Special Needs

IEP & school Issues/Advice (Auntie?)

So some of you know we have spent the last 3 school years fighting for DD1 a spot in the special needs public school program.  Even with all of her diagnosis she was cognitively normal..and a bit advanced, It wasn't until this year that they finally offered us OHI utilizing her connective tissue disorder as the reason.  But the class that they want to put her in, isn't a good fit in my opinion, and it's the ONLY option.  30 minutes from home, when the local elementary school she will attend is 5mins away and has a head start class.  In VA head start is ONLY for low income, regardless of anything else.  I tried to see if they would do early entry K testing but our county does not (and thought I was crazy).  I'm struggling because I need to balance what is good for her academically as well as medically.  Since she is having her spinal surgery in July, I don't think she will even be able to do full day m-f school in the fall and we will have lots of PT.  To make matters worse neuromuscular is saying regardless of her tumor/spine she still has a metabolic/muscle disorder we need to figure out.  

I'm scared if I tell this lady hey thanks but no thanks they may be really mad, and I don't know how we would get her IEP before K.  But, her IEP needs could change dramatically after this surgery.  I'm leaning more towards keeping her in the private preschool program which is m/w/f 9-12 for another year.  I know they will touch on reading whereas headstart and the integrated class will not.  And, the people at the school really CARE about her.  I don't worry when I leave her there, I don't NEED an IEP for them to help her or do little things to make her life easier.  

So, WWYD?
DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


Re: IEP & school Issues/Advice (Auntie?)

  • Piggy backing off of Auntie's questions, is your concern that it will be a head start program at a different school?  If everything else about the program seems good, I'd let that go.

    I'm pretty sure my son is in the same situation right now.  His program is supposed to be 50/50 SN/NT, but I know that every kid in my (affluent) neighborhood in the program has an IEP.  I just assume that the other 50% of the class is low income from the neighborhood that the school is in to balance out the kids that I know have IEPs. Makes sense...the kids that qualify for head start also need some extra support before heading off to K.  I wouldn't be okay with the setup for K and beyond, but it's just preschool.  He's getting what HE needs, so I consider it success.

    I had very similar concerns about my son being too advanced for the class as well.  I was told that they don't work on reading or handwriting at all, and I was NOT pleased about that.  Academically, my son didn't learn anything last year in class.  But you know what?  The things he did learn were so much more valuable for him.  He made leaps and bounds socially, and had access to lots of things he wouldn't have if we had kept him in a private preschool (speech therapist twice a week, physical therapist twice a week, a 4 to 1 teacher ratio).  I have been able to keep him challenged academically at home.  Despite the fact that he has a fine motor delay and school didn't work to teach him to write, he can write the whole alphabet and many words.  The school reinforces the skills he's developed by encouraging him to read books to them and the class, and spelling out words for him to write.  As long as the staff is willing to differentiate, your DD might get much more out of the program than they will promise.

    I think you need to figure out exactly what isn't a good match with the program, and see if there's a work around.
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  • Salemkitty13Salemkitty13 member
    edited June 2014
    I would take the spot I was offered even though its further away. I would ask about transportation if that is a problem for you. I would ask about a reduced week or school day transitioning to full time if you think 5 full days is too much. I would also ask for home bound services while she is recovering from her surgery. IMO if she goes to the school system program this year you will start with a better IEP for next year, even if her needs are changing. Rationale is that 1. The school staff would have a much better understanding of her strengths and weaknesses to write a better iep and 2. It is expected that the students would be a lot different when entering kindergarten than they were when starting preK, the staff is used to this. Good luck to you and your DD whatever you decide. 
    Also, as another educator, I second what @justinlove said.
  • -auntie- said:
    So some of you know we have spent the last 3 school years fighting for DD1 a spot in the special needs public school program.  Even with all of her diagnosis she was cognitively normal..and a bit advanced, It wasn't until this year that they finally offered us OHI utilizing her connective tissue disorder as the reason. 

    Sounds a bit like "be careful what you wish for..."

    The main goal was to get the IEP so that head start would potentially make an exception for her, since they take children over income with IEPs.  And honestly, Im baffled how EDS trumps CP/Spina bifida. 

     But the class that they want to put her in, isn't a good fit in my opinion, and it's the ONLY option.  30 minutes from home, when the local elementary school she will attend is 5mins away and has a head start class.  In VA head start is ONLY for low income, regardless of anything else.

    Why isn't it a good fit? It it purely location and the fact that it isn't your neighborhood's school? Are they offering transportation as part of the IEP? Sometimes special programs aren't available in all buildings. DS's elementary has no preschool programs on site.

    Im not sure IF transportation is going to be offered, but more to the point i'm not sure i'm comfortable WITH transportation.  And unfortunately it's the complete opposite direction from her current school (where M is likely going for the 3yo class) No way I could do both, even if she did ride the bus, the times just cross.  The elementary school 5mins away has a head start class, and the class at the other school is half head start have children who qualify for SN preschool. 

      I tried to see if they would do early entry K testing but our county does not (and thought I was crazy). 

    So send her a year early, even though she's going to be 6 weeks post surgery and hasn't had a robust preschool experience under her belt? That doesn't seem like a good plan even if she is a brighter and enriched child. Is this just about distance?

    The surgery thing is new, hence why my head is spinning, lol.

     I'm struggling because I need to balance what is good for her academically as well as medically.

    Don't sweat the academics in preschool, focus on the social and emotional readiness skills- that's what she needs to be successful when she steps up to "real" school.

      Since she is having her spinal surgery in July, I don't think she will even be able to do full day m-f school in the fall and we will have lots of PT. 

    I don't understand. Is the preschool full day, M-F but kindie isn't? Because you asked about kindie testing. It's preschool, you may be able to do partial days if that's what's appropriate. I've known kids who didn't attend every day in preschool or who started with a modified day and transitioned to a longer one as the got more used to the experience or got healthier.

    No kindie is full day as well, but each program ends at a different time, I think the SN preschool ends at 1:30 and headstart ends at 2:30 and regular Kindy ends at 3:30 (that could be off, who knows).   I asked about  modified day and its something we can discuss but not something they wanted to do.

     To make matters worse neuromuscular is saying regardless of her tumor/spine she still has a metabolic/muscle disorder we need to figure out.  

    But it's unlikely you'll have a dx and plan by the first day of school. So you have the unenviable task of setting up a program without knowing all the facts. That's tough.

    Likely we won't, however we are going to do a muscle biopsy during her surgery so we could be closer than I think. 

    I'm scared if I tell this lady hey thanks but no thanks they may be really mad, and I don't know how we would get her IEP before K.  

    I think you could work the medical issues to your advantage. You asked for something, the situation has changed and now you need to modify that in the context of her scheduled surgery.

    If you made the choice to do private preschool, you could contact the school about evaluating her just after Christmas to set up a kindie IEP if needed. 

    What was she going to be getting in terms of IEP services? If it's mostly accommodations, I'm not sure it's worth it. If it's actual PT or OT, can you visit the school for service delivery?

    Is anyone on your private team willing to suggest an IEP with a reduced schedule of half days or a 4 day week because of her recent surgery? 

    Honestly, the IEP hasn't been discussed but the only things recommended are things like soft cushions seats for her back, no longer than X amount of time on the floor or bean bag on the floor, little things like that.  Extra set of 'books' etc.  

    But, her IEP needs could change dramatically after this surgery. 

    Maybe you can revisit it after she's had some time to recover. Do you expect her to be in better shape 6 weeks out or worse?

    Ugh, who knows, we could have to start cathing again after surgery I have no clue. 

     I'm leaning more towards keeping her in the private preschool program which is m/w/f 9-12 for another year.  I know they will touch on reading whereas headstart and the integrated class will not.  

    I wouldn't get excited about reading/not reading. She's bright but she needs to learn to be part of a class, take turns, get along with all kinds of kids, share, take direction from someone who isn't mom. 

    If you're doing half days and will transition to a full day kindie, it's going to be a huge step up from a breezy 3 hours 3 x a week. Especially if she's prone to fatigue. Do you have a 4 day program or can you add lunch to the 3 day?

    No, 4 day programs.  We are limited on the private schools that will accept her (as you know from the past 36 school denial experience lol) 

    And, the people at the school really CARE about her.  I don't worry when I leave her there, I don't NEED an IEP for them to help her or do little things to make her life easier.  

    That's great. Are they accommodations only?

    Yes, they are just little accommodations but that's it, besides what I mentioned probably things like unlimited bathroom breaks, and stuff like that.  They aren't going to provide PT or OT because it's not "educationally" based it's a medical need.  
    So, WWYD?

    One reply down lol moving on!
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • Speaking as a Kindergarten teacher, I don't care how academically challenged kids were in preschool. Instead, I hope they were provided with an environment where they gained social skills, fine motor skills (cutting, tearing, coloring, painting, lacing, hole punching, playdough, etc), are accustomed to sitting for a story, learn to take turns, etc. Lots of exploration and inquiry based activities are ideal. Reading and writing will come. As a society, we are making a HUGE mistake by pushing academics so early. I won't get on my soap box...today ;)

    Her preschool environment at the private school couldn't be more perfect.  It has been amazing for her socially, emotionally & academically.  When she was 2.5 she tested at a 5 year old level, (2 separate occasions) so balancing her emotional with her academic is a concern for me.  They do lots of turn taking, and someone different gets to be the leader, they have story time, snack time, play time, craft, etc.  When I say I want her challenged I just mean I want her mind engaged and I want her learning.  
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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