Looking for Help with my Quest for Info

[Cbean]

Ok, the Quest has begun...and so have the questions. Laurie aka meghans_mom - you mentioned to look up Early intervention and local ARC office. OK, don't know where in NJ Early Intervention falls under, so went to call my local ARC. I dialed then hung up immediately because I realized I didn't have a clue as to what to ask for or how to. DOH! I felt like such a bozo! Is DS the only disability ARC handles? Is there a specific department to ask for? Gosh, I really don't have a clue. If my fellow NJsians are reading and have any advice for navigating the NJ gov - I'd greatly appreciated hearing from you. Went on NJ state website and have to say I've read easier stereo instructions. Ok, baby steps...definately need to take this slow!

Thanks again all!
Christine

[matthew'smom]

Hi Christine! Welcome and CONGRATULATIONS to you and your hubby!
I am Mommy to an 11 mo old boy and I'm a special education teacher as well. I remember that feeling of not knowing who to call and what to ask!
I would first look into the Special Child Health Services in your county. They are the people who will coordinate your early intervention. A social worker there may also be able to direct you to a support group. I don't have any advice for you on ARC as I have not called them myself yet!
Good Luck!

[ALLISA]

Hi Christine !

I think I welcomed you before, but just in case ... WELCOME !


Your post makes me laugh remembering when Erin (now 4) was born. We did not know she was going to have DS, so as we tried to absorb all the news & then the issues with her health ( all fine now ;D ) all I could remember the docs saying was "get early intervention"... well I was clueless .....as only a niave (lucky) parent with healthy kids can be.... and didn't know Early Intervention was a thriving nationwide organization.

I truly thought it meant "get help (intervention) and get it EARLY !!!" I was so overwhelmed with how I was going to find good therapists and how would I know where to look, who was good....etc etc.... I didn't know I could look in the yellow pages under "early intervention" and find it !!

Call the ARC if you want ...and tell them you are expecting a baby with DS and looking for where to go for services... they'll probably just give you the phone number to your local EI center. Or just look in phone book under Early Intervention. I was AMAZED to find out my EI center was about 1 mile from where I grew up. I just didn't even know it existed and now I don't know what I'd do without it !!

I bet they have a DS Group you could hook up with.... Uno Mas is AWESOME... but it is real nice to connect with "locals" who are maneuvering the school system & know quirky things about your area.

Good luck... this little baby & you are going to be very well off for all your research !
Allisa

[christie]

CHRISTINE, this may be way more info then you need BUT you asked

Try this site, lots of info for New Jersey...

www.yellowpagesforkids.com/help/nj.htm

CC

[Betty & Ian's Mom]

Sorry Christine that I can't be of much help here !!
When Betty was born they had a social worker at the hospital give me all the phone numbers for EI, Nads, some other importany numbers for me to get things rolling !! Made all my calls 2 after the morphine wore off !! Betty was evaled at 2months and started 2 weeks later in therapy !!

Good luck on your quest, let us know how you are doing with it !!

[YoshsMom]

Hi Christine,

Special Child Health Services is the place to go for EI. They will assign you a caseworker who will help you with conacts with other agencies. Also, call your county Dept of Developmental Disabilities. They don't do a lot, but they sometimes have some money to help with extra expenses.

Ask your pediatrician if he/she has experience with kids with ds. If not, and you have a dr you really like, share any books ar other infor with them. It has always been a big help to me that Yosh's dr. knows what to expect and what to look for in kids with ds. I like that she celebrates his successes with me instead of measuring him against the expected milestones of a typical child.

[TriciaF]

Christine, Welcome! I haven't had a chance to say hello but read your other thread. We are so glad you are here and love your attitude. I can't say it better than all the rest of the gang.....so I will just say....you will find that the community of people and organizations surrounding people with disabilities are as awesome as the individuals themselves. You will wonder how you never knew that all these wonderful people existed. I have constantly been amazed at the people that our son, Patrick 4 1/2 with Ds, has introduced into our lives. It has truly enriched my soul.

On the subject of an Early Intervention therapist, I would say that my best resource for information were parents in the local Ds support group. In my area, luckily, we have 3 or 4 choices of which provider we want to choose for Early Intervention. Now, bear in mind, you can change providers at any point in time you choose....so even a situation that is not right for you can be changed at any time. In our area, many parents felt that the two private companies were a notch above what was offered by the county disabilities board which also provides EI services. I can't say, as I went with one of the private providers and can't compare. But, other moms have said they found the private providers to have less turnover of EI's and EIs with more professional backgrounds in a specialty; early childhood education, speech etc.

We have had great EI services, but I have found that even the best did not inform me as completely about available programs as did other parents in my area. I am still discovering that I am often educating the providers about programs other parents have mentioned to me either at our Mom's night out or here at unomas.

A local group may also have a lending library were you can check out the Ds the First 18 months video....I think its a good new resource. Also, your local group may have a parent to parent organization where they hook you up with either a volunteer or a paid family partner that is also a parent of a child with Ds. That parent can help guide you through the services, being your personal sounding board. That is what I do for the organization here and its great fun to talk to all the new families. They get lots of agency support but darn it, theres nothing like talking with people who can really relate, you know?

~You get to research Holland before you land!!

Come back often, we relish our roll as tour guides.
~Tricia in SC

[meghans_mom]

Christine - before Meghan was born I called ARC because i had no idea who to call and what to say - i explained to whoever i spoke to what was going on and they pointed me to a woman who ran the local ARC who also had an adult daughter w/ DS. She said she would loan me books, etc etc,
I never heard from her again. But I did call them again after MM was born, as an option for her therapies and all.
Oh and yes, ARC deals w/ many disabilities - but not if they're limited to physical - but I can't be sure about that.
I think they also gave me the number for EI and I called them...
We are lucky because we have a place here called the Association for Children with Down Syndrome. It's pretty much the only place like this in the US. they do everything, from EI to preschool, a plus 5 program, young adult groups,etc...so i called them and spoke to a social worker there.
she told me to call after the baby was born and i was ready to set up an eval for Meghan. And if I wanted to visit the school before/after MM was born, I could call and set up an appt. I wasn't ready for that then.
Unfortunately, there's not too many people who are helpful BEFORE the baby is born, but sometimes you luck out.
That's something I'd like to change someday - because I would have loved to go to the support groups at ACDS...one day I'll set something up.
You can also check w/ the NDSS and NDSC and see if there are affiliated parent groups in your area.
It's alot -- I know, but take it slow. it'll all come together in the end....but you sound like you're doing great so far!
best of luck!!
laurie

[Robin]

Hi Christine..... I bet your mind is on overload as I type this I found EI (Early Intervention) thru our school district so if you can't find it elsewhere you can always call there and say you are having a daughter with DS and can they direct you to the proper place. Also...about Childrens special health services that everyone is telling you about...they were never any help with Chase as he didnt qualify and I am hoping and praying here that your daughter doesn't either:D cause you have to have something else going on medically to qualify, DS is not a qualifier for them and we only want her to have DS and nothing else Healthy baby is the name of my game
However, the ARC is a great place to call for info in your area and they ae so used to getting calls from people saying "help this is my situation" They cover any form of disability that involves mental impairments. Super Big {{{HUGS}}} to you while making all those calls! I am hoping they have a support group in your area for families with a child with DS because that was the most helpul to me, I felt like I fell into a huge pile of friends who had been where I was and knew how we felt and what we needed.
hugs, Robin

[Cbean]

Thank you all! Once again I appreciate your responses! I am wondering which will be harder...figuring out all this ARC, EI stuff or naming this baby. My guess is naming her.

I'm actually printing all of your replies so I can start using all of your info in my "Quest". It's a shame that these departments seem to differ from state to state. It seems like some areas really have their act together and others need to catch up.

I feel like I'm already in Holland and I'm just sitting here waiting for my daughter and luggage to catch up with me.

I intend on talking with my son's pediatrician. I love him as does my son, but I am prepared that he may not be my daughter's doctor. I'm going to call him when my son goes back to school so that I can schedule an interview with him. Ooh, look at me!

Laurie you said something that I've been thinking about. I believe that there is a reason for why things happen. I've started collecting info (most if not all came from you folks) and starting a journal of my experiences. Maybe I'll be able to make a difference for future Moms with what I learn.

Thank you all so much...will keep you posted!
Christine

[wrblack]

Late again, still catching up. For EI in NJ:
Programs for Infants and Toddlers with Disabilities: Ages Birth through 2
Terry Harrison, Part C Coordinator
Division of Family Health Services
Early Intervention System
50 E. State Street
P. O. Box 364
Trenton, NJ 08625-0364
[phone]
E-mail: [e-mail]
Web: www.state.nj.us/health/fhs/eiphome.htm

Contact them and they will give you intake info, will eventually assign a caseworker from your county's health office.

Lots of other agencies for NJ listed at www.nichcy.org/stateshe/nj.htm

[Cbean]

Thanks again Bob, just caught you! ;D

[meghans_mom]

Christine - I think it's a wonderful idea...to keep a journal or record - because i've forgotten all the tidbits of info i haven't held on to.
one of these days...when school is finished and my mom is feeling better, etc etc. i intend to put together a "new parent" packet for people who call my daughter's school.
Even though the social workers there are great, they just don't have enough TIME for each parent...and each parent has their own needs....so I think it's terrific, that maybe you'll be able to help someone who'll be where you are now someday.
hugs, laurie

[Chris]

Christine,

Parents are your best resource! You can save yourself a lot of legwork by getting hooked up with a local Ds support group right now. This is experience talking! I wish I hadn't been so reluctant about contacting other parents of children with Ds (or any other disability). I have learned more from parents in my area than from the internet, books or doctors. Parents have already fought the insurance companies, they know the best therapists, doctors, schools and hospitals.

Unomas is a wonderful resource but every state, county and school district is different. Didn't want to offend anyone here!

Chris

[Cbean]

I had to give you guys an update! Also, Bob - many thanks. Your response just happened to be the place I decided to start. Because it was there...in black and white...the easiest. I decided to start simply with an email. I even cut & pasted the email address. See everyone! See how strong I am??? LMBBO!!! ;)Anyhow, I got one back! The same day! It included the name of the coordinator who will be contacting me in the near future and she's a parent of a child with DS! Plus, it was signed "Congratulations and best wishes!" I think I'm going to cry again! Finally someone other than an Uno Maser congratulated me!!! OMG! Oh for crying out loud - did you guys buy any stock in Kleenex yet??? I am so happy I found all of you. I feel as if you have saved me from weeks, maybe months of misery. I thanked God for all of you today. I really did. You are all such a blessing. Each day I will use another of your ideas and make another contact. Thank you soooo much.

Bear hugs to all!
Christine ;D