Seeking Help and Speech Therapy

In the last 5 weeks Autumn has had so many amazing triumphs.  She has worked so hard and picked up many new skills.  I am sure she will amaze her OT and PT at our next visit (in two weeks).  And I am sure her Child Development Councillor (who works on cognitive skills) will be thoroughly impressed when we see her tomorrow.

Autumn has learned to stand with support; to move into sitting from quadruped (hands and knees); to move out of sitting with great form (I cried when she did this… we worked so hard for a long time); she’s mastered pivoting; and she learned to clap her hands and wave! (Can we picture ASL in her near future?)

Furthermore, she has picked up a new and highly unusual way of getting around… she bounces on her butt while sitting, consequently bouncing herself backwards!  What a silly baby.  So creative and independent.

Can you believe it??  I am one proud mama.  It’s such a thrill to watch her grow and learn.  As she gets a little bit older, I can see her personality emerge more and more.  I love her more and more.  How is that even possible?!

Everyday I am learning something new

Everyday I am learning something new

Yet, while she continues to excel at most of the things we work on, there are some things we are struggling with.

Eating, for one.  This little girl is a pokey eater!  It’s not an overly big deal I think, but I don’t know.  I can’t find any answers.

I’ve sought help from the doctor.

Who referred us to the feeding clinic several months ago…. we are still waiting.

I’ve sought help from the Occupational therapist, who gave me a handout on textures.  It wasn’t helpful…. I already know Autumn can eat purees or mashed food.  It’s chewing/swallowing pieces we are having issues with.  That, and removing food from the top of her mouth.

I sought help from the speech therapist just today… It was our first visit…. and probably the most useless visit of all!!  I guess speech therapists here do not deal with feeding related problems in children, they send us to OT and the feeding clinic.

So, it seems I have exhausted all possible resources.  Where does that leave me?  It’s a lonely and frustrating day when all you want to do is help your baby learn the skills she needs and none of the professionals are able to help.

I went into the speech therapist today expecting to learn more about oral motor skills (the skills necessary for both speech and eating) and hoping to find answers to help with feeding challenges.  I was expecting to discuss different things we could do to strengthen Autumns facial/oral muscles and coordination.  But there was nothing hands on.  We were told that Autumn’s language/speech skills are that of a 5 month old…. Told that we should mimic her sounds, demonstrate new sounds…. etc etc etc…. “sound play”.

Well that’s great, but we’ve been doing this all along.

It was extremely discouraging being told my daughter functions verbally at the level of a 5 month old… when I personally feel she is doing amazingly well.  I love her many “bababa”s.  But the most discouraging thing of all was realizing that the person I was hoping could help me, can’t.

I once again feel like it is up to me.

Thankfully, I have seen that with a little help Autumn is going to flourish to no end (just look at all she has accomplished in this past month!).  I have faith that once I figure out how to help her out, she will ace it in no time.  It’s just a matter of getting there.  It’s just a matter of being motivated through any challenge or road bump.  It’s just a matter of knowing that nothing will stop us from giving this baby the care she deserves!  One frustrating day, is not going to hinder me.

The Best Season of All

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I love this time of year.  It inspires me and motivates me, I feel as fresh and alive as the cool winds.  This is the time of year where I happily anticipate and welcome change.  I reflect on the days past and look forward to the days ahead.

And this year is extra special.  This year I am sharing the fall with someone who has never experienced it before: my 11 month old daughter!

As the weather becomes cool and the skies become gray, the leaves begin to change.  Yellow, orange, brown, red, mixed in with the slow-turners, holding onto their green for as long as possible.  The cool temperatures bring refreshing air.  The kind of air that is “crisp” as you breath in and turns your nose pink.  The kind of air that calls for fall boots and cozy sweaters.  The kind of air that says “come outside, the weathers great”.  So we do!  I am lucky to live in a city where the streets are lined with trees.  Even our core areas are lined with trees that seem to be growing out of the sidewalks.  I am also pleased to live close to the rivers and several nice paths.

I have been happily bundling myself and Autumn up and going for walks or across the way to the park.

Being an observer, Autumn notices the leaves as they fall.  She hears and seeks to find the many squirrels and geese as they mosey around looking for food.  Autumn seems to notice it all.  It’s so rewarding, sharing this time of year with her.

I love this time of year!!

Last year, I remember I was spending more time waiting for buses than I was enjoying the weather.  I had 3 appointments a week with the chiropractor as we attempted to turn my breech baby.  Additionally, I was being seen by my midwives once a week and on several occasions I also visited the OBGYN.  It was a chaotic fall.  But I remember it clearly.  It was also a time of change, both expected and unexpected.  Nothing would prepare me for where I am today.

As I share this season with my daughter, cool walks, cloudy days, beautiful leaves, pumpkin baked goods, my favourite shoes, her new mittens, lattes (okay… I’m not sharing my lattes with her, but I look forward to that day), I find I am happy and content.  The past year has been a whirlwind, gone by so quickly.  I find solace in my time with Autumn, walking outside, feeling slightly more exposed as the trees become bare.  This time of year is my time of reflection and overall I have to say I am happy with all I see.

 

 

“The Special Mother” by Erma Bombeck

I recently had this posted in a Facebook group I am in, and while I do not feel I am special in the least, this short story resonated with me.  Each time I read it I tear up a little, sometimes I full on cry, I appreciate the perspective and find myself relating to the words.  This woman has captured something special and meaningful.  Once again I am reminded how powerful speech is.   

When I read this, I feel there are things I could have said myself: “will never take for granted a spoken word” or “no step will be ordinary”…. oh how I’ve learned to appreciate the small things! 

I remember the days when my beliefs took a back burner, when I didn’t know the meaning of fate and didn’t see clearly the purpose in all I do.  I remember the days when the word “God” meant nothing to me. 

But I have a daughter now, she has brought something unique and unexpected to my life.  And with her arrival, I have been able to remember that my life has meaning and purpose beyond day to day living.  I am aware that some things are meant to happen and that fate isn’t just a word.  I know now that a higher power is present in my life.

I would like to share with you this story and I hope you enjoy it as much as I do.

The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit….
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
“Armstrong, Beth; son. Patron saint…give her Gerard. He’s used to profanity.”
“Forrest, Marjorie; daughter. Patron saint, Cecelia.”
“Rutledge, Carrie; twins. Patron saint, Matthew.”
Finally He passes a name to an angel and smiles, “Give her a handicapped child.”
The angel is curious. “Why this one God? She’s so happy.”
“Exactly,” smiles God, “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”
“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has her own world. She has to make her live in her world and that’s not going to be easy.”
“But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness.” The angel gasps – “selfishness? is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word’”. She will never consider a “step” ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle, and will know it!”
“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice….and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side”.
“And what about her Patron saint?” asks the angel, his pen poised in mid-air.
God smiles, “A mirror will suffice”

Happy to be Taking it Slow

I have come to realize that I am that Mom who is over-the-top excited about everything babies do.  I am constantly amazed by babies, they are so strong!  I watch these little humans, only months of age… crawling, creeping, STANDING (Autumn stood supported for the first time the other day! 10 months 1 week old), mimicking sounds.  It is truly amazing.

When I see other moms with their precious little triumphant babies, I become so enthralled with the skills their children possess.  I cheer!  I clap!  I congratulate both mom and baby!

And usually mom’s look at me like I’m nuts!

They have no idea what to say.

Or what the big deal is.

I am quite alright with this, I totally understand.  Before having my Autumn, I may have been the same.  I may have assumed that all these skills just come naturally to babies.  I may have assumed that all babies developed at a very similar pace.  I may have even overlooked some of the smaller milestones like grasping the hands at midline (who would have thought holding your hands in front of your chest is a milestone?!).

Autumn is my first child and to me, every little detail or skill has become a milestone worthy of praise and excitement.  This is very normal to me!  I am grateful that she is my first child.  Through her I am learning the importance of doing things one step at a time and seeing results as a step-by-step process.  I have also learned how significant each small skill is.  It is all part of the bigger path of development.  She gives me the chance to really absorb and get to know each stage of her development (such as rocking on hands and knees…. I feel very well acquainted with this skill as it’s been going on for months here!  But she still wants to practice this, so we will continue to learn and observe the “hands and knees” positioning).

What I learn with my daughter is likely something I will carry forward to my future children.  By then, I imagine I will be a master of child development, HA!  I feel like I’ll have a visual repertoire of each skill complete with the 1, 2, 3 on how it’s done.  And I will have the patience to work each step. I will find happiness in the small triumphs.

A triumph is a triumph right?

No matter how big or small, fast or slow.

I will continue to be the over-excited mom, amazed at every little thing babies do.  And while I know one day I may have to ease up with the excessive praise, today is not that day  🙂

Staring into Space

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Being small grants us the freedom to experience the wind and sky. Being small gives us the gift of exploration.

Do you ever just stop and look up?  Straight up?  Crane your neck backwards, get-dizzy-if-you-look-up-for-too-long type up??

It is very humbling.  I often stop and stare straight up, scanning the length of buildings, examining where they appear to meet the sky.  I stare straight up, into the branches of trees, and admire the branches and leaves as they weave their own unique web.  Sometimes I just stare at the sky.  And although I likely look crazy to passerby’s, a young woman staring into space, I find a lot of peace in simply looking up.

It reminds me that I am small.  I am but one small person in world of billions.  I am physically smaller than the bounties of nature.  I am smaller than the feats of humanity, smaller than the miracle of immense structures.  Smaller than the world.  Small, but gifted with an unlimited potential.  Being this small grants me the opportunity to explore and become anything.  My reach is unlimited.

Looking up (I mean this literally) makes me feel like there are no limits in my life.  It is a feeling of freedom and awe.  And as I previously mentioned, it is very humbling.

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Looking up and seeing the love of my life in beautiful place, literally.

A Little Bit of Chatter

Who would have guessed that a little bit of “bababa-ing” or “yayaya-ing” could make me feel more connected to you?  At the end of last week you learned these new sounds and you haven’t stopped since.  It seemed so sudden, out of no where you began to chatter with us, telling these grand stories!  I was and still am so, so ecstatic!!

I did not expect to feel this way.  It seems so simple, the ability to make these sounds.  Yet it took you a little while and with a lot of mommy and daddy sitting around mimicking the sounds, exaggerating our mouth movements, over and over:

“baaa…. BA.. B…A”

…you picked it up.  I couldn’t be happier.  This is beyond the grunting and screaming, it is a whole new way for you to communicate.  And I love every consonant you share.  I am so proud, I am so grateful, I am relieved!

Thank you for teaching me a new appreciation for speech and sound.  And thank you for granting me this opportunity to feel as happy as I am now.

An Emotional Roller Coaster

I have been trying to write for what seems like forever, to no avail.

Most days, our life together is so normal and simple.  I am not an exciting person, and you tend to be the same.  Very calm and usually content.  I wonder if you get this from me?  I often feel like you are completely disinterested or careless about what we do, as long as someone is there to pay attention to you.  You only recently have begun showing more interest in toys and activities and I am immensely grateful for this.  I was starting to worry… you did not take much initiative play-wise.  Pool, meh!  Sand and beach, meh!  Songs and games, maybe a little bit more interested… but overall, meh!

I am happy to say that the last time we put you in sand, you picked it up in your little hands and seemed to be a bit more interested!  You’ve also begun pushing buttons on your musical toys and watching the lights flash.  Progress.  And unbelievably reassuring for Mommy!  Thank you Autumn!

It can be hard to put so much thought and effort into activities for you and get no response, how could I not worry?  Hence, I have had many days where I felt a little bit sad.  I was starting to feel sad because I worried you maybe were not receiving stimuli the same as other babies.  I was worried because I tried very hard to amuse you, yet it was starting to feel useless.

I am glad I stick with these things though.  Now that you are smiling, reaching, and responding more, it is amazing!  You’ve begun to scream when you get excited and happy, and although some days, between happy and angry screams, it feels like you shout all day…. I am glad you are starting to show more emotion and interaction.

Although we are still anxiously awaiting giggles!

You have learnt how to sit all by yourself!  It’s all you want to do now.  We had therapy on Tuesday and you are absolutely not interested in your new exercises (which we will now refer to as “conscious play positions”).  Nothing can distract you from Mommy trying to manipulate your legs into a transitional sitting position…. you can not be fooled!  I am quite proud of you.  Your personality continues to develop along with your strength and determination.

We are continuing to work on having you bear weight in your legs.  This is also something I was beginning to worry about.  But a couple days ago, you learned that you can jump in your jolly jumper.  Now, when I hold you in a standing position, you try to jump!  Progress 🙂

Overall, I will admit, I have days where I struggle.  Some days, “those days”, I am afraid you are going to slip through my arms (or someone else’s) because you require more support than your peers when you are being carried.  There are days when you just want to cry and be cuddled, and I feel guilty for not doing any of our “conscious play positions” (are we missing out on valuable muscle and mind developing time?!).  (But there are also days when I happily accept the break and love to just cuddle you).  I have days where I feel sad because I see your baby peers starting to crawl away, while you sit with Mommy.  Will they leave you behind as you get older?  Some days I feel afraid.

But none of this phases you.

You seem to be quite content and happy, always observing the world around you, always surprising us and making us proud.  It can be an emotional roller coaster for me, but as long as you have someone loving you, you continue to be happy.

To other Mom’s of children with Down syndrome- please share the emotional experience you had when your children were young.  What was it like?  What is it like now?