in need of some advice

[colleen]

Hi,
I am a newbie. I have been lurking around for several months now and have finally decided that I need more support. I gave birth to Brianna Nicole 6 months ago today. The birth was a snap but we were unaware that she has DS and there were several complications. She had low plaletet count and high red blood cell. There was was a pin hole VSD, that has since closed. Precautionary measures led the doc to transferred her out of the community hospital to Morristown Memorial, where she spent 6 days in the NICU. I couldn't believe this was happening to me. I feel blessed that she is in excellent health ever since. I have gone through all the normal roller coaster of emotions. My reason for reaching out to you folks is I moved from Lynbrook, Long Island to Milford, PA a year and a half ago. It is kinda in the sticks. I am finally able to stay home to raise my 2 almost three old son and 15 yr. old step daughter. Brianna comes and now I am questioning if this is the right setting to raise her. She already has a service coordinator and has been evaluated for EI. At this time she gets a monthly PT consult. I am questioning if I should some how try to afford to move my family to a setting that has more resources. I don't know much about PA but what I do know I am not impressed. Though, in a week or so is the first DS support group meeting.I just don't know if a quiet, beautiful environment is gonna be enough for her. And it seems I will probably have to fight for her to have adequate services. So my question is to the people that live in either NY or NJ on how they feel services are in their state? I sorry if I am not clear on my needs but my mind is soo very jumbled. To make matters worse we have bought land and are about to build a new houses. I feel so pressured to make a decision on where to live and with all of this I have to take into account the fact that I have a child in high school. I can't just take her out and not be sure what I am doing. On top of the cost of houses today. Well with all that said I could use a little guidance from people who are already dealing with issues and situations that will effect my precious little lady. I appreciate any suggestions.
Thanks
Colleen

[Valerie]

Hi Colleen. First, let me just say that this is only MY opinion, cause I'm sure you'll get lots of opinions!

My son just turned 2 this month, we also didn't know about the DS until after his birth. He DID have a heart defect that needed surgery, so we've had many appts away from home. We, too, live in the "sticks." ;D I have also wondered about if it would be better to live somewhere where there was more resources.

The answer I have come up with for myself, is no. The heart defect has been corrected, so there's not many appts away from home, now. We do have EI come into the home, and that's the only services we have for now. We are fortunate that he doesn't have any other health problems, and developmentally, he is doing excellent. Most of the things I see his therapists doing with him, is stuff we are already doing. So, although I do question myself occasionally, (don't we all? ) I don't see that he needs anything other than what he's getting right now.

I LOVE living in a small town, and I personally wouldn't want to raise my kids in a city. Again, that's MY opinion, because I know cities have their pros, and many people LOVE to live in the city. It's just not for me. I like the small town closeness, I like that everyone knows my child. If (God forbid) he gets to the point where he becomes an escape artist, like I've read about some of the other kiddies on here ;D, I'm glad that the whole town will know who he is and will look out for him. I guess that's our support system.

The one thing I would have liked would be a support group around my area. But since there isn't one, I've found Uno Mas, and am really glad I have, because it seems to be filling that void for me!

I will have to say, if he wasn't doing as good as he is, I may have to change my opinion and go where he would get more assistance.

[Jodi]

Hi Colleen!

I live in a suburban area, and when I found out about Ryan, I thought I would have to make drastic changes in order to help him out. Turned out not to be true. We have made some adjustments (hubby is a stay at home dad right now), but nothing like I thought I would have to do. We don't have any major medical issues.

So, although we don't live in the "sticks", the only advice I have to offer you is to do what you think is best for your family. You may not have ALL the services a larger city would offer, but if your FAMILY life is what you want it to be, then I think that is your answer.

Life is funny... you can't predict anything. Something may happen in a few years that would require you to move, maybe something completely unrelated to your child having Ds. You just never know, but you can adjust. I guess I just don't think that it should be the focal point of your decision - definately a component, but not the absolute deciding factor, if ya know what I mean.

[donnita]

Colleen,
Welcome to UnoMas!

I live in Indiana, so I can't answer your specific questions but I am facing a similar problem. I am going to move from a great school district to an average (I hope) district. My daughter Cassandra is 4 and is in pre-school. Her current school is awesome. I have visited the new one and it is a fine program, but not as good as where she is now. And it is facing major budget cuts for next year and will have to reduce the already small staff.
I live in town now but will be moving to a farm. So although I think the school system is not as good, I think all the other benefits of moving to the farm will be better for her. Education is important, but I think a happy, content family is more important. And I will be much happier there!
Once Cassandra is in elementary school, I think the rural school will be better at creating an INDIVIDUALIZED plan for her education. Her current school district has such a large number of students in Special Education that they seem to have a "formula" for what they think she needs, and are less willing to try new things.

Good luck! And please tell us more about your family!

Donnita

[meghans_mom]

Hi Colleen and welcome

I live on Long Island and we do get really good services here...Meghan, at 6 months, was getting about 5 a week, I guess? 2 PT, 2OT, a special ed session...which increased as she got older. It's a difficult decison to make.
If you have health insurance you may want to inquire if you can increase services thru that - you may or may not have to pay a co-pay but sometimes you can get extra services there.

best of luck w/ your decision...and keep in touch w/ us here at Uno...we'd love to hear more about you, Brianna and the rest of your family.

laurie - mom to Meghan Mary (aka MM - 4 DS) and Matthew (2)

[wrblack]

Hi,
We live in central NJ. But we have internet friends and have met others from PA and NY.
Remember a director of a children's center telling couple from Staten Island not to move to NJ. I think she was right. I believe services in NY are generally better than in NJ or PA.
It seems to me there may sometimes be a bit more available in PA than in NJ, but you have to know how to go about getting it and work at it. But that may just be greener grass perspective on my part.
Also think services vary from area to area within states. Have impression that services are better in central and northern NJ than in southern NJ, or south Jersey. But that may be looking down my nose at the pine barrens perspective.
One monthly PT consult sounds pretty thin to me. But maybe it's all Brianna needs just now, and she will get more therapies as called for.
Trust you're not going to do anything hasty. Check with members of local support group, might get some good info there. But my impression, for what it's worth, is NJ is no better than PA, but NY is better. -- Bob, a southerner transplanted to NJ 20 years ago, lordy, lordy, lordy

[Jessie]

Hi Colleen and Welcome!!!!

Congratulations on your new little wonder.

I agree with what you were alluding to, that there are pros and cons to living in either type of area. I do believe, however, that no matter where you live you still have to search out on your own and fight for everything your child needs! We live in a small town but near our state capital and we struggle with getting through the red tape even though we are physically close to those resources. Maybe the resources would be a little closer in proximity if you moved, but it sounds as if Brianna doesn't have alot of medical problems right now, which to me would be the huge decision factor if she did. Honestly, there are so many resources available on-line, books, Uno!, etc., to help your family to learn what she will need, you might be surprised at what you guys can do for her at home.

Your family must have chosen the area that you are in for a reason . . . and if you have to move in a couple of years like Jodi said, then your family will adjust. Maybe just plan on staying there as long as your oldest is in school and then look at re-evaluating the situation then. Brianna would be what 3 or 4? at that time and it wouldn't be too late to move and get her additional resources, if that ends up being the case.

Good luck with your decision - and keep posting!

Jessie

[laurasnowbird]

This is a tough question, especially for a new parent. I'm not exactly a vet myself yet, Ethan is only three, but I've learned a few things the hard way.

I truly believe that our kids benefit MOST from a good home environment. Now keep in mind that Ethan was in PT at 1 month of age, attending early intervention at two months of age, etc. We've done PT, OT, ST, listening therapy, oral-motor therapy, horse therapy, blah, blah, blah. And Ethan is doing quite well considering his disability.

HOWEVER, Mom (me) was losing it last spring, because the schedule I was keeping was INSANE! My entire focus revolved around meeting Ethan needs, and it was NOT healthy. Not for my family, and most certainly not for me.

I can't stress enough that your decisions need to revolve around your family's needs, and it seems that you being able to stay home is going to be awesome for all of the kids. Don't ever underestimate what your presence means to your kids.

When Ethan was at the DS clinic at U of M a while ago, Dr. Hornyak related a story to me that I think pretty much tells it all. He was telling me about a mom who had a little boy with DS that had been his patient. Mom was disabled, had very little in the way of financial resources, lived in a trailer in a not-so-great school district, and was herself not very well educated. She was a GREAT mom though, and spent lots of quality time with her son. He told me that this little guy was doing incredibly well as a result of his mom's attention. He wasn't getting tons of therapies, just tons of attention.

Just my two cents worth, but I wish I could get back some of the time I spent running around to therapists. Ugh. We have stopped letting Ethan's disability define our life (or his!) and are concentrating on making him a member of his community. Maybe it has to do with acceptance of his disabilty, I'm not sure. But I know now that Ethan's time-frame is unique, and that he will accomplish things in his own time.

Please don't think I'm knocking therapy, because I think he has most definitely benefited from a LOT of what we did. He is still receiving OT and ST (at school) and horse therapy once a week. We still do oral-motor therapy with him (at home), and he has benefited TREMENDOUSLY from that. But now we make it fit our family, and we don't let it rule us. Am I making any sense at all? Hope so. Please feel free to contact me privately if you like! Hugs, Laura

[jonpaul]

Hello Colleen,

Very nice to meet you. Congratulations on the birth of your new baby Brianna !!

You and I are sort of in the same boat. I live across the river from you in Middletown, NY. My son Tommy(DS) is 5 months old. He was born 2 months prematurely and
is still at the NICU. Hopefully he will be coming home soon (doctor said maybe next week --- cross my fingers...please,please,please)

After living here in the Middletown area for about 10 years, my wife(a Long Islander) and I (from New Jersey near Morristown) finally rebuilt our home in the "sticks". We aren't considering changing a thing with the arrival of Tommy. In fact, I feel especially lucky to live in such a beautiful natural environment here to explore with him. My other Son, Peter 5 yrs. loves it here. I plan to take advantage of whatever is available to Tommy's
development in the area. When Tommy begins Early Intervention, I am sure I will learn about more organizations around here and would share that information with you. Public assistance in PA and NY may be different, but we do live in the same general area where we may cross paths. I have been on this board since Tommy was born and have learned so much !!
I look forward to reading your future posts.

-JonPaul

[christie]

First and Foremost

WELCOME TO UNO ;D

AND

CONGRATULATIONS on your new little one ;D

I am from Northern New Jersey and I tell you girl things change constantly. EI here I do believe was much better and offered lots more back when Chris was born then they actually do now Once your little one turns 3 all will be done at the school, PT, OT, Speech and such. BUT even that girl can change. We lived one town over when Chris was born and I checked out what the schools had to offer him and there was basically nothing, so we moved here and by the time we moved and he was of age to go to school Wouldn't you know the town we moved from started a GREAT program

So you just never know, even if you packed up and moved, who is to say those servies will always be there, KWIM??

You may very well find there is lots more in your area then you know at the moment. Hopefully you will find out lots more when you attend the parent group ;D

Search on line, bet you will be surprised what might be closer to you then you think.

Now this is just my opinion, K, but if you don't feel you child is getting enough PT, OT, Speech or whatever, is there any way your insurance would help?? We had Chris in private therapies too along with EI and our Insurance Company picked it all up till he was 5. Now they will just pick up a little but he is much older now.

Sorry if all my rambling made your mind more confused on this, but girl I say look at whats best for the whole family unit and the rest will follow

BEST of LUCK and not for nothing girl but OMG I would move to PA in a heart beat, you can get sooo much more for your money, not to mention its just a beautiful area and a growing area too, so you never know what great things may be coming up there

And BOB to you, New Jersey is a good place with great options for our kids, well Northern New Jersey is

CC ~

[donnita]

Oh yes, I meant to mention, as Bob did, that Early Intervention services very greatly within each state, just as preschool programs do.
I think it is common to start out with only one therapy. Cassandra started out with Developmental Therapy once a week and then we added Physical Therapy once a week when she was about 7 months old. Then at 13 months, we added Occupational Therapy twice a month and then at 19 months we added Speech Therapy once a week. I do wish we had started Speech earlier but really don't know if it would have made a difference or not.

Donnita

[christie]

COLLEEN, not sure if any of this will help but thought I would share with you...

Go to this link..

www.yellowpagesforkids.com/help/pa.htm

CC

[hannahph]

Hi Colleen, Congrats on your little one. I am a fairly new "Poster" also but have been reading this all for a long time. My daughter is six. I live in upstate NY. I live in a suburban area but am a short drive from both rural areas and bigger cities. We have excellent services where I am but I am five minutes from our local school district and five minutes from a center for developmental disabilities. I guess what I am getting at is yes NY seems great butit varies a great deal from county to county and school district to school district. I have a great local support group that I could not live with out, and we compare services all the time and they vary GREATLY. I think you are going to find this no matter where you are. If you are happy where you are there are ways to make it work. Good luck!!!

[steffipoo]

Hi!!! when Olivia was born I too lived in the BOONIES canyons private streets no streetlights an supremely cute gneral store who charges 10 .oo for a pound of cofee)in what this Venice beach native called home my entire life this was nonetheless a TOTAL SHOCKER . My son was 1, Olivia was a newborn. Hubby was away on long trips and here this l.a girl sits in booneyville. wll soon enuf we started to meet neighbors join a great church and about 4 months later found a ceneter based program for Liv which had st oral motor feeding, circle time , pt work and at about 6 moths computer work, sensory based. 2 days a week 4hrs a time or 3 days a wk 3 hrs a time. Then I felt better cause I din't want invaders in my home I am private that way and LOVED the social aspect. Perhaps you could find research similar type programs if convenient for you. just a thought Steff

[MB]

Colleen,

Having just read your original post here, I have some good news! I have had the opportunity to be a parent support person at our local children's hospital. This means that when families come to the Ds clinic from a 150 mile radius, I talk to them parent to parent.

One day a family came to the clinic who had a son born within two days of my own son. They were both 4 yrs old. I selfishly thought, "Yahoo, I can now compare apples to apples. My son had been attending what is considered the gold standard of early intervention programs, received the best medical care and was walking around with $6,000 worth of hardware on everyday between orthotics and hearing systems.
This other kid had no intervention whatsoever.

Developmentally, the other kid blew my son out of the water! This other boy had grown up on a farm in a rural setting. He was advanced in every area. I ended up getting counseling from his mother! She said that he was expected to help with the chores around the farm and played with his brothers and sisters. I did notice that his mother was very laid back. She made few demands upon the kid and really waited for him to ask for things and did not talk to him much. She was happy to wait for him to initiate conversations.

The other thing I have had the opportunity to do is observe children with Ds in schools and make recommendations. Just this past year I went to a tiny rural school district to observe a child in the third grade. The follow up meeting with the parent and IEP team resulted in me telling this team (the school requested the observation so that they could know if everything was being done for this child - how cool is that?!) that this was the highest functioning third grader I had ever observed. In fact, the director of our local Ds association and I told them that she had created a new high standard for third graders with Ds.

Again, I noticed that her mother was very quiet. She never asked any questions and barely cracked a smile when we said all the wonderful things about her daughter.

So, my recommendation is that we all move to rural areas, relax and let nature take its course! I hope this helps!

MB