Hello all,
I am rather new to this so please bear with me in future posts. I literally have no idea what I'm getting into and need any help I can get. It started with a divorce, which led me to reconnect with an ex girlfriend. We have started to rekindle a relationship, and things are progressing naturally. The thing I need help with is that she has a 3 yr old daughter who has DS. The information I have on DS is only what I can google, and that doesnt answer too much. What do I need to ask her?

Hello and Welcome. You asked what do you need to ask her....well, what do you want to know about her daughter?

All of our children with Ds are unique, but do generally share in alot of qualities. At 3 years old, I'm sure her daughter is doing alot of things that typical 3 year olds do. Many kids have low muscle tone which generally delays sitting up, rolling over and walking. However, there are plenty of kids who walked at a year like many typical kids do. There is no set of physical features, or 1 set level of functioning that people with Ds have. One thing to mention is, the amount of physical markers or features someone has does not indicate their level of functioning. You could have every facial feature and physical feature associate with Ds...but be very mildly cognitively impaired or not impaired at all. On the other hand, you could have very few physical features, but be more severely impaired cognitively.

Does she have any medical issues? Some kids do, some don't. My son in particular had a heart defect that was surgically corrected at 8 weeks old. We see a cardiologist yearly just to check on him. He's now a very active 6 yr old who just started kindy. Other than the heart defect, he doesn't have any other medical issues associated with Ds.

I know most members of this forum love to talk about their kids (that's why we are here). So if you have any specific questions, ask away.

_________________

Lisa - Mommy to Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.

Thank you for response. Guess I just dont know what I need to know. Is downs something a child can grow up to be independent with? or are they reliant upon their parents for the rest of their lives? At 3 I know its too early to tell with her, but in general terms is what I mean. She said she has Sarah in regular daycare with special tutors and counselors. How long will counseling be needed, or is this all just a day by day, never get any answers thing?

It is quite early to say whether she will need someone to help her throughout her life. Most people do live independently with little to no help from their parents. It all depends on the level of functioning and being able to care for herself as an adult. The help she gets at the daycare also depends on her needs. Some kids never get any assistance some get part time some get full time. It will also change throughout the years as her needs and level of independence will change. My son just started kindy and he has a full time one on one aide. Mostly for safety reasons. ( he likes to run away and can just take off and go god knows where..lol) but most of the children with ds do need some kind of help in schools and daycare. They get speech therapy occupational therapy and physical therapy if needed. You cannot say that she will not be able to be on her own in twenty years because she recieves help now.

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Andrew (17/07/2005) DS

There is no way to predict how independent a child with DS will be when they are an adult. The vast majority of adults with DS live in some sort of assisted environment, not independently, although that setting can vary widely depending on their needs and even more importantly, the availability of community resources. Some communities have great options for group homes or assisted living communities that allow a higher degree of independence while still providing supervision. Unfortunately most communities do not have these options yet. I believe most adults with DS live with family members throughout their lives.

But you are getting way ahead of yourself! What a 3 year old needs from those in her life are love, encouragement, and learning (like every other 3 year old). Most also are helped by therapy (not "counseling", but therapy that helps the child gain skills and improve their abilities). Most get special services throughout their school years, and these services are all based on the child's needs.

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Mary, retired Pediatric Clinical Nurse Specialist
Great-niece Tarryn (DS, 4.5 years old)

The best advice I can give you in this situation is to observe and then act. Watch how her mother interacts/instructs her at home and slowly build your way into those routines.
DS kids (sometimes) have a hard time with change, and routines often equal better behavior. Your best bet is to figure out the routine, and then figure out where you can place yourself in that routine.

I'm so glad you have come here to ask questions, it means you care enough about this family to try and understand it.

Kudos to you for bravery!

I was a single mom for years, so I know the stress you can feel coming into the "ready made family". You are off to a good start.

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Mom to Ayden(2/03) Zavien(12/04) and Jackson DS (12/10)[img]

Thank you all so much. I know I am way ahead of things here, just new to the whole situation. My children are already 13-19, so idea of going back to potty training is odd enough, not to mention a child with developmental disabilities. I always have tended to over think things, guess I am just gonna hafta get over that huh?

One of the things that's important to us as parents (and ultimately to our children) is that they are people first - I know that that may sound a little funny. That little girl is a little girl - who happens to have DS. She's going to have her own personality, just like you and I. Making a conscious effort to approach and get to know her this way is really important. I'm just saying it plainly to emphasize it.
Thanks for asking!

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Nature goes her own way and all that to us seems an exception is really according to order.
-Goethe

Somehow I did not see this post before. Dean and I met when Angela was 7. He has just one son who was 14 at the time, And Angela was very much like a 4 year old. It was tough for him to think about going backward too. But really, he has been a wonderful dad.

Dean had to learn about the medical stuff quickly. We had been together over a year, then just a couple weeks after we moved in together, Angela ended up in the hospital where she stayed for several months, and I mostly lived there for that time.

I will tell you this, I was extremely protective of Angela, even more so than I was my other kids. (who were older teens by that time.) Angela had no way to tell me if something happened to her, so there wasn't really a choice. I NEVER left her alone with people I didn't know extremely well, and that included Dean for MONTHS, and even then it was only to run to the store or something. (part of that was because I didn't want him to think I was going to take advantage of him and use him for a babysitter. LOL) Anyway, don't be surprised if your girlfriend reacts in a similar manner, and please don't take it personally if she does! It's not about you, it's about her child, and her child will come first.

What you'll have to be prepared for (that Dean discovered along the way) is in incredible amount of flexibility. That great weekend you had planned without kids may end up not happening, and you have to be o.k. with that. Or that evening out with friends the sitter (or bio parent) might cancel, and you have to be ok with that. While this happens weather a child has DS or not, it seemed to happen far more with Angela than it did my other kids. And we needed our break more than with the other kids. Angela's care at 3-4 years old...and still at 7 really... meant pretty intense supervision, and everyone needs a break from that, but I rarely got it.

Not that you're getting married at this point, but step parenting is difficult in general. It is tough to agree on parenting sometimes, and this can be intensified when there is a child with a disability. I have been step parent to three boys...it's tough!

So those are the things you need to think about. Not as much about DS, because if you hang around you will either adore her or she'll drive you crazy, just like any other kids who do not belong to you.

_________________
~Leah~



My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Noah 24, Tyler 22, Angela 15 (DS), Axel 10 (DS, adopted from Serbia 12/2010)