to be any drugs that would control it. She spent 10 months in a residential facility while they tried to find a treatment for her. God sent her first psychiatrist my way and I asked her to treat her. Today her schizophrenia is under control. Even though she lost 2 years of her life. Thanks to a good special ed team at her High School this coming up year she will be taking all regular courses at school and will be able to graduate with an academic diploma on time. Yes our neighbors on Autism street doesnt have an easy life but I assure it is a blessed life. Thank you Jess for your writing.

  41. its the first time i have seen the diary, and yes its hard my son is at the lower spectrum, but my grandson is at the high level of autism, he is 5 my son 18. so i have been some help to my daughter, and help as much as i am able to, my son does not socialise with anyone outside of the family, but he is getting so much better at doing things, with a (little push) from me, i praise him when he does something brilliant,,and tell him i am sorry on the occasions i shout, and then say i love him,,i do this everytime and he says he knows i care, and i love his laughter which isnt all the time, but he is my son and i dont know any different way of or would change anything on how he has grown up. thank you for letting me witter on,

  42. I think no matter what typy of Autism children have there are problems with for all. My grandson who will be 7 in Sept., has autism and I watch him everyday. I have learned to deal most of the time. There are times I feel like I’m going to lose it, but than I look at his face and my heart melts and I remember its not his fault. He thinks he is just like all of the other kids in the world, but they sometimes think differently. Would it be nice to live on Autism Street, it would be wonderful. All the help we could give each other would be wonderful, the understanding each child would have for each other would be great also. But we don’t and I have gotten tired of explaining my grandson actions to other people. He is who he is and I love him more and more eachday for who he is. He has made me understand and accept more in life, than I ever thought I could. Each day I hope and pray there will be a cure for autism, but until that happens, Love and understanding is all we can give the children.

  43. Wow…so glad i saw this! i am having a sad day, feeling alone shut inside..i can relate to the post about me being the one not wanting to leave the house…my daughter loves to go places but its hard…she will grab food off strangers plates @ restraunts, grab things off shelves @ stores, touch strangers (the looks i get uggg) somedays i just dont feel up to it and i feel guilty because im depriving her 😦 autism street – tough to live here, but it is where true love lives!

  44. As the mother of an Aspergian, I often find myself stressed. However, I quickly try to remind myself that it could be much worse. Of all the forms of autism for us to face, this one is a blessing compared to many others. My son and I often find ourselves spreading autism information to others and being grateful we can speak for ourselves.

  45. This is the greatest thing that you or anyone else for that matter has ever written. Thank you so much for putting our story into words so perfectly. We are indeed under siege, and it floors me that someone gets that.

  46. As a mother of a child with autism, I know all to well of how difficult each day can be,mind you we have good days as well. One of the hardest things for me is when we go out and people start to stare when my son has a melt down, I try not to loose it and go off on them. I have gotten better at letting people know about how autism affects my little boy. I now that by talking to people that have no clue of what autism is, I have helped one more person understand and not to judge. I would go above and beyond for my son. Thank you everyone for you words of encouragement you have no idea how much this helps me to get by everyday.

  47. Today is a glorious day and one I will remember forever. *sniffle* My 13yr beautiful daughter is babysitting a 6yr old Aspie girl, without me quietly sitting in the background. This little girl reminds me so much of “M” at her age. This little girl’s mom is so grateful to have found a sitter that truly understands her precious daughter, enjoys being with her and can help her navigate her world. My 13 yr has come a long way. Thank you to the Autism conferences, speakers, books written, and moms who write blogs and share their thoughts. We are not alone. Our children are amazing and can do amazing things …… on their time not our time. My daughter has made me a better person.
    And now I have a 2yr old with Autism whom I have adopted.

    ~ Happy mom of 5

  48. Our home here on Autism St. is filled with love , flexibility , understanding & battle gear – as needed. Alas it is also riddled with emotion , anxiety , stress & obsessions. Our AS son continues to teach us about flexibility , patience & kindness . Though we may physically move will forever be on Autism St.and continue this wild journey – together.

  49. We’re just entering a destructive knock over all of the furniture phase with our 2 year old twins who have autism and it is maddening. Every room is bare. Every surface bare. Everything is in storage it’s like we don’t even live here. But it will pass. Right? It has to pass. Someday.

  50. Autism Street is a neighborhood like any other. What goes on behind closed doors is never what it seems and we can never assume to understand exactly what each neighbor is living.

    Regardless, it IS a community. And we can share that cup of sugar when our neighbor is plumb out. We can extend a hand, lend an ear or pour a cup of coffee for the neighbor who looks like they could use it. We can share our own experiences without prejudice. We can open our hearts and minds to accept that one neighbor’s leaky faucet can be just as overwhelming as another’s leaky roof. On Autism Street, we really cannot weigh each household’s value on a scale or spectrum of challenges. It is hard. Period.

    Neighborhoods are living, breathing hubs. Even on Autism Street people move in, people move out. Sometimes we make lifelong friends out of neighbors while some we choose to avoid or perhaps oblige with an occasional wave at the mailbox.

    But if my house was on fire, I surely would like to think it wouldn’t matter where my child was on the spectrum – I had better see whomever is capable on line in the bucket brigade. I think that is what Jess is pointing out. When our own home is burning down around us, we need the effort of all to save us. Likewise, when a family living on Autism Street is under siege, we have an obligation to do our part to save them – whatever that is, in whatever capacity we can.

    That is community. That is Autism Street.

    Thank you, Jess.

  51. One sentence has me in tears…under seage. You have nailed it. Our Autism has 5 soon to be 6 years old. He is nonverbal and severe on the spectrum. We don’t go anywhere and most of family and friends don’t understand and are MIA. I’m fighting my own health battle with chronic pain and our older son has a milder form of Autism. Our house is the one under siege on this street. Answers would be nice, but a little of acceptance goes a long way.

  52. The first person who thinks any part of the autism spectrum is easy really doesn’t understand autism. I have two sons on the spectrum and I do count my blessings that both are verbal and at the higher functioning area of the spectrum. But the challenge at this point is my boys look neurotypical because they can make eye contact and can carry on conversations (sometimes), so people think they are neurotypical and judge them to be rude and oppositional instead of autistic. School starts next week so I’m meeting with administrators and teachers this week, outside of Open House, so we can discuss my son’s needs and they know what is walking into the building this year. I’m also taking my daughters in for evaluations at the advice of my sons’ developmental pediatrician. We may well have 5 kids on the spectrum and no, none of this is easy.

  53. Low autism…high autism….we all struggle with stress and in my case – live in both worlds. I have twins sons with Autism. One’s an Aspi w/ adhd,seizures and the other low autism,mild CP,seizures. I love how “autism street” really puts things into perspective and I will definitely forward this to all my relatives. My life is filled with so much stress but I challenge that stress everyday and it makes me a better person! I see the struggles my son have and I wish I could take there place. They have brought so much joy to our family and wouldn’t change anything about them! They are god’s angels!!!

  54. We definitely live here on autism st. Our house is the one with all the broken windows, 6ft tall fence around the yard with loud, strange noises comming from it. Our son is 11 and severely autistic. He doesn’t speak, though he jibbers all the time. He’s very aggressive and freakishly strong. We have pad locks on all of our doors so he doesn’t escape and get hurt. We also have to lock him in his room at night for everybody’s safety. We are missing many cupboard doors (because he’s ripped them off the hinges) have many holes in the walls and so on and so on. We live in a constant state of chaos. He also has a sweet side to him though and can be very loving at times. There is no “cool” or “easy” kind of autism out there. Every one of us who has to live with this goes through terrible heartache and pain. I hope and pray that somebody, someday, finds a cure for this horrible disorder, I wouldn’t wish this on anybody! Stay strong all you parents out there, you’re not alone!

  55. Life for our Autistic family has gotten easier in the past 13 years… But I cannot decide if this is because my son is progressing or if the rest of the family has just fallen into a kind of acceptance of the constant chaos of it all.

    I am very aware of the differences between our family and others. But really- don’t all families have their own personal challenges??

  56. When I got to the line about too many of us living under seige, I broke down. It has been a long summer and I am battle weary. I liked how Jan put it ‘grizzled veteran’, because I am one too. We have been under seige for the last 6 of our daughters 17 years. Our house on autism street is filled with screams almost every day, bloody lips and bruised eyes. I very rarely get out of the house. The isolation leads to depression and hoplessness. My son, who is PDD-NOS/ADHD has a loft bed so he can get out of her reach when she attacks. My husband works 70 hours a week because only one of us can work at a time. When I worked and he stayed home, he ended up spending two weeks in a psychiatric hospital on suicide watch. I wait for the start of school for a break, but dread the day she turns 21 because I know that I will be completely on my own then. Still I refuse to give up, no one will ever love my precious girl as much as I do, or care for her as well. Jess, I so appreciate that you wrote the truth about how hard it is. People with ‘typical’ families don’t want to hear the unpleasant reality we live with. To those on the other end of the spectrum: I know you face difficulties and challenges I do not. And yet, sometimes I envy you. Forgive me.

    • Oh, Janet, this breaks my heart. i so hope you’ll read tanya’s comment below. i could not possibly have said it better.

      “‘And yet, sometimes I envy you’ – raw honesty, completely human and understandable. In my earlier years of isolation, I certainly felt that way. Nothing to forgive, Janet. For some of us, things got better with years of intensive therapy, but we remember those hard, painful days and just want to hold you up, carry you through with loving thoughts.”

      I wish there were something tangible I could offer over the ether that would somehow make this better. All I have is prayer, love and this:

      We will not stop fighting – for answers, for understanding, for help. For you, for your girl, for her brother. We’re in this together.

      Jess

  57. Such an insightful post, Jess. In addition to learning from your writing, I’ve especially benefited from coming in late and reading the comments, such as Janet’s. “And yet, sometimes I envy you” – raw honesty, completely human and understandable. In my earlier years of isolation, I certainly felt that way. Nothing to forgive, Janet. For some of us, things got better with years of intensive therapy, but we remember those hard, painful days and just want to hold you up, carry you through with loving thoughts.

  58. I keep trying to post this on my Facebook page & it won’t let me. I’ve tried a dozen or more captchas & don’t know what I’m doing wrong. I’ve even tried the audio captchas & can’t understand a word.

  59. Pingback: Bridge Over Troubled Water « Try Defying Gravity

  60. I work on an inpatient unit for children with developmental disorders (most often some form of autism) and severe behavioral disorders which present as self injury, severe aggression, or property destruction. I often read your post and think of all the children I have worked with over the past two years and think “this doesn’t describe any form of autism I have yet encountered”. Which is not to discredit your experience at all. I know you have your struggles, it comes with the territory. As you said though its by no means representative of the entire population. Many parents have very different struggles and concerns with their children. In the midst of your journey thank you for recognizing the families who live in fear of their child and who do everything in their power just to make it through one more day with autism.

  61. I don’t want to minimize the struggles and difficulties that so many parents have with whatever variant of autism we’re all dealing with here, and I certainly echo the need for more help for those out there who are dealing with incredibly serious situations.

    That being said, I always think it’s a little helpful to step back and be thankful for the fact that our kids were born today – when there is some level of help and a lot more understanding and a lot of interest by a lot of people in trying to help these kids – as opposed to just 30 years ago, when “cold” mothers were blamed for autism, when kids with serious issues were institutionalized and kids who were higher-functioning were routinely labeled as “freaks and geeks” and bullied without consequences. I’m thankful for the advocacy of groups like Autism Speaks and ASAN and all the individuals with blogs and who write letters to the editor of their newspapers who speak up for our kids. I’m thankful for the teachers and therapists and administrators at schools who recognized the challenges these kids have and want to find a better way for them. I’m even thankful for IEPs!

    I don’t want to sound like a Pollyanna here, and I do recognize that many parents are facing a situation that looks very dark at times and may appear hopeless on a personal level. I wish I had better solutions or words that would help those folks, but at the same time, I truly feel like as a society we’re turning a corner on autism. No, we’re not close to a “cure” – whatever that means, but we are close to having autism taken seriously, not just by psychologists and medical professionals, but by everyday people. That’s a huge, huge step forward and one that is absolutely vital before any longer-term solutions can be found. If my son had been diagnosed 30 years ago, I would have felt like a prison chain had been attached to my hip. Now, despite all the challenges, I see hope in his future, and that’s an amazing thing.

  62. Beautiful!! Even “high-functioning” autism is a challenge and a half. More awareness does not always indicate a smooth path, does it! Sometimes I thought my kids would have had an easier time if they were less able to navigate society, cuz then they might not get so hurt when they don’t understand social stuff…But, as parents, we have every right to be proud as can be of whatever outr kids can accomplish. It’s a journey, alright, and I think we all make pretty darn good neighbors on Autism Street.

  63. Thank you for your writing. Thank you for putting it all out there for us to read. I thank God everyday for my children. I pray for those that deal with so much more than I do. Or who may be going through what we have already been through.

  64. Pingback: The Responsibility of Representation | Walkin' on the edge

  65. Another post I desperately needed to read — as much for the comments as anything else. Having it “easy” is such a misunderstanding. As different as the paint colors I’ve chosen for my house are from any other house, my/our experience on the spectrum has been unique. My daughter is extremely high functioning which made getting any answers to our daily struggles piecemeal and incomplete. It was only when she hit a crisis point, transitioning to high school, that we started down this road — and over a year later are starting to understand that she is on the spectrum. The meltdowns and anxiety have been confusing at best — and downright dangerous at times. She is so very borderline that it is difficult to tell when she is being a normal teen and when she is being so very Aspie. I am a middle school teacher, too, so I see glimpses into other houses and know all too well that there are those who need more immediate help than I do — but this has never been an easy journey for any of us. I am just incredibly grateful that there is a community out there to tap into for insight, guidance, support, and maybe even understanding.

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