MARCH OF DIMES | MARCH FOR BABIES | NACERSANO

Delays and disabilities – how to get help for your child.

Hi everyone, I just wanted to let you know about a great March of Dimes blog series by a friend and colleague here at the national office. Barbara C is also one of our moderator's here on ShareYourStory and she has been our featured speaker at ShareUnion. Her blog series is called Delays and Disabilties - how to get help for your child. As a dad to a child with special needs, I often turn to Barb in moments of crisis and self-doubt and confusion. She has talked me down from more than one ledge. She is one of the brightest, kindest, most generous souls I have ever met. I will share her blog with you each week. I hope it inspires you, comforts you, gives you the tools you need to meet the challenges of being a parent of a special needs child. It does me.
James SooHoo

48 Replies

  • lvazquez

    In reply to Barbara C.:

    We hear you Barbara, come in over:)

  • Barbara C.

    In reply to Barbara C.:

    test

  • Barbara C.
    Hi all,

    Wednesday rolls around so fast! Here is my latest blog post on An easy way to find resources for special needs kids. This is something you will want to bookmark on your computer.

    As usual, if you have questions, send them to AskUs@marchofdimes.com. Happy reading.

    Best,

    Barbara

    March of Dimes
  • Barbara C.
    Hi all,

    Here is today's post. It is on Words and terms - a whole new world.. For those of you who are new to the world of early intervention or special education, it will help you to make sense of the many unfamiliar terms that you will hear and that you need to know.

    Feel free to email me if you have questions: AskUs@marchofdimes.com.

    All the best,

    Barbara

    March of Dimes
  • Barbara C.
    Hi Lindsay,

    Thanks for your input about having the Preschool teacher attend the transition meeting to Kindergarten. If it can be arranged, it would be very helpful. If not, perhaps she can write up a kind of Present Level of Function summary and recommendations which can be used at the meeting.

    You are right that many children have difficulty transitioning to new programs or places. This is why you need to have a thorough discussion about your child at the IEP meeting. It is important to discuss your child's present level of function and goals, and work toward finding a solution that meets his individual needs. More or different is not always better.

    My daughter was in a public school setting and then a private one and then back to public again for high school. We changed her program as she changed. Looking back, it was difficult and challenging (especially for me to navigate), but it was what she needed AT THE TIME. Now, it has all paid off. So, have patience and take one hurdle at a time. It is a marathon, not a sprint.

    Hopefully these posts will help parents to understand the rules involved in early intervention and special education, so that you are better equipped to handle IEP meetings and advocate for your child. Prior written notice is one of those safeguards that is there to help you. It is a win-win for all when things go smoothly.

    Hang in there!

    Barbara

    March of Dimes
  • lvazquez
    Barbara, I will definitely be checking these posts out and will be catching up. For some, the school year is ending this week or next and others still have a few more weeks to go. If you have a few weeks left and your kiddo is on an IEP and you haven't been contacted by "the team," definitely do if you have concerns OR schedule now for that first week that teachers roll back in.

    My advice for those with kiddos entering Kinder who haven't yet had the Kinder Transition Meeting: Make sure that the pre-school teacher is there at that meeting. If s/he says that they cannot attend that day, then RESCHEDULE the meeting date. It is crucial the pre-school teacher attend. S/he needs to let "the team" know just how much extra help your kiddo required from the classroom teacher and/or aide. The team has to select a date that is fair and reasonable for all parties. Your kiddo might qualify for a 1:1 depending on support needs and let's face it, if there are two aides in the classroom in preschool setting, the regular classroom teacher is going to need some extra hands.

    ESY - ask how long it is. It will differ week-wise between districts, even locally. True, it can be effective, but if your child has trouble with transitions, ask yourself if placement in a new school for a limited amount of time with new teachers is going to be a good fit? Depending on skill area, a social group or Kumon reading could be a better answer (I know ESY is free though).

    OMG Barbara, on Prior Written Notice . . . Resource was NOT listed. It was such a surprise to us that second week of school in August. Too many no-no's to point out this year in our particular situation. It's been such a long school year . . . I don't know . . . We're going to take the upcoming year and work on some hab goals with an in-home program, improve speech (3xweek), and undo some learned behaviors. Still looking for that ideal or even better setting for our son . . . hoping we find it down the road.

    Thanks for all of your help,

    Lindsay
  • Barbara C.
    Hi everyone,

    Wednesday is Delays and Disabilities day on our News Moms Need blog. Today's post is on
    Summer programs for kids with special needs. If you need ideas for what to do with your child, or if you are wondering if he/she qualifies for extended school year services (ESY), then this is the post for you. Chock full of info. Be sure to go to the links that I put in there to walk you thorough what you need to know. Every state is different.

    Send your questions to AskUs@marchofdimes.com, or just email to say hi and let me know how you are doing with the process.

    Hope all is well!

    Barbara

    March of Dimes
  • Barbara C.
    Hi everyone,

    My blog post for today is on Prior Written Notice. It can be a bit confusing. If your child is about to be evaluated for special education services, or if he/she is already in special ed, you need to know about Prior Written Notice. It is the written explanation from your school of why services will be initiated, changed or refused. Please check out the post and share your experiences. And, let me know if you have any questions.

    Best,

    Barbara

    March of Dimes
  • Barbara C.
    Hi Everyone,

    As this is still “IEP season” I have another post on IEPs and the all important least restrictive environment rule (LRE): IEPs and LREs - the nitty gritty I hope that this post helps those of you who are struggling with how to write effective IEP goals, and arms you with information so that you can better advocate for your child’s placement.

    We’d love to hear what works for you and your child. Send your questions to AskUs@marchofdimes.com.

    Happy Wednesday!

    Barbara

    March of Dimes
  • Barbara C.
    Hi everyone,

    Today is Wednesday, so I have a new Delays and Disabilities blog post on News Moms Need. It is on Recreation Services (aka Therapeutic Recreation, Rec Therapy, Rec Services, RT and probably other names). Rec Therapy falls under the umbrella of Related Services, so if your child receives interventions services, he might also qualify and benefit from
    Recreation Services. It is a service that focuses on the non-academic aspects to your child's life - recreation and leisure activities.

    Happy reading!

    Barbara

    March of Dimes
  • Barbara C.
    Hi Lindsay,

    Congrats on your son's progress with PT. That's great!

    You ask a very good question. As you know, parents are members of the IEP team, so it would be very important that you be included at any meeting that proposes to make changes to your child's IEP. I am a bit confused as to why after 7 meetings, your school wants to meet yet again. It could be that your IEP goals are not being written correctly, or are not being based on your child's present level of functional and academic performance. So, I urge you to review your IEP to be sure it is written correctly. In the meantime since you don't want any changes, here are two options:

    One suggestion is for you to simply say that you don't think an IEP meeting is necessary at this time, and you wish to keep your child's IEP goals as they are for the moment. The school may then say OK and postpone meeting.

    If the school really wants to meet again (and 7 times sounds like a lot for one year!), then I want to refer you to my favorite website, Wrightslaw, for questions that deal with the law and this kind of issue. On their site they say "IEP meetings allow parents and school staff to make joint informed decisions about your child’s IEP. The IEP team should work toward consensus. If the team cannot reach consensus, the school must provide the parents with prior written notice about what the school proposes or refuses to do.” In other words, go to the meeting, give your input, and if you do not wish to accept the changes then say so. If the school is insistent on making changes, then they need to provide you with "prior written notice" (which must explain the district's rationale, describe other options that were considered, and say how they are basing their decision for their actions.) Usually a school system will not battle with you over small items such as changing a goal or two. It is in everyone's best interest to reach consensus at an IEP meeting.

    I suggest you read what Wrightslaw says on this topic. Also read their info on
    present levels.

    Let me know how you make out. Good luck.

    Barbara

    March of Dimes
  • lvazquez
    Barbara, hi! PT has helped us with our son's coordination and balance. He has learned to swing a baseball bat like no one's business and he's more accurate than older sibling, so he's loving that. Definitely helps build self-esteem and making him stronger physically.

    Question for you: If "the team" requests and IEP mtg and you don't care to meet, they can't put things in the IEP without a parent's consent, correct? We like the IEP we currently have and don't want to meet for a 7th time this school year.

    Lindsay
  • Barbara C.
    Hello everyone,

    My blog post today is on Physical Therapy. I discuss what it is and how can it help your child. It helped my daughter learn how to do things that her peers were doing that she struggled with (such as riding a tricycle). Her self esteem exploded after that!

    Has PT helped your child?

    All the best,

    Barbara

    March of Dimes
  • Barbara C.
    Hi Lindsay,

    It is amazing how an organized system can make you feel empowered! Good tip to separate the school from the medical files. Everyone will find what works best for them.

    Thanks for your feedback - so glad the posts are helpful. Feel free to send in questions or let me know about topics that you are interested in.

    Best,

    Barbara

    March of Dimes
  • lvazquez
    Barbara-

    Thank you! Your posts are super helpful:) I'm reorganizing my binders this weekend for sure. I'm keeping school separate from DDD. It got too large.

    Lindsay
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