Katrina Bosch

Thanks for the article.  As both a parent of a child who has a disability and someone who works in the field, I appreciate it.  I especially love the suggestion of a unisex bathroom as this is so often a challenge as a female worker when assisting a male with a disability with toileting.  It just seems so inappropriate to take a man into a women's washroom. 

I'm also glad you clarified your statement, "God doesn't make mistakes" with the verse from 1 Cor 12 - so often I heard well-meaning family members and friends say that to us after our son was born with Down syndrome and I found myself often hurt by it and left wondering if others saw our son as being "broken" or "a mistake".  We loved him and were thankful for him as a gift from God, not as someone who was flawed or in need of fixing.  He is now seven and continues to bless us and others daily :)

It was great when people said "congratulations" and seemed genuinely happy.  Another great thing was when people who remarked on how cute he was or how much he looked like me or my husband or his big sister.  Also when people offered support or asked to do normal things - go shopping or out to coffee.  Even people who came by to visit - it was definitely a true friendship test to see who still came around and called and who didn't - and I would also say that if a new parent is standoffish for a while at first, don't give up - maybe give them some space for a while but after a bit they will crave friendships again and will need you to be there for them.  While our son has been a delight to have in our family, he has also had a few major medical challenges and required surgery on both his heart and his neck.  He also was very sick for a while until we discovered he had celiac disease (gluten intolerance).  The support we received from people during those trying times by way of meals, calls, visits, gift cards - was wonderful.  Also it was great when people made offers to babysit or even hold our son (as a baby) - it showed that they accepted him and weren't afraid - also it's great now when people talk to him - ask him how he's doing rather than ask us how he's doing.  Other suggestions on ways to support families in your congregation might be to set up a volunteer list for a child who needs extra support in their sunday school or if you notice an older person or child/teen with a disability who is sometimes unable to sit a whole service you could offer to take the individual for a walk so that his/her parents can stay in church and not always be forced to leave with their son or daughter.  Use the person's name as much as possible and avoid referring to the person by their disability (ie say person with schizophrenia rather than "schizophrenic" or "person with a disability, person with Down syndrome" rather than "disabled guy" or "Downs boy") And when in doubt - ask!  Most families of a person with a disability will be happy to answer your questions and help to educate you - after all we ALL love to brag about our kids and most parents/family members also realize that the more people know about their child or family member's disability the better it will be.  We also realize that at one point, before our child entered our lives or our family member became disabled, we also had no clue about how to talk or act around people with disabilities - and we are happy to help with advocacy and educating others to raise awareness and acceptance.  It's much better to ask questions than make assumptions. 

Other things that I would advise against saying or doing - don't say "I'm sorry" (the child is alive and a gift from God), don't say "you can't really tell he has a disability" (I had a lot of people at first try to make me feel better by saying they couldn't see that our son had Down syndrome but that didn't change the fact that he did :), avoid the use of platitudes or stereotypes (eg: "people with Down syndrome/disabilities are always so happy!" or "people with disabilities are 'forever children'")  

Oh and one last thing I would advise to all people - never ever ever call a person "retarded" - it's a very hurtful term.  Don't say it when you are joking around with your friends.  Don't even say it to refer to yourself when you do something stupid.  Or to an object.  Because by saying that something is "retarded" when you really mean that it is "stupid" you are ultimately saying that people with disabilities (those who have a medical diagnosis of mental retardation) are stupid too.

Hopefully that all made sense.  Thanks again for spreading awareness to make churches more inclusive :)

Katrina

Hi everyone :)  Just popping in to introduce myself and say that I would also be onboard with an online discussion group for parents of children with special needs.  Our son is 7 years old and has Down syndrome as well as a repaired spinal anomaly and celiac disease (allergy to gluten - wheat/rye/barley).  We are in Chilliwack BC, we also have a 9 year old daughter and a 4 year old son and I work fulltime while my husband is retraining for a career in computers after a work-related injury.  Great to "meet" you all!

Katrina

I entered :)  I hope I got all the answers correct - there was one that was a bit tricky.

Our son, Brant, is a delightful seven year old boy who has Down syndrome.  After Brant was born we did grieve - my husband and I were only 27 years old and I had taken my prenatal vitamins, hadn't smoked or drank, etc - so it was a shock to learn that he had Down syndrome.  Of course, after the initial shock wore off we embraced Brant as a valued member of our family and learned that a lot of the stereotypes that most people believe about Down syndrome aren't true. 80% of babies with Down syndrome are born to mothers UNDER the age of 35 (because more moms in that age group are having babies and are more fertile, even though the chances of having a baby with Down syndrome do increase as a mother ages if she becomes pregnant).  Down syndrome is a genetic difference that causes a third copy of the 21st chromosome in every cell of a person's body.  And it occurs 1 in 800-1000 live births and is not genetic (except in less than 1% of all cases) and is not caused by anything the mother did or didn't do during the pregnancy.

As for the high termination rate - it's a bit of a misleading statistic.  Yes, sadly, 9 out of 10 women who discover they are carrying a baby with Down syndrome during pregnancy choose to terminate the pregnancy.  BUT in order to get a 99.9% accurate prenatal diagnosis a woman must undergo a procedure called amniocentesis in which a needle is inserted into a woman's belly and amniotic fluid is withdrawn from the amniotic sac - this procedure carries a 2% chance of sponataneous abortion (or miscarriage) so many women who would not terminate their pregnancy if the baby had a genetic anomaly choose not to have this procedure.  Also, for many women (like myself) there are no indicators or "markers" that show up on the ultrasound that would alert a doctor that something might be different about the baby.  I believe the statistic is that a "marker" does show up on the ultrasound in about 50% of pregnancies where a baby has Down syndrome (markers can be bright spots on the kidney, bowel, brain, or heart, thickened nuchal fold in neck, smaller nose, etc).  Usually an amniocentesis is only recommended for women who show a "marker" on the ultrasound or are over the age of 35.

Also, I think it's great that the National Down syndrome groups are providing information for genetecists and doctors to hand out to parents who receive a prenatal diagnosis.  Up til recently (and from what I understand still is happening in some instances) some doctors and genetecists were/are encouraging parents to terminate  the pregnancy stating that the child will never live on his/her own, never learn to talk, never learn to use the toilet independently, not walk properly, be a burden for the rest of his/her life, etc.  By providing a more realistic outlook and perhaps even connecting the expectant couple with a family who has a child with Down syndrome, we can share the joy and blessing a child with Down syndrome can be for his/her family.  Our son is fully included in school, has tons of friends, has a GREAT personality (quite the comedian), walks, talks, uses the toilet, etc - and many adults with Down syndrome can live independently or semi-independently, have jobs, and some even get married and get their driver's licenses.