DD getting help

[carrie6466]

We had 4 yo DD's CPSE meeting today and it went well. It went better than I had thought it would, based on stories I've heard from other parents. For now she is qualifying for OT 2x a week and speech 2x per week individual and 1x a week in a group (her plus 2 others) setting. The OT will be once a week in a sensory gym and the other will be to work on her fine motor skills, etc.

I am now just waiting for the services person for the therapist to call me back and get everything set up.

She'll be re-evaluated in June to see where she will be for the summer and Kindergarten in Sept.

As they need to have a classification of some kind to get her services, they are temporarily giving her one of "Pre-school, special needs disability." That will be amended at the end of the month, as she has several tests and an EEG pending with the neurologist. I was also told that we can have another meeting once we get all her test results back, if there is anything else that she needs that she won't be getting right now.

I didn't have to ask for anything. Which kind of makes me wonder...did the people I spoke to that had such a hard time with the district not really need the help they were trying to get? Or is my dd so significantly "behind" the eight ball that it just became a non-issue? I know she's always been 'different', especially with the sensory issues she's been exhibiting, but the fact that they turned nothing down has me wondering now.

If you made it this far...now I have a million questions for anyone who has experience with sensory issues. On her sensory profile, out of 22 areas, she scored 'typical performance on 5. All the rest were definite difference, except for 1 probable difference and 3 incompletes.

Thank you all for giving me a place to talk about it, it helps a lot

 

[Forevryoung]

Edited to sound better than my original (which wasn't worded so great, thanks belleandbeast):

I'm a brand spanking new service provider (still finishing masters) so I've now seen both sides.

This is my opinion: the majority of service providers would love to give kids services for them to succeed. Parents (in general) care so much about their kids and want what is best for their children (both good things). Sometimes there is a disconnect between service providers and parents between what is possible and what is not possible at the current moment in time (due to child's abilities, school policy, supervisors), this potentially leads to a "fight".

Sometimes it is difficult to get services (especially in some areas), I won't disagree.

Additionally, your daughter is young, they can provide the services now with the thought that she potentially won't be needing services in the future- better for her!

 

[belle&beast]

Congratulations! I have been following your story and I am a preschool SLP and work really closely with the OT and we do lots of sensory work together, so maybe I can help.

As far as getting what your child needs, it is my experience in my corporation that the needs of children are met and that is our first priority as therapists. (I speak as a therapist and a mom of a child with a speech IEP.) So, maybe you are working with a great team and your DD will be very successful with all of the help she is going to get!

I am glad it worked out so well for you!

 

[belle&beast]

As one professional to another, I think you need to be very careful how you word this type of response.

Keep in mind that parents are always an integral part of the team and you need their opinions and you have to respect those opinions. Parents know their children better than you or I ever will and we always have to listen to them- they are very helpful and insightful. It is my experience that parents will work with me and we can achieve more because they feel respected and that their opinions count.

In preschool and early intervention, I do not consider myself trying to "catch up" with kids. We provide the necessary service to help them be successful in the classroom and with their peers.

 

[Amy5000]

I'm just another mom who's been through the process. I have many thoughts on the process.

1. There are a lot of good providers out there who are interested in getting your child services he or she needs. So I wouldn't take it as a terrible thing that you got services without asking for them specifically.

2. Different school districts in the same state or county can vary significantly in the services they offer and how they treat various disabilities.

3. School districts treat parents differently, based on many different factors:

A. Parents who are better informed as to what services are out there can often get more services. Some parents seek to get their kids in a full day programs while others just accept it when the school district offers up a 1/2 day program. I always do ground work before a meeting by talking to professionals involved with DS and others who work in the area so I know what's out there that might be helpful for DS. (I didn't get a lot of services but I did always get what I asked for.)

B. Many school districts will also treat parents more poorly if they feel that they can get away with it. Parents who are less educated, immigrants, or others who give the impression that they don't really know their rights or what's going on may have a more difficult time of it. I always wear a suit to CPSE meetings. The CPSE chair used to ask if I was seeing a client that day but I was not embarrassed to let her know that I was dressed for this meeting. These meetings are important and I treat them as such.

Anyway...just my 2 cents. I have to say congrats on getting your DD the services she needs. For the record, not every parent has a terrible story about dealing with the school district. So far my experience has not been bad. I'm sure I will have difficulties at some point and when that happens, I'm sure I probably will not focus on the CPSE meetings that went well.

Good luck. Amy

 

[Forevryoung]

As one professional to another, I think you need to be very careful how you word this type of response. It sounds condescending even though I do not think that was your intention.

Not my intention at all! I will go back and revise what I said to word it better. I apologize for coming across the wrong way- sometimes it's difficult across the internet.

 

[KirstenB]

Carrie, I'm glad your dd will be getting these services. From what you posted before it seems like they'll really help. Our dd has been in our Early Intervention program since she was 11 mths old. First for low muscle tone, now for speech and sensory issues.

In August, she'll start special ed preschool. She go all day, 5 days a week. She will have just turned 3, but I think it'll be good. I like the program a lot, I used to substitute teach in it, before our younger dd was born.

I'm sorry I can't help you with the sensory profile. I know I filled in a checklist several months ago, but I gave it to her speech therapist. We totally agreed on Zoe's sensory issues, so it seemed more like a formality than a diagnostic tool, kwim? Anyway, I'm really glad this went well for you!

 

[ecki]

Hi, are you in NY? Usually when I see someone say CPSE they are in NY.

Anyway, we're in NY. My older DD had a TON of sensory issues when she was in preschool. She was VERY sensory seeking, except for sounds where she was very sensory defensive. Our school district was wonderful and we were able to get her enough OT (even though she was attending a private Montessori school at the time). They even gave her Extended School Year which surprised me.

I got her a PDD-NOS diagnosis before her initial CPSE meeting, but they just put her classification down as "preschooler with a disability" and noted her diagnosis somewhere else. I think our district ALWAYS does this, because my younger DD has a definite Down syndrome and autism diagnosis and the STILL put down "preschooler with a disability" as her classification.

I'm glad you were satisified with your CPSE meeting. Sometimes it just comes down to the team or more importantly the CPSE chair. Our CPSE chair is very understanding (he used to be a special ed teacher, so he's not strictly an administrator) and I'm hoping that he'll be there for the next 18 years! (not likely, but we can hope!)

 

[carrie6466]

Hi, are you in NY? Usually when I see someone say CPSE they are in NY.

Anyway, we're in NY. My older DD had a TON of sensory issues when she was in preschool. She was VERY sensory seeking, except for sounds where she was very sensory defensive. Our school district was wonderful and we were able to get her enough OT (even though she was attending a private Montessori school at the time). They even gave her Extended School Year which surprised me.

I got her a PDD-NOS diagnosis before her initial CPSE meeting, but they just put her classification down as "preschooler with a disability" and noted her diagnosis somewhere else. I think our district ALWAYS does this, because my younger DD has a definite Down syndrome and autism diagnosis and the STILL put down "preschooler with a disability" as her classification.

I'm glad you were satisified with your CPSE meeting. Sometimes it just comes down to the team or more importantly the CPSE chair. Our CPSE chair is very understanding (he used to be a special ed teacher, so he's not strictly an administrator) and I'm hoping that he'll be there for the next 18 years! (not likely, but we can hope!)

Yes I am in NY. Most of the people that I have spoken to before that said they had a hard time with the dist., etc are people in my district. Some of them are parents of other preschoolers that are getting speech or OT and were looking to get more services, but were turned down.

They asked us why this was the first time we were looking for anything, because these issues have been ongoing for a long time. I honestly wasn't aware that you could GET services before starting in the public school (kindergarten). Had I known about all of this last year, she would have been in an all-day preK program in the district we are in, rather than the 5-day half-day program in the private PreK (which I pay for). My reason for putting her in 5 days this year was to prepare her for kindergarten. She takes a loooooooong time to get used to changes and she would not have taken it well to go from a 3 day a week program to the 5 day K program. Last year, she was in 2 days a week, 2 hrs a day.

They told me that we will have another meeting in June, to see how she has progressed at that time. Then they will decided whether she is going to continue services over the summer and what they will do with K in Sept.

I called to start setting up her speech and OT appointments and it starts already. No one called me back. I left 2 messages over the course of 4 hours. If I don't hear from them Monday I will try another.

 

[ireland_nicole]

Sometimes I think schools get used to doing things one way, and it can be difficult if someone comes in from a different route. My son was born overseas, and we fought for over a year when we got to TX to get him into PPCD(preschool program for children w/ disabilities) and kept getting told after 10 mins that he had no educational need. The Pediatrician, Neuro, OT,ST,PT,preschool teacher...basically everybody...said he had significant educational needs. This Oct. we started in a new, inclusive charter school. They certainly noticed a lot of issues, incl. tremendous diff. w/ transitions, speech impairment, socialization issues, fine motor issues, etc. the list is long. So sometimes, it's not that the parent is completely deluded, it is that they are not coming through typical feeder programs. For what it's worth, our district has a reputation for having fantastic services, but being incredibly difficult to access. So it seems as if our experience has been consistent. Anyway, congratulations on your progress, it sounds awesome!

 

[ecki]

I called to start setting up her speech and OT appointments and it starts already. No one called me back. I left 2 messages over the course of 4 hours. If I don't hear from them Monday I will try another.

Sometimes it's hard to find providers when you don't start at the beginning of the school year. When my older DD had her initial CPSE meeting, she was supposed to start services in February, but they couldn't find any providers with openings until APRIL. If they don't find anyone by the time she is supposed to start getting services on her IEP, she's entitled to compensatory services -- they have to make up those services that she missed. That's why they gave my DD Extended School Year, because she missed two months of therapy since they had no providers.

We were lucky that my younger DD was in Early Intervention because I had a lot of people to ask when my older DD's teacher hinted that she might be autistic. I would have never known that the school districts provided for preschool either.

I'll look up my older DD's sensory profile. I'm so unorganized, everything is in a "to be filed" box.

Have they considered doing the Wilbarger brushing protocol? It did wonders for both of my kids (one sensory seeking and the other sensory defensive). My younger DD's OT doesn't believe in it and my older doesn't get OT anymore since she ended up being extremely noncompliant with the school's OT so it was just being counterproductive, so we don't do the brushing and joint compressions anymore.

 

[carrie6466]

Have they considered doing the Wilbarger brushing protocol? It did wonders for both of my kids (one sensory seeking and the other sensory defensive). My younger DD's OT doesn't believe in it and my older doesn't get OT anymore since she ended up being extremely noncompliant with the school's OT so it was just being counterproductive, so we don't do the brushing and joint compressions anymore.

The company that did the initial evaluations was at the meeting and the rep. was asked if there were openings now and he said there were. So it is just a matter of getting someone to call me back. I now have two other names, as well, as one of our friends gets speech somewhere different and another friend has a dd in OT at a third place. I will be busy on Monday

3 of the committee members were discussing brushing, among various other things. I don't know yet what they will actually be doing yet. I really don't know how OT will go, because DD has real issues with people in general if we are not there. She usually just hides her face and covers her ears and ignores them. Unless they touch her head. Then it is a nightmare! She started school in Sept and is just, in the past month or so, getting comfortable with her teachers.