Wednesday, August 17, 2011

Patience

When Elijah turned one, it was as if a switch went off for him: "Uh-oh, I'm one.  I better start doing some stuff."  It seemed like week after week he was hitting new milestones.  Recently, though, we've been on somewhat of a plateau. He's not losing any ground, is still getting stronger, getting more hair, getting faster at scooting around, but the big things haven't been showing much sign of improvement.  The last week or so, I've been actively trying to not get down about it.  For example: Sitting. He can sit.  He just won't.  I mean, literally 2 seconds after I put him into a sit position he's flinging himself out of it, so he can scoot around instead. I get that the scooting is more exciting- he can go where he wants and do what he wants. But, he needs to be sitting.  He has a very weak core and sitting can significantly help strengthen that.  He also isn't making any progress on getting his scoot to be less synchronized.  Currently, it's like a synchronized military crawl, instead of an arm-leg, arm-leg maneuver as it should be. The other big one- maybe even the biggest one, is that he hasn't shown any interest in self feeding...until SUNDAY! I got my first glimpse of him starting to catch on late last week.  I put some puffs down on the highchair tray in front of him and he picked one up, put it into his mouth, and ate it.  Cue the hallelujah chorus.  I even texted our Occupational Therapist to say, Guess what?? But, it was just ONE puff. The rest were swiped to the floor.  But, it was still one, at least.  Everyday since then, I put puffs down for him at each meal.  Then I have Christian stand in front of him, get his attention with a puff and eat it in front of him so he can see it being modeled.  (Let's face it, though, if Elijah gets puffs, then Christian wants some too.  So, I put him to work for his puffs.  "Will work for puffs".  Sounds like a new bumper sticker to me.)  On Sunday, when I put the puffs down, he picked one up and ate it.  I had turned my back to put the puffs canister down, when Christian started excitedly shouting, "He ate a puff, Mommy! He ate a puff!" Sure enough, he was chewing.  Then, I watched as he picked up another puff, put it in his mouth and started eating it.  Now, this was two in a row.  I started jumping up and down and Christian started jumping up and down and we were laughing and shouting and shrieking, "He's eating the puffs!! He's eating the puffs!!"  Now...I am prone to excitement.  When my ballet girls get something they have really been working for, I will do a little happy dance complete with tiny, hand clapping.  However, the kind of jubilation I celebrated on Sunday may not actually be equal to anything I have ever done.  A stranger watching through the window would have thought we just won the lottery.  Elijah kept right on eating those puffs-about 10 in a row, looking at us like, "What's going on? (munch, munch, munch) What are you people so happy about? (munch, munch)" It was as if he had been doing it his whole life.

On Monday, Elijah impressed me yet again. He was clearly tossing a ball back and forth between himself and the therapist.  It wasn't perfect and sometimes I wondered if it was accidental...but time and again he'd pick up the ball and then let it go in her direction. The therapist and I looked at each other like, Are you seeing what I'm seeing? Though not the improvement in the areas we've been working on, it was encouraging to see this milestone starting to shape up.

I needed this. I really needed this. And, as if Elijah has some sixth sense about how much I can take, he delivered. Just when I needed him to. Maybe it is just timing, but we have a history:
When Elijah was a newborn in the NICU at the hospital, the doctor first told me he would probably only need to be there for about 3 days.  Then the 3 days turned into 5.  Then the last doctor told me he might be in for another 7 days...unless Elijah really made some turn around overnight, it could be 7 more days, but he really couldn't be sure.  I was at my breaking point.  I was really starting to lose it.  It was confusing because the doctors and nurses kept saying how great he was doing, but the days kept being added on, not subtracted.  When I went home that night, I lost it.  I had never before experienced what I think true depression must be like, but I think that was it.  I was a walking shell by the time I got to the hospital to visit him the next morning.  I walked in to the NICU on the verge of more tears only to be greeted by the nurse: "Well, Elijah has been doing great!  We were able to take him off of the oxygen last night and he's been breathing on his own ever since.  It looks like he'll be going home with you tomorrow." I nearly melted into the floor.  All I could think was Thank you God, I don't think I could have taken much more

There was also his first smile.  When Elijah was 9 weeks old, I was noticing and worrying because it didn't seem like he was able to focus his eyes.  (He has since been diagnosed with a harmless condition called Nystagmus, which is a slight pendulum effect to his eyes. It is if he is looking left to right and checking things out.  At 15 months, he still has this, but the severity seems greatly reduced and he can focus his eyes well now.) With extra high odds for him to have a dual diagnosis of Autism, I was terrified.  Could this be an early symptom? Why won't he look at me?  Why won't he smile?  I sat on my bed with my knees pulled up and placed Elijah straight in front of me- I kept moving my head to try to get his attention, and just as I was about to break down crying because he wouldn't do it, his eyes stilled, he looked straight at me and gave me a big smile- his first intended one. Tears of happiness sprang from my eyes in the most unexpected way and I'm pretty sure I said, "Oh sweetie, Thank you! Mommy needed that.  Mommy really needed that."

The last couple of weeks I have been really starting to internally struggle to stay optimistic despite the fact that it is all taking so long. I'm seeing a lot of other kids his age, or close to it, with Down syndrome, who are doing WAY more than he is.  It is sometimes hard to stay focused on the big picture and remind myself that WHEN they accomplish a milestone is not really an indicator of the bigger picture. But...the last couple of weeks I've been struggling to remind myself of this.  Elijah is a joy to be around, but boy is he stubborn.  He just does not want to do what he does not want to do.  That is for sure!  I've been holding strong and being patient for quite some time and it wasn't much of a struggle to do that.  However, recently, I find myself more frustrated with the lack of progress in the area of gross motor skills.  My brain tells me he'll get there, but my heart says when? when?

I'm taking deep breaths, doing extra yoga, and venting about it to Elijah's therapists. No wonder "Patience is a virtue"- it's so dang hard to maintain. Most days it works to just be in the "now" and enjoy where he's at- after all, he won't be a baby forever.  Then there are the days where the patience for "right now" goes out the window.  I guess I wouldn't be human if that weren't the case.  I'm hoping that getting it out in my blog will also release a little bit of the frustration for now.  I'm realizing that it's not just about being patient with Elijah and when these milestones will happen, but it's also about being patient with myself. I'm not always going to be able to be perfectly optimistic about it all. There is no amount of yoga or proper eating or attempted mind control that can completely prevent impatience and frustration.  So my best line of defense right now is to just allow the feelings. To say, Today I'm frustrated. Tomorrow is a new day.  I am not in control of Elijah. I am only in control of my actions. My feelings are a different story...and that's okay.
 
You must first have a lot of patience to learn to have patience. - Stanislaw Lec





6 comments:

Jenny said...

I can always relate to your posts. With Russell we go in spruts...He will learn a ton of things all at once and then it tapers off and we are just stuck in one spot...During those times its hard to be patient...Its hard not to worry and wonder when he will learn this or that. There are always kids his age with Ds that are ahead of him in their development...There always will be. And I have accepted that every now and then I may get sad about it...But like you said, tomorrow is a new day! And we move forward.
I know at times I have blamed to much of what Russell isnt doing on Ds when really it has a lot to do with his stubborn, laid back, who gives a crap personality!!
Anyway, I'm rambling! I always enjoy reading your posts :)

Becca said...

Oh, it is always so hard not to compare! And just bear in mind, our kids can't really do two things developmentally at once. Well, not consistently. Like, if he's working on one developmental milestone, another one will suffer. It sounds like he's really working on coordination! Samantha stopped learning new words while she was learning to walk. Once she had mastered it, she went back, immediately, to learning more new words. Patience is definitely a virtue, but trust me, we ALL know how hard it is!! LOL You're doing great, and Elijah is doing great!! ((hugs))

katjameson said...

Oh Jen, I think you're doing great. The blog is excellent therapy and I'm glad we connected too. Yes, it IS frustrating because as parents we so desperately want our children to be the best they can be. With special needs kids it is just ALOT slower. Chris walked at 20 months having started the army crawl a 10 mos. And he never wanted eye contact (his right eye has nystagmis) so I was beginning to think he hated me because he never smiled at me, I think he was 6 mos when he finally did. Yes, these were signs to the pediatrician but we were so marginal that we didn't qualify for early intervention like you have with Elijah. He will be so far ahead because of that, just wait. I have a feeling the gross motor thing must be especially hard for you because you are a dancer. You know what it is to push your body and the joy that dance can bring. Of course you would want that for Elijah. He'll get there I have a feeling (mom's intuition). Chris used to run like Forest Gump and now he is in a "normal" kids basketball camp this week. I think what it takes is for them to find their "thing" and then they jump in. I know here in Simi they have bowling nights for kids so when Elijah is older you can try that and baseball and basketball and whatever it is that excites him. And when he breaks out in a huge smile because he's having fun no matter the outcome it will all be worth it. I can't wait to meet him someday. Maybe you can bring him on a Saturday when you are filling in for Jessica when she has her baby (err.. at least I hope you're filling in and not one of the teenagers). Have a great rest of your week and make sure to take lots of pics of Elijah eating his puffs. =)

katjameson said...
This comment has been removed by the author.
Ginny Marie said...

Yay, puffs! That's so funny that Elijah looked at you like it was no big deal that he was eating puffs.

Your story reminded me of my own puffs story...my daughter had trouble transistioning to solid foods and had a huge gag reflex. When she was about 10 months old, we were at my niece's graduation from eighth grade, and she was being fussy. I put a puff into her mouth, hoping that would keep her busy...and then she gagged and threw up in my lap! Thank goodness she didn't throw up on the person in front of me! Now, I'm laughing at that experience, but I was so embarrassed at the time!

I know being patient can be so hard, but you're doing all the right things. Keep up the good work, Mama!

Melissa said...

Claire seems to know when I NEED her to do something new too! Love that Elijah is chowing down on puffs! Claire is in a bit of a lull right now so I hope we get to see some new stuff soon too!

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