Posted by: Susan | October 12, 2010

Questions?


 A mom emailed yesterday with a list of questions.  The pictures I am  using may or may not have anything to do with the questions.  I just like them!

From the mom:  I have a few questions that come up over and over and over again on the parenting message boards I’m on (mostly Baby Center’s Down syndrome board, but the Down Syn message board is another good one as well!)  I was wondering if you’d be interested in addressing them. Most of the mom’s on BC are mom’s of babies between birth and 5 years old, and I think we all have a lot of questions about how we are doing as parents, are we “doing enough” and what could we/should we be doing that we aren’t doing?

First, when it came to/comes to interventions like supplements, alternative therapies, etc., how have you decided what do to and what not to do?  Me:  When April was 15 months we started the very controversial therapy of teaching her sign language.  This was done by a speech path. at Loyola College.  Then the thought was if you taught your baby sign they wouldn’t talk!!!!!!!!!!!!!!!!!!!!!!!  A good call by me.  Pat on the back going on now as I am writing this.   Another therapy some parents tried in the mid-90’s was using the drug Piracetem.  This drug was being used in Europe and Japan for cognitive enhancement for people without a disability.  A woman gave it to her child with DS, swore that it drastically changed her child and was on a TV special singing its praise.  I researched it and decided to give it a try.  A pharmaceutical company put it in a product, along with other things, to supposedly enhance our kids cognitive abilities.  It was to be mixed in applesauce or a drink to mask the flavor.  Nothing could hide that  flavor.  I somehow got April and Jake to take it.  I saw no changes and some side effects so I STOPPED.   No patting my back here.  Read more here if you care to.  http://www.ds-health.com/piracet.htm   The only other thing I would consider alternative therapy is the Interactive Metronome.  I did it right here at Children’s Hospital.   Read about it here.  http://www.interactivemetronome.com/IMPublic/Home.aspx   I am glad we did it but think Sam would have benefitted from it more if I had known he had Celiac disease.  Celiac disease was causing some of his lack of focus problems.  When we changed his diet I saw a big improvement in his focus.  Do not put your child on a gluten-free diet unless you know he has Celiac disease.  If you think he does have him tested first.   This is not a diet for the faint of heart.  

 

Everything else we have done has been very conventional.  My favorite therapy was when they were doing speech, occupational, and physical therapy with April all at the same time.  Yep, 3 therapists working with her at once.  We had to drive from our home in Maryland to Pennsylvania for that one but so worth it.  Each family needs to research the current therapies available and decide what they think is best for their child.  I also took a team approach – talking to my doctor, other families, and doing research.  Jim and I made the final decision about what to use.   I am a big believer in using the most up to date medical checklist for children with down syndrome to make sure I am not missing something in their physical health. 

Is there anything you heard about then that you regret now not doing?  Me:  I researched everything I thought would help the kids and if I thought it would help I did it.  The answer is……………..no regrets.

What are the things you did with your kids that you are most happy you did?  Me:  I am happy that we did and still do things together as a family.  That includes those big kids too (ages 32, 29, 27).  I am trying to build a huge bank of memories in all my kids.  As you know we do a lot of things with the kids-plays, concerts, museums, festivals, car shows, dances the list goes on…………….. More memories and building up their base of friends and knowledge.  When I am gone my kids will not remember the therapies.  I hope they remember all the good times we had!

Do you still fear “the future” when it comes to your children with Down syndrome (more so or differently than your typical kids?)  Me:  I think about the future.  I plan for the future (Special Needs Trust and Will).  I train my kids for the future- living on their own, handling diabetes, being independent as much as possible.  Here is what I know for sure.  I can’t control the future.  I will put as many things in place as I can.  That’s all any of us can do.  If you have a young child with DS take a deep breath and just do your best today.  All those todays will prepare your child for the future.

How do you think having three children with Down syndrome has complicated your life? How has it made it better?  Me:  Children have complicated my life………………………  Any time you become a parent your life is complicated forever.  Just because they leave doesn’t mean that your parenting days are over.  Oh no, they are just different.  Now here is what you probably want to know.  How and the heck do you do it at 62 and 68 with a 13, 18, and 22-year-old with DS?  See the statement on today in the above answer.  Today I/we will do the best we can.  When we mess up we will try again tomorrow.  I can’t imagine not having the kids.  Do I ever want to have a week alone with Jim- sure.  That’s normal.  Lately people have been saying to me things like, “Your life sure is hard.”  Newsflash, life is hard but life is what you make it.  I choose to find the joy, help the kids, love my family, count my blessings.  Every single one of them!

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Responses

  1. As a mom of a 3 1/2 month baby girl w/ Ds, I thank you for this post!

    • I am so glad I was able to help. I just know your baby is adorable. Give her a kiss from me. Susan

  2. Thank you. I know that no one can ever tell me what the future holds for me, but it’s nice to see someone who doesn’t hold resentments.

  3. “When I am gone my kids will not remember the therapies. I hope they remember all the good times we had!” WOW! So lucky to have a friend like you! 🙂

    • I feel the same way about you!

  4. Wow! Thank you for your honest answers. As a mom of a three year-old son with Down syndrome it is always nice to get a positive “glimpse” into the future.


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