Speech and Language, Part 2: Strategies for Early Intervention (31 for 21, Day 25)

According to all the experts, early intervention with Down syndrome is the key, especially in regards to speech and language development.  This can seem a bit daunting, however with the aid of an early intervention team, you can create the best environment possible in which your child can learn.

The following information is taken from Buckley and Le Prèvost's article Speech and Language therapy for children with Down syndrome (2002).  So far, it is the best one-stop source of information regarding early interventions with speech therapy that I have found. Listed by age group, it outlines the goal centered approach that is often used.

Preschool

Knowledgeable therapists who are up to date with the latest research materials are important to this age group.  As kids with DS tend to have issues with hearing, speech and memory issues it is important to focus on auditory discrimination, oral-motor skills, speech and language work. In the first year, home visits should occur at least monthly. if not more frequently.  When the child is over a year old, other methods can be employed, including groups sessions. Groups are particularly helpful as children tend to mimic each other.

Goals for the first year

• Create an environment that encourages communication, including understanding how speech and language develops and the specific needs of the child
• Provide support for feeding, including oral-motor activities
• Encourage various communication skills:  eye contact, turn taking, pointing, joint-referencing
• Improve auditory discrimination by targeting speech sounds, including those in the phonological loop and babbling.
• Encourage signs and gesturing to augment comprehension

Two Years of Age

• Continue to foster an optimum environment for communication
• Keep a record of speech sounds as work is continued to support hearing and speech sounds.
• Teach word comprehension through play:  games, objects, pictures and actions.  Keep a record of words spoken/signed
• Encourage constructions of two or three words through play and imitation
• Address any other issues (due to high incidence of ASD)

Three to five years of Age

• Continue to foster an optimum environment for communication
• Continue to target hearing/speech production; keep a record of speech sound and progress
• Teach vocabulary, grammar and syntax using play and visual aids such as books.
• Keep a record of vocabulary and comprehension.  
• Continue to address any other issues (such as ASD)

Primary School

It is ideal if children receive speech and language therapy in school.  Although individual children will vary greatly in skills, all will understand much more than they can produce.  As with the younger ages, therapists working with children with Down syndrome between 5 to 11 years of age should be knowledgeable re: current research, development, working memory, etc.  For this age group, they should also understand how reading supports the development of vocabulary, grammar, and clarity of speech, as well as the importance of auditory discrimination for speech sounds, phonics and working memory.

Goals

• Focus on speech, vocabulary, grammar and communication.  Keep detailed notes of progress
• Separate comprehension and production goals for vocabulary and grammar
• Goals for speech, such as articulation, phonology and intelligibility
• Assist teachers:  with incorporating speech/language goals into lesson plans and encouraging use of visual aids/reading to assist with language
• Assess oral-motor skills, such as feeding, chewing and drinking.
• Review goals with parents and teachers
• Continue to foster an optimum environment for communication, ensure all (including teachers) understand needs of child, goals set and why.
• Continue to address any other issues (such as ASD)

Methods for Goal Implementation

• Seen and assessed monthly at school.  All involved (teachers, parents, assistants) should have activities to include daily
• Activities to be created by speech/language therapist
• Additional weekly or monthly sessions with speech/language therapist to assess progress and change approach if necessary

Secondary School

Therapy should continue with this age group;  however age-appropriate modifications should be made to activities.  Skill level will vary, however comprehension will still outweigh the ability to express one's self.  Continue reinforcing that reading supports the development of vocabulary, grammar, and clarity of speech, as well as the importance of auditory discrimination for speech sounds, phonics and working memory.  Social skills, such as conversation may need to be addressed further.

Goals

• Focus on speech, vocabulary, grammar and communication.  Keep detailed notes of progress
• Separate comprehension and production goals for vocabulary and grammar
• Goals for speech, such as articulation, phonology and intelligibility
• Assist teachers:  with incorporating speech/language goals into lesson plans and encouraging use of visual aids/reading to assist with language
• Assess oral-motor skills, such as feeding, chewing and drinking.
• Review goals with parents, teachers and teenager
• Continue to foster an optimum environment for communication, ensure all (including teachers and teenager) understand needs of child, goals set and why.
• Continue to address any other issues (such as ASD)

 Methods for Goal Implementation

• Seen and assessed monthly at school.  All involved (teachers, parents, assistants) should have activities to include daily
• Activities to be created by speech/language therapist
• Additional weekly or monthly sessions with speech/language therapist to assess progress and change approach if necessary

 Adulthood

Studies have shown that therapy can continue to improve speech and language skills well into adulthood.  However, more resources are needed for this age range as they are generally not readily available

Buckley SJ, Le Prèvost P. Speech and language therapy for children with Down syndrome. Down Syndrome News and Update. 2002;2(2);70-76.

Therapy Thursday: Speech and Language, Part 1 (31 for 21, Day 18)

The development of speech and language is important for many reasons, including the formation of both cognitive and social skills.  To children with Down syndrome, early interventions in this area are very important.  Cognitively this is important as:

• Increased vocabulary translates to increased understanding of the environment
• Using language increases thinking and reasoning abilities

Whereas socially, language:

• Gives the ability to navigate through world
• Helps control behaviour (by being able to express thoughts, feelings and desires)

The delays with Down syndrome are not universal;  not only do they vary in severity between individuals, but they also occur only in certain developmental areas and not others.  In regards to both speech and language, this area is fragmented into some skills being strengths and others 'weaknesses'.


Strengths

• Social development
• Social Understanding
• Communication (non-verbal, gesturing) 
• Visual short term memory 
• Visual-spacial processing
• Perception
• Socialization
• Development of daily living skills

Weaknesses:

• Development of spoken language (phonetics, syntax)
• Problems with speech (planning, articulation, phonology)
• Delayed acquisition of vocabulary (which is understood much before it is used) in early years.  (This becomes a strength however, by the teenage years)

'Receptive language', that is, the language that is understood, is much more developed than 'expressive language', or the language that is able to be spoken.

There are a variety of reasons that the development of speech and language are impacted by Trisomy 21.  They include:

• Impairments of brain functioning which impact the phonological loop of working memory
• Hearing deficits (including conductive, sensorineural)
• Oral-motor difficulties (which will impact speech-sounds and word production), found with structural, muscular or innervation differences.
• Vocabulary delays

[Next week:  Strategies for early intervention]

Buckley SJ, Le Prèvost P. Speech and language therapy for children with Down syndrome. Down Syndrome News and Update. 2002;2(2);70-76.

Martin, Gary E., Jessica Klusek, Bruno Estigarribia, and Joanne E. Roberts. "Language Characteristics of Individuals with Down Syndrome." Topics in Language Disorders 29.2 (2009): 112-32. Web.

Therapy Thursday: All About the Crawl

Like any other parents, we are excited when our children reach their milestones.  Our son Wyatt, who has Down syndrome, is no exception.  However, with his cardiac issues and his prematurity, he has some added challenges that even his peers with Trisomy 21 do not.  At this time, at almost 20 months of age, he can expertly commando crawl, sit up on his own and has begun grasping the edge of things and attempting to peep over.  He is not pulling himself up, standing or creeping.  At times it can become frustrating and it begs the question:  is there something that we can do to "speed up" this process?  Right along side this comes the parental guilt:  are we doing the right things for our son?

There is a lot of literature out there about treadmill walking;  I will not deny that the research looks promising, especially with getting kids who are creeping (on their hands and knees) to the walking stage weeks earlier. As it turns out however, commando crawling is an extremely important stage of development that helps map and incorporate all the senses and should therefore be given as much attention as possible. 

When a child learns to crawl on their stomach, they:

• learn to focus their eyes on near objects
• discover the placement of their torso, legs and arms through tactile stimulation with the floor (develop proprioception - the awareness we have of our limbs as we move them)
• Use almost all of the major muscle groups
• Learn co-ordinated movement (especially 'cross pattern movement' of right leg, left arm then left leg, right arm)
• Learn muscle balance (the ability to steady one's self using their muscles, primarily those in the 'core')

Co-ordinated movement is very important as it is a skill that we use all our lives.  Developing 'cross pattern movement', that is the ability of simultaneously moving the right foot and left arm, then the left foot and right arm, is used in all forms of human movement, including walking.  During belly crawling, the arms, legs and torso receive sensory (tactile) information that helps the child improve their development of such movement.  Almost all the muscle groups are used and it is only by learning to alternate the flexion and extension of their joints that the child will crawl.  The more the muscles are used, the stronger they become and in turn, the stronger the crawling becomes.  It is in this way, the child develops their arms, legs and trunk;  in conditions such as Down syndrome where there is lower muscle tone and looser ligaments, this is a very important stage.

As mentioned previously, crawling utilizes tactile and proprioceptive receptors throughout the body.  The information received by these receptors during crawling comes simultaneously from both the right and left side of the body.  As the child becomes more adept at crawling and integrating this sensory information, they further the development their tactile senses and in turn continue to develop their muscle tone even further. As well, they develop muscle balance, learn to use utilize vestibular balance (balance that is monitored by the sensory system in the inner ear) and continue to develop their proprioception.  The more all of this is developed, the stronger the muscles and sensory connections become. 

Some children with Down syndrome may take even longer than their peers to progress from a commando crawl to a creep as they may require more input and time to make the necessary connections.  However, continued practice has shown to provide a strong foundation for future movement.  Wyatt is one of those children.  Allowing him to continue practicing his crawling and encouraging him to creep (along with his other exercises, such as weight bearing) will only strengthen his motor and sensory skills and give him the best possible practice for when he does begin to walk. 

Abdel Rahman, Samia A., and Afaf A M Shaheen. "Efficacy of Weight Bearing Exercises on Balance in Children with Down Syndrome." Egyptian Journal of Neurology, Psychiatry and Neurosurgery 41.1 (2010): 37-46. The Egyptian Journal of Neurology, Psychiatry and Neurosurgery. Web. <http://www.ejnpn.org/Default.aspx>.

Bruni, Maryanne. "Occupational Therapy and the Child with Down Syndrome." Down Syndrome: Health Issues. News and Information for Parents and Professionals. , 2001. Web. <http://www.ds-health.com>.

Doman, Robert J., Jr., and Ellen R. Doman. "Down Syndrome: The Importance of Crawling on the Stomach." The NACD Foundation 22.12 (2009): n. pag. The National Association for Child Development. Web. <http://nacd.org/index.php>

Winders, Patricia C. "Physical Therapy & Down Syndrome." National Down Syndrome Society. National Down Syndrome Society, Web. <http://www.ndss.org>

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What a Long, Strange Trip it's Been

The last little while has been a complete blur of appointments and late nights.  Copious amounts of carbs have been consumed (and cheese, most often together).  Much sleep has been lost or interrupted.  Tempers have been a bit short on all accounts, including both of us, the kids and the people that we have had to interact with.  At various points, this past week has seemed to never want to end.

It started the day after the birthday party (Monday, April 23rd).  We had an OT visit where several things were looked at in detail.  One, how well Wyatt's mobility has come along in the last few weeks.  Since the last update, he can make his way across the floor, half dragging, half commando crawling.  We have not seen him sit up (by himself) since the party, however he has come very close several times.  It's probably like the rolling thing;  we won't actually see him doing it for a while.  We'll just look over and assume he just teleported, or in this case, was magically repositioned while we weren't looking.  We are trying to get him to understand what his legs and feet are for (other than additional hands);  we have a variety of sitting/kneeling/bent over positions for him to practice and to get used to putting some weight on his legs.  So far, not much, but we are trying.  Point of interest number two:  how far his eating skills have come in the same amount of time.  We talked about finding a good time for another speech-language assessment before the OT left.  We should have an appointment by our next visit.

The following day (April 24th) meant an appointment with the pediatrician for both Wyatt and Zoe.  I don't know about you, but a snotty receptionist can really set me on edge.  This one in particular seems to have majored in Passive-Aggressive with a minor in Bitch.  The day before, she had telephoned to confirm our appointment.  During that call, no actual appointment time was mentioned when she spoke to my husband; I assumed I had the correct time listed in my phone.  You will imagine my surprise as I blustered into the office, 15 minutes early (for a change!) only to be met with cold silence.  Once I had dug out our health cards and settled my daughter (who had just had what could only be a harrowing stranger experience in the elevator with a kindly old man who told us all about his twins), I turned to face the receptionist.  She barely made eye contact, quickly scooped up the cards and said quietly "I just called your house."  "Oh?"  I answered, confused.  "What's wrong?"  "You're half an hour LATE!" she informed me in clipped tones, barely containing her hostility.  I whipped out my phone to check the times and surprise, there was no match.  For some reason, our appointment had been moved to 9:45.   My husband (to the receptionist's surprise) walked in a minute later and reminded her that she did not mention a time on the phone and therefore, did not confirm the appointment properly. Mistakes had been made all around.  There was another period of awkward silence, where I prepared to get comfortable in the waiting room as I figured she would now make us wait.  A few minutes later, she approached the babies with artificial sweetness and told us that it was time to come in.  We maneuvered our beast of a stroller through the narrow hallways into the exam room and began to get them undressed for their weigh in.

Aside from that little bump, the rest of the appointment went well.  There was no one else in the office at that time, so the doctor was able to see us.  Zoe now weighs 9.14 kg (20.1 lbs) while her now little brother Wyatt weighs 7.95kg (17.49 lbs).  They are both small for their age, at 70cm (27.6 inches) and 67cm (26.3 inches), respectfully.  Their big brother Quinn was 25 inches at birth, just to offer up a little comparison.  Both rank somewhere in the 5th percentile for height on their respective charts (although Zoe has crept up a bit in the weight department).  Numbers aside, both are happy, healthy infants who are doing well in their own way.  Wyatt attempted to sit up while we were there, which made the doc happy.  Zoe wasn't too keen on walking barefoot on a cold floor, so she did not get to show off her running prowess.  The doc made sure that we got an actual appointment card this time and we took our leave.

Wednesday (April 25th) was the ENT.  Sean took Wyatt by himself, as it was an early morning appointment and it interfered with Quinn's schoolbus time.  I was expecting the boys home shortly after 10 but they didn't arrive until 11:30 or so.  I was a bit confused at first, but Sean explained that our bad doctor karma from the day before had spilled over into this appointment as well.  Although they were on time, the ENT was not.  After sitting for almost an hour, the doc wandered in the front door, ignored what was now a packed waiting room, went straight to the back and had the first patient sent in. It was apparent that he was in a shitty mood by the time Wyatt's name was called;  he then proceeded to take it out on Sean.  We haven't been exactly diligent with remembering to put drops of mineral oil in Wyatt's ears (to keep the wax loosened) and the doc let Sean know a little more brusquely than necessary that this wasn't cool.  In fact, his tone suggested negligence.  He even went so far as to accuse Sean of using Q tips on him which, if you don't know, are a no-no with ears as they are self cleaning (Q tips just impact the wax).  Sean tried to explain how we never use Q tips and clean only the external ear and when that was completely ignored, he half-desperately threw in a "you know my wife is a nurse, right?"  for good measure.  This all had very little effect on Dr. Grumpypants who continued by demanding to know when Wyatt had a specific hearing test done.  We do keep on top of all his hearing appointments, but lets face it, we have no idea what exact tests are taking place, just what the results are at the end.  This was not an acceptable answer either and prompted him to place an angry call to the audiologist's office. After extracting the gunk from Wyatt's ears (which, wasn't too bad at all), the boys were then sent back to the waiting room to wait.  During that stay, Sean overheard the secretary talking to the audiologist's office and learned that the specific test that the ENT was peaking about was not done at the last appointment... as it had been done at the one before.  This fact would have been apparent if he had bothered to read Wyatt's chart. A more sheepish ENT called them both back in to let them know the results of the hearing test and that based on that information and the examination that he had just performed, Wy's ears are just fine, thanks.  See you in 6 months.

Flash forward through a whirlwind of my 6 year old's actual birthday (April 26th), one twelve and one 16 hour night shift (April 28th and 29th).  It was now Tuesday of the next week (May 1st) and time for Wyatt's sleep study at Sick Kids.  Prior to this, we had to fill out a sleeping/eating log for 10 days;  it was only through some miracle that I remembered to yell at someone at the last minute to grab it as we were going out the door.  Even for overnight, I had to take a lot of stuff for me and one baby.  Jammies, diapers, wipes, cream, pillows, emergency bottle, Tylenol, toys, 'whoosh whoosh bear', the stroller to push all our stuff around in... plus I brought the laptop "just in case".  Although it turns out that there is a complementary TV in the room (and free WiFi!), I wanted the ability to play a movie or write/fool around on the internet if I couldn't sleep.  I figured that, much like sex in the champagne room, there was no sleep in the sleep study.  I had no idea how right I was going to be. 

It was a good thing that we arrived early as it gave me a little extra time to get lost.  It's a pretty straightforward hospital in most respects, but you have to trust me, getting lost is a specialty of mine.  Sean claims that I have a compass in my head like everyone else, but unlike everyone else, mine is broken and just spins.  I do make up for this with my map skills...  To prove this point, seconds after I discovered a wall map, I found the Atrium and the elevators that I needed.. 

Sick Kids is a fabulous place... I have mentioned this before.  The main elevators are a sunny yellow and the whole place looks like it was designed by a toymaker.  However, if you have vertigo like me, it's a little unnerving getting from the central elevator hall to one of the quads. 

You can see the yellow elevators on the left.  Photo courtesy of skate_simmo

We were greeted by our Tech who assured me that they do sleep studies on babies all the time. In fact, last week he had three babies there at the same time (the lab has four beds).  We were shown to our room and I set everything up while Wyatt got to play in his crib a bit and stretch out after the car ride.  I realized somewhere during my exploration of the room that psychiatry has ruined me:  the entire time I was setting up, all I could think of was how unsafe the room was.  Including the closet, which was just the right depth and had a bar in there that someone (small) could hang themselves with.

Our room.  My daybed is in the back there

My bed.  I've slept on a lot worse, trust me.  For my convenience, I'm right next to the hanging closet.

Baby logistics is another specialty of mine.  Knowing that I had to feed him for him to go to sleep and assuming that there was a tangle of wires in his future, I had to work out how we were going to do this.  Our Tech and I talked about it and he would come back to wire my son up when he started to look a little sleepy.  I tried to make Wy feel as comfortable as possible;  he had a few toys there, a few homey smells and I set up the laptop and streamed some music for him (they have a radio on all night for noise and company).  He started to look a little droopy and I called our dude in to (literally!) hook us up.

For those that don't know, during a sleep study you are monitored for quite a few things.  Your heart rate, your breathing and your oxygen/CO2 levels are important.  They also monitor brain waves so that they know how asleep you really are. Finally, they monitor movement, to see how restless you are.  Basically this translates to an ECG, an EEG and an oximeter.  There was also a camera in the room and an observation window if needed.

In total, there were about 20 'leads' or wires about his little person.  Two on each of his legs, four on his chest and the rest on his head.  There was also a O2 sat (oximeter) on his toe an a CO2 monitor on his chest (that was relocated to his back in the middle of the night).  He looked like a little Borg.

Resistince is futile.  (He's not crying BTW, just mid-babble)

He got a little Teletubby hat made out of some Surgifix (stretchy tube mesh that they put over IV's and lines and things) to keep the wires on his head.  The Tech put a towel over the lead box on the bed hoping that Wyatt would forget it was there and I was given the OK to feed him.  I set up shop beside the bed, gingerly pulling on the wires all the while hoping there was enough slack.

He wouldn't sleep for love nor money.

Usually he falls asleep during his bedtime "snack".  No dice.  I whipped out a bottle of homogenized and heated it up for him.  Nope.  At one point I  turned on the end of the hockey game, hoping he'd get tired (he watches a lot of hockey with Daddy if he can't sleep at night).  We called Daddy, we sang songs, we rocked, we burped, we got Tylenol.  Finally, about 10:30 he went to sleep in my arms.  I carefully tucked the towel underneath him so that he would not immediately roll on the wires (or catch them in his sleep), put up the side rail and tiptoed to my cot.  I didn't realize how tired I really was until my eyes closed while I was typing on the laptop.  I shut everything down, pulled the blanket over me and drifted off. 

At 2 am I woke to him stirring and was at his side a minute later when he started to cry.  Once he is down, Wyatt does not wake up in the middle of the night unless he is sick.  What I found when I got there was pretty much heart stopping:  all the wires were wrapped around his neck.  I sat my crying boy up and started to gently un-garrote him;  he looked like a kitten tangled in a ball of yarn.  At one point I had to go get the Tech for help as I was afraid of dislodging everything.  It took a bit, but we were able to free him from his wire-y prison. 

I am sooo tired!  I also HATE this hat!

For his trouble, he also ended up with a nasal cannula, which he also hated.

This thing is 'teh suck'.

You can bet that he was wide awake after that, so I put the radio on over the phone and held and rocked him.  He kept trying to pull out the cannula and that one purple wire in the photo above, so the only thing I could do was to put him on my left shoulder, tuck his one hand into my armpit, hold him (under the wires) under his bum and hold his other arm down with my right arm as it held him over the wires.  And rock.  Which I did...  For a solid hour.  I thought he was asleep at one point and tried to put him down but it didn't work as he was crying and rolling and threatening to get tangled up all over again.  Finally, he was a sleeping rag doll again around 3:15 and I tiptoed back to my cot.  I had a hard time settling as well;  I think I got back to sleep around 4, although I woke up several times to unfamiliar hospital sounds.

My eyes opened again at 10 minutes to 6, so with a sigh, I started quietly packing up the room.  The test ended at 6 and our Tech was there promptly to unhook Wyatt from his torment.  We turned all the lights on and found my little lamb sound asleep.  I hated to wake him up but it was time to go.

Wakey, wakey Wyatt.

The conductive jelly that was in his hair, despite the reassurance that it was water soluble, would NOT come out with warm water and a cloth.  I got him dressed, packed up the room, stripped the beds and was out by 6:30.  I managed to get lost a completely new way before (gratefully) finding the Whaaambulance and my family waiting for me outside the Elm St. entrance.  We rocketed home in the fog and by afternoon, all 5 of us went down for a nap.  After a nice bath, Wyatt also had 95% of the tape and goo out of his hair.

My week did not end there as I had a 12 hour night shift the next night (May 2nd).  I also start a new 4 day tour tomorrow (May 5th) but the kids have settled back into their routine.  I won't know the results of the study for a while.  In fact, I'm not sure how I will find out exactly;  we will probably hear from one of his doctors and/or get a phone call or a letter.  I do know that while I worked the night away, everyone slept very well at home, in their own bed. 

It's been a busy, crazy, cranky and tiring spell for Team Logan, but we have come out the other side of it.  I know I will be happy to see Wednesday morning (May 9th), when I start my next run of 5 days off. One of the good things about blitzing through a bunch of appointments is getting them all over with... which we have, until the next go around in a few months time.  In the meantime, we won't be idle waiting for results.  Instead, life will go on as it does for my raucous household.  Full of laughter, life and love.

Now that's worth the price of a few crappy nights sleep, isn't it?

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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Sittin' Pretty

Life has been kicking my ass lately.  Stress is high, motivation is low.  Haters gotta hate.  Between appointments and bookings and weekly therapy and work and the never ending train of things going by, I've found myself impatiently waiting for sight of that caboose.  Thankfully here is a break in our schedule, this train has finally passed and the crossing bar is going up.  I'm off for a few now and I could almost hear the engine revving in my head to get the hell out of Dodge. Which I did, as soon as the lights stopped flashing.  Zoom!

Team Logan has been hitting the milestones hard in the last while;  there have been quite a few "firsts" and realizations with our little brood.  For example, we seem to have a finite amount of teeth in this house.  Zoe has sprouted three little pearly daggers, while her big brother Quinn has lost two and is possibly working on a third. The first one to fall came out by accident;  Quinn was running around the living room and slipped and bumped his mouth on the couch.  There was blood... lots of it.  He was pretty freaked out at first until I explained a few things.  1) the bleeding would stop eventually and 2) his hysterics at the sight of blood would have nothing to do with [this weeks goal of] becoming a doctor.  Thanks, Wonderful World of Psychiatry. 

His second tooth came out a few days ago as I "accidentally" popped it out as I was "assessing" it.  His two adult incisors are growing in at a furious rate and the baby tooth had fallen over and had started to imbed itself sideways in the gum.  After the initial shock and surprise (and less freakout as there was less blood), it lay in it's jewelry box totally forgotten about for two days.  He finally remembered to put it under his pillow last night and was rewarded with a dollar.  He added it to the five dollars he got for his first tooth and is [quote] a happy miser [end-quote]. 

Zoe's latest kick is shouting.  I don't mean yelling as she is hungry/tired/hurt, but rather shouting for shouting's sake.  She'd make a great Vogon guard.  Her babbling just seems to be set on 11 at all times and when not exploring the endless permutations of "Dada", "Daddy", "Bob" and "Bop", (complete with wild hand gestures) she works on her version of The Who/CSI Yeeeeaaaaah!.  At all hours. At random intervals.  It's especially charming after a couple of night shifts. *shiver*.

She's also almost walking.  The cruising is one handed at best and every object that she can roll or shove across the floor is an assistive device.  This includes (and is by no means inclusive of):  Wyatt's "Bean", the Bumbo chairs,  the musical table, and a 10 lb basket of toys.  She'd roll Wyatt along if she could.  I'm not kidding.  She's a bulldozer.  You have been warned.

We've added a few things to the babies' diet as well.  The pediatrician was shocked that we had Wyatt on more than a simple puree.  We've been slowly bringing more texture/less moisture to their food for some time now.   Zoe should be eating a lot of finger foods, but it is hard to have two completely different meal textures on hand at all times.  Instead, we've reached a happy medium.  Our homemade oatmeal has more lumps, as does the barley.  They eat rice shaped pastina:  mixed into their food, in clumps with melted cheese, and individually if they want.  If they have a pureed banana with their cereal in the morning, we set some aside and cut it up into tiny little bits for them to work on.  Zoe works on her pincer grasp with Cheerios, Rice Krispies and Special K, while Wyatt works on his tongue muscles and synchronizing his chewing and swallowing.  You may have to feed the pieces of cereal to him, but you also have to count your fingers afterwards. Recently, we've added cottage cheese, mashed textures and tiny chunks of cooked fruit.  It's been successful all over.  I haven't quite introduced them to their Momma's famous homemade mac and cheese yet, but after some pretty frustrating months, it looks like we will get there.

The best news all week was Mr. Wyatt's sitting progress.  He's been improving slowly in this area for the last little while.  We've been working on his core, improving his posture and putting him in a sitting position as much as possible.  Our perseverance paid off yesterday as he managed to sit, unassisted for over a minute!  It was amazing! 

Look what I can do! We managed to get him to do it again, at least long enough to take the above picture.  He's tired... you can tell as he is starting to list to port.

We've found lately that putting one of the smaller nursing pillows around him while he sits gives him a tiny bit of support (and a handy crash pad).

Sittin' and a' grinnin'

Life with Team Logan is never dull.  But, that's life with special needs.  Sometimes you need a helmet, sometimes it feels like your heart is about to burst.  Big girl panties are a must and we don't have any positions open for part time people.  Somehow though, it all works.  It isn't easy to get out of bed some days, but we are getting there, one milestone at a time.  We may not be rich or have the best of things, we may be short on sleep... but we are sure sittin' pretty. 

Yes.

Down, But Not Out

As I was pulling on my "Mom uniform" this morning (yoga pants, random oil stained T-Shirt, slightly too-tight hoodie, raggedy pony tail), two things occurred to me.  The first thought involved cursing with the realization that I was going to need socks (AKA Satan's footwear) for my eventual run to Costco.  This irritates me every time as I abhor socks and rarely wear them.  Even in January.  In Canada.

The second thought involved a bunch of new information about the twins, especially Wyatt.  Miracle upon miracles, the socks came easy, the Costco run (and most of the day) is over, the socks are off again.  Here I am, ready to share.

Last Wednesday, Wyatt had a trip to the cardiologist.  I was a little antsy as this was the first trip that Hubs had to do on his own (as I was at work).  In typical Logan form, the entire thing was a fiasco.  I won't spoil his story, but I will say there was a garbage truck, a bunch of staring people and a broken elevator. There was also some unexpected news.

At our last visit, we were told that we were looking at pushing Wyatt's surgery off to somewhere between ages 3 and 4.  As of this visit, the plans have changed.  There is some concern about the relative pressures in the chambers of his heart.  The thinking now,  is that since he is doing so well (and is still largely asymptomatic), that we will be doing his surgery sooner rather than later.  We are waiting for an appointment with the surgeon at "Sick Kids" (The Hospital for Sick Children) who will assess Wyatt and ultimately make the decision on when he will do the surgery. 

Let's just cut to the chase and say this was not the results that I was looking for.

I don't know why, but I was hoping that the hole in his heart was closing, or was doing so to such a degree that we could wait a few years.  I know, it is a long shot, but with the results that we have had so far, a mother can hope.  And I did.  What else could I do?

Sean called me at work when he got home from his doctor adventure.  I have a post-grad student currently, and all he heard me say after "How did it go?" and a long pause was a tiny "oh".   Despite the presence of logic, despite my understanding of the situation, it still felt like something had kicked me in the chest.  No matter how straightforward this surgery is going to be, I still don't have to like it.

Once we have a surgery date, we can start planning;  without that date, things are pretty much up in the air for the next, oh, eternity until we have that particular date.  I am trying very hard not to let that stress me out.

Tuesday morning, we had another double booking adventure.  Fun! (No, not really...) Wyatt's therapists were here Monday and as far as we knew, we only had our eldest son's parent teacher meeting at 8:30 am the following morning.  Right in the middle of the session, we got a phone call from the pediatrician's office reminding us of our appointment the next day.  At 9:30.  At the opposite end of town.  Yikes!

Our day went something like this: both got up, he got eldest ready for school and then took him there for the parent teacher meeting.  In the meantime, I got the babies up, fed, dressed, bundled and in their car seats, ready for Sean's return at around 9.  We loaded everyone up and shot across town.  We were only a few minutes late (thanks to the worst parking lot EVER) and only got the secretary's half-assed snarky disapproving face.

Once in, it was another episode of unloading, undressing, handing off and handing back of babies as we got them weighed and ready for the Doc.  Wyatt is currently 14 lbs, 13 oz while his "little" sister is now 16 lbs, 14 oz.  Zoe is also 2 cm longer than her brother.  The effects of the hypotonia and delay are getting more noticeable.  However, on the positive side of things, both are growing steadily on their prospective charts.  The pediatrician was impressed by Zoe's level of mobility and Wyatt's current functioning (learning to sit, discovering feeding himself and chunkier textures, no choking, happy as a lark).  All was going pretty swimmingly until Wy's physical assessment when she found tiny petechia on his chest and sent us immediately to the paeds clinic at the hospital to get his platelets checked.

[Record scratch] Pardon?!

I know it sounds innocent enough, just a little poke for some blood work, but to me it was a whole lot more.  One, the last time the pediatrician said "oh..." and pointed at something, Zoe ended up having surgery.  Second of all, thrombocytopenia in an 11 month old (6 weeks corrected) boy with Down syndrome could mean any number of things, up to and including leukemia.  People with Down syndrome have a low risk of most cancers, but they have a high risk of leukemia.  If it wasn't that, what was it?  How would this impact on his eventual heart surgery?  Was it related?  My head was spinning and my chest was tightening up as Sean dropped myself and the babies off at the hospital as he went to retrieve Quinn from school. 

I had to hold him down, which was anything but pleasant.  We are so lucky that he is a tough little guy as after a few snuggles, his big tears dried and we hung out to wait for results.  Both babies snoozed in the stroller while I texted the BFF madly as we swapped medical diagnoses and mega-grease lunch ideas back and forth.  After half an hour, I returned to the clinic.  I was only there a few minutes when one of the nurses called me over and told me his bloodwork was fine.  I swear my knees buckled in relief, but I'm sure all they saw was my grip tighten on the stroller as I exhaled.  The pediatrician had added a TSH to the order set, (simply because he would have that tested at about a year) but that would not be back for a while.  Since I had the info that I wanted, I chose to go home.

On the way home we totally greased out at Burger King.  Whopper, poutine, coke and an hour later, another damn Whopper.  Yes, you heard me.  I consumed enough calories to feed a family.  By the time I was headed for my nap (in the hopes of getting my chest muscles to stop hurting), the office had called to say that all the bloodwork was fine.  Thankfully.  Thank you universe... who/whatever is listening.  Thank you.

The last week has been riddled with drama.  In all fairness, we've been lucky for a while;  I guess it was our turn.   Like any parents, we get knocked down from time to time.  Without trying to sound like a Chumbawumba tune, we get back up again.  And again.  And again.  We have to.  For ourselves and for our family's sake.  Once we get our date, we will plan and it will all fall into place as it should.  It will suck, but it will happen and we will get through it as a family.  Of that I can assure you.

But, as the song says, I get back up again. You're never gonna keep me down.  Even with stupid socks.

Therapy Thursday: Workin' It!

It's been a while since I gave a proper update on Wyatt's progress.  That's not due to anything other than time, or rather, my profound lack of it.  Then there were things like holidays and anniversaries to consider... and, well, I fell into that trap of thinking that there wasn't much to report over all.  However, since the end of November, our little guy has made some strides.

Wyatt is still working on rolling both ways and "pushing up" on his hands.  Like his siblings, he seems to be more intent on discovering his verbal prowess, so it has been a bit of a frustrating couple of months to not see much improvement.  This is typical for Wyatt... plateau, plateau, plateau... and then boom!  Mastery! 

We have been continuing on with his positioning and gentle resistance.  Along the way, we have added a few things of our own that the OT's have approved.  He and his sister have a ton of toys;  some of the more simple ones such as heavier rattles and weighted balls have really helped to develop his eye-hand co-ordination (especially as he moves things from one hand to the other). Toys such as blocks have helped his grasp and a little ingenious configuration of plastic links has helped both his grasp and build his arm strength.  Wyatt likes to grab your pinkie finger in one chubby fist and your thumb in the other and "drive"; with this in mind, Sean put together an inverted Y shaped configuration of plastic links, where he held the single strand and Wy grabbed one side of the V part in each hand.  With that, we would then gently pull on the links and Wyatt would pull back, creating resistance.  We were amazed initially at his determination to pull on the links until we discovered that he was just trying to get them to his mouth to chew.  Amused, we let him have a little nibble now and again, just to reinforce a sense of accomplishment.  Even though pushing himself up has proven to be a bit of a stumbling block, he can quite contentedly rest on his elbows, shift his weight to one side, grasp a toy, chew on it and switch hands and comfortably shift his weight to the other side.

Casually shifting his weight
from one side to the other
so that he can play with his
version of free weights

His pivoting still needs some work, but is coming along.  He still prefers to roll to the one side, but we are encouraging him (with rolling exercises) to go the other way as well.  He can do both, he just prefers not to.  I personally don't have a full grasp of his rolling capabilities as I seem to always miss most of it. I sit and wait for him to do it, I get distracted and poof!  He is across the floor.  For all I know, he can teleport.

We are working with him, to some extent, every day.  Even if it is only a few minutes here and there in between the rest of the functioning of my crazy-busy family.  Mornings after breakfast seem to be the best time for him as he is alert and energetic (somewhere around 10:30 and 11, after cleanup and getting dressed).  He has a good hour or so of floor time which, in itself, helps him develop and grow, but we throw in a few exercises just to help him along.  Our workers (there are two of them currently, our regular worker and her student) are also OT's and they have begun visiting us twice a month to follow his overall progress.  Usually it is monthly visits, however we are getting double service because we have twins and a student available to us.  Either way, the time between visits allows progress to be assessed a little better as it is more noticeable.

Initially, we started with blanket or towel rolls.  Being a nurse, I'm an old hand at blanket rolls and can prop/secure/restrain anything with a blanket, anytime, anywhere.  We would use them to prop under his chest to help him raise up, we would put one on either side of his hips to keep his legs straight and not "frogged" (he likes to rub his feet together when he is lying on his tummy), we would use them to sit him more upright in his high chair.  We still use them for the latter, actually, especially if lunch is after a long exercise session and he is a little droopy.  Then, along came an object that we affectionately refer to as "The Speed Bump", which is a vinyl bar that, well, looks like a speed bump.  It can be used for a variety of things, up to and including propping him up on his hands and helping him sit.  He's not really a fan of the Speed Bump, and after a short time will tire of it.  I finally saw him pivot for the first time one day as he decided that he had enough time of the Speed Bump being under his chest and arms, pushed himself carefully down and to the side.  He then put his head down and promptly had a nap.

Wyatt working on his core

One of the more welcome additions to his routine in the last couple of months has been "The Bean".  Exercise balls are routinely used for developing balance and core strength;  kids with hypotonia are no exception.  We tried a few shapes and sizes out with Wyatt and found that an oval shaped "ball" with a slight depression in the middle was what worked best for him.  With "The Bean", we can work on his core strength and balance just by having fun with him.  For example, laying him on top of the ball and holding his feet and rolling it forward (while saying "Wheeee!" of course), he automatically pushes himself up and utilizes his head, shoulder, back and arm muscles to steady himself.  We also sit him on the Bean and holding his waist, bounce him up and down (he LOVES this).  I will say that once the ball/Bean was introduced, he did have an exponential jump in his balance. Within a two week period, he went from a floppy, bean bag baby that would nestle into your shoulder to a stiffer baby that would hold himself away from you when held him. 

Peekaboo!

Also in our regimen is a safety mirror which adds more fun and discovery to our exercises.  We like to put it on the floor and when he is getting tired on the Bean, it gives him something new to discover.  Since the introduction of the mirror, he will now try to put his hands flat on the floor (mirror) as he rolls forward.  We also use it across his lap when he is sitting to provide a little more interest into his grasping and banging of objects (and distract him from the idea that he is sitting). He loves to look at himself in the mirror, always has.  Our counter in the bathroom where he gets his bath has a huge mirror behind it; he watches us in the mirror and as "the other baby" have his tubby.  It wasn't a big stretch then, to incorporate it into our play and therapy sessions.

It may seem like a lot of work, having daily exercise sessions, but it really isn't.  Unlike traditional physiotherapy, we don't have pack up and lug him off to yet another appointment that he may not be receptive to, depending on the time of day.  Instead, we do it at home on his schedule and our therapists come to us.  This is important as we have a kindergartener who goes half days and Wyatt's twin Zoe who is hell bent on making what is left of my hair, grey.  We also make things fun.  Therapy isn't therapy, it's playtime and often all three kids are involved.  My eldest especially, as he keeps a critical eye on us to make sure that we are doing things right to help Wyatt with what he refers to as his "floppy-gitis".  Quinn came up with this term all on his own one day;  he was sitting beside me as I manipulated Wyatt into another position and he asked me what was wrong with him.  (We had already had quite a few) talks about DS.)  Being the Mom that I am, I answered "what do you think is wrong with Wyatt?" After a pause, Quinn looked at me and answered "I think he has floppy-gitis".  Not surprisingly, it stuck (and it was all I could do to keep from laughing).  At Christmas, my brother visited and I encouraged Quinn to tell his Uncle "what was wrong with Wyatt" as I thought that Bro might get a kick out of his nephew's clever terminology.  My whole plan backfired on me however (and demonstrated what a brilliant advocate he will be one day), as my son gave me a very long look and leveled his gaze on his uncle to report--in the most patient voice ever--"Uncle Bill, Wyatt has Down Syndrome". 

I had to leave the room. 

Like anything else, we've made Wyatt's therapy an adventure, one that we can all take part in.  Making it fun only serves to ensure that we participate as often as we can and that he grows up appreciating at least some forms of exercise.  It is frustrating at times and the results are slow at best.  But, the results are there.  They are visible in his thicker legs and stronger, steadier upper body, they are palpable in the muscles of his back as we pick him up.  Although I never seem to be able to watch him roll and pivot about the floor, he is doing it and managing to turn himself around (in fact, he will do this in his crib and I will find him stuck with his feet out through the bars).  As his arms grow stronger, as his back and legs develop more, the closer he is to crawling and walking.  We will get there eventually.  It will take time, but we will get there... One Bean-y bounce at a time.

What a Year a Difference Makes

One year ago today I was sitting in a neonatal cardiologist's office watching fish.

There were a variety of goldfish and a large sucker fish who was avidly doing its thing as it hung on the side of the glass.  It sat there, mesmerizing me and munching on microscopic algae as its tail waved in the current.  The hum of the filter provided balm to my already fraying nerves;  my aunt had passed away a few days before and I had just heard that a dear colleague had been almost killed in a car accident.  My belly had grown to enormous proportions and I could barely walk, stand or sit.  I was ignoring the itchy/sweaty/squeezy feeling my "batman" support tights were imposing on my lower half in the fight to keep me from getting a blood clot.  It didn't matter.  I was the sound of one hand clapping.  I was Zen.  I snapped out of my daze only slightly when my name was called and ambled into the office, a lazy smile on my face.

Less than half an hour later, Zen would be replaced by Stunned with an Underscore of Building Panic.  An echocardiogram on both my unborn babies had shown that baby B, my girl, Zoe, was fine but baby A, my boy, Wyatt, had AVSD and probably a chromosomal disorder, most likely Down syndrome. If the doctor had leaned over the counter and slapped me with a dead fish, I would not have been more surprised.   I listened and made notes and teared a little. I (somehow) had the presence of mind to write things down, as my memory was shot and I knew that my relative calm was momentary.  That stunned feeling got me into a cab and got me home.  Once inside the door I half tore off my coat and finally collapsed, sobbing.  It was an ugly cry, a guttural cry.  Definitely a contorted 'wild horse face' cry.  I was completely oblivious to time and space and the pool of dirty, salty water that had melted off my boots and was currently soaking my pants.  I was alone and completely helpless and beyond any hope.  You hear people say things like "it felt like my heart was ripped out" and you think "really?", but this... this is pretty much as close to the truth as you can get.  Your chest aches, you can't breathe and you have that discombobulated feeling that you are teetering and about to fall, about to slip into unconsciousness or death.   The room was spinning to keep up with my racing thoughts. All the reassurance from the genetic counselor in September was pointless.

They were wrong.
My son was disabled.
He was less than perfect.
My son, my baby boy, might die at worst or be delayed at best.

Why?

Why why why why why?....

Why, when I had done everything right--when many people do drugs and all sorts of horrible things when pregnant then go on to have healthy babies--I have this happening to me?  I pulled myself up to the island and half-collapsed again and cried into a stack of bills and junk mail, all the while still clutching my keys. An indeterminable amount of time later, I stood up, hastily wiped away the tears and trails of snot and cleared my now sore throat.

I had phone calls to make. 

It's been a full year and I still tremble a bit when I think of that day.  That day was really Day 1 of my New Year.  Day one of My Year of Down syndrome.  In the subsequent weeks my panic would lessen as my knowledge grew.  As my understanding and acceptance grew.  As my network grew. As I ultimately got over myself.

During this time, I've done a few things.  I've created this blog and found a little bit of therapy and a whole lot of coping for myself.  I'd also like to think I've become a better writer in the process. If the emails and PM's and comments are to be believed, I've touched many.  When someone contacts you to say "I don't know anyone with Down syndrome and I don't have any kids and I found your blog by accident when looking for wine blogs... but I really like your stuff", I think you can say that you are doing something right.  With this blog is the Facebook page, the Twitter feed, Pinterest and the poor neglected YouTube channel.  Between all the social networking, the research, the kids and my full time job as a Mental Health RN, well, let's just say life is pretty full.

My personal support system has expanded as well.  During the course of the year, I've met up with (both in real life and virtually) parents of children with Down syndrome.  Now, my network stretches across the planet, from the UK and Ireland to California to South America and on to Australia and the South Pacific.  It is unbelievable, it is fantastic and so comforting to know that we are all united in this one thing.  Almost everyone has a story like mine;  they can remember the day they ''found out" in crystal clarity.  Sometimes it was ahead of time, more often than not, it was in the delivery room or in the NICU.  We all have different levels of understanding, our lives have taken many different paths and we all certainly don't see eye to eye.  But we all share this one this one thing.

We've seen a wave of inclusion in this time too, from home coming kings and queens to cheerleaders and swim teams.  The latest is a boy named Ryan, who appeared in an ad for Target.  We don't have Targets here yet (so I haven't seen the ad first hand), but they are on the way this year.  I look forward to supporting them in the future if they continue with such inclusive advertising, although, being Canada, we'll probably end up calling them "Tar-Jzay".

The biggest thing this year, no surprise, is the babies themselves.  Zoe, Wyatt's "typical" twin is bent on being Daredevil.  She is determined to make her own way as, unlike her brothers, she is an almost walking, almost talking marvel at 10 mos.  No one told her she was "6 weeks corrected", and I'm pretty sure she wouldn't listen if you did.  Wyatt has beaten quite a few odds himself, other than the 0.003% we were given as the chance he had DS in the first place.  His AVSD is quite balanced and has proven to have little or no effect on his development.  The boy that was supposed to be in congestive heart failure by one month and needing open heart surgery by 3-6 months has pushed off his surgery to 3-4 YEARS of age.  We have a cardiology appointment coming up this month and we will see if what I think (and hope) is actually happening:  that he has pushed his surgery date back even farther.  We work on his muscles daily and he sees the OT twice a month.  He has gone from a fearful unknown to a 4lb, 13oz baby with no muscle tone and an upside down ECG to a thriving 15lb (-ish) ten month old with sparkling eyes, a sense of humour and the ability to charm everyone around him.  He, himself, is the greatest accomplishment of this year.

We've all come a long way from my puddle on the kitchen floor.  Patience, time and education have gotten us all here;  these things will sustain us through the years to come.  We have learned to embrace all of our children for who they are, especially our twins that are so radically different.  I've even found a few moments here and there to regain my Zen.  What a year we have had. What a year a 'difference' makes. 

My Happy, Healthy Baby Boy<
Wyatt, 10 months old.

Speak to Me

Speech can be very difficult for those with Down syndrome.  Due to delays in memory and aural learning, as well as co-ordination issues due to lack of muscle tone and control, speech  develops very late compared to "typically developing" peers.  Most actual speech therapies start after the first year (about 18 months of age), which begs the question, what can be done in the mean time?

One of the areas that you can work on with your infant is developing the face and mouth.  These are the same exercises that one would use to strengthen the facial/mouth muscles and increase sensation in preparation for eating.  These techniques are courtesy of ICDSP:

Facial massage:  Using two fingers or your thumbs, stroke the baby's face from the upper cheek close to the ears down to the corners of the mouth.  Then, stroke down from under the nostrils to the top lip.  (Do this 3 or 4 times a day before eating)

Palatal massage:  Insert a clean finger into the baby's mouth and stroke the roof of the mouth (the palate) from the middle to the side, stopping at the gum line.  Return to middle and continue to other side; repeat 3-4 times prior to every feed

Gum massage:  Trace along the gums with firm pressure from the front to the back on each side, top and bottom.  Do this 2 to 3 times, twice a day.

Chewing/Toy Mouthing:  introduce and encourage the child to use a variety of teething rings, soft toys and feeding utensils;  introduce horizontally and to the side to encourage biting of the toy.  Do this 3 to 4 times, each side.

Along with these techniques is the single most effective tool to strengthen the oral muscles:  breastfeeding.  As it provides more resistance than bottle feeding, it encourages the development of the muscles of the lips, cheek and tongue and enhances the coordination of these with breathing.  Soother use is also encouraged for this reason.

Another area that can be worked on is sound recognition.  As children with Down syndrome are primarily visual learners, the goal is to help the infant link sound with facial expression.  When the child is alert and relaxed, find a comfortable position that places both of you at eye level.  Remove any background distractions such as a radio or the TV and make eye contact with your child as you make sounds.  As you make each sound, monitor your baby for any reaction.  Encourage repetition by repeating any sounds that he or she makes.  You can make non-speech sounds (which include clicks, pops, "raspberries", etc) or speech sounds (which are repeated consonants or vowels or combination).    Make exaggerated examples slowly and clearly to help the baby hear and react to the sound.¹

Talking, singing and playing with your baby face to face will also encourage the little one to pay attention to sound. Ensuring optimum hearing through frequent assessment will also help them acquire language. 

Although statistically, many children with Down syndrome do not learn to talk until much later than their typical peers, it is possible to help them prepare for this eventuality.  By encouraging strong facial muscles along with memory, speech and language skills, the child will be able to speak more clearly and have an increased vocabulary.  Which, is extremely important for those very first spoken words. 

I won't say "Mama" for a while yet, but it will be phenomenal when I do.

-----
1.  Courtesy of R. Grey, Speech-Language Pathologist at Trillium Health Centre:

Group Hug

Last Wednesday was our final meeting for our DS group put on by ICDSP.  We only had 6 weeks together, but it gave us the opportunity to meet other parents of babies with Down syndrome and learn a lot more about what we can do to help our children along. I was only able to go half the time, which is an unfortunate side effect of my wonky schedule.

As it was our last day together, we cleaned up some odds and ends and the babies were evaluated. I also brought the camera and quickly whipped off a few shots.  I would have liked to get more, but it was near the end and my two were getting fussy, so I only have a few (we were also missing a member as well).

I can stand!  Yay!

First of all, Zoe has a new trick.  Actually she has two, but I haven't gotten a shot of her sitting yet.  She can pull herself to a stand using whatever is handy (my pant leg, the table, my hair...  in this case it was Daddy's hand).  She is very happy with it (and we are scared).

Wyatt is evaluated

There were 6 babies in the group, ranging from Wyatt at 7 months (and Emma who shares a birthday with my twins) to Nyal who was only six weeks old when we started.  It was cool to see other Moms at the start of their journey and listen to similar stories, such as time in the NICU, feeding difficulties... stories involving an NG tube.  Although we shouldn't compare our children, there was a lot of that as well.  Who had what symptom?  How had the extra chromosome manifested in the other children?  There was a lot to learn from one another and shared experience is truly important.


Our group leaders hosted and evaluated every week.  Through them, we learned to put our positioning exercises into practice and recieved a multitde of helpful tips on how to improve the lives of our children. (some of which have been shared here over the course of this month).  There were special guests, such as an OT and a speech therapist who laid the foundation for work later on.

 

Wyatt exercises

Wyatt and Emma

Wyatt much prefers to be without pants it seems; at least that is what he seems to be demonstrating by only playing with his feet when he is without them.  Linda showed us that with a simple towel roll we could encourage Wyatt to continue to grab his feet and develop his leg, arm and abdominal muscles as well as improve his body awareness and sensory input.  That's a lot of responsibility for two little feet.

Gotcha, Emma!

Hopefully we will see everybody again, if only to check in once and a while.  As was to be expected with a random sampling of children with Down syndrome, we all face very different challenges.  One child has already had several club foot surgeries, one had severe choking issues while eating, one had digestive issues that rivaled the little girl in the exorcist...  etc.  The early days after a diagnosis of Down syndrome can be challenging.  There is a lot of adjusting that everyone has to do that is unique to each family.  It was wonderful to see each parent become more skilled with their child (including us) as the six weeks progressed. I'm going to miss our time together.  Hopefully we can make good on the exchanged lists of information. 

Many local organizations offer groups such as this one for new parents.  I would highly recommend this to any new parent of a child with Down syndrome.  Just as Mother Goose helped me in the early days to become closer with all my babies, this group helped both of us to become even closer with Wyatt as we addressed his specific needs.  We have seen distinct improvements after employing some of the techniques we learned there.  Armed with these new tools, both of us feel encouraged.  For that alone, I cannot thank the group enough.

Therapy Thursday: Shaping Up

If you haven't realized it by now, hypotonia is one of, if not the major problem for people with Down syndrome.  The muscles are not only slower to respond and can be weaker overall, but they also have reduced endurance.  Ligaments are more elastic and joints more movable which often causes unstable motion.  Compensation is common whereby a child will learn to use one set of muscles as an alternative for a weaker set; this will cause improper motion and often result in chronic pain.  Obviously, since Wyatt is still a little baby, we can't tell him to drop and give us twenty or get him to blast on his quads.  So what then?

Most of what we can do for Wyatt (at this stage at least) is through play.  Thanks to our OT and workers from ICDP, we have a series of positions to allow him to play in which will help build specific muscles and develop specific skills. Each of these corresponds to a specific stage of where the child is positioning themselves (Supine - on their back, Prone - on their stomach and then sitting)  The following information is courtesy of Positioning for Play:  Home Activities for Parents of Young Children by Rachel B. Diamant (1992).

Child Lying on Back, Facing Parent (Supine)

Sit on the floor with your back supported by a couch, chair or pillows.  Stretch your legs out in front of you and place the child between your legs.  Support their head with a small pillow or blanket roll.  Bring the child close to you so that their bottom is close to your body and that their legs and knees are bent.  Ensure their arms are down and close to the body.  Ideas for play:  Hold a toy and encourage the child to reach for it and explore, sing songs, play patty cake, try baby massage or use wrist and ankle rattles.  Encourage the child to reach their feet.

This position:

• Encourages the child to keep the head in line with the body with the chin tucked and the body straight
• Encourages the arms to be forward and down and the hands to come together
• Encourages the hips to be bent, the legs together and relaxed
• Develops eye contact with parent and own lower extremities
• Enables reaching, hands to touch each other, the body and toys
• Develops stomach muscles
• Reduces arching

Child on Your Lap (Supine)

Place yourself on a comfortable chair or couch with your feet on an ottoman or coffee table so that your knees are at a 90 degree angle.  Place your child on your lap, facing you so that their legs are on your chest (with their feet reaching for your face) and their body is resting on your thighs.  Keep the child's legs together and their bottom securely against your waist.  Hold their hands or shoulders to keep their arms forward and rest their head on a pillow or blanket roll to ensure the chin is tucked in.  Ideas for play:  Sing songs, make faces, imitate sounds, use ankle rattles, baby massage, place a toy on the child's stomach to encourage them to explore it.

This position:

• Encourages the child to keep the head in line with the body with the chin tucked and the body straight
• Encourages the arms to be forward and down and the hands to come together
• Encourages the hips to be bent, the legs together and relaxed
• Develops eye contact, hands and legs
• Enables the hands to reach and touch legs/feet
• Develops stomach muscles
• Reduces arching
• Maintains the flexibility of the legs

Child Lying on Parent's Chest (Prone)

Lie on your back with your head on a pillow and place the child on your chest so that they are looking at you.  Hold the child at the chest so that they can support themselves on their elbows.  When they can support themselves on their elbows, support their bottom in order to facilitate them lifting up their chest.  Ideas for play:  Encourage head and chest lifting by singing, talking, making funny noises/faces, move in a slight bouncing or rocking manner to accustom the child to movement, encourage them to touch your face.

This position:

• Develops head control
• Developms muscles in the arms, shoulders and back
• Encourages child to be comfortable lying on his or her stomach

Child Laying on Stomach, Propped up with a Towel (Prone)

Place a towel roll under the child's chest as they are lying on their stomach.  Bring their arms forward, insuring they are in front of the towel.  Push down gently on their bottom if they require more assistance to push up on their elbows/hands.  Ideas for play:  place a safety mirror, pictures or interesting toys in front of of the child.  Encourage them to explore a fuzzy toy.

This position:

• Encourages the head to be up and be in line with the straight body and the chin to be tucked.
• Encourages the arms to be in front and out from under the child (or behind)
• Encourages the elbows to align under or in front of the shoulders and the hands to be forward
• Encourages the hips to remain straight, flat and the legs to be parallel and not splayed.
• Develops head control
• Develops arm, shoulder, back and neck muscles.

Child Lying on Stomach, Supported by Parent (Prone)

With your back supported by a piece of furniture or pillows, sit on the floor and lay the child on their stomach in front of you.  Hold one hand under the child's chest and place the other on their buttocks.  Lift the child's chest with your hand and encourage him or her to push up on their elbows.  Keep the child's bottom flat and the arms in front of the shoulders.  Ideas for play: place a safety mirror, pictures or interesting toys in front of of the child. Tap the chest lightly as you encourage them to lift.  

This position:

• Develops head control
• Develops arm, shoulder, back and neck muscles.
• Encourages the head to be up, in line, the body straight and the chin tucked
• Encourages the child to prop up on elbows or push up chest with arms straight
• Encourages the arms and hands to be forward and the elbows in front of or in line with the shoulders
• Encourages the hips to remain straight, flat and the legs to be parallel and not splayed.

Child Sitting on Parent's Stomach (Sitting)

Lie on on your back with your knees bent and a pillow under your head.  Place the child on your stomach, facing you, with their back and hips against your thighs.  Make sure their legs are 90 degrees to the rest of their body.  Hold the child by the hips and help them balance;  ensure the arms and legs remain forward.  Ideas for Play:  Gently rock and bounce to encourage balance.  Sing "riding songs" and play horse.  Imitate sounds and each others expressions.

This position:

• Develops head control
• Develops back, body and hip muscles
• Develops balance
• Develops eye contact and facial expressions
• Encourages the arms to be free for play
• Encourages the head to be up and be in line with the straight body and the chin to be tucked.
• Encourages the body to be straight and upright, the shoulders down and the arms forward
• Encourages the hips to bed at 90 degrees
• Encourages sitting properly, not sitting on tailbone

Child Sitting on Parent's Leg (as Parent Sits on the Floor)

Sit with your back supported by a piece of furniture or cushions.  Sit the child on one of your thighs so that the child's feet are flat on the floor.  Support the child with your arm, sit them close and ensure their hips are bent to 90 depress.  Ensure the arms are forward.  Ideas for Play:  Sing riding songs, bounce gently and play horse, introduce and hold a toy for exploration, read a story.

This position:

• Encourages the head to be upright, straight and inline with the body while the chin is tucked
• Encourages the shoulders to be down and the arms forward
• Encourages the hips and knees to be at 90 degrees while the feet are flat on the floor
• Encourages sitting properly, not sitting on tailbone
• Encourages the arms to be free for play
• Develops head control
• Develops back, body and hip muscles
• Develops balance

Child Sitting on Parent's Lap while Parent's Legs are Crossed

Sit with your back supported by a piece of furniture or cushions and sit cross-legged.  Sit the child in your lap with their back and bottom are close to your body.  Place their legs over yours so that their hips and knees are at 90 degrees and their feet are flat on the floor.  Support the child's chest if need be with one of your hands.  Ensure their shoulders are down and the arms forward.  Ideas for Play:  Singing finger play songs, patty cake, etc, take apart or put together snap together toys, sing riding songs and gently rock or bounce.

This position:

• Encourages the head to be upright, straight and inline with the body while the chin is tucked
• Encourages the shoulders to be down and the arms forward
• Encourages the hips and knees to be at 90 degrees while the feet are flat on the floor
• Encourages sitting properly, not sitting on tailbone
• Develops head control
• Develops back, body and hip muscles
• Develops balance
• Encourages arms to be free for play
• Reduces arching or extension of body in children with tight muscles

Child Sitting on Parent's Lap while Parent Sits on Couch or Chair

Sit on a couch or chair and sit the child on one of your thighs and put their feet flat on the couch (between your legs).  Support their head and back with your arm, ensure their shoulders are down, their arms forward and the hips and knees are bent at 90 degrees.  Ideas for Play:  Sing riding songs and play horse, introduce a new toy to explore, read a story.

This position:

• Encourages the head to be upright, straight and inline with the body while the chin is tucked
• Encourages the shoulders to be down and the arms forward
• Encourages the hips and knees to be at 90 degrees while the feet are flat on the furniture
• Encourages sitting properly, not sitting on tailbone
• Develops head control
• Develops eye contact
• Develops back, body and hip muscles
• Develops balance
• Encourages arms to be free for play

 
We have found that many of these are positions that we naturally hold him in.  It is also great to be aware of what skills we are honing or what muscle groups we are helping to develop. Also the play portion keeps it from being "work", which is nice for all of us.  Both the babies love their floor time and it feels good for us to be doing something that will help Wyatt develop to the best of his ability.