Posted By Posting
Nov 19, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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My Baby Is Going To PreSchool
Quinn *sigh* Quinn is growing up. She is becoming such a little girl now. Learning new things, wanting to do more grown up stuff. *sigh*... I never understood why moms got a tiny bit depressed when their kids started to grow up but now i know. Quinn has been approved for the Inland Regional Center until she is 5 years old which means that they can help me with the transition into PreSchool. She will still get her therapies. we are supposed to start working her into a PreSchool starting up in January. She will get 3 1/2 hours a day of PreSchool. This is the really bad thing---> her health

i fear that they will not allow her in a regular preschool because of her medical issues. she has a g-tube, must NOT have sugar (a very strict diet), isn't even potty trained, still has chronic diarrhea, needs oxygen for nap times, and must take a medication before every single meal. Which means she is complex and most "normal" PreSchools will not accept her. She also has seizures.

The school district tells me that she may qualify for a 504 but it's a long shot in the dark because of her medical issues. If nothing else, they will put her in the other PreSchool center for the severely handicapped children. Problem with that is that educationally, Quinn is very capable of being around other children, normal children her age. I just hope this isn't a fight.

her developmental teacher told me to downplay it. Only tell them what will directly affect their job. so when i was filling out the application, they ask about her history. All I told them was that she has asthma, seizures, cerebral palsy and an enzyme deficiency. But that's still a lot. A doctor also has to fill out a check up form and the dentist. UGH!!! Plus, she is not normal and so she will likely miss a lot of school either for illness or doctor's appointments. Most kids cannot be excused for as many appointments that she will be missing. Plus she is hypotonic, but very functional. I just don't know what to do and I'm venting. Any insight is greatly appreciated. -Sarah

Nov 19, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
I don't know Sarah...I agree with downplaying it though. I think if too big a deal is made out of it from the start, they might fight you without even seeing just how much she CAN do. The words are terrifying to a teacher but then sometimes we see the kid in action and think "oh well, this isn't so bad". As far as after she turns 5, I wouldn't even worry about that right now. Who knows what will happen between now and then with her and with the school system.

I thought of y'all last night because I heard on the news that some of the preschools for special needs kids will be closing due to $$ cuts. That's the saddest piece of news I've heard in a long time.

Nov 19, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Oh, for example, without having know about Quinn I would have been terrified by the little boy in one of the mmo classes. He has a micKey and another boy has to have enzymes given to him before he eats. Those things would have scared me to death...but I see them and it's no big deal.
Nov 19, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
I believe it is called "inclusion" all children have the right to be in a "normal" classroom. I believe it is against the law for a child to be discounted due to medical.. I know it is like that for day cares. They can not, not accept a handicapped child just because the child is handicapped and will require more work. You may want to look into an aide that will be with Quinn during the day. Insurance may cover that... or their may be grants you can look into.

I think it would be wonderful for Quinn to be in a "normal" class. I have to say that yes some kids are mean... however... most cases children love to help and learn when it comes to new friends......

Jacky

Nov 19, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Ask this ?? IN the P2P forum for special ed. an dadvocacy.There are a few sp. ed. teachers there who can help.

that said, I'm pretty sure Quinn woudl qualify for a 504 plan based on her medical needs. Taht aside. She shoudl get a reg. IEP because of her OT, ST and PT issues. ALL those goals and minute needed are to be placed IN the IEP for them to work off of.

They CANNOT tell you she is not allowed to go to a PUBLIC preschool. IF early interevention has said she qualifies, tha tmeans they must accept her. AT her age she would be with special needs kids jus tbecause of her age. At that age they are not in regualr "shcool" The only kids allowed to go to school that young are the one who qualify due to their delay in certain areas. My sister's DD started at 2.5 years due to specail needs. She got OT ST and PT as well.

And yes, it's called inclusion once she gets old enough. They must place her in teh Least Restictive Enviroment (LES) it's the law!!!!! That will apply AFTER she gets to K5 though NOT for preschool because preschool is normal for delayed students. They do however have a few "normal" kids in the class. Those children who are the "norms" for the class are the same age and go through a screening process to get accepted for the "job".At least that's how it works here.

504 and IEP (individualized Education Progrmas) came AFTER a hcild enters K5 though. At least in VA they do. Prior to that age we had IFSP. Jedd has one of those to cover his OT fo rfeeding and it did used to contain his ST for Speech unitl he disqualified for it.

A good book for you to look through woudl be "Wright's Law". It has in lay person terms clearly spelled out the law behind IDEA 2000. That way you can go in informed when they are ready to do her 504 or her IEP wichever one they do. I am pretty sure it will be a IEP though. 504 are mostly for medical purposes only but not always.

Ask at P2P, they can add sooo much more than I can.

Taht all said, if you are looking for "private" daycare such as a place like Kindercare or the YMCA's programs, yeah, they do give you issues. They did us. (not that place but I don't want to name them). they wanted sooo much stuff of sJedd's medical papers. Stuff they didn't need at all. they basically wanted me to sign consent for ALL fo his medical files form ALL of his Dr. They also would not nail down any specifics for me when I visited. So I gave up and went to work at night so DH coudl take care of Jedd then and we did n't need daycare.

They coudln't gaurentee that they would feed JEdd like he needed to be fed per the Rehab clinci's request. So for us, it was not worth undoing all my hard work over the past year. So, we stopped looking for a place.

Nov 19, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
i wish i could add more comforting advice but all i can say is take it one day at a time- you know how smart Q is and how much she can do, now it's her turn to show the world. I am not too sure about the whole preschool thing... do you have a local CP group (or any special needs groups) that maybe could help you with all your questions? You can't be the first mom who's been through this sort of thing. I'm sure everything will work out just fine *hugs!*
Nov 21, 2008
ozzie*smom
Becca
I don't post often, but I want to say that (I think you are in CA?) the state is always required to make the necessary arrangements for her even if they have to pay for a private school where she can be with children of comparable age and ability. IF it becomes an issue, look for a parent advocate in your area to come with you. If the school system cannot provide the LRE (LEAST-restrictive environment) then they need to pay for a school that can. HTH!!!!
Check with your
doctor first!