Erik Quinn: The Heart of a Family: Hills

Thursday, October 02, 2008


Thankfully, I no longer feel like WS is a wall that separates me from Erik. The distinct, autism-like traits he had have gradually fallen away, although some still remain, subtle and strange. He seems to really hear me now, at least most of the time, and seems to understand most of what I say. He even thinks I am somewhat funny at times. Instead of mostly parroting back my words, he responds appropriately, and we are beginning to have real conversations, which I enjoy immensely. He loves new words and phrases, and he tries them out before committing them to memory for future use. His language is organized and meaningful.

Having said that, though, simple tasks continue to be incredibly difficult. Erik was a completely passive boy when he entered early intervention. Not long ago, he would stand there, drool stringing off his chin, and patiently allow us all to care for him and gently guide his body through the motions of daily life. When things got to be overwhelming for him, he would just slump over and tune out.

Things have improved a lot. However, I am now encountering a frustrating mixture of extremely poor motor skills, some remaining lack of understanding, and the normal pediatric rebellion that comes with being almost 4 years old. While I still get a lot of reassurance from the people around me gently indicating Erik's behavior is perfectly normal for a 4-year-old, I wonder if they truly understand that it is still necessary to hover over Erik to get him to perform even simple tasks. I am beginning to notice that they don't seem to have to with their children. At this time, Erik cannot even consistently complete two-step instructions. He will sporadically do one-step instructions when asked now. I can physically steer him where I want him to go to accomplish something that needs to be done, like brushing his teeth or taking a bath, but he rarely will volunteer to follow instructions to accomplish daily tasks without becoming furious at me and throwing a sometimes violent fit. I am kicked and slapped many times a day. He is too heavy to carry like I used to, although I now find myself doing it anyway when we are short on time and he is raging or just sitting on the floor being happily defiant. Most of the time it does me no good to repeat myself over and over. Consequences for behavior seem to only make things worse and are now sparking some obsessive rumination, and I have resorted to simply shutting him in his room when he tries to destroy things until he is able to calm himself down. This usually doesn't take terribly long. I just don't have the time or the energy to beat a dead horse.

Do they understand that Erik doesn't understand the simple concept of rubbing his hands together to wash them, no matter how hard I try to explain how or demonstrate it for him? Do they understand what it's like to have a child who still doesn't seem to grasp the concept of holding a freaking crayon? Do they understand how tired I am after changing nearly four years of diapers? Do they see the pain in my eyes when I see tiny children moving so easily without falling and performing tasks that I am still waiting for Erik to do someday? Do they know how ridiculously simple my dreams for the future are? Do they understand that some days feel as if I am trying to run uphill? Do they know how exhausting this is?

I don't think they do.

Maybe because it's because I normally try not to sound like I am complaining and just smile and nod back. Honestly, though, I just need to talk about how tired I am sometimes. I didn't realize there were nerves in a person's soul, but, as it turns out, it is possible to ache there.

The last couple of times I walked Erik to his classroom we have been intercepted by my former parent group moderator in the hall. Despite her having nothing to do with Erik or his program any longer, she seems to have made it her personal mission to accept Erik's hand in hers and walk him to his classroom before giving him instructions to show her his locker and hang his backpack and jacket on the little hooks inside. The trouble is, Erik, of course, wants no part of any of this, and she must force him to do it. This apparently requires talking to him like he doesn't have two brain cells to rub together. Her words almost have a Nurse Ratched quality to them. Horrified, I wonder if I sound anything like this to outsiders. I'm hoping it's just her. I still have a bad taste in my mouth after the day she labeled him "severe" during parent group. It is quite obvious to me that she still believes that is true. I know things are difficult, but I never believed Erik was actually severe. Maybe he is. Maybe I just can't see it. I don't know what's worse. People calling my kid a "retard" or treating him like the word sounds.

This whole procedure really rubs me the wrong way, but I am unable to find a socially acceptable, kind way to tell her to get the hell away from my child. Instead, I humor her, as Erik does not notice her tone and she seems to be trying to help, and I let her go through the maddening motions I would be required to in order to get him to perform these tasks. Erik inevitably can't seem to see the connection between the metal hook and the loop on the top of his backpack, drops his things, and walks away, distracted by the noise and the plastic bins full of toy cars and trucks. Unable to take his coat off by himself, she helps him off with it, and he drops it on the floor. Sometimes he still drools, indicating to my experienced eye that this whole production has now crossed the border into not-a-chance-in-hellsville. I stifle the giant scream that is assembling itself in my lungs and smile sweetly. She then instructs the adults around us that Erik is to do these things by himself, and we are to not distract him.

Yeah, right.

Today I was being kicked in the chest once again by my furious, ever growing boy as I tried to change a ruined diaper packed full of the rotten products from the combination of last night's first attempt at mac and cheese and his sensitive stomach, and I almost lost it. Everything began crashing down on me inside, and I had to finish quickly and walk away.

I guess I'm just tired of running uphill each and every day.

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Blogger Michelle said...

oH GOODNESS..Thank you for this post! A million thank yous! These are the same exact emotions I am having at this very minute. All I can say is I understand how you are feeling 100%. I don't think other people get it. I don't think other people even care to try to get it. They certainly don't get that "this is it" this is it for the rest of our lives. The battle will never end, the worry the stress....there will be good days of course...but never again a day without worry. I am sorry I am a downer...I guess I'm just sick of climbing the freakin hills too.

6:19 AM  
Blogger Amy said...

Big hill for me this week as well. I find myself getting easily annoyed with Avery's toddlerhood. It is just mess after mess, from ripping up magazines, to grabbing anything off the kitchen counter and dragging it around the house, spilling it, dumping it, tantrums when I take it away. I am pooped. Her fascination with things is distinctly tainted by WS. She has no clue about boundaries, no is meangingless. Day and sometimes into the night she is just yelling at me for things. And I feel guilty because I am annoyed and upset, and can't escape. Thanks for the diaper rant, me too, done with it.
Thanks for letting me rant, I didn't know I needed it.

7:02 AM  
Blogger Tara said...

I love how you put things into words. I am just not good at that. I'm not sure - and I hope someone corrects me if I'm wrong, but I think not being able to do tasks when asked is part of the adhd?? If I ask Payton to go inside and get her backpack, she'll go inside but it's almost like she forgets what in the world she went inside for. I'm sure something distracts her. The hitting, kicking, etc. We still experience this. Since Payton is now on Celexa for her anxiety it is a bit better, but still have an issue with it. Like you, I feel like we are going uphill all the time - and you are so right - it's exhausting.

8:30 AM  
Blogger camille said...

I hear you loud and clear. Other people have absolutely no idea what this is like and unless they ever have a child with special needs, they never will. It is incredibly frustrating to watch other kids so easily pick up on concepts or take a step down without any hesitation or even just watch them get the hang of a new toy and gasp, even play with it appropriately. I spent an hour this morning in toys r us looking for toys without any spinning apparatus on them, toys that are not round or toys that have any small pieces on them that will just be spun and spun to no end. What bliss it must be to walk up and down those aisles and not have to think about those just pick up whatever blasted toy you want and know your kid will love it. These hills are exhausting and I'm glad you put it into words. I was just trying to explain to my husband how tired I am of trying to teach Connor to play with things when he resists me with all his might. I just can't do it anymore, I need him to show me some ounce of initiation, anything to let me know he actually wants to play with something correctly. I'm just tired of forcing everything. Uphill battles suck.

9:06 AM  
Blogger Tes said...

Nancy I actually had to hold off on posting because I have so many conflicting feelings associated with our positions in this life. Understand while I don't have to deal with the hitting issues, biting etc, I certainly become overwhelmed with the constant "uphill" battle. I am tired. period. Just this past weekend after the birthday parties I found myself so very very sad. Why force these things, am I doing this for myself? If so I should stop cause it causes me such heartache. I find myself annoyed with all things and I feel like such a f*%$ heel. Especially the running around, the worrying about schooling, therapy and all for what?! At times it all seems so damn useless. I want to just chuck it all and escape and be one of those mothers people whisper about "she left her family, how could she do that". Sit down Mr. head in the sand and let me tell you the story. I pray for all of us, every day.

1:09 PM  
Blogger Julie said...

Wow I think we all needed this one. I can relate to things everyone says. No one else will ever get it. Do they really even want to? No would be the answer to that and if they got it they would probably pity me and I don't want that either. I think Noah is at a stage where everyone thinks, "oh it is just the 2's and you will get through it." What they don't know is ALOT of it isn't just his age. Yes eventually he will master some of the things he struggles with now such as walking up and down steps, but life is always going to be a struggle because they have so many issues. Things I just honestly took for granted with my other kids like not walking into walls because your distracted, understanding what is said to you, etc. I just the other day caught myself at work. We were outside and a boy Noah's age was leaving. His mom was able to carry all his stuff and let him walk on the sidewalk without holding her hand. Noah would have been gone. Sorry to babble, I just so get it. Thanks for this Nancy.

1:37 PM  
Anonymous Anonymous said...

Gua said...
Nancy, if EVER you consider giving up your blog, reread the comments to this one. You have a very important role-- and the feedback you get from other women in the same bucket is priceless for your state of mind, as well as theirs. Moms, please know that every morning I get up early, light a candle, and sit quietly to meditate on our Williams family. I know it sounds a little lame, but I really believe that it helps.

We're with Erik enough that I am in awe of all of you who deal with Williams day in and day out. Life is NOT FAIR; I have a tremendous respect for all of you as you fight the good fight.

Love, Mom

2:53 PM  
Blogger Ava Jewel Leilani said...

WOW! ME too feeling everything you just wrote and once again you did it so well, I think I might just copy and past your post to my blog! I just wrote a comment on Edna's blog about people not getting it. (Has anyone else noticed that we all tend to experience many of these things at the same time). Thank you Nancy fo putting into words what I am not able too!!!

9:56 PM  
Blogger Penny said...

I went through these exact same daily battles with Keith when he was in pre-school, even down to the backpack on the hook. Some days we would wait for 30 minutes for Keith to put the loop of the backpack on the hook, all the while tears streaming down my face.

Personally, I think a big part MAY very well be this teacher that is with Erik. We have started a new school and new teacher and there are no mroe tears and Keith LOVES to go to school now. He will listen and follow instructions. Hell, if I had the teacher from hell telling me what to do every day, I would rebel also.

I know that's not the only answer. Some of this is just the WS. It is what it is.

I think it will always be uphill for us. Just know that there are some of us mommies out here that also "get it" and we are here for you.

Hugs to you and Erik,


8:31 AM  
Blogger Michelle said...

I know that we're not dealing with the same syndrome, but I certainly understand about people not "getting it" and chalking everything up to "that's just her age" or "other 3, 4, 5, etc year olds do that too" - but a lot of it isn't the same.

I tried putting Kayla in a soccer class last year when Joe was deployed and I was 4 months pg (not sure if hormones had anything to do with it, but probably did!) and the first class was absolutely awful. As soon as we got in the van to go home I just sobbed and sobbed...anyway, don't mean to make this about my experiences - just thank you for your honest and for sharing.

9:37 PM  
Blogger Heather said...

They don't get it at all unless they have actually been climbing the hill themselves.
I want to promise you that Caleb's toddler years were the absolute hardest yet by far. It was such a battle every single second of the day. I didn't even want to get out of bed most days to attempt facing the challenge. He too had that defiance for doing anything that was hard for him or diverted him from his obsessions.
I promise you all that it does get easier. Whether it is just a certain level of acceptance from us, or if it is more of a growing and maturing thing on their part, or just a combination of both. I promise it gets easier to swallow. You learn to pick your battles and accept defeat with the battles you can't win. You will know the difference between them are as your kids grow and change. There are some things you just have to let go of, and others that you will know that you have to stand strong for. Hang in there, the best is yet to come! I promise!

6:59 AM  

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