Goals

On Wednesday, Wyatt and Zoe turned 9 months old.  It was an occasion marked by a few tears, some of which were from me.  It's hard to fathom, but they have officially been "outside" longer than they were "in".  Every day seems to be marked with some new discovery;  yesterday was Zoe's purposeful "Dada", while Wyatt turned his head and made eye contact with me when I called his name.  Both were equally magical, both were equally greeted with joy.  These moments are coming more rapidly as time marches on towards their first birthday.

As they change, our daily life changes.  We are still trying to find our stride with my return to work and our crazy schedules.  Every day has something going on it seems;  "humdrum" is hardly Sean's day in the Brave New World of the Logan household.  One way or another, it eventually gets done.  Even if whatever it is has to wait a week to be done on my days off, it gets done.  My house always seems to have that shaken, not stirred look about it; toys, shoes and bits of clothing (usually socks) strewn about, dishes (gah!) everywhere and piles of used bibs on the kitchen table.  Then there is the laundry.... oooh the laundry!  I plan to spend two days next week to do it all up.  Consecutively.  Without pause, except to feed myself, the children and use the bathroom.  I'm still not sure that will be enough time. 

It's hard to sometimes, but to get anywhere, we have to set goals.  However well meaning, however lofty, however completely batsh☠t insane, we have to at least try.  We simply have too much going on not to.  It's what I think of as Newton's Laws of Parenting:  each new skill they develop, each little nuance they perfect has an equal and opposite reaction from us. Intersecting nicely to this is Murphy's Law, which usually ensures we are scrambling around at the last minute trying to baby proof and avert disaster in general.

One of the latest things has been Zoe's mobility.  We are constantly trying to adapt to our little girl and her astounding (to us) physical prowess.  She is now slowly crawling on her hands and knees (but is still lightning fast on her belly).  She pulls herself up, sits and I have caught her taking a few tentative steps as she held onto the edge of the coffee table.  Last night I buckled them both in their swings and closed the gate, leaving them in the living room as I headed upstairs to get ready for work (my 5 year old was in the room and my husband was in the next room and checking on them every few minutes).  As I was getting dressed all I heard was "Hon?  Did you leave them both in the swings?"  Puzzled, I answered "Yes?", to be told "Well, they aren't now".  I flew downstairs, pulling my T-shirt on as I went, to find that Zoe had wiggled out of her swing and was trying to crawl into Wyatt's lap (who thought this was all hilarious).  It was a little freaky to say the least, especially as both swings were still moving.  Keeping her safe is going to be a big challenge, especially after the gate fiasco of last week:  the extra long gate that we had purchased almost fell on her and my eldest. Somehow in the process of me trying to catch it, I slipped, half fell and managed to step on her little hand.  She was fine, I was fine (eventually!) but that particular gate went back the next day in exchange for a wooden one that is bolted to the wall.  The first morning I shut the new gate, ran upstairs to grab something and came down to a little face squished against the wooden rails pleading for release.  So far then,  it is working just fine.

Wyatt's OT came out last week as well and did a little assessment on his progress.  He is pushing himself up on his hands occasionally and has added a little bit of pivoting on his stomach. He has managed a maximum of 90 degrees thus far.  He has also rolled over and over (uni-directionally and slowly) and in doing so has moved across the middle of the living room floor.  Our days of him staying put are rapidly coming to a close as well. With our current regimen of positioning and small resistance exercises, we hope to accomplish a few more goals with Wyatt:  sitting, pivoting 180 degrees, rolling to both sides and more developing more control with his upper body in preparation for crawling.  Vocally he seems to be just about right as he carefully imitates our sounds and expresses himself more freely with both his voice and his affect.  There is no time limit on these objectives.  Like just about everything with our little guy, they will be met in their own time.

I don't know about your school, but there is a ton of paperwork that comes home and lots of things that we have to sign and send money back for.  Milk.  Book fairs.  Fundraising.  It never seems to end.  To try and keep this organized, we have two (pretty) bulletin boards in the kitchen.  One is for my son's stellar artwork, the other is for all the papers from school.  Last week, we were trying to get an idea of how much money I had to go take out of the machine in order to send it with him.  As we were adding up our list, my husband adds "...and $15 bucks for their trip" and hands me a blue sheet that he had found.  Once again it seemed they were going to the Living Arts Centre for a theatrical presentation of some kind.  I tacked it up on the board and forgot about it as we were promptly distracted by other things.  The next morning I was gathering up things to send back to the school and could not find the permission slip portion of the trip paper.  I had the front sheet with the staple hole in it where the permission page had obviously been joined at some point, but not now.  I looked everywhere, but with bus time rapidly approaching, I quickly scribbled off the following note to his teacher:

"Dear ____,
We seem to have misplaced the permission slip for the upcoming trip to the Living Arts Centre.  Could you please send another one so that Quinn does not miss out? 
Thank you in advance,
Jen (Mrs.  Logan)"

That day I got a note back:

"Dear Mrs. Logan
Thank you for the note.  I am not sure what I should be sending home as we do not have an upcoming trip.  
Thanks, ____"

 Confused, I looked at the trip letter.  It was dated 2010. 

Facepalm.

Luckily, hubby had the parent-teacher interview the next day, not me. 

There are a lot of little niggling things that need addressing here and there... from little house repairs to putting up the Christmas lights to spending more one on one time with my eldest.  Little goals that range in importance from meh to good idea to absolutely. As you may have guessed, there is very little me time in there, except for what I carve out for myself on the computer or in the bathtub.  Getting more sleep is certainly on my list of well meaning tasks for myself.  The joke there is that it has been at the top of my list for over 10 years now.  I used to have terrible insomnia.  I would toss and turn and be unable to settle to sleep, unless I was completely exhausted or medicated.  Then I would only sleep for a few hours before waking up again.  Thanks to the kids, that is no longer the case. I can sleep anywhere, anytime... it really doesn't matter.  If I sit still for more than 10 minutes, I am out whether I like it or not.  I've gone from having bouts of mind numbing insomnia to narcoleptic fits.   That's where the Newton's Laws of Parenting (bisected by Murphy's Law) come in again.  The more likely I am to fall asleep, the more likely one of my kids is to start crying and needing attention.  It never fails.  You could set your watch to it.

Our goals generally walk that razor's edge between reality and way the hell out there.  Getting through some weeks is like trying to assemble a giant jigsaw puzzle where the pieces keep changing shape and you have to use your toes.  It's next to impossible some days, where others seem childishly simple.  I'm still trying to come up with an answer to "I don't know how you do it".    I have yet to figure that one out, but I think goal setting has a lot to do with it.  The trick to that is to let it flow.  We try not to get too rigid as that will only raise our anxiety level and make our house an unhappy one.  Instead, we dial it back a bit and get the most important things done.  Trying to outthink the little buggers is also exhausting so we try and stay a little bit ahead so that everything is as easy as possible.  It works with things like baby food, not so much with the clean clothes.  As a result, the house is a mess, but dinner is in the crock pot.  The children are dressed properly and clean, we are generally not.  I may not have the whole Monday is library day and the milk money has to be back Thursday which is the same day as "Sharing" (show and tell), but dammit, one or two or all of us are at the bus stop twice a day and on time.  We're also a funny, happy, silly bunch that genuinely love one another. That goal, at least, we seem to have met without a problem.

Making the Best of the Worst Case Scenario

I've been putting off this post for a few days now.  I'm pretty sure it's the subject matter. (It would have to be.  What else would drive me to cleaning instead?)  Not only does financial stuff, as a rule, make me want to stick a pen in my eye, but I'm not very keen about thinking about my own death either. However, when you have children, these things have to be thought about and planned for.  Normally you think in terms of a child reaching the age of majority, providing for schooling and then hoping for the best if they have to strike out without you after that.  You hope that whatever time you had with them will prepare them for life.  What if that child has a learning disability?  What if that child has Down syndrome?

Recently my husband was able to attend a Will and Estate planning session that was tailored specifically for parents of children with Down syndrome.  I was unable to attend, however I did get the crib notes version and the literature to peruse.  Of course, I then started poking around to see what I could come up with.

I won't go into too many specifics as it will depend on the laws of your area, but there are a few subjects that seem universal and should be considered by parents of children with Down syndrome.  One of the first major hurdles, at least for me, was to appreciate that we don't know how independent Wyatt will be at this point.   It is also too much for me to assume that he will live with one of his siblings.  It is a nice thought and I would hope that would be the case, but it realistically may not be possible (due to schooling or specific needs or even Wyatt's desire for independence).

I had a lot of questions.  Who would look after Wyatt?  Who would pay for his housing, clothing, medical expenses, things that affect his day to day life?  How would this impact any government funding if he would need it?  Luckily, these sort of things have been addressed and are pretty much a matter of routine.

Unlike your average trust fund which turns into assets at a certain age or when certain criteria are met, many countries have created trust funds specifically for people with special needs.  These trusts will allow the beneficiaries to continue to live with dignity, yet not be burdened with the administrative aspects.  A trustee is appointed;  that person or organization would see that the monies are dispersed as needed.  

There is some government funding for adults with learning disabilities, at least here in North America, which is mostly income based.  As the person themselves do not have access to their trust, it is not considered income and therefore does not disqualify them from receiving funding.  Here in Canada we have a few options, including  RDSPs and a "Henson Trust" which is an absolute discretionary trust, where you can dictate all the specifics of how and when the money is applied.   You also may want to consider options that deal with money coming in from outside sources (such as family, interest, donations, that sort of thing).  Many grandparents like to set up bank accounts for their grandchildren;  even something as well meaning as this might interfere with funding and be considered as assets.  Instead, suggest to well wishers to contribute to an RDSP in the child's name.  As a side note, unlike RRSPs and RESPs, a RDSP's funds are not totally taxed when they are dispersed upon maturity.  Only any growth and government contributions are taxed and at a lower rate.  There are also things such as pensions and life insurance policies to consider, where naming a child with a disability as a beneficiary would actually work as a disadvantage.  Instead, one would name the trust fund as a beneficiary.  It would be a shame to lose well intended (and possibly much needed) funds to taxes and the like. 

Flexibility seems to be a common theme as well.  With this type of trust, you can dictate how to proceed for almost any possible scenario that you can think of.  In the event that your special need child passes away prematurely, where do the funds go?  What if your child marries? Divorces?  Is outlived by their spouse?  These questions (and a million more) can easily be addressed by an absolute discretionary trust (or Special Needs Trust for our American friends).

I'm not a financial expert and don't ever plan to be. I will however, allow those that are to figure out how to do what I want to do with Wyatt's financial future.  There are people that specialize in Disability Law and I encourage everyone to seek them out.  I am also not wealthy by any stretch of the imagination. I was very relieved to learn that it was a matter of routine to set up safety nets for my son that were independent of how much money I was making and not that much different from the considerations I would make for my other two children. I was also happy to learn that this wasn't something that I should have been doing already, it is something that I can start at any time. It is comforting to know that when I am no longer here, Wyatt's needs will be met.  Don't get me wrong, I plan on being around a long, long time.  If I'm not tho', all my kids will be looked after.  This was one of the nagging things that haunted me after he was born;  thanks to this information, (if you can pardon the horrible pun) I can finally lay this one to rest.

See the Ability

Recently we were at the pediatrician for the twins check up.  Now that Sean is on paternity leave, the whole process is a lot easier, but we still have to bumble in, check in with the secretary, navigate the stroller through a narrow hall and door, get them out of the stroller and strip them down in preparation of the great weigh in.  It's hard not to feel like a circus ringmaster as we take babies out of our clown car of a stroller.  This one is wiggling, this one is crying, this one is trying to roll away while this one is busy pulling faces and charming the heck out of everyone.  Oh look.  This one pooped.

This visit was no different.  The great weigh-in found Zoe tipping the scales at a muscular 14.5 lbs while Wyatt was just over 13 lbs.  The are about the same size (Zoe is a tiny bit longer) and both have the same head circumference.  The weight differential can totally be attributed to the hypotonia;  Wyatt has weaker muscles which causes him to move less, which causes him to have less lean muscle mass (which is heavier than fat).  Both are continuing along their own prospective growth curves:  Zoe is in the 5th to 10th percentile while Wyatt is in the 25th percentile on the Down Syndrome Growth Charts.  At six weeks corrected (giving them a "developmental age" of 6.5 months at the time of the appointment), the pediatrician was amazed to see Zoe pull herself to a stand, fall into a sitting position, sit unassisted and have a mixture of rolling/crawling/army crawling.  Wyatt is just Wyatt:  he is still working on pushing himself up whilst on his tummy and he has added a small amount of pivoting.

The gulf between them is starting to be noticeable.  Although some well meaning family members (that obviously don't read this blog) tried to "warn me that this day would come" (?!), we aren't saddened by it as they predicted.  Yes, Zoe is a superstar.  No one has told her that she is ahead of the curve for a 6 week premature baby (and I'm not of the mind to change that either).  Wyatt is progressing at his own rate that is unique to him.  That is the nature of Down syndrome.

After they were born and we had proof positive that Wyatt had DS (his karyotype), I was talking to a friend and answering a question about Wyatt and was listing off a variety of things that he "couldn't" or "wouldn't" be able to do.  Wise woman that she is, my friend fired back with "Yes, and Zoe won't be an athlete at the Special Olympics either".  She is right.  There is a list of things that Wyatt won't/can't/shouldn't be able to do, but that is not what is important here.  It is what he CAN do that is important.  I don't think my friend realizes what a pivotal moment in my thinking that one little quip was, but it was.  You have to see beyond the diagnosis (and that is what it is... a diagnosis, not a disease, not an affliction, not something to be suffered) and see the person. We do this with our "typical" children instinctively;  if little Johnny shows an interest in music or sports we sign them up for lessons or a team (or hopefully both).  If our children show an ability in writing or drawing, we encourage this.  Maybe they can be the next Pulizer Prize winner... maybe they will be the next Michalangelo.  Maybe they won't.  But, we see the potential.  We see the ability.  It's the same thing with children with Down syndrome.  You have to see past the diagnosis and accept the person.

This week, from November 1st to 7th is National Down Syndrome Awareness Week in Canada.  This year, the Canadian Down Syndrome Society is encouraging everyone to "See the Ability", to look beyond Down Syndrome and see the person, not the genes.  That's a philosophy that we can easily embrace, as we have been doing it all along. 

We see Wyatt's ability.  His ability to make us laugh, to be the loveable huggable little fella that he is and the wonderful man he will become.  We hope that one day, not too long from now, everyone else will be able to see it too.


You can learn more about National Down Syndrome Awareness Week on the CDSS website,  "like" the Facebook page and follow them on Twitter @CdnDownSyndrome. 

Challenges

We did it!

I still can't believe it, but I managed to get through 31 days of blogging.  It's been cathartic, it's been educational.  It's been unbelievable.

It's been exhausting... and totally worth it.

In October, my blog has had visitors from The United States, Canada, The United Kingdom, Ireland, Australia, Brazil, Slovakia, Ukraine, Russia, Germany, South Africa, Poland, India, Thailand, China, The Netherlands, France, Sweden, New Zealand, Denmark, Italy, Switzerland, Moldova, Singapore and Latvia.

My voice has carried farther than I could ever have dreamed.  I hope you all found something interesting, informative or that helped you in some way.

As a little recap (and a handy reference guide) here is the month in total:

Special Entries	Family Day Sunday
1   - Happy DS Awareness Month 31 - Happy Hallowe'en!	2   - Life Without DS 9   - Welcome to the Family 16 - Day of Rest? 23 - Be Gentle 30 - I Wish I'd Known
Medical Monday	Teaching Tuesdays
3   - Eye Problems Frequently Experienced ... 10 - Types of Down Syndrome 17 - Hearing Complications with DS 24 - Altantoaxial Instability	4   - Physical Features of Down Syndrome 11 - A Brief History of Down Syndrome, Part 1 18 - A Brief History of Down Syndrome, Part 2 25 - Down Syndrome and the Developing Child
Wyatt (and Zoe) Wednesday	Therapy Thursday
5   - Wednesday with Wyatt 12 - "Wy" Not? 19 - At Home with Wyatt and Zoe 26 - Group Hug	6   - Heal Thyself 13 - Learn to Speak "Therapist" in a Few ... 20 - ...Shaping Up 27 - Speak to Me
Factoid Friday	Story Time Saturday
7   - Just the Facts, Ma'am! Welcome ... 14 - ...Perceptions of Down Syndrome 21 - ...7 Good Reasons to Breastfeed... 28 - Conditions Concurrent with DS	8   - Homecoming 15 - Birth Stories 23 - Just Like Us 29 - Down Syndrome Advocate, Albert Pujols

Before I forget (which happens more than I care to admit) I would be completely remiss if I didn't thank a few people for helping this month be a success and to help me get my voice heard...

First of all, thanks to Nicole Kane Knepper for featuring me on her blog, Moms Who Drink and Swear and for her tweets and shares of my entries.  You could tell when she did something as my hit counter would have a seizure.  Through her, so many more people have found and connected with us.  Many are not of the DS community, but have found something here that has resonated with them.  Nikki, thank you.

Thank you to Ginger Greenleaf Caballero from Counting Caballeros for her tireless "pimping" efforts of DwD.  She too has helped expose me to more people that would probably not have read this otherwise.  Ginger, thank you.

Thank you to all that took the time to Retweet, +1, "Up", or share my entries... to make a comment, send me an email or PM me on Facebook.  I cannot properly express how much this support has meant to me. 

To my friends and family, thank you for your patience, understanding and support.  Thank you for understanding why this was important to me and cheering me on.

Finally, to my husband.  Thank you for your patience and understanding and your occasional proof reading and grammatical skills.  Thank you for being such a wonderful husband and father to our children.

Today is also the beginning of Down Syndrome Awareness Week (November 1-7) here in Canada.  I will be returning to my usual schedule after today.  However, that will not stop the updates on DwD's Facebook Page, or my tweets (@Down_Wit_Dat);  I will continue to share stories that inform and inspire.  I will also openly challenge my home and native land to make Down Syndrome Awareness Month.  May I suggest October or March?

Through the 31 for 21 I have challenged myself mentally, creatively and even physically.  Now, it is time to pass the challenge on. I challenge all of you to make a difference.  Educate one person.  Just one.  Call someone on the use of the "R" word and explain how something that may seem so innocent to some can hurt people that surely don't deserve it.  Explain that hypotonia and speech impediments do not dictate intellect.  Help the friends and family of a newly diagnosed infant as they struggle through the first days.  Support local organizations that help people live independently and with dignity.  Educate your children and encourage inclusion.  Help wipe out ignorance, help wipe out fear.  Be the light in the dark... for one person.  If everyone reading this today does that, we will have already changed a little bit of the world in over 25 countries.  If those people challenge at least one person...  A world where Wyatt can reach for whatever star he chooses might actually be around the corner. 

The possibilities are endless.  Our adventures continue...  One challenge at a time.