Finding the Resources and Programs You Need
Whether you’re a parent who is raising a child with LD or an adult with LD who needs additional support, where do you begin to look for the information sources or services you need?
Join NCLD’s Parent Leader, Nancy Ventrudo, as she answers your questions and gives her insider advice. Learn how to:
- Make the most of your local or state Parent Training and Information Center
- Find other information sources and services in your area
- Locate free or low-cost resources
- Determine whether the resource or service is trustworthy
Read more about Nancy Ventrudo
This is an important question. First, you need to recognize that you know your child best, and so you should rely on your own instincts as you navigate this process. It will probably take some time to find the right person, but always come back to the notion that your gut instincts are important and you should listen to them.
I suggest that you begin by asking a few people you know and trust for recommendations. You may seek suggestions from parents who have mentioned having children with learning disabilities, a current teacher of your child or a teacher from a previous year with whom you had a good relationship and who seemed to understand your child. Additional sources may be school administrators, other school staff, a pediatrician or trusted friend. See if one professional’s name comes up multiple times and start there. If you hear as many different names as people you ask, start with the one that seems like it most closely matches your child’s needs. Keep an open mind when you receive suggestions.
Start with a phone call and ask questions about how they conduct the evaluation and what you can expect from the results. Don’t hesitate to be as thorough in your research as you need to be. Let them know your areas of concern and listen carefully to see if their expertise sounds like a good fit. If you are speaking with someone who does not seem like the right evaluator, as them if they have names to suggest. Professionals in the field know their colleagues and may be a good source for additional names. Be prepared -- it may take a number of calls to different professionals before you find the right person, but you will know it when you reach that person. Be sure to keep notes and reflect back on them. You will learn a lot through the process, which is a start to empowering you and your child.
As you probably can tell from my response, certainly some evaluators are better than others in assessing a language disability, as well as other disabilities. They will know their strengths and will be prepared to share them with you, so feel free to ask.
It sounds like you have some insights into a learning style that works for your child and perhaps the teacher does not. It is important to work with the teacher. You know your child best, and the teacher is the professional and works with many learning styles. First you need to develop a positive working relationship with the teacher. Using tact and diplomacy are likely to produce better results for your child.
You can ask the teacher for suggestions of ways you can work with your child at home, and then be sure to follow through with those suggestions. Also you can ask for a regular update on your child’s progress. If you do this, ask the teacher how he/she finds it easiest to communicate, which could be weekly or monthly phone call, weekly emails, a note that comes home from school on a regular basis, or periodic conferences. You will have much better luck with this if you use the communication that the teacher prefers.
During this process you will have the opportunity to share more information about your child, and you will learn what the teacher is learning about your child. As you develop this relationship you can introduce ideas that you think will work. If you find that a multisensory approach works at home or worked in another classroom, you can describe how it was successful. You will need to assess if the teacher is open to articles or books that you can share on the topic. Some teachers will find it helpful while others will not.
Remember that you and the teacher share the same goals for your child’s academic progress and you both play important roles. Working together will produce the best results.
I recommend that you start with the Parent, Training and Information Center (PTI) that covers the Houston area. Each state has a PTI and their mission is to provide assistance to families exactly like you. In Houston, the organization is called TEAM Project.
They will be able to put you in touch with the services that they offer, and recommend other resources for you to contact. You will find a considerable amount of information on their website. Most, if not all, of their assistance will be free of charge and they will know what other resources are available that are without cost or low cost. They will be able to help you with resources for both of your children.
Another resources that I would try is Texas Parent to Parent. It will give you access to parents throughout the state who have similar issues to yours. Many parents who have navigated the learning disabilities world with their own children are happy to share their experiences. Other parents find benefits from touching base with parents as time passes. From this website you can find a parent match or you can receive regular updates from this group. I think you will find it worthwhile.
Most states have a network for parents to communicate with other parents via the internet. It can be a wonderful resource for parents.
There are several websites that have good information about dyscalculia. Please look at these sites to learn more and to get some ideas about how teachers can work with your child:
As you will see noted, dyscalculia looks different for each individual, which may be why it is difficult for you to find specialists in it. On a positive note, because it is unique for each person, a teacher can work successfully with a student with dyscalculia if he/she observes and understands how the child processes mathematics.
I would contact your PTI for more ideas in your area. While the New York City office is located in Manhattan, it serves all five boroughs. Your PTI contact information is: Resources for Children with Special Needs 116 E. 16th Street - 5th floor New York, NY 10003 212 677 4650 firstname.lastname@example.org
Another wonderful resource is the NICHCY website. Their motto is “helping you help children with disabilities.” They provide state-specific program information as well as disability-specific information. It is a website that I use and recommend often. It is easy to navigate and full of good information, as well as links to other resources.
As I have suggested before, start with the New Jersey PTI. This is the contact information for them:
Statewide Parent Advocacy Network (SPAN)
35 Halsey St., Fourth Floor, Newark, NJ 07102
The ARC of New Jersey would be another place to look for an advocate. Their whole website is helpful, but the following contact is specifically for assistance in finding an advocate: email@example.com call - 732.246.2525, x20
For all parents outside New Jersey, ARC is often a good resource be sure to find the ARC chapter in your state.
I would go directly to the source to find a trained instructor in Orton-Gillingham and Wilson Language.
For Orton-Gillingham I have attached a partial list of providers:
If you don't find something in your area, I suggest contacting the main organization and asking for providers:
Wilson Language is also based on the Orton-Gillingham philosophy.
To contact them you can:
As you have discovered, children with learning disabilities can exit the school system but still need support services into adulthood. It may be that your son qualifies for Vocational Rehabilitation Services (VocRehab). This program is administered through each state to help disabled adults gain employment and live independently. School districts team with VocRehab during the high school years to prepare eligible students for the transition out of high school. Contact your local high school Special Education Department for the VocRehab contact in your area.
In addition, be sure to read this article from NCLD entitled "Self-Awareness and LD: Enhancing Skills for Success in Life." It may give you insights into how you can help your son.
Also, LD.org has many articles and tips about adults with disabilities succeeding in college, work, and living independently.
There are lots of sports and activities available for the 8 year old girl you describe. In fact, extra curricular activities are healthy and important for all children.
You can help her choose the activity by focusing on her interests and on her natural strengths. You can get ideas for what is available from schools, recreation centers, community centers and libraries. You mention swimming lessons, so you may want to start there.
Once you sign up for the activity you should speak with the program director and/or instructor to provide enough background information so it can be a success for all.
If the girl has an IEP and the team agrees, it may be possible and beneficial to write extra curricular goals into her IEP.
It sounds like your son is "twice exceptional," a term that is used to describe a child who is both gifted and learning disabled. It may seem that school tends to focus on the disability rather than the gifts. You need to work collaboratively with the school for him to get his individual needs met, even if it feels like an uphill battle. As your son reaches high school curriculum it may be easier to find challenging work and maintain the support services he needs.
You know your child in a different way than the school, and it is important for you to share your knowledge with those who will be working with him/her.
It is a good idea to keep a portfolio with all the relevant materials about your child.
Start a notebook of things that work for your child and keep adding to it. You may include a positive description of your child, including strengths, interests and favorite activities. You can also include behavioral supports that have worked in the past, as well as classroom arrangements where your child has been successful, in terms of seating position and noise levels. Include samples of work and samples of accommodations that work.
Many parents claim that they are able to get each school year off to a good start by introducing the new teacher to your child through the information in the portfolio. Also in the portfolio keep all relevant paperwork that you receive from the school. That way you will have all records from prior years and will have ready access to the past.
While reading any material, I have to read, read, reread again and again to comprehend.
This behavior is not good because I have tests with multiple choice questions and 1 minute is allotted for one question and I'm failing because i cannot read and comprehend questions in one minute. Are there programs for adults with reading disabilities?
Yes, there are programs for adults with learning disabilities in reading, and in other areas too. It is never too late to look for help to shore up skills.
I suggest you start at your school. It is likely that there is a department that coordinates services for students with learning disabilities and approves uses of accommodations of students with disabilities. The main office or the academic dean should be able to get you to the right place.
In addition, LD.org offers a resource locator to find one-on-one advice or a referral to a specialist in your area.
You will want to be evaluated so you better understand your disability and then can begin to get appropriate help.
I cannot explain the behaviors you describe about your child, but I can make suggestions of where you should turn.
Child Find is a federal program where states are required to identify, locate, and evaluate all children with disabilities. They will be able to tell you if your child needs early intervention or special education services. While the program is designed for children 0-21, it generally is used for young children like yours. Your pediatrician should be able to put you in touch with Child Find in your area.
As an alternative, you can find the local Child Find through your state’s PTI. Your state PTI can put you in touch with Child Find in your area.
The neuropsychiatrist should know that you are not sure the bipolar diagnosis is accurate, or that there may be something additional happening, as in AD/HD. The educational evaluation should focus on the possibility for learning disabilities.
The most important thing to know is that a medical doctor is not going to address the learning disabilities directly, and the educational evaluator will not be able to address the medical concerns. If you receive multiple diagnoses you will need to coordinate the recommendations of all.
As to finding a second opinion, please refer back to my comments on finding an evaluator. They apply to finding a medical contact as well as an education contact.
A transition plan must be included in an IEP as a student moves from school to a post-school activity. If your child has an IEP there should be a portion of the IEP that addresses a smooth transition, including post-secondary education, vocational education, employment and adult services.
A good description of these expectations can be found in Randy Chapman’s book,”The Everyday Guide to Special Education Law; A Handbook for Parents, Teachers and Other Professionals.” It is much easier to read than the title suggests and it covers a lot of topics.
It can be frustrating to feel like you are speaking a different language than the teachers. I suggest you educate yourself about the acronyms and language that they use. The National Dissemination Center for Children with Disabilities (NICHCY) has a wealth of information, including educational acronyms.
Find the list that most matches your needs and keep a copy in the file that you take to school with you, for quick reference.
NICHCY has a listing of state-specific information, so you can access the names of people and departments within the new state.
When you arrive in the new state they will use the existing IEP to provide comparable services from the old state, until a new evaluation is conducted to determine eligibility of services, and a new IEP, if necessary.
It is important to communicate with the IEP team to insure that your child is making progress toward her goals. In fact, it should be written into the plan when you will be advised of progress toward goals. It is important to stick with these dates and get the information at appropriate times.
Read and reread the IEP and keep track of progress. Communicate with the team so they know you are on top if it.
Working together you should be better able to set goals that are appropriate and attainable.
There are various ways to find an advocate to work with you. A personal referral is a good bet, if you know someone who has used an advocate.
The Council of Parent Attorneys and Advocates (COPAA) is a good resource for finding an advocate.
The ARC is another resource. They are a chapter organization, so you find the office nearest to you.
You can start with the PTI in the state where you reside. If you go to this link you can find the Parent Training and Information Center nearest to you. The PTI will direct you to appropriate counselors or agencies.
You also can go to the high school in your community and ask for assistance from the Special Education Department. Put all formal requests in writing and keep track of all correspondence.
To answer your direct question, it is not necessary to have trouble in both math and reading to be diagnosed with dyslexia.
More important, hopefully it will not matter. If she has been diagnosed with a learning disability, the school will work with you and your daughter to give her instruction and accommodations that will help her to succeed in school. An IEP is an Individual Education Plan, so it will cater to her specific needs.
If you want to pursue it further you can have an independent evaluation done. You will need to pay for this evaluation yourself. If you go this route, you can share the findings with your daughter's team.
There are so many great books available. I have listed a few here:
25 Strategies for Guiding Readers Through Informational Texts
By Barbara Moss
The Effective Teacher’s Guide: 50 Ways for Engaging Students in Learning
By Nancy Frey
Learning Outside the Lines
By Jonathan Mooney and David Cole
(This is written by self-advocates who struggled in school and have flourished since then)
Today's Parent Talk has concluded. Thanks to everyone for their thoughtful questions and special thanks to our expert, Nancy Ventrudo, for sharing her time and expertise with us today.