February 26, 2014

What Works?

...And other answers to reader questions about down syndrome

I received the following email from a reader.  My reply encompasses answers to some questions from other readers.  It is very long so I will be posting in parts over the next few days.  I have omitted names to protect the privacy of my readers.  This is part two in my answer.  You can read part 1, "How do we fit therapy into our school day" by clicking here.

"Hello! I am mom to 7 beautiful kiddos (13- 8 months) and 1 in heaven. My little baby, M, was born last June with Down syndrome. I am a homeschooling mom, too. I came across your blog and felt very inspired. Like your little one, my M is doing so well and is so alert and happy. She also had a healthy heart and has not had any of the health issues so many little ones suffer. 

Okay, so my questions for you.....how do you fit therapy in your school day? How much therapy? Are you supplementing nutritionally with any vitamins and herbs? What in particular is working for you? Somedays I just feel so overwhelmed and am not sure how to manage, schooling, housework, and therapy. I get lost in all the Down syndrome research and blogs and I sometimes wonder if all that is necessary when she is surrounded by so much constant stimulation and lots of love. M loves tummy time and inches around. She spends most of the day on her tummy engaged in all the activity around her. Thank you in advance for any help/advice you can offer! You truly have a beautiful family. God bless!"

How much therapy?

So I think I've answered this question already.  Just to recap the short of it is Addison has at least 2 hours of focused therapy every day plus an hour of yoga.  But, really all his waking hours involve therapy.  

Nutritional Supplements and Vitamins
At this time, we are not supplementing with anything.  I have spent many years studying nutrition and I know for certain that good solid nutrition is important to the growth and development of any child.  We have always been very intentional about what our family eats both to feel our best and because of a long history of food allergies.  Addison is still exclusively breast fed.  When he moves to food he will follow the same careful diet we used with all our other children.  That involves lots of organic fruits and vegetables, little to no packaged or processed foods, home baked breads made with fresh ground grains, organic dairy and meat products, nuts and fresh pressed fruit and vegetable juices.  We are studying specific foods and supplements which will be beneficial to Addison's special needs as we know people with Down Syndrome commonly suffer from progressive nutritional deficiencies.   We hope to take him to a clinic we are familiar with in Tulsa OK which specializes in holistic healthcare and nutrition.  It is our hope by working with the doctors there we can learn more about how we can optimize his health and development through diet.

What is working for us?

1 The Prayer team... When Addison was born we knew we couldn't do this journey without a strong support system.  We don't have any family we can rely on.  We prayed and asked the Lord to show us who would be our support.  There were five specific families God laid on our hearts.  We asked them to be Addison's prayer team.  In our faith we don't have Godparents but these five couples are like 5 sets of Godparents to Addison.  Every step of the way they are praying for our fellow and our family.  When we have a specific prayer need (such as when Addison had to go for surgery) they all pray us through it.  When he pulled himself to a standing, we posted a video and they all cheered him on and praised God right along with us.

2 Medical/therapy team... Really having a medical and therapy team we trust has been an incredible blessing to us.  I think being comfortable with our team is very important because I like to bounce things off of other people.  I need to feel they are vested in the situation and as if they know what they are talking about.  Before investing time in learning ASL for example, we prayed about it for several months, ran it by all of Addison's caregivers and then arrived at our decision.  

3 Family support... having a close family who work together for the common goal of helping Addison carry out God's will for his life is of the utmost importance.  Each person understands that we all have an investment in who Addison becomes.  Likewise, Addison is essential to our family being what God wants us to be.  

4 Schedule/routine.. I have already talked about this but it can not be overemphasized

5 Letting things go... My kids have always helped around the house.  If you can crawl or stand you are not too young to help out.  During Addison's pregnancy I was very ill for the entire nine months.  I had to learn to let others do more.  This meant letting my standards slide a bit.  No one else will ever do things the way I would like.  Letting them help out at the level they are able (even if it means oatmeal four mornings in a row or our white laundry not being as white as I would get it) is part of that.  Our kids have always been good helpers around the house but now they are even more so.  

And sometimes, even though we are all working hard, there are not enough hands to do everything that needs doing right now.  My house is not as clean as it once was.  The toilets are sometimes down right icky.  Everyone is giving 100% all the time so I am ok with that.  I am constantly prioritizing... and I mean every day and sometimes every minute... as to what must happen now.  Last week it was tending to the sick kids, making do in an extended power outage with no water, and celebrating my birthday with those I love.  This week it is washing the laundry and doing the cleaning that didn't get done when the kids were all sick and we had no power or water last week.  Who knows what next week will hold?  But whatever comes, don't worry about getting all the cleaning, cooking or laundry done just right.  Just tackle what is most important that day.  The kids are out of socks?  Don't worry about washing all the laundry, just get a load of darks going.  

And learn to delegate!!!
With school it is the same idea.  Decide what is most important today and let the rest go.  Just pick one or two things and work on it during nap time.  If you really feel like you need more time, consider doing a little school with the children after dinner while Father puts the little ones to bed.  Maybe even a little bit on Saturday morning while your husband plays with the little ones.  The rest will fall into place.  Don't sweat it.  I find most home schoolers put way too much weight on book work anyway.  What your kids are learning through relating and caring for their sister is far greater than anything they will learn in a text book.  Numbers and letters can be learned just about anywhere and anytime.  However, compassion, love, self-sacrifice, those are things that can only be learned as life presents the opportunities. Don't miss out on it!

For us, there are certain things that are a must every day and those are the things on the schedule... Bible and prayer, one on one with the kids, running, therapy, couple time, family dinner together... every thing else is a bonus.  I begin the day by taking stock of the house and the schedule and determining what is our greatest 3 priorities.  Today is was a meeting with Addison's Service coordinator and therapist, sending and answering an email concerning his future services, and math lessons with all the children.    

6 Just be a family... this is really important.  Make sure you are having lots of time daily and weekly to just be a family.  I am convinced the most important thing we can do for our children with special needs is to let them live everyday life as an everyday family.  Give them lots of time to suck up all that love they are surrounded with.  It is clear through anyone's observation, historical records and oodles of studies people with Ds have an overwhelming, almost superhuman,  need to love and be loved.  We can best fulfill that need in our regular every day family life.  This has the added benefit of relieving stress for everyone so we can meet the many needs surrounding us as caregivers to special needs kids.

7F.R.I.E.N.D.S.  This is a local group of families who are all affected by Ds.  We have a very close knit and very active group.  We meet once a month for dinner and at other times for special events.  This is a fabulous resource for our family.   It seems silly to add one more thing to your list when you already feel overwhelmed but having a place where others "get it" has been helpful to our entire family.  More often than not we have friends who like to go along to the meetings/dinners with us.  This has been a great place for me to bounce ideas around and get resources as well.  I would recommend seeking out such an organization.  They exist in just about every city in the country.  Unless you live in the middle of no where you should be able to locate one rather easy.  If not, how about running an add at your local DDA or Infants and Toddlers office and starting one yourself.  It doesn't have to be fancy, time consuming or expensive.  A monthly potluck can go a long way in the uplifting department!


And really, no matter what you do, some days you will feel overwhelmed.  I know I do.  On those days, just get a pile of toys, sit on the floor with your little guys for a while.  Remember what its all about.  Read some scripture aloud with your older ones.  Eat popcorn for lunch while you open a library book together.  Use nap time to curl up with your own book and a great cup of coffee.  Go for a run.  In other words, forget about down syndrome for a spell.  When you come back you will be refreshed and ready for the task at hand.  Even better, make daily and weekly time to do these things so that you reach the overwhelmed place a lot less often.  

Is it all necessary?

I agree with you.  I often wonder if all the work is necessary for Addison's best interests.  That is one reason we try to find a balance between therapy and life.  We try to make all his therapy time resemble as closely as possible the play time we shared with our other children.  

About blogs, books, articles... and all the plethora of information out there.  I would say if you are finding good information and it is helping you and encouraging you then set aside a specific amount of time and work it into your schedule.  Say Monday 1-2 pm... for example.  Use that time for reading and research. 

HOWEVER, if it is making you feel overwhelmed or as if you need to do MORE, MORE, MORE... then put it aside.  You will never be able to do it all.  And if you are so overwhelmed that you are getting worn out or feel like throwing up your hands and doing nothing, you will not be helping your daughter, yourself or your family.  

One of the things I quickly learned is there is an endless supply of information out there.  And, unfortunately, most of it seems to be opinion.  I read everything I can get my hands on relating to Ds and I am constantly scanning web sites, forums, and blogs for more information.  And sometimes there is something useful.  Sometimes I just get more questions.  Sometimes I find myself quickly buried in days of research trying to chase something down.  

Right now we want Addison to get involved in a neurodevelopment program.  My project for January was supposed to be choosing which one.  As I began researching the specific one we were interested in I found several others which looked more beneficial.  Which lead to way more research time.  Between surgery and sickness and doctors appointments I got no where near deciding on a program in January.  Every time Allen asks me how my research is going I get the overwhelmed feeling because I haven't even looked at anything in weeks and I feel the days ticking away.  Allowing those feelings to consume me doesn't help me, Allen or Addison.  This week I decided I wasn't looking at anything.  I took two days to read a book and have a run.  By last night I felt so much more myself. Which was good because I needed the strength for my meeting this morning.  :)

As always, I welcome your questions.  Who knows when I will get around to answering them, but I do spend much time in prayer and many hours responding to all reader questions.  If you prefer your question to remain private just let me know in your email.  I would be very interested for readers to leave their own thoughts and experiences relating to how you work therapy and the other needs of your child with Ds into your family life.  



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