for sticky: advocacy resources

[prairiewindmomma]

In putting together a master list of resources that have helped you advocate for your student, what do you recommend that parents read, know, and do? What resources are available to you?

[prairiewindmomma]

One of the first challenges I dealt with was trying to sort out what was wrong.  At the time, I really wasn't aware of the resources that were available in the community (I'm in the US.).  I knew that one could talk about things with the child's doctor (ours was remarkably uninformed) or that if your kid was in public school, you could ask them to do testing. Well, my kid wasn't in public school precisely because something was off and I didn't trust the schools to remedy it.

Things I have learned along the way:

1. School districts have a federal obligation to identify, locate, and evaluate all resident children who may have a disability and may need services. Different states interpret this differently.  Generally, states have early intervention programs. Sometimes this is split up into 0-3 services and 3-5 services, but screenings are generally asked for and done.  Once your child is school aged, some districts and states will continue to do evaluations at parent request without student enrollment, others require enrollment to do evaluations. 

2. In terms of knowing how issues you see in your child might be learning or physical differences, I found the book The Mislabeled Child by Brock Eide and Fernette Eide to be particularly helpful. Learning about working memory, processing speed, sensory processing, and emotional regulation were all new phrases to me. Likewise, I learned about dyscalculia, dysgraphia, and other learning differences. 

3. When schools do evaluations, they may not be comprehensive enough to fully identify the issues, and the services offered may not be intensive enough to address the issues appropriately.  There are a couple of different options a parent can use: 1. In your initial request for evaluation you can list specific areas you want to have addressed (ie--fine motor, autism, dyslexia, and general educational testing).  You will often be required to get a medical statement from your doctor(s) supporting the issues.  Prep your doctor! They can be a helpful advocate! 2. You can go into the private medical realm, using your medical insurance to do evaluations.  Neuropsychological testing is a good place to start. Additionally, you can have physical therapy and occupational therapy evaluations done.  For visual and motor issues, some find a functional vision through a COVD eye doctor helpful. Likewise a basic hearing screen may not be sufficient if the underlying issues is auditory processing. (The ears work fine, the transmission to the brain for understanding is a bit off.)

4. If you are receiving services from the school district, you will likely learn that sometimes what your child needs is different from what the school is initially willing to offer.  The school may offer a 504 when an IEP is more appropriate for your student.  Your school district may offer services only once a week when your student needs more intense therapies to progress.  With regards to working through the school system, I recommend the book From Emotions to Advocacy by Pam Wright and Pete Wright. Additionally, states generally have special education advocacy groups where you can get coaching, advice, and support for working with school districts.  In some states, certain services are only offered through school districts. When our daughter became blind, we learned that services for the blind for children are done entirely through the school system.  On one hand, that makes sense as that is where children usually are---in the school system---and on the other, it was frustrating not to find services in the community. That said, there aren't many blind children or therapists who focus on that niche, so it made sense that those services were focused together.

5. There is so much more information available online than there was even a decade ago.  Understood.org is a good basic starting point. Be cautious of snake oil salesmen.  There are many who will try to sell supplements or services that aren't supported by scientific evidence.  

[SFisher]

On 2/26/2024 at 11:30 AM, prairiewindmomma said:

 The Mislabeled Child

Agree

On 2/26/2024 at 11:30 AM, prairiewindmomma said:

Understood.org

Also agree. Good for top level information. Can easily send link to teachers, grandparents, etc

Raising Twice-Exceptional Children: A Handbook for Parents of Neurodivergent Gifted Kids https://a.co/d/8NQm6VA

If you think your child might be twice exceptional and you want to know how to get a diagnosis. Or if you know your child is twice exceptional and you want to get them services in a US public school. I figured these things out the hard way, this book cuts to the chase and I wish I would’ve known it existed when I needed it. 

 

Misdiagnosis and Dual Diagnoses of Gifted Children and Adults: Adhd, Bipolar, Ocd, Asperger's, Depression, and Other Disorders (2nd Edition) https://a.co/d/2I8Fdv9

If you have a potentially twice exceptional child, this will help give you a bunch of background knowledge and perspective. Not everyone understands twice exceptionality. I have found I have needed to know a lot so that I could weed through what teachers/doctors/therapist/school suggests and decide if it is accurate, respectful, informed. 

 

Thinking Differently: An Inspiring Guide for Parents of Children with Learning Disabilities https://a.co/d/6Tp2dyN

I liked the mindset for parenting a child with a learning disability. Learning disabilities don’t have to limit potential.

 

The Dyslexic Advantage (Revised and Updated): Unlocking the Hidden Potential of the Dyslexic Brain https://a.co/d/8Vh8l97

I will preface this by saying my child is not dyslexic. But for a time, it looked like a possibility. The mindset of this book is eye opening. Dyslexia is a set of strengths and weaknesses, not just a deficit. It makes me question and reflect on everything society considers a deficit.

 

Podcasts

Two podcasts that talk about neurodiversity on the whole. For me, it was helpful that they talk about giftedness and 2e. They help to explain how gifted/2e fits into the bigger landscape of neurodiversity. Interview lots of people doing work in this area. 

https://podcasts.apple.com/us/podcast/tilt-parenting-raising-differently-wired-kids/id1102055778

https://podcasts.apple.com/us/podcast/neurodiversity-podcast/id1338562905

If you want to approach a US public school about a potential disability:

* Do requests in writing. Formalize with a date and a specific request. (My school officials tell me this isn’t necessary, but making an official request makes them kick in a timeline. So when we made a request for a 504, they’re required to acknowledge my request and plan a meeting in a specific number of days. If you casually do this in a meeting/call, the timeline is fuzzy).

* If you think your child has a possible disability, do a little reading and internet research to identify the symptoms they are showing. Write a list of those symptoms and possible diagnoses. Use that list to guide meetings. My first few interactions with the school were very confusing and went in different directions about their observations and ideas about what was going on with my child, rein it in and keep it focused on your request.

* Trust what your child tells you, even if it seems unlikely/illogical. Several things my child was telling us about his experience were not confirmed by the school staff. For example, he would say the classroom was too loud and he can’t concentrate. The teacher would say the classroom was quiet while the children were working on a test. Now we know my child has the hypersensitive subtype of APD. His experience was real. Be on your child’s side. Promise your child you will work to understand and get help. 

* Don’t assume the school officials know more than you do. Follow your instincts. Listen to your child. Don’t let them make you doubt yourself. You can tell them no if they suggest a specific intervention or assessment that doesn’t seem right to you. I find the school to be well meaning, but also uninformed in some areas. You may need to seek out an expert, get your child assessed and bring it back to the school.

* If you are requesting a 504, expect the school to ask you what accommodations you want for your child. Depending on your child’s profile, this can be a huge assignment. These accommodations can come from diagnostic reports. But, they also have to take in account your child’s preferences and your parenting choices. Sometimes I didn’t even know how to interpret the accommodation suggestion and had to get better understanding to even know how it would apply to my child in the classroom. Before you ask for a 504, know what accommodations you want to ask for and document them. There is no time in a 504 meeting to come up with accommodations… the meeting is just to get those accommodations approved. 

Edited February 28 by SFisher