Alone.

My son is six.  He still needs me to prompt him to use the toilet or he doesn’t go.  I want to watch a movie, even a children’s movie.  He cannot sit still or pay the least bit of attention to any children’s movie other than Cars 2 for longer than 10 minutes.  Right at about 17-18 minutes into Cars 2, he is fully running around, talking, asking questions, engaging in loud echolalia, and leaving to play with toys, although we did make it through that one – twice.

I watch very little grown up television (I have been able to sneak in some Food Network, House Hunters, and a glimpse of the Olympics).  I have no idea what movies have been released on video, have never used NetFlicks and have no idea what’s been on the big screen in the last six years because he is with me 24/7 except for a few hours when I try to accomplish some work as an attorney.

There are no trips, no vacations, no travel.  There are no community events.  No fairs.  Maybe 6-10 family outings a year, lasting no more than a couple hours each.

If I want to cook, something comes up half the time.  Most of the time, I rush the meal, or give up because my son decided it would be a good time to use the restroom.  Other times, I will be doing laundry, dumping garbage or other glamourous duties when he announces he needs help with his Wii, batteries changed on a toy, or he cannot find something, all of which will trigger a meltdown if I do not drop everything and help him.  Sometimes I do.  Sometimes, I let him work through it.  Sometimes, this works.  Mostly, it does not.  He melts, recovers and follows the exact same course that led to the last meltdown.

I get him dressed and undressed.  I have to because if left to his own devices, he puts both feet in the same leg of his pants, shorts and underwear or sits naked for an hour with the clothes next to him while he plays with a toy.  He has difficulty pulling shirts over his head because he tries to use the arm hole as the head hole.  He has a 50-50 chance of getting the clothes on backward.  If he puts shoes on by himself, the heels are tucked under and cut into his feet or they fall off and he falls, injuring himself.  He cannot do or undo a button or tie his shoes.

He will tell me he is hungry or thirsty, but if he gets something on his own, he almost never closes the fridge and even then, I must open containers or break pieces of whatever limited food he will eat.  I will go in the kitchen three hours later, only to find the fridge door wide open.

I brush his teeth, supervise the washing of hands to assure the soap is on and then off.  I  dry his hands and comb his hair.  I choose his clothes and administer the nine regular medications and vitamins he takes every day.  I bathe him.  I would never even consider leaving him alone for a second in the tub.  He is too clumsy and unaware of that danger.

I assure he eats and drinks.  I wipe his face and clean his boogers.  I keep him entertained.  I pick up after him.  I read to him.  I educate him.  I drive him from therapy to therapy.  I hold his hand in parking lots so he doesn’t walk into a moving car while staring at the Viper parked at the other end.  I open and close heavy doors for him.

I talk to him.  I decipher what his needs are by reading his body language and keep a constant vigil for things that could cause illness, danger, meltdowns, fear, or sadness.

There is no one to talk to about these things.  My husband thinks all this should be “standard” wife and mother stuff.  I have no friends who are going through similar situations to share their wisdom.  If I look around,  certainly, there are friends. No one though to talk about the common experiences that make up my daily life.

Except for here, in an electronic universe of words, where other mothers like me, get it.  They understand the devotion, set backs, trade-offs, long-forgotten careers, and the daily sacrifices. We listen to the same sentence 113 times in a row and then when we hear sometime new, unrehearsed, we cheer. Oddly, that is more heart-warming to me than hearing it out loud from someone I know.

I had to throw a party this weekend.  Even though my mom was just barely out of the hospital, I could not back out.  Everything had been ordered, paid for – done.  It was for my husband’s birthday.

People were in my house.  They were nice.  They were friendly.  I spent most of the time, chasing my son, responding to his requests for attention, calming him.  I was literally alone in a room full of people.  And though the party was okay, those people in my house don’t “get” it.

Those who “get it” are people I’ve never met.  People I have learned to care for through stories on an electronic medium that unites us.  It’s what helps me survive.  Because for the “in real life” part?  It’s just me and my son.  My husband is with us – maybe- if I added it all up, an hour a day.  And though I love my son to pieces, I cannot talk to him about his echolalia, how tired I am, how much I worry, and what I should do about his behavior.

I am fortunate in many ways.  I know enough to be grateful.  But, most of the time, I am just, plain alone.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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30 Responses to Alone.

  1. Oh, Karen…. my heart aches for you. Yes, you are right about our legion of “autism strong mommies” out here on the internet — but what do you do when that strength runs dry? What do you do when you just really, really need a break? A friend to talk to? A real live shoulder to cry on?

    I hope that someday we will meet “in real life” — but for now, please know that I am here for you. You’re doing a great job, my friend. A wonderful job.

  2. I KNOW WHAT YOU MEAN! What else is there to say?

  3. Teresa says:

    {{{{{Karen}}}}}
    We often do feel alone. I had a similar experience during our daughter’s graduation party. Here I was hostess but kept having to run off and make sure son wasn’t doing anything inappropriate. Husband enjoyed party, visited with friends, ate, drank and didn’t see any problems.
    I realized then that for our next party I would really do best having a ‘friend’ for son, yes, a hired person who could take some of the responsibility off my shoulders.

    The challenges of having a special needs child too often fall to one parent. When our son was young and at a similar stage husband appeared (to me at least) to bury himself in his work. The acceptance of having a son who might not do all the expected things took a long time to come. When we don’t even have our spouse to lean on it’s even more difficult. Many of my friends went their separate ways as their children hit milestones and moved ahead of mine. It was a lonely time. I did have the good fortune of having parents who could help but my husband’s siblings, who all lived close, did not understand my son’s needs.

    I have more friends now who are also parents of special needs children. While we don’t have school, education or careers in common we do have a distinct bond that comes from our children. I have learned to look outside the box for friends. I am older…and younger…than my friends. Those who are closest have common traits, they also care for someone. A couple of older friends have spouses who had strokes, one at a young age, but whose needs require attending. One friends who is younger also has a special needs child, a young adult now but who needs constant attention. We grew up in different worlds but our children brought us together.

    Stay strong. If you need a break, come to Arizona and visit us. There is little that fazes us. We understand.
    Teresa

    • solodialogue says:

      Teresa, you sure know how to lift my spirits. It is so hard when it’s that room full if people and you are the one leaving, chasing, being pulled away and isolated. It just made me realize how important my online friends are to my well being. Thanks for your words. ❤

  4. gentlepup says:

    My son is three years old and I can relate to so many of the thoughts and feelings you’ve expressed here. Echolalic speech is a blessing and a curse, isn’t it?! My friends, well-meaning, comment, “see…he has language” and they are blind to the fact that the words are simply interesting sounds to my son, not actual words. I get phrases like, “pudding come to play” and “like to eat air conditioner, air conditioner, air conditioner…” Thank you for describing your experiences, as they are so familiar to me. “Solodialogue” is the perfect description of this lonely path.

    • solodialogue says:

      It is lonely but here – I want you to know we may be physically isolated, but through here and everywhere within the networked electronic community, we can find relief, comfort and understanding.

      Echolalia is hard. I get the same. ((hugs))

      • gentlepup says:

        Thank you! I hadn’t read my notifications and missed your kind words. I’m a quiet follower of your blog and I really appreciate everything that you share.

  5. I know that you and I have only been online friends for a few weeks now, but I have come to look forward to your posts and comments. Before I started blogging, I had my husband and my daughter as a support system and believe me, I never take that for granted. My husband works the majority of the weekend which leaves me in charge of three kids ranging in ages from 14 to 5 years. Between their antics, bickering, meltdowns, trying to end the meltdown, house work, laundry, making dinner for five, tending to the dog, etc. things get extremely chaotic if I am not up and moving nonstop. By the time Husband gets home at the end of the day, my feet and body are as tired and worn out as his.

    No one in my “real” life can really appreciate the level of crazy we have to deal with. Not even the team of professionals who work with my son, unless they, too have a special needs child of their own. I cannot begin to express how much comfort I have found through blogging and the connection I have made with mothers like you who work so hard and with so much devotion for their children. You are an inspiration to me and you are not alone, at least not in an online capacity.

  6. Huge hugs….I remember those days. Once I recorded for a few hours everything happening. I had not a minute to myself. My boys fought constantly to the point of finding my boy with ASD strangling my one son until he was blue in the face. I could not keep him out of my site. I could not rest. My only time was around midnight when everyone finally fell asleep. Bedtime was a two to three hour battle. I was so distraught, isolated, and never able to relax….my story is different than yours, but I know the pain of having to always be there. I offer you so much light and love and know that days will get easier. I know you don’t have Netflix because you spelled it wrong! lol

    This is a great post to catch a glimpse of the real world of autism.
    Love you friend,
    Sam (And I get it!)

    • solodialogue says:

      Love you back! I guess since we have met – that real life part would necessarily exclude you! I wish we lived closer but I’d be listening and talking to you all day!

      You say our stories are different (oh that blue thing sounds awful – ((hugs)) ) but they are really kind of part of the same.

      You have brought me so much light, comfort and peace, I could not imagine the blogosphere without you. 💗❤

      • Awe….thanks so much 💗❤ That is so very sweet of you. Look forward to our next get together. :))) Hope you are hanging in there….quite the summer you’ve had thus far.

      • solodialogue says:

        Looking forward to seeing you again too. Much love for keeping me sane through all the drama here and on your blog with all the beautiful writing and photos!! 💗

  7. I get it. I fully understand everything. Again and again, you write so eloquently what we go through each day. I love my child and on most days, that is enough. On days that it isn’t, it is usually the feeling of isolation, being alone among people that gets to me. Other than my husband and older son, no one in my “real life” gets the true extent of what our days are like.

    I am so thankful for you and your writing. I never intended to blog publicly though I am glad I did to meet people like you who inspire me. ***hugs***

    • solodialogue says:

      This electronic system gives us so much – you provide to me the mirror i need as well. The written words we share bind us together when we are alone in a room of people. A lot of the time, it is the invisible net that holds me up. xo

  8. Aww all I can say is ((hugs)). It is always hardest because it is often those closest to us who don’t get it. I really feel for you.

  9. Oh, Karen, I understand this so well, I live it too in my own way and I too am so grateful for everyone here in the blogosphere so none of us has to feel so alone.

  10. Lisa says:

    I was just talking to Hubz about this. Oh my goodness…we are on the same wavelength. I agree that we are so very lucky to have a support system online. It is what gets me through some of my most lonely days. Know that we are here…although, sometimes it would be so nice if we could sit and chat face to face. Maybe someday. Hang in there..and know that you are never alone…

  11. Mary says:

    Yeah, we get it. Please don’t stop writing. You put in words what some of us (me anyway) don’t have the time or motivation or energy or ability to say. And you do say it so well.

    Reading this was so much like remembering what it was like when Freckles was smaller. I had to watch her every minute or she was eating something that wasn’t food or trying to kill her sister or attempting some gymnastic feat that would result in another trip to the ER. Poison Control knew me by the sound of my voice at one point I think. And why can’t Fisher-price make a toy that really can’t be taken apart? If I had a nickle for every time I put the door back on Dora’s van… I was never so happy to see a toy go.

    For years whenever someone would ask me if I’d seen a movie or TV show I’d say, “Is it animated? If not, you know I haven’t seen it.” I do, however, know every line from every episode of Spongebob. 😀 Both of my kids quote Spongebob constantly. I have been asked 4.7 million times, “Mom, who is your favorite Spongebob character? And it can’t be Squidward.”

    But yeah. The school, the neighbors, friends–they don’t get it. They look at Freckles and “don’t see anything wrong with her.” Right now, she is upstairs in her bed waiting for me to go to bed and fall asleep so she can sneak into my bed. I sent her to bed hours ago. And got her up earlier this morning. But she will wait me out. Believe me. I get it.

    • solodialogue says:

      Oh Mary, you are so sweet! The door on Dora’s van? That’s funny. We have a “dancin’ doors Hummer” that T pulled the doors off of long ago and he still brings them to me to put them back on (I cannot throw it away- he loves it too much even broken!). I’m glad I’m not the only one who can recite lines from Spongebob so well. Thanks for being here Mary. 🙂

  12. Massive hugs Karen. I wish I had something I could say other than, I understand. I do think you’re doing a great job, you’re amazing. You inspire me so much. I’m sorry you feel alone. I often think it would be cool if we all lived nearer to each other.

  13. Ellie says:

    Thankyou for being so honest. Until I stumbled upon wonderful boggy people talking about these things I was feeling so bad for feeling this way. Even the people in my life who understand don’t really know what it is like for this to be your entire life, to LIVE with it all day and every day. Knowing that other mums are out there in the same boat is one thing, but being able to ‘hear’ their voices is another thing altogether, and it’s making such a difference to how well I can cope. My son (8.5) has never had the same problems as your little guy but he just didn’t talk at all until he was 6, and even now his speech is very difficult and repetitive, hard to understand what it is he is trying to say even for myself some times. Thanks for sharing your feelings x

  14. Ellie says:

    * bloggy NOT boggy

    Ahahahaha … Simple pleasures, made me giggle at least!

  15. Karen – I’m sorry I missed this post until today. I wish I could’ve responded more quickly. Not that I have any magic words for you but seeing lots of comments lets you know that you’re not really alone. I know it’s not the same thing as “real life” people but I can’t tell you how many times I pass on something you’ve said to my family. They all know you as “Karen, Mom’s California friend”. 🙂

    I don’t do the big blog conferences (like BlogHer, which I think is this week in NYC) but I would LOVE, LOVE, LOVE to do some kind of special needs gathering of our own community – maybe meeting in the middle somewhere… Wouldn’t that be great?? It’s just so hard to get away but maybe one day…..

    Hugs to you, my California friend.

  16. eof737 says:

    {{{{{❤❤ Karen❤❤ }}}}} Holding you and yours in prayer and sending blessings to you too.

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