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Lady Florida.

Help for parents expecting a child with Down Syndrome

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Hello. Some of you might not recognize my name if you don't frequent the chat board so I want to let you know I'm not new here, as you can see by my post count.  I've been around since before the 2008 version of the forum. My son homeschooled all the way through and finished high school two years ago but I just can't bear to leave The Hive. :) Of course it doesn't matter how long I've been here but I know some people are hesitant to say much to new members.

Dss and ddil are expecting their third child, a girl, in August (yes, my signature says Sept. but since the upgrade I've been unable to change it). They found out recently that she will be born with Down Syndrome. Now, I'm quite familiar with Down as a former ps exceptional education teacher. And I didn't just fall into it like some ex. ed. teachers, it was my chosen field. They've been asking me a lot of questions because they see me as an expert. The thing is (and I told dss this) I've been out of the classroom for almost 21 years, since ds was born and I became a sahm. I know available services have changed a good deal in the last 20 years. I also reminded them that while I taught those kids, at the end of the day I went home without them. Teaching a child and living with a child are totally different. Finally, at different times in my career I taught all three school levels - elementary, middle, and high school - and I worked with adults in residential group home settings. I've never worked with babies or anyone under school age. I'm flattered he thinks I know so much but I really don't. 

I thought they'd be offered more counseling and information than they have been and have to say I'm surprised and disappointed in the medical community here that they've had to seek out so much on their own. They've been doing a lot of online research. Maybe counseling and such will come as time goes on, but right now they're still trying to absorb the news. They want to learn as much as they can as soon as they can.

I came to this board hoping someone can help me help them. Dss said he's found a lot online that shows life with a child who has Down Syndrome through rose colored glasses. He wants to hear positive things of course but he also wants reality.  Is there a particular group that can help them learn more about the challenges they'll be facing, including the possible health problems that often go with Down Syndrome? Ways to help her from the day she comes home? Are there recent books worth reading? They have two neurotypical young boys (6 and almost 4) so helping young siblings understand is also going to be on the table for them. Also if you know of anything specifically in the Orlando, Florida area (Osceola County) can you direct me to any contact info for them? 

 

 

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I have a son who is 6 with Down syndrome. He also has serious medical challenges that are not typical of kids with DS. Despite all of his struggles, he is truly a happy, content boy who charms everyone he meets and we, as a family, are better for having him in our life. 

He has 3 older siblings who were 7, 5 and 2 at his birth. Our son with DS was hospitalized for over 200 days in his first 2 years but his experience is not typical. 

Our son has attended ECSE preschool where he is adored by teachers and classmates. He will start kindergarten in the fall and will be largely mainstreamed with pull-outs as needed. He also gets speech therapy privately in addition to speech, OT and PT at school. 

We do not live near you but I can suggest the following resources:

Down Syndrome Diagnosis Network on Facebook

Jack’s Basket - a nonprofit that welcomes children with DS with a basket of helpful gifts and resources for their family 

Bethel University BUILD program — a university program for students with intellectual disabilities for whom college might not have been an option in years past. Obviously, a ways off, but knowledge of programs like this is helpful for many parents to envision their child’s future.

I’m happy to answer any questions via PM.

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Also, most states have early intervention programs from birth to age 3 to help kids with DS. They should look into that right away. It was a fantastic resource for us.

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My son has autism and for taking him to see the optometrist — I heard in town a certain optometrist was best for special needs and carried special eyeglasses (if I understood this correctly) for ds.  I heard about them through church from another parent.  Our appointments would go very smooth!

My cousin needed to travel to a city to see a non-prejudiced doctor unfortunately, her parents networked through special olympics to find the doctor, that is my understanding.  

There is a ds parents organization, I would try to look for the nearest chapter even if it is in a nearby city.  I heard very good things about the one in my former town, it was a chapter for several counties I think.

Some kids will also have autism and if so some insurance is difficult about covering therapy.  It could be worthwhile to have the autism diagnosis also for some situations.  But I have no idea how much that comes up, I don’t have a sense of it.  

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Well, I looked it up and the parent group I know about doesn’t look like it is affiliated with any national organization.  

Where I live now I would try contacting the ARC and go from there, with what I am familiar with here.  

If their medical professionals aren’t being super helpful sometimes it’s because a few specialize (or have a good reputation) and everybody just goes to see them.  It might be worth trying to find out who is popular in the area.  

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https://icanshine.org/

Oh, this organization teaches bike riding.  I have heard really good things!  We moved and an organization has hosted this both places we have lived within an hour drive.  

I’m also finding out more about summer camps as my son gets older.  There are a lot of really neat summer camps as kids get older, through church camps and private camps.

We are planning on my son going to a sleepover camp for a week this summer hosted by a civic organization, it will have kids with all kinds of special needs so including ds.  I have heard wonderful things about it and a few years ago I would NOT have thought my son could go to a week of sleepover camp.

I’m also planning on him going to a week of daycamp this summer, but not doing the sleepover option (maybe in the future?), so doing some things special needs doesn’t mean not doing any mainstream things.  They can both be options.  That was weird for me for a while like I thought it was supposed to be one or the other, but it’s not like that, they can both be really good options and it just depends what works for different kids in different areas.  

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My ds16 has Down syndrome. He has not had any of the serious health complications that many kids with DS have. He had strabismus and had two eye surgeries at 18 mos and 3 yrs to adjust an eye muscle. He has worn bifocals for years. He is tested yearly for thyroid issues because kids with DS are prone to it. My son also is tested every few years for atlantoaxial instability (which he doesn't have) but is usually only an issue where certain sports are involved. He was diagnosed with cataracts about a year ago. He is monitored twice and year and they have not progressed.

My son had respiratory issues for many years. His airway (and ear canals) were much narrower than average so every irritation turned into a croup episode (probably not all actually croup but that's how it presented...really Reactive Airway Disease). We owned a nebulizer that we used every time he got sick and we had a lot of nighttime trips to the ER for breathing problems. 

We started with early intervention services when ds was 1 month old and continued to 3 yrs. We weren't happy with the speech services and opted to seek out private speech therapy but the PT and OT were excellent. We continued with speech for several years.

We belong to a Down syndrome association in a neighboring state because it is closer to us and it is an amazing network of families. Your local children's hospital (and genetics dept) could probably connect your family to local DS organizations and parent outreaches. I know our hospital connects expectant or new families with our DS group. No, the medical community in general was not very helpful. But the geneticist we met with after my son's birth (we had no prenatal diagnosis) was wonderful.

I received the book Babies With Down Syndrome but it looks like there's one that is more current. https://www.amazon.com/Parents-Guide-Down-Syndrome-Information/dp/144059290X/ref=sr_1_5?s=books&ie=UTF8&qid=1526405246&sr=1-5&keywords=down+syndrome

I'm providing a link for my group because it has many excellent resources. It should have some helpful info, regardless of the state you're in. But it could give ideas for where to go for more info. https://www.dsadelaware.org/resources/

Best wishes!

 

 

 

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Thank you @samba. I just ordered that book. There's a respected children's hospital in their area (our youngest grandson spent time there when ddil had a placental abruption late in her pregnancy) so I'm pretty sure they're checking for information/support groups there. 

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I haven't been on the board in a while, so I'm a little late to this party, but I have a 12 yo son with Down syndrome, so I thought I would weigh in. :) I would encourage your DSS to look into local groups and Down syndrome chapters or Buddy Walk in order to connect with other families locally. That has been the best, most beneficial, supportive, and informative solution for us as we raise our son. There is a lot of overly positive stuff on-line at first glance, and I think that is because life with Down syndrome, a lot like life without Down syndrome, is a mixed bag of good and hard things, but unless our kids are still very young, most of us are sharing our challenges privately with other families we know personally, irl or on-line, that we have come to know well and who we know will understand our struggle. Community has been a huge benefit we have gained as a family having a child with Down syndrome. I think that would be my best advice. Find community (facebook is another place to start--though I would warn, in facebook groups often people go there to air their frustrations or get advice on issues without also posting their happy moments, or normal-everyday moments, so that is a flip-side of the coin that makes life with Down syndrome seem perpetually overwhelming!), get good information about what to be concerned with in the first year (the book Samba recommended would work for that), and then just enjoy Baby and understand that this is a step by step journey. With my son, development is in slow-mo, so I never have had an issue with being un-ready to help him, because I've always had plenty of time to do a bit of research, ask questions, and then form a plan. We have a lot of struggles, and it isn't easy, but it is always good, and we always find where we are going. Their child will have their own unique combination of challenges and strengths, much like their other children do, and they will find through trial and error what solutions are best for their kids and their family as a whole. And last, it is okay to have Down syndrome. It's okay to have a disability. Whatever the outcome, it's okay. It's really difficult to go through a complete reorientation. I hope your DSS and family are able to have loads and loads of grace for themselves, and loads and loads of peace through the journey. There will be a lot of helpers, a lot of people cheering them on and loving them. Sometimes, in the really normal moments of life when our son is doing his thing, my husband and I look over at each other and say, "We have a kid with Down syndrome! Doesn't this only happen to other people?" We really do feel like we hit the jackpot. 

Here is a fun resource I like. This site is run by a mom of a child with Down syndrome. The mom, a personal friend of mine, is also disabled (deaf) and has been involved in disability advocacy for years before she became a mom of a child with a disability. It has been an eye opening and wonderful experience to view parenting a child with an intellectual disability through the lens of the disability community itself. There are resources for parents on this site, as well as many fun stories of people living their lives with Down syndrome.

http://www.adayinthelifewithdownsyndrome.com

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