Monday, March 8, 2010

Are you happy with your child's program/school?

Max's school had a benefit gala on Friday, Casino Night. I had an amazing time, and not just because it was in a beautiful place and Dave and I dressed up and there was an open bar (hello, whiskey sours) and I got two blackjacks and also won a mini DVD. I just felt really happy knowing Max was in a school that's able to get this sort of thing together.

Max was in our state's Early Intervention program until he was three, and it spoiled us because we had three experienced therapists (physical, occupational, speech) coming to the house, along with a teacher in his last year in EI. When he aged out our district wasn't able to support Max's needs, so they bused him to a private school about 20 minutes away. I had picked that school after touring several, and decided it was the right place for Max because it seemed like a nurturing environment, the teachers were good and there were kids there just like Max. It was important to me that Max be in a setting with kids who were more advanced than he was (to give him aspirations) and kids who were less advanced (you know, to give him a superiority complex).

But here's what happened with that school: It was nurturing, yes. But turns out it was so not progressive or proactive. It was located down the block from a place where Max used to get aquatic therapy, and when I asked about the possibility of including aquatic therapy in his school program I was told the principal did not believe in aquatic therapy. Then came the communication device showdown. Max was 4. I told his speech therapist (who was the head of the department) that I thought he was ready for one. She said he wasn't. I asked her how she knew he wasn't if she'd never even tried one with him. Then I found out that the United Cerebral Palsy in our area had a lending library of them. "Wow, that's great!" she said when I told her, which is exactly what you don't want to hear from the so-called expert. Finally, I threatened to pull him out of the school if they didn't get him tested for a communication device, but really, by then it was too late. I was fed up with their retro ways; it seemed like they were actually holding Max back.

The new school that we found for Max is farther away, but it is outstanding. The teachers are totally on top of everything and caring, the therapists are enthusiastic and full of great tips, and they have excellent activities for families throughout the year.

I'd say if there's one key thing I've learned from seven years of working with special needs programs, it's this: Ask for more. Me, I wanted to give Max more than just a chance to beat the odds—I wanted to give him a million chances. I wanted to get him all the help and tools and guidance I could humanly get. I wanted those naysaying doctors at the hospital where he was born to eat Max's dust. So when Max was in EI, I asked for more sessions and eventually, I got them. I asked the insurance company to pay for more therapies and I kept badgering them until they met me halfway. At school, I've asked for more feedback: I asked his therapists to e-mail me each week about what they've been working on with Max and what I could be doing at home. And I asked his teacher to send home a list of activities she does in class so I can reinforce them at home, and now she sends a weekly "Learning Links" memo to all parents. OK, I can't say I do everything, but I do what I can.

How about you—are you happy with your child's Early Intervention program or school experience? What frustrates you? What important thing have you learned along the way?


  1. Hate hate HATE where they're at now--a private school I completely cannot afford that is a long walk/short ride from the house. The teachers are not all bad, the classes are small, it's the religion that cranks me up and the pushy administrators and their churchy "join or go to hell" ways.

    I wasn't ready to deal with the issue of "the bus" so I chickened out and took the local alternative (and that bus will be an issue--I will probably have to volunteer as a bus monitor more than I want to) but I've had enough of the indoctrination/propaganda. I'll take my chances with the public schools next year. Not looking forward to it much, though.

  2. I love being in inculsuion enough said

    srach that

    I hate special education classes in jr and high school (cept for 8th grade)

  3. This is totally irrelevant but I just had to come and tell you - you and Max were in my dream last night! I had a pack of sweeties in a purple bag and spotted Max, so I ran over to show him and you got really annoyed with me because he wanted the sweeties. Funny how random people from the internet turn up in our dreams sometimes, huh? ;o)

  4. Not at the school stage yet myself, but taking notes on what I need to watch out for as it won't be long coming around. We are still doing EI, but privately (waiting lists are a joke here) so I have good involvement in his therapy and good feedback:) Interesting to see everyones situation though and the different options available. Jen.

  5. I dislike EI. I'm not a government hater but I thoroughly dislike being assigned a therapist. I have insurance and in every other aspect of our medically challenged life, I get to choose the doctor. EI send whoever is available next and after waiting 2-3 months to get anything at all, I never relished the thought of waiting for longer. We had two therapists who saw the potential and pushed hard for her and she responded well to them. We had two therapists who could only see the diagnosis of form of epilepsy catastrophic to development and just never were flexible enough. We age out in one week - thank goodness. Our school district has an early childhood programme and so far I am impressed with it.

  6. We recently made them switch our EI teacher (the first was afraid of Alex's tubes...and he just didn't work well with her). We had to fight to get speech therapy because "kids under 3 don't need therapy" and "we aren't required to write it on the IEP for EI kids" - both of which meant he got no speech therapy. Maybe it's usual for EI not to do much speech therapy for kids who aren't yet 2, but Alex has a trach, and that makes him a special case, and means he *needs* speech therapy *NOW*

  7. So far, I have been happy with Luke's public school education. Has it been perfect? Heck no. But my girls aren't getting a perfect education either. I'm glad Luke is with typical kids; though I am intreged (sp?) by the school Max goes to.

    What I have learned is, ask lots of questions (why this, why not that). This allows the teachers/therapits to explain why. Often in group meetings this gets people thinking and better ideas are thought of. Be willing to share, honestly, what is going on at home. This doesn't mean everything. But the folks at school know where I have problems with Luke at home, just as I know where he has problems at school. (They know where they are able to do better than me!)

    One of the most important things is to not let them underestimate your child when it comes to goals. One example was in the IEP meeting when Luke was going to kindergarten. The pre-school teachers had a goal that he would learn 50 new nouns, where to-date he had learned 15. The new group thought it was way too much and wanted it lower (like 20!) Turns out he learned 40.

    And of course, stay involved to the best of your ability.

  8. Hmmm, both my girls are in private school - T is in Pre-k (3 year old K) and S is in Sr. K (which is "regular K", I guess - she will be in first grade next year). Anyway, we love thier school - it is everything we could want - nurturing, challenging, LOVE IT!!!! But (you knew there was a but), after a few rocky years of dealing with some marked behavior issues with S, she is now on a med to help manage ADHD symptons. We have seen much improvement and are very comfortable with her med and how it is going. Anyway, on to the "but" - sometimes it seems like whenever anything goes wrong throughout the day, they are questioning her med and wanting to send her back to the doctor. You know what? Sometimes, kids just act like brats! Sometimes, they just have bad days! Meds do not make a child perfect! Ahhh - so there is my rant. You asked for it, right?

  9. Oh, school. School. I could go on forever about schools. We're on our 3rd one now...and we'll try a 4th if we have to.

    Yup. It's so important to know if your child is getting all he needs to get to untap that potential. Schools, please just check to see if it's there, please? Don't assume it's not, just b/c it's not hanging out at the surface.

    I think schools need to learn to listen to parents...we know. They look at us like, "Oh, poor thing, they still have hope.." Of course we do!! Hope is what it's all about! Without hope, would we even try? It's hope that helps you see what is under there, what others don't see.



  10. Junior is on home instruction and getting any services has been a battle from day one. They do not want to give him a chance and the bottom line is money. They get more if he is in the classroom. We have fought to get each and every communication device, therapy, etc over the years. There is a wonderful eye gaze communication system that would allow him to operate a computer with only his eyes but of course the district refuses to even consider that option. His teacher is fabulous and is right alongside fighting for him even though she risks her job to do so.

  11. School is one area that I am always satisfied! My Peanut is in a "severely disabled special day class" at a regular public school. There are two of these classrooms next to each other.

    But - she is integrated so much through-out the day! She goes in to the kindergarten classes (yes, she's a first grader) and does mat time. They do their songs and calendar and stories there. She sits cross-cross on the mat and loves it. Then they do art projects - she is FINALLY making colors on paper! She learns so much by wanting to be like the other kids.

    They also have reading buddies that come into her class twice a week. The grade levels all get turns, and they come read to our kids. She loves that! At recess, there are always kids coming in and grabbing her wheelchair to take her out to the blacktop. They love walking her around and talking to her.

    I absolutely LOVE Peanut's school. And I know that we are lucky and blessed to have such a good one!

  12. You are an AMAZING advocate for Max!

  13. Our EI therapists are very knowledgeable and helpful. I feel for them as I shoot questions at them the WHOLE hour that they are here.
    My biggest complaint is that 1 hour with an OT, PT, or EI teacher is just not enough for us. We have sought additional support through craniosacral, Conductive Ed, Anat Baniel Method, HBOT, aquatic, chiropractic.... the list goes on.
    Our EI team feels like we think they are failing us, but I have to explain.. we just want so MUCH more than they have time for.
    That is frustrating for all.

  14. I am SO happy with T-man's school -we are fortunate to live in the state of New Jersey that provides incredible services and schools for disabled children. I frankly don't know where we'd be without the school. Incredible teachers and aides, busdrivers and security guards alike. and he can go there until he is 21 if need be. I can't say enough.
    I wasn't thrilled with the EI that he received, but we made all the right connections through it, so I was grateful for that. Two of the therapists were awesome - one of them now works at his school.

  15. Max's former EI program sounds like a dream come true. Ours was a complete joke. He had OT once a week, but the therapist didn't do anything but sit on the couch and say, "Oh, he's a bit behind on his motor skills." Really?! I mean, the fact that he had a stroke and desperately needed therapies to help him catch up didn't tip me off at all. Worst of all, they completely denied him PT! Our then insurance company wouldn't cover it, as they said EI should have. EI said he didn't need it, despite our doctor insisting that he did and Miss Obvious commenting on his delayed motor skills every week. The final straw was when after his annual EI evaluation at 18 months, they said he was doing fine and they would only send the OT out to the house twice a month. At the same time, they were saying that his motor skills were delayed! Our only solution was to have him "graduate" from EI so that our insurance company would pay for PT. He didn't have his first PT appointment until he was nearly 19 months old, which is hardly early intervention.
    Anyway, I'm happy with Monkey's current services. He gets private therapy, at a wonderful facility, and they're doing a great job with him. As for education, I'm pretty happy. Mainstreaming can have its bumps, but I really think it's best in Monkey's case. I do worry when I hear about horror stories from other parents. If anything too serious does come up in the future, I am fully prepared to take Monkey out and homeschool him.

  16. Am I happy with my child's school/ special education program?

    Ummm... errr... hmmmm.... Just go here

    This will give my reply cause I don't want to use nasty four letter words on YOUR blog!

  17. I've heard it a billion times and I'm sure I'll hear it much more, but the phrase "You're your child's best advocate" is SO true.

    We loved the EI program. Like you, we were totally spoiled. Anything we asked for or suggested, they did for Avery. When she "graduated" to the school system it was pretty shocking.

    Luckily, one parent of a former stroke survivor warned me that she may not qualify for an IEP. Sure enough, she didn't (because she scored above average in speech and they really couldn't justify Special Ed for her since she scored normal there). They weren't going to offer us anything (hello, she had a STROKE, she needs therapy!!!), and that's when I threw in the "What about a 504 Plan" conversation. Not many parents know that's an option because it's pretty rare, but it's been working so great for us.

    Yes, Avery doesn't qualify for special ed or speech (but she may someday; who knows with strokes), but she DOES qualify for PT and OT--and that's just what she's getting.

    Of course, I personally don't think the school therapy is as good as private therapy, but that's where all the healthcare drama and insane costs of private therapy come into play (don't even get me started). So, all things considered, I'm as happy with her program as can be all things considered.

  18. Felicia: are you worried about kids teasing on the bus?
    AZ/Jo: It's awesome you do an inclusion program. I have not gone that route for Max because I think a school for kids with special needs is best for him now.
    Anji: That is the BEST thing I heard all day!!!! What does it mean that I wouldn't let Max eat the purple candy? Am I turning into a mean mom?!
    Trixie: I did a post recently on 5 Minutes for Special Needs on that same topic—how sometimes Max's school seems to relate an issue (e.g., when he's overtired) to a medical issue like seizure activity when, in reality, Max is just getting sick.

    It is sad to hear how many of you have had to fight to get services for your kids/get good therapists. But it's clear that we're all good at pushing to get our kids what they need.

  19. After 19+ years involved with special education and 2 years with the county office of education... I have seen it from both sides..... not pretty but here are a couple tips...
    1- be reasonable, calm and secure in your goals for your child
    2- if you are having trouble getting services, find an educational advocate (lawyer), it can be a friend, even one who has no other involvement in special education. ALL school districts cringe when a lawyer steps into the picture.
    I fought for years..... when a friend of mine who happened to be a lawyer came to John's IEP.... and literally just introduced herself as 'John's legal representative' they rolled on everything. When I worked with the county as an assistive technology technician, any parent who had legal representation got priority period!
    It's a sad state of affairs for sure.

  20. Just posted today about how much I LOVE Graham's school, he's been there since he was 18 months old, they're like family...

    I had a terrible time with Early Intervention... I had the department of public health on speed dial because the EI director was so completely incompetent...

  21. I've been really happy with Early Intervention. Everyone has been really nice and helpful and they seem to know their stuff. I will say, however, that I am one of those people who thinks that it's all about me--as in, therapists are nice, but I need to be doing PT with him every day and OT is nice . . . you get the picture. I think that I don't entirely trust anyone to do for Charlie like I do.

  22. I wish more parents would advocate for their child's needs! You're right- keep pushing for what you believe your child needs to meet their potential! Too often, as the special education teachers, we're trapped legally unless a parent asks for more. It's a slipper slope to try new interventions without the push of a parent, so in many ways the real change happens when the parents say "what if..."
    Keep it up!

  23. Angela, Eric's momJune 23, 2012 at 2:12 PM

    Eric's school rocks he is in a normal class or should i say classes being in middle school.He has an aid to asssit with tolieting(still an issue) and more pyschically demanding stuff.He takes PT when his team(group of kids w/ same teachers) are in gym and joins the intergrated special ed class for gym(most of the kids in the class have high funtioning autism or chromosmal disorders) when his team is in study hall.He loves middle school and has alot of friends.


Thanks for sharing!

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