Erik Quinn: The Heart of a Family: Transitions

Tuesday, May 15, 2007


Erik and I just returned from breakfast at my parents' house and then school/parent group. We ate my mother's to-die-for rhubarb custard pie with Erik's great-grandmother, who was here to visit and watch my mother's symphony concert.

With the change in the weather, I feel enormous changes coming in our family as well. Erik uttered the word hungry after a nap the other day, although he has not said it since. He has never told anyone he was hungry before. It was reported by some staff members at his school that he has actually been seeking the company of other children and calling for them by name instead of running away from them. Today was no exception. He was singing a little song to himself when we left. He has transitioned into his big boy bed, which intially went well, but now I can't get him to go down for a consistent nap. This means the two to three hours I had during my morning to work or write are ancient history. My blog entries may become further apart for this reason. I also suspect he is not staying in bed at night, although he always stays in his room. I will go by his door at night and see that his light is on. I turn it back off, put away his toys, and lead him back to bed. I find him playing on the floor in the morning, and he is becoming uncharacteristically surly at the end of the day. I suspect he is not sleeping enough, although he does get a decent nap in his playpen at my parents' house in the afternoon. As much as I cheer for his new accomplishments, things have definitely been turned up a notch in terms of being challenging. What is most scary to me is that after months of successful therapy, Erik is lightning fast on his feet. He runs straight down the road for the street and does not consistently follow commands to stop as he heads for cars and trucks roaring by at 50 miles per hour. We are all working with him on this. He often becomes angry and frustrated in public and easily wrenches his hand free from mine to run from me when I try to steer him in a direction he does not wish to go. It's typical 2-year-old stuff mixed in with an inability and/or unwillingness to follow simple instructions and commands. His therapist agrees this is scary stuff.

Am I ready for this? Oh, heck, I don't know.

The last time I felt like this was in October after he received his AFOs and instantly talking to strangers for the first time. I was frightened then, and I suppose I am frightened now. I adjusted before, and I imagine I will adjust again. It's part of watching him grow.

We are anticipating four more weeks of summer early intervention program after the Fourth of July, and we will continue home visits. After that, it's off to preschool in the fall, baby, on the short bus. Even though he will spend two years in preschool, this is a pretty gigantic step for me. It seems like I just became a mother, and, although I do not consider myself overprotective, it is hard for me to let him go a little more as time goes on, knowing how dangerous this world is for a trusting soul like my son is...and will always be. It is simply no longer possible for him to be with me 24-7. He seems to thrive despite each and every change and I love to watch him succeed.

I now find it easy to explain this journey I'm on to a mother with a typical child. No, I can't describe exactly how it feels to another parent, but I believe I succeed in getting as close as humanly possible here. What I can honestly say is that many of the things parents usually watch their children do automatically we are required to teach our kids to do -- from manually positioning their bodies in order for them to learn to move themselves to teaching them the simple art of play. It can be exhausting to my bones, but it can be rewarding, too. I have a library of handouts and publications to instruct me how to best teach my son to do things most children take for granted. I have manuals on his particular syndrome. I received approximately SEVEN thick handouts today on language, music, play, and toileting today. At group today the speech pathologist told us about a woman whose first child was born with a disability. This mother threw herself into caring for this baby and doing what she was instructed to do by professionals. By the time her second child came, she saw everything she was required to teach her first child just happened in her new baby. Naturally. No handouts. No books. No speech pathologists. No physical therapists. When I watch other children, I am amazed. Many times I see a child do something on the playground that comes completely natural to them, and all I can utter is, "Wow." I have heard the exact same word come from my husband on such an occasion. We look at each other, smile weakly, and shake our heads in disbelief.

On the other hand, Erik is incredibly amazing, too. No, many things do not come naturally to him. It's frustrating, hard work for both of us -- as well as the people who love and care for him on a daily basis. But when he does that one thing that I never thought I would see him do, I honestly feel like I can walk on air. I know he had to put his heart and soul into learning how to do it. And that is something a parent of a typical child may never fully understand. That is one of the incredibly beautiful, bittersweet gifts that come with having a child like mine.

As for any bad feelings I have had lately, I have concluded that (a) I still have bad days here and there and (b) because I don't have as many bad days and my husband and I are on different pages at our own speeds on this journey, I feel lousy. That's right. I feel bad for not feeling as bad anymore. It's part of the process I didn't see coming, but here I am.

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Blogger Aspen said...

Beautifully stated. When I think of the transitions we have already gone through, I reflect only long enough to realize how many more transitions we have yet to go through. Sigh. I don't imagine the day will ever be here that we don't fear some transition we are currently going through or a future transition.

I loved the night time story. Made me giggle thinking of him playing away in the wee hours of the night. HA! LOVE YOU BOTH!

1:22 PM  
Blogger Lisa R said...

I never had issues with Emma going ot bed...we actually have more now...I guess Tatum is going ot be our handful...I think the rest of our lifes are going ot be transation...I guess it keeps us on our toes...

Love you Tons :)

1:39 PM  
Blogger Every minute counts.... said...

I am struggling with the transitions right now too. It seems to be a never ending process that really should not have to happen. Some days lately I have felt alot like " why does it have to be so hard" it should just flow like it did with the other 3. Then I am reminded that the other 3 had their issues too it just didn't seem as all consuming.

As for the running into the street...we still deal with that. It has gotten better. I had a brain storm the other day and think I am going to try to teach her the "freeze" game or "red light,green light" maybe she will hear that. She just seems to tune out "stop" and "no". I guess I will just have to be creative to figure it out!!! I'll let you know if we have any success.

Mean while....keep your chin up...we understand!!

1:56 PM  
Anonymous Gua said...

We're working on "stop." I let him run in the yard, yell "stop," give him a "yea!" and a hug, and let him carry on in the same direction. He's learning that I'm not always going to keep him from going where he wants. it's funny, the first few times today he stopped but screwed up his face. The last couple of times he actually grinned. I did my thing, then he went on his way. We'll see if this continues to work!
What a guy!

Love, Mom

2:12 PM  
Blogger Teresa & Shawn said...

The bed stuff is Erik being normal! Jamie stopped napping after we put him in the toddler bed because he was too busy playing. That went on for a couple months and then he started napping again. And sleeping on the floor, by the door, wherever is also completely normal in the transition to a bed. That's great that Erik is transitioning, though! I know it can be hard, but the fact that he is open to change is awesome.

And, you, too. I know it's hard, but you're doing great! You and Brian may never be at the same place at the same time. Just be there for each other wherever you are.

4:19 PM  
Anonymous Anonymous said...

So true...
I took for granted the things my first child did 'naturally'. When Jaiden, my second didnt - i thought perhaps i hadnt spent enough time playing with him and teaching him as i was also dealing with a toddler, maybe Liam was just a smart kid?? We had known somthing wasnt quite right for along time, despite the doctors saying dont worry he will catch up soon... It was when i had my third child and had even less time than before and noticed that my third was as quick as the first, understood things just so 'naturally' that i finally could stop blaming myself for Jaiden being behind - i knew it wasnt my fault, just that he was lacking these important natural instincts and he would need to be shown.
Jaiden runs off in front of traffic and wont process the danger of cars at all - if i am in a busy traffic area with all my kids i have to put him in a pram so he doesnt slip my hand and run in front of a car ( or off with a stranger - he would go anywhere with anyone). I hate having to do this, i get alot of arkward looks from people, judging me on how i am raising my child - why is a child that age in a pram? why cant she control him? young mothers!.
Yesterday i got a sympathy smile from a women.
This was as jaiden threw himself on the ground screaming because he didnt understand somthing going on around him, i smiled back at the women and realised she was holding hands with a child that had a disability - im not sure what disability he had but he was badly affected. That smile ment everything to me at that moment - Im not alone. There are people who understand, who dont judge and millions who have it ALOT harder than i do. I am so lucky. Lucky to have every smile, every 3am cuddle every little song hummed under his breath. Everything.


4:45 PM  
Blogger kathi said...

I almost feel like I don't have a right to comment because I seem to be the only one that doesn't know first hand what you're going though.
I wish that you could see, though, from my view point that you, too, are going through difficult learning processes, like Erik, and be as proud of yourself as you are of him sometimes. I think that maybe the frustrations you have with/regarding Erik, you take out on yourself because you can't take them out anywhere else.

I'm so proud of you. I think you do an amazing, AMAZING, job as a mom. I wish you could see it, because to everyone but you, it's so obvious.

5:34 PM  
Blogger Kerry said...

Ditto what Teresa said about naptime. How can he sleep when all those toys are beckoning to him? ;)

It seems we are always working on that next step. Pretty soon they've mastered it and we're onto the next step. I can't believe my firstborn will be nine this summer - I swear I just brough him to preschool last week. :( It's a fast road. He also won't hold my hand crossing the street "Too old for that."

Sigh sigh sigh....

8:18 PM  
Blogger Rosemarie said...

I've come to terms with Julia's transitions as well and have embraced each one either willingly or reluctantly. Nonetheless, they came and I held on tight!

1:05 AM  

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