life with DS child

[Anonymous]

We've just received notice that our baby (I'm pregnant) may very likely have DS. We're considering an amnio, but in the meantime trying to gather information about what life with a DS child would mean for our family (6 years, 2 years, and baby due in the summer).

I would really be grateful for the advise of people who have "been there" regarding what it's like. Not stories of love, although I know there are so many, because that's much easier for me to understanding and contemplate.

But more along the lines of

- you can expect to take your child to the doctors' offices X times a week
- counties provide great services in these areas; expect a social worker to go to your child's daycare
- you will need to budget this much for out-of-pocket expenses not covered by insurance
- it's not really realistic for two parents to be working full-time in demanding jobs (or it is!)
- you need to consider what retirement will or won't look like
- and other factual things I am sure I haven't thought of

I know there is a broad range of abilities and medical issues children with DS can have, but I'm having trouble finding information from people/sources who are 1) both informed and 2) operate without (typically & understandably, pro-life) agendas at hand. We're really looking for the "facts," to the extent that we can, about what our life might look like and changes we can expect.

Thanks so much.

[Anonymous]

OP, I'm sorry that I don't have the advice that you're looking for, but I want to wish you well. As you likely know, tests during pregnancy like this can only offer chances, and it's possible your LO doesn't have DS.

Each kid is unique, so it's hard to say exactly what to expect. I have a friend with a kid who has DS, and I don't presume to try to talk for them or act like I know what it's like, but I know the early days were particularly difficult because their little girl also had a heart problem and trouble breathing. I didn't know that this type of health problem can sometimes come with DS. She's fine now, but she was in the NICU when she was born and had to have surgery shortly afterwards. I don't want to freak you out, but just wanted to mention that.

Good luck, OP! I wish you the best.

[Anonymous]

I don't have a DS child, but some families I am close to do. I can tell you about some commonalities. I'm also going to respect your logical request to hear about the demands rather than the joys at this point, but feel compelled to simply point out that there can be a lot of joy in parenting a DS child.

-- You can expect to have many of the same experiences that other families have, whether it's reading together or teaching your child to swim, or traveling, but the timeline for these things may be different. You can also expect at some point that you'll deal with the common challenges that other parents face, from toilet training, to discovering the opposite sex, to various misbehaviors. Again, the timeline for these things may be very different. You may also find that some of the challenging stages of parenting (e.g. toilet training!) last longer and require more effort, persistence and creativity.

-- You can expect health problems during the first couple of years, be it gastro problems, or heart problems, or difficulties feeding. Most, but not all DS babies and toddlers have some kind of complication. These problems can range from very manageable to life threatening, and can involve commitments from a few doctor's appointments and some therapies, to long hospitalizations. For many kids with DS these health problems seem to diminish over time but they generally don't disappear, and sometimes new problems will crop up as the child grows.

-- You can expect that your child will need supports at school, such as therapy and enhanced staffing, and specialized instruction, although it's hard to tell exactly what combination of these things and how much. You can also expect that you'll need to develop expertise in understanding these areas of service in order to advocate for your child. If you choose to self pay at a private school, you'll likely to have to pay for these services as well. If your child is in public school these services will be free. Either way, you can expect to spend a fair amount of energy advocating for your child to be well served at school. If you live in MCPS or FCPS, this advocacy can lead to some very strong services. If you live in PG or DC it's less of a sure thing.

-- You may decide to supplement your child's education with private services that may or may not be covered by insurance. Many families find that their children benefit from tutoring, or extra speech and OT and PT, or drama, ballet, horseback riding or swimming lessons that are adapted. You can expect that these services will cost you a fair amount of money, even if insurance is contributing, and that you'll spend a fair amount of time arranging them, driving to them, etc . . .

-- If you're a working parent, you can expect that childcare will be challenging but not impossible. When your LO is young you may decide that a nanny makes more sense than a daycare center. A nanny will make it easier for your child to access services, as they can drive or be home for home therapists. A nanny can also cut down on your child's exposure to germs, which can be helpful when they are young and fragile. Once your child is older and in school, you may find that aftercare and summer camp are more complicated. Simply signing up for aftercare at your local school or the same camp your neighbors all carpool too may not work, and you may need to research programs carefully and juggle schedules creatively. You may also find that you have to advocate hard for your child to be accepted as some programs can be resistant to including kids with visible disabilities.

-- You'll probably be able to continue a career, but will probably find that you need to make choices that lead to more flexibility as there will be more Dr.'s appointments and days you need to leave early, than for typical kids.

-- You will find that there are moments of great joy as your child exceeds people's expectations, and that there are moments of heartbreak as your child navigates a world that can reject them.

[Anonymous]

At my SN support group a woman shared her experience with her adult DS daughter. She was in a work program with the county but she was getting anxious for some reason or another and she started to "mess in her pants" again. Her daughter is 35.

[Anonymous]

^^ Oh they were also sharing experiences about medicaid lifelong waivers for long term care in group home facilities, etc.

[Anonymous]

OP,I don't know if I'm allowed to post links to other message boards or not, so I hope you see this. The BabyCenter message boards have forums for DA pregnancies and parenting children with DA. http://community.babycenter.com/post/a28219249/welcome_to_the_down_syndrome_board

[Anonymous]

Sorry, I meant DS, not DA!

[Anonymous]

Anonymous wrote:At my SN support group a woman shared her experience with her adult DS daughter. She was in a work program with the county but she was getting anxious for some reason or another and she started to "mess in her pants" again. Her daughter is 35.

We know so much more about how to support and nurture children with DS than we did 25 years ago. I'm the poster with the long post, and I've worked with both adults and young kids with DS as well as ages in between. Many of the 7, 8 and 9 year olds I know have more skills as elementary schoolers than the adults I used to serve ever acquired. I think that we will find that when the current group of kids grow up they are much more able to hold employment in the community, and are long past basic skills like toileting.

[Anonymous]

Each SN child is unique, just as each ordinary child is unique. I belong to a support group for children with a particular syndrome and I can tell you that sharing one child's story is in no way indicative of another child's course, either physically, cognitively, socially, educationally, or psychologically. That's because we all have different parents, other genes, life experiences, temperaments, likes and dislikes.

Your experience with a child with DS may or may not involve lots of doctor's visits. Children with DS do need Early Intervention because they tend to walk late and talk late and that's why EI is helpful, but this is not a medical issue, it's a developmental issue.

It's certainly realistic for SN parents to work full time. My husband and I both do.

Yes, you need a retirement plan and a special needs trust for your child.

[Anonymous]

You'll probably get a range of views by reading the blogs here: http://downsyndromeblogs.blogspot.com/

[Anonymous]

Hello,
I don't have an DS child, but I am in regular contact with adults with DS and their families.
First want to repeat what has been said in earlier posts, which is that there can be a very wide range within DS. Some have rather mild physical issues, some have many more health complications. All do have physical health complications, and they will ebb and flow throughout the lifetime of the person.
Also a very wide range of cognitive function for folks with DS. Some are able to hold down jobs, live outside their home (usually in some kind of assisted group setting, but still a form of independent living) others will not ever be able to do either.
The life expectancy of folks with DS had increased tremendously over the years. While this has an obvious benefit, you need to understand that in all likelihood you will pass away before you child with DS does (this was not the case in previous generations). As a result, your older children will have to assume full caretaker responsibilities for this sibling when you are gone.
My best wishes for you and your family. I think you are asking very thoughtful, important questions.

[Anonymous]

Anonymous wrote:Each SN child is unique, just as each ordinary child is unique. I belong to a support group for children with a particular syndrome and I can tell you that sharing one child's story is in no way indicative of another child's course, either physically, cognitively, socially, educationally, or psychologically. That's because we all have different parents, other genes, life experiences, temperaments, likes and dislikes.

Your experience with a child with DS may or may not involve lots of doctor's visits. Children with DS do need Early Intervention because they tend to walk late and talk late and that's why EI is helpful, but this is not a medical issue, it's a developmental issue.

It's certainly realistic for SN parents to work full time. My husband and I both do.

Yes, you need a retirement plan and a special needs trust for your child.

While there a definitely children with DS who don't have concurrent medical issues, these children are not in the majority. Children with Down Syndrome have about a 50% chance of congenital heart problems, and similar rates of vision and hearing problems. Put together, at least one of these 3 things will impact about 88% of children with DS. In addition, children with DS are at increased risk for certain kinds of leukemia, hirschsprung syndrome, skin problems etc . . . Almost all of these things are treatable, and kids with DS can live a long, healthy life, but most kids with DS, especially infants and toddlers are likely to see a doctor more often than the average child. Even if an individual child doesn't have symptoms, their pediatrician will probably suggest that the child be evaluated by a cardiologist, and opthamalogist, and other specialists so that issues are caught and treated early.

I am very strongly pro choice, but based on my experience as a special educator I also know that I'd choose to carry a DS child to term. My kids happen to be adopted, and I was open to children with DS both times. It happened that I ended up with children with other SN. I say this because I don't want it to seem like I'm painting an awful picture of raising a child with DS. Kids with DS can be wonderful and rewarding to parent, just like any other child. But the OP asked for the whole truth, and the truth is that raising a child with significant SN can be more labor intensive and time consuming than raising a typical child, and appointments (Dr., therapist, schools) are reason why.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Each SN child is unique, just as each ordinary child is unique. I belong to a support group for children with a particular syndrome and I can tell you that sharing one child's story is in no way indicative of another child's course, either physically, cognitively, socially, educationally, or psychologically. That's because we all have different parents, other genes, life experiences, temperaments, likes and dislikes.

Your experience with a child with DS may or may not involve lots of doctor's visits. Children with DS do need Early Intervention because they tend to walk late and talk late and that's why EI is helpful, but this is not a medical issue, it's a developmental issue.

It's certainly realistic for SN parents to work full time. My husband and I both do.

Yes, you need a retirement plan and a special needs trust for your child.

While there a definitely children with DS who don't have concurrent medical issues, these children are not in the majority. Children with Down Syndrome have about a 50% chance of congenital heart problems, and similar rates of vision and hearing problems. Put together, at least one of these 3 things will impact about 88% of children with DS. In addition, children with DS are at increased risk for certain kinds of leukemia, hirschsprung syndrome, skin problems etc . . . Almost all of these things are treatable, and kids with DS can live a long, healthy life, but most kids with DS, especially infants and toddlers are likely to see a doctor more often than the average child. Even if an individual child doesn't have symptoms, their pediatrician will probably suggest that the child be evaluated by a cardiologist, and opthamalogist, and other specialists so that issues are caught and treated early.

I am very strongly pro choice, but based on my experience as a special educator I also know that I'd choose to carry a DS child to term. My kids happen to be adopted, and I was open to children with DS both times. It happened that I ended up with children with other SN. I say this because I don't want it to seem like I'm painting an awful picture of raising a child with DS. Kids with DS can be wonderful and rewarding to parent, just like any other child. But the OP asked for the whole truth, and the truth is that raising a child with significant SN can be more labor intensive and time consuming than raising a typical child, and appointments (Dr., therapist, schools) are reason why.

OP here, this is really helpful. Again, completely recognizing that there is no such thing as "typical," I'll ask it anyway: what is typical in terms of these kinds of appointments? Is it possible to quantify? I totally get taking one's child to the doctor "more than the average child," but what could we expect that to mean? It's so hard to envision - I know it's the same for children without DS as well, but... I have this image of my life becoming one in which I become more of a caretaker, driver-to-doctor's and therapists appointments, than anything else, and a life that may be constantly plagued by the worry of some really big deal thing manifesting itself in my kid (or, dealing with a life in which some very likely "big deal" thing happens to my kid). Clearly, that can happen with any child, but I guess the question is: how likely?

[Anonymous]

OP, I'm sorry you have to wrestle with this. You're getting good advice here. I would add that yes, you can both work full-time but you can't both have "demanding" jobs. If you keep working you will want a FT nanny as opposed to day care just given medical issues -- even if your child is not very medically involved many DS kids have weakened immune systems and you won't want to put the kiddo in day care (provided you could find one to take dc) at three months.

Also, even if you are comfortable having nanny ferry dc to various therapies, all of your vacation time and sick time will be spent attending to dc's needs.

Best of luck to you and your family.

[Anonymous]

OP, if I were you, I'd run, not walk, into that amnio appointment, not just 'consider' it. Nothing is worse that guessing, nothing.. Once you know for a fact, one way or the other, it would do wonders for your mental health.