The Working Mom Blues

Being a working Mom ensures many things.  For example, it forces me to leave the house.  It also guarantees that I remember to shower, brush my teeth, change my clothes and run a comb through my rebellious hair.  I get to talk to more adults, which is also a bonus, although most of them have some kind of mental illness (or are really not very grown up at all).  Still, it keeps my brain from turning to complete mush from the constant noise or too many episodes of The Price Is Right.

It also makes sure that I miss out on a lot of things too.  There is an old Nursing chestnut that says something along the lines that you get to spend all the holidays with your friends... at work.  Shift work makes it difficult to schedule things like appointments, which, in a house that has Specialists up the wazoo, means that I don't always get to go.  We also have three kids with commitments at various points in the day so the scheduling tends to get a little interesting.

Last week Sean took Wyatt to his first speech assessment.  According to both my husband and the reports that came home, Wyatt is doing very well in this area.  To be honest, I wasn't sure what to expect.  Other than making different sounds, what could they evaluate?

Officially, the exam is called an "Early Response to Learning Intervention (ERLI)" and is given through ErinOaks.  In the course of the hour or so that they spent there, Wyatt was evaluated in a variety of areas.  Each area was graded as "No concerns were observed or reported in these areas", "Difficulties were identified in these areas" and "Continue to check progress in these areas".  Thankfully, notes were given as well, so that we could understand exactly how he was meeting or not meeting each of the assessment criteria.  Wyatt was assessed in the following: (note, this is taken directly from ErinOaks Kids ERLI form)

• Social Communication [The child's ability to communicate and connect with others, including greeting, making eye contact to communicate, sharing interest and enjoyment]
• Play Skills [Play skills an communication development are closely related]
• Understanding Language [The child's ability to understand language, including following directions, responding to questions, understanding words and concepts]
• Expressive Language [The child's ability to express his or her wants, needs, ideas and feeling s in a variety of ways including gestures, sounds and words]
• Speech/Articulation [The ability to pronounce speech sounds and coordinate speech movements]
• Stuttering
• Behaviour
• Other [e.g. feeding/swallowing, motor skills]

Wyatt rated "No concerns" in his social communication, which was no surprise to anyone here.  He is very vocal.  There were also no concerns with stuttering or his behaviour as well.  I was happy to see that there were no "Difficulties" noted;  most of the above was rated as "Continue to check progress".  The therapist provided a list of behaviours/activities/actions that she observed Wyatt performing that we are to continue to build on.  For example, under play skills, she indicated that he should continue to explore toys and working on being able to bang them together.  Under "Understanding Language", anticipating daily routines and attaching meaning to familiar terms were listed.  What do these have to do with speech you may ask?

Language acquisition is a major part of our development.  In order to communicate, you need names for things.  We have words for thinking, remembering, knowledge, reasoning and communication.  By attaching meaning to a specific routine for example, such as "lunch", Wyatt will learn an important association. Children with Down Syndrome are visual learners, so attaching sounds (words) to a witnessed action is also an important part of this.  Hopefully, at some point, Wyatt will be able to hear "Where's Daddy?" and turn his head to find him.  To typical children, this is a very easy thing to learn.  Zoe has been able to do this for months.  For those with DS, it takes a lot longer as they have to develop each connection individually.  He has to connect Sean's "Sean-ness" with the sound of "Daddy" (which is tricky for sight learners;  he learns my mouth shape but the sounds I'm making might as well be an ambient radio on in the background for all the relevance they hold).  Wyatt has to develop the ability to think of the word "Daddy" when he sees Sean.  He also has to further his object permanence and his awareness of himself and other beings in space and time.  Our ability to learn language also affects our ability to develop memories;  with that in mind, he has to have the words "Daddy" and "Where" in his repertoire before he can start remembering where Daddy actually is.  Finally, he has to connect those words and a memory with an action of his own so that he can turn his head and look for "Daddy"... which, in itself will take longer due to the slow reactions of his muscles. 

With my absence most of the time, it will be Daddy that Wyatt remembers more.  I will say that there has been great improvement since my return to work;  now, when I get home Wyatt greets me with the biggest smile and an enthusiastic giggle-shout.  A few months ago, it would take time for him to warm up to me after a prolonged absence.  In a little selfish sense, this stings a little, however in the bigger picture as long as he is making these connections, it doesn't matter who they are with. 

There are days that I feel that I am missing out, it is true.  However, I stop and remind myself that I am fortunate to have my husband at home and that at least one of us is sharing all the major moments with the kids.  Quinn spent a lot of time in day care and as a result we missed a lot of "firsts"; that won't be the case here.  Not being home all the time makes what time we do have together that much sweeter and I can savour it that much more.  After four 12 hour shifts, his laughter is music for my soul.  He seems to smile with his whole being; he is almost radiant as he chases away any lingering blues that I might have.   As he continues to further his skills and starts to sprout teeth, we will be closer to that elusive "Mama".  Until then, everything he does gives us plenty to talk about.


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Better Living Through Peek-A-Boo

I haven't been feeling very brave.

I knew it was here somewhere...  It must be under the 19+ loads of laundry that I have dealt with (so far!) in the last 4 days.  Maybe I left it in my work bag?  Perhaps I kicked it under the couch by accident.  Whatever, where ever... the last couple of days I have been wandering around like the cowardly lion, looking for my courage.

Courage really isn't the right word for it either.  Neither is "special" or "blessed" or any other adjective that people use to describe "Special needs Moms". You know that thing that makes my magic helmet and the proverbial double edged sword less heavy?  That. 

The cause?  Nothing really.  Not any one thing and everything, all rolled up in puff pastry.  Probably a little bit of a crash too, as we are still coming down off the kids birthday's and Wyatt's new-found sitting prowess.  It happens.  No matter how hard you try, you do have days where you are worn down.

I came to a realization the other day as I stood downstairs at my bar, waiting for my morning cup of Tassimo.  I glanced over at a stack of books and saw our copy of "What to Expect the First Year".  As I stood there, waiting for the last few drops of coffee to fall, I smirked and half chuckled to myself.

There is no manual with a special needs child.  There is no manual for Down syndrome.

I used this book religiously with Quinn, our eldest.  Each month, I was delighted with each new thing that he had picked up.  Most of the time, I lauded him for being "ahead".  As parents, we dream and delude ourselves all the time.  We aren't supposed to compare our kids with others, but we do it without fail.  "See that?  With that fine motor control, he could be a surgeon or a dentist!"  "With those long fingers, he could be a concert pianist!"  "He's three months ahead with his speech!  Let's hope he stays out of public office..." and so on.  Constant comparison, constant validation.  As the title says, I knew what to expect with him.  There were very few surprises.

Zoe?  Pretty much the same thing.  She will always have the "six weeks corrected" with each of her milestones.  This makes it a little worse in a way, as "...she certainly isn't acting like a preemie!  Look at how far ahead she is!" 

Then, there is Wyatt.

With him I got a list of facial features, potential physical ailments and things he cannot do.  There is no set list for "can" or "will" or "when".  Information is partial at best.  There is no comparison, no handy yardstick. Instead of a book telling us "What to Expect..." we now have to embrace a whole new philosophy:  "In His Own Time".  There is no instant gratification with this one.  It takes a metric f☠ckton(ne) of patience and another still of sweat equity.  And time.  Lots and lots of time.

To me, everything happens for a reason.  As the fates would have it, I lost "What to Expect..." until a couple of weeks ago. I remember looking for it frantically at a few points, hoping to find an answer to some obscure question or another.  It's being lost until now has turned into a blessing in disguise, really.  For all our good intentions, month by month, week by week detailed comparisons between the twins would have been inevitable.  Contrasts would have been more obvious.  The differences at various points would have been heartbreaking.  Instead, this book remaining lost for so long kept everything a little more vague.  At least in this one instance, a little bit of ignorance was bliss.

I would not begrudge Wyatt a single thing.  Any dedicated parent will say that they would do anything for their kids.  I'm just putting my money where my mouth is.  Each and every thing has to be thought out; you constantly have to be aware of what skill you are trying to develop and what the ramifications are.  This morning for example, we had half an hour of controlled kneeling and quiet play therapy, followed by fun tambourine time.  I have learned that Zoe will be intrusive, no matter what you do;  while I am changing Wyatt's diaper, she is trying to step over him as she cruises around me and chatters.  Instead of pushing her away, I set her up on the double pillows too.  The babies got some face to face talking time as I gently held my sons hips and shoulders in alignment and his knees together.  They pulled a toy back and forth between the two of them, both of their chests on the pillow and when that became tiresome, Zoe rolled over and lay half propped on them, still chattering over her shoulder to her brother and I.  They each got a tambourine and after the usual back and forth trading between the two of them, I took a little time with each of them and explored the different sounds and actions.  Wyatt at first was sitting up, but he was obviously tired so he lay propped up on a nursing pillow and held his tambourine (and the maraca he was hitting it with) up over his head.  We patted, hit, shook and head butted our jingly noisemakers for a couple of minutes until Sean and Quinn returned and Zoe almost bowled me over as she ran for the gate, screeching for joy.  Sounds like a fun half hour, right?  The kneeling was to continue strengthening his core, getting his hips and legs ready to that unsupported and be able to get those knees under him so that he may learn to crawl.  Bringing his hands together and banging objects together are not milestones per se, but are important skills to refine as they lead to so many others.  Finally, connecting the dots between action and sound is an ongoing lesson, especially with kids with Down syndrome who are so visually oriented.

With Quinn, I tried to add certain skill enhancing activities, just like a lot of parents, simply because I could.  If I forgot or didn't have enough time, it wasn't that big of a deal.  He picked things up very easily.  With Wyatt, I have to.  Like Yoda says "...There is no try."

I found my "brave" last night.  Little did I know it was hiding under a blanket.  Wyatt would not sleep for love nor money and he was hanging out with us downstairs.  I had a fire going and a glass of wine in my hand and I was getting a little bit discouraged with him as he would not sleep, despite my best attempt at a Zen atmosphere.  I took another sip and started scrolling through my phone.  I heard a "YAH!" and looked over.  He grasped the edge of his blanket in both hands and pulled it up over his head.  Tired, (as we have been working on peek-a-boo games since they were very young) I gave a half-assed "Where's Wyatt?", only to have him quickly drop the blanket and grin at me.  I could not have been more surprised.  I gave him the "There he is!" and looked over at Sean.  He asked  "Where's Wyatt?  Where's he at?"

The blanket went up again.

Then it came down.  "THERE HE IS!!" we both yelled in unison. 

We did this for a good ten minutes.  Sometimes he would peek around the edge of the blanket and grin at me.  Sometimes he would get distracted by the TV and then yell at me and make different sounds at me to continue our game. He would go back and forth between both of us.  It was awesome.

I know... it's just peek-a-boo, right?  Not really.  See, much like our kneeling and tambourine time, it means a lot more.  It gave him an opportunity to communicate with us, one that he initiated himself.  We got to make eye contact and react to one another.  It also showed us that he is working on object permanence, that he has made the connection that when his vision is blocked by something (in this case the blanket), we and the world still exist.  As this is a visual task, it is not surprising that children with Down syndrome progress with it faster.  He showed us that cognitively, he is coming along.

For us, it was a much needed shot in the arm.  Physically, the evidence was there that he was progressing.  Now we have proof that everything else is too.  Each little step answers a few more questions and gives us a little boost that keeps us going.  Forget chemistry, we have better living through peek-a-boo.

Bravery?  Where are you?

Oh there you are!  I see you...



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Don't forget to vote for Down Wit Dat as About.com's Reader's Choice for Special Needs Parenting Blog.   You can vote once a day, every day until March 21 using an email address or signing in through Facebook.  You can vote HERE.  -Jxox