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Wednesday, November 30, 2011

It is So Much Work

I need to choose my words carefully.  I don’t want to offend anyone or misrepresent my true opinions.

Got everyone’s attention now?

There are these tools.  For children with special needs.  These … amazing resources.  They give life (literally) where life would not have survived.  They change lives. 

- In the literal sense… Alexander’s feeding pump has saved his life.  His g-tube has allowed him to be hydrated and nourished; I know he would not have survived the past year without it.  You have no idea how hard that is to actually say. Because the reality is I hate that thing.  I’m the mom that dreams of ripping that thing out. Who dreams of the day when we don’t need it.  Alexander didn’t use the pump regularly until last spring.  You can read that post HERE.  And…. then he just didn’t eat enough.  Went way down hill….. This past summer, there were days where he was not oral at all.  *sigh*

- In the life changing ways… we have standers, a wingbo, sensory toys, AFO’s, Vision therapy tools, a z-vibe, the iPad, and tons of other things to help Alexander develop skills he might never have gained.  I really feel these therapies are changing the things people (especially with Alexander’s syndrome) can achieve.  Sometimes older children are scary.  But, what if that is just because they didn’t have access to all the things we have now?

Ok. So here comes the controversial part.  To help a child with disabilities reach their full potential requires a ton of work. And… I’m not only talking about from the child. 

IMG00019-20101105-1136Don’t get me wrong.  Alexander is the hardest worker I know.  He puts more energy into sitting up than I put into any activity.  And often I find it ** tactless ** when parents of children with special needs whine.  This is a little different.  It is not a whine.  It is not a post about “why is this happening to me?”

But … on a very regular basis – I beat myself up because I haven’t done enough to help Alexander that day.
DSC_0085

In case you missed it … Alexander is eating now. And I mean eating like a champ.  He is almost 100% oral.  I say almost because he is probably just shy of his caloric mark.  Here is where it becomes a lot of work.

* If Alexander is fed on the pump – all I need to do is calculate how many calories he needs, formulate a feeding plan, and pump it into his stomach.  (In all honesty…. easy)  There are other things that go into it… but you basically figure out  the best nutritional cocktail and serve it.

* I have fought the pump since the beginning and it has required a lot of extra time and energy.  And now… It is a ton of work.  Not only does it take him a long time to eat (time that I can’t do much else), but I must also count every single calorie and nutritional aspect of what he takes in.  Do you know how many calories are in 3/4 of an egg over easy? Or in 1/2 slice of bread? with a little bit of butter?  How about how many calories are in an oz of cheese? Or is it too much to give cheese and eggs on the same day because of protein overload?  How many calories are in “some” pizza? Or “some” pork? Anyway – you get the idea.  It is not easy to figure out how many calories he is getting during the day to recalculate how many he needs to grow.  It is so much work. I’m not going to lie. It is hard work for him to eat and it is hard work for me to help him to eat.

IMG00116-20110317-1828* The same respect, every piece of physical therapy equipment takes so much work.  Alexander has to work so hard to move those muscles, but I have to put his braces on, his shoes on, give him time in the stander, adjust the stander, put him on tummy time, help him roll over, help him grasp for things, make the signs for “more” and “all done” when he is eating.  We also have to use the z-vibe on him, mimic his coos, practice sitting, practice with the iPad technology…. practice.  It is labor intensive and … work.

+
It is really a labor of love.  I once heard a woman speak about how she spent 2 years touching her son on the shoulder to indicate when he should put the spoon to his mouth… until he was able to self feed. Two Years.

I am so grateful for all these things to help my son.  But, there are times when it still really lies on the motivation of parents to move past these tools… to put the tools to necessary use – so development happens – and they aren’t necessary anymore.  So much work.

So next time you see a parent of a child with special needs.  Celebrate any milestone you can. And give the child a high five. … and the mom a hug. Because she probably needs it. 


Thanks Shell…. For letting me Pour My Heart Out.

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17 Comments:

At November 30, 2011 at 7:42 AM , Blogger Tara R. said...

Watching from the outside, it's hard to imagine how much parents of special needs children actually do. It is an amazing commitment of love and time. Hugs to you and your son.

 
At November 30, 2011 at 8:01 AM , Blogger Shell said...

This is so true. It really is so much work- I'm not whining about it- just stating a fact.

Btw, I about had a panic attack yesterday when I realized that EVERY family in the waiting area of my little one's OT office was working on an iPad. And we don't have one. So then I wondered if I was failing him in that. Yeah, that was fun.

 
At November 30, 2011 at 8:52 AM , Blogger Missy said...

I am in awe. You are amazing. I'd like to crawl through the computer and give you a hug right now.

 
At November 30, 2011 at 10:27 AM , Blogger Kristin @ What She Said said...

I can't imagine being in your shoes - I'm honestly not sure I'd have it in me to work as hard as you obviously do. Does that sound terrible? Then again, I guess you never know how strong you really are until your strength is put to the test.

In any case, I don't judge you and I certainly don't think you're whining. I admire you and all other moms of special needs children so much more than I could ever put into words. Reading special needs blogs has made me so much more empathetic toward these moms and kids. God bless you all.

 
At November 30, 2011 at 10:36 AM , Blogger Arnebya said...

I was so happy to read when you wrote Alexander is eating. So happy. And without living a day in your life, I doubt that even this very descriptive post explains fully all the work that you do. Just know that I do get the determination to continue the work even amid how draining the work can be. But you can't beat yourself up for not doing more. And believe me, if we met in person, the hug would be everlasting.

 
At November 30, 2011 at 11:21 AM , Blogger Bonnie@TheFragileXFiles said...

You wrote the post I'm afraid to write. I don't do enough either. I fail my sons every day. I'm a huge slacker. Everybody gives me way more credit than i deserve.

 
At November 30, 2011 at 12:04 PM , Anonymous Teresa K said...

What a flood of memories this brought back! I forget, now that Carson's doing so well, what work it took to get him here. The obsessing over every calorie (an egg has about six g protein... he ate half-ish...), the daily massage and stretching, stuffing his tiny floppy feet into AFO's... oh, yeah. I used to tell him a bedtime story that was an elaborate listing of all the things he could do that he couldn't yesterday/ last week/ last month. While other parents mark milestones we count sidewalk squares! The good news is... it gets easier (sort of). Maybe your brain gets better at the math, maybe Alexander gets so good at eating that even when you don't do the math you notice him chub up and outgrow that outfit you love. Maybe you work out a therapy routine that fits your family really well, and maybe Alexander spends so much time standing at the coffee table watching his siblings play that the stander ends up in the garage. Hang in there, and keep sharing as you're able.

 
At November 30, 2011 at 12:59 PM , Blogger Tiffany said...

As an outsider, I could never imagine what parents of special needs children go through. You are such a strong woman and thank you for sharing a piece of what you do day in and day out.
The love of a child is where a parent finds the strength to continue on. ( at least I think so)
Many hugs.

 
At November 30, 2011 at 1:36 PM , Blogger Kristy said...

You are an AMAZING mom and Alexander is an AMAZING little boy. You all work so hard and it shows. I am so happy to hear that he is eating! What great news. I know how long it can take to feed our little kiddos - sometimes I am sitting at Dylan's highchair for 45 minutes just to get him to finish his meal. Keep up all the good work and keep smiling. :)

 
At November 30, 2011 at 2:33 PM , Blogger Courtney K. said...

I don't have a child with special needs, but I can't imagine how much work and extra pressure there is on you as a mom to "do it all" and handle everything. The fact that you are willing to do whatever to make sure he's taken care of is sign enough that you are ROCKING as a mommy!

 
At November 30, 2011 at 3:49 PM , Blogger Anastasia said...

Every time I read your blog through PYHO I am amazed and impressed by your dedication as a mother. I know it's so hard and that just makes your dedication all the more awe inspiring. You and your family are awesome, in every sense of the word.

 
At November 30, 2011 at 6:24 PM , Blogger Adrienne said...

This is such a great post. First of all, way to go! You are a mom warrior! and second, I agree. It takes dedication and work from parents too. I hate to see kids that would be doing far better if the parents were more proactive. That's hard to say, and I hate to sound judgy, but there are times when I just scratch my head...I'm so glad he's doing soo good!!!

 
At November 30, 2011 at 6:25 PM , Blogger Adrienne said...

And...can I just say. Sometimes I don't feel like doing the work. I do, but it is hard. SO perhaps offer grace whenever necessary b/c that mom might need it.

 
At November 30, 2011 at 10:19 PM , Blogger The Preppy Girl in Pink said...

Kristen, You and Alexander constantly amaze me. You make me realize how much I take for granted some days. You make me want to help other people more. You make me teach my girls how to be more considerate and helpful. I feel like I found your blog for a reason. I feel like I found a friend. xo

 
At November 30, 2011 at 10:48 PM , Blogger Kristen said...

I just have to say... when the day is long - and I come back and read the comments... they overwhelm me. Thanks everyone. For those of you who know - and have been there - thanks for the encouragement. For those of you who haven't been there - thanks for the understanding. The understanding and not the pity. It is a pretty amazing thing - to be reading all the comments from this side of the blog. Thanks!

 
At November 30, 2011 at 11:04 PM , Blogger Helene said...

Your strength and honesty never fails to amaze me, Kristen. This has got to be difficult stuff to put out there because of the fear that not everyone will understand. But I appreciate you sharing your challenges, your fears, your highlights, everything that your day is filled with as a mother of a child with special needs. I could never imagine what it's like but you have a wonderful way of taking us on this journey with you so we do understand.

If I could climb through my computer, I'd give you the biggest hug right now!!

 
At December 1, 2011 at 11:05 AM , Blogger Kim Shafer said...

You speak the words I long to speak and to think we chose this road! After reading your post I had to go back and google half the things you use with Alexander and now I have a list to ask his PT about on Friday. I'm too tired to deal with guilt but it is there, that we aren't doing enough- it is good to know i am not the only one thinking that way.

 

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