Shining Star: Molly Ivy

With encouragement from my colleagues at Children’s Therapy TEAM, I am beginning a Shining Star series in my blog. Periodically, I will spotlight individuals in our community who I think are inspiring. The lives of these individuals affirmatively answer the question, "Is there hope?" This week I’m highlighting 22-year-old Molly Ivy (diagnosed with Autism at the age of two) and her mother Nancy Wells. 

Having treated Molly several years ago, I could not be prouder of the young woman she is today. Molly finds particular joy in expressing herself through writing. She feels that her Autism actually helps make her more creative. She shares, “Frankly, I like going for what people don’t expect in stories like writing about magic and creatures of other worlds.” Molly drew on her creative gifts to publish her own book, “A Journey Long Magic.” Molly’s mother shares, “There are no limits to Molly’s abilities as a writer.”

However, long before Molly’s mother Nancy ever felt a sense of peace about her daughter’s well-being, she recalls her tendency to “worry and obsess about what had yet to be accomplished.” Before she embraced what she refers to as the “magic” of having a child with Autism and the wonder of each phase of life, she was relentless in her mission to find answers.

When Molly was a toddler she seemed to go through what her mother observed as an “overnight change.” She had loss of speech, sensitivities to almost everything, sudden meltdowns and sleeplessness. She ate dirt to the point that Nancy had become concerned about possible lead poisoning. She would sometimes hurt herself or others when she was in settings that she found unfamiliar or uncomfortable. Leaving the house, no matter where the destination, was overwhelming for Molly, and as Nancy noted, “disastrous for everyone” in the family.   

At the age of two Molly began speech therapy and occupational therapy. Nancy contacted Dr. Ivar Lovaas from UCLA after an area psychologist recommended “The Me Book”.  Dr. Lovaas and Nancy had weekly conversations which helped Nancy troubleshoot adapting a space to work with Molly in the home. Dr. Lovaas created a modified version of his ABA (Applied Behavioral Analysis) program for Molly. This program included a team of therapists to help family members and caretakers implement the program. 

Continually seeking out new options, the family enrolled Molly in Auditory Integration Therapy as well as mental health counseling when she was 4 years old. Nancy shared, “We did see improvements. The Auditory Integration Therapy really helped her hearing and light sensitivities.” When I asked Nancy about her biggest worries for Molly as a child with autism, Nancy commented on her concerns about Molly’s safety and vulnerability. She shared, “She was non-verbal until 5 years old and an easy target for harm of all kinds.”

With ongoing progress in her therapies, Molly blossomed. As her communication improved, she was able to articulate her thoughts and feelings. This opened up a whole new world of insight for her family. Nancy vividly recalls when her then 17-year-old daughter shared, 

“I think I will become an adult and 

will never have had a friend.” 

Convinced that local high school options were not a good fit, the family contracted an education consultant to search for a better option. They discovered a private Massachusetts boarding school for individuals with disabilities called Riverview School.

Molly’s time at Riverview proved to be what Nancy referred to as “the best four and half years of her daughter’s life so far.” Reflecting on her time at the school, Molly shared, “They taught me about all kinds of things and we went to lots of places. Before I went there I was isolated. Riverview gave me a normal life with lots of good friends. I still keep in touch with them on Facebook.” 

Now back in Northwest Arkansas, Molly is a student with the AbleTalks Pilot Program. Through this program, Molly hones in on her career planning and goal setting. She also has regular opportunities to continue developing her language skills through work with a speech therapist. Reflecting on how far Molly has come, Nancy shares, “Molly has achieved a feat that many others chase their entire lives: the career of her dreams. She loves what she does and who she has become. What better blessing can a mother experience?” 

Want to read Molly’s latest book? It’s definitely a magical page-turner!

It is available at Amazon on paperback or Kindle.

Resources:

AbleTalks
Auditory Integration Therapy (American Speech & Hearing Association)

Lovaas Institute
Molly’s Monters
Riverview School

IEP vs. 504

Dear Melissa,

I am a parent of a 10-year-old son with Sensory Processing Disorder (SPD). I recently discovered on an SPD parent chat group that some children have IEPs and others have 504 plans. What is the difference?  

Ahhh, this one gets pretty confusing. Though they have different definitions, I will admit, as a private-practice OT rather than a school system-based OT, it seems as if these two documents look a lot alike at times. So let's break it down into black and white.

IEP vs. 504

In practice, an IEP and a 504 are quite similar. Both are legally-binding documents which outline modifications the school will make to help the child achieve academic success.  Modifications need to be “reasonable” (meaning that they pose no undue hardship on the public school) and “education-based” (meaning that modifications need to have a direct link to a child’s academic goals).

So which one does your child need? To over-generalize: If your child’s disability is more physical/medical in nature and your child is otherwise well-served in a regular education classroom, then the 504 is your document. However, if your child has more cognitive, emotional, developmental, or behavioral concerns, then you probably need the additional special education services that the IEP provides. In addition, all children under an IEP are also automatically covered under 504 as the IEP is the more robust of the two documents. 

Background

The IDEA (Individual with Disabilities Education Act) was first enacted in the United States in 1975. It ensures children with disabilities have “free appropriate public education” in the “least restrictive environment”. In this “least restrictive environment,” children with disabilities should not be separated from their non-disabled peers simply because of their disability. Rather, they should only be removed from their peers for portions of the educational day which cannot be adequately met in a mainstream classroom. The law defines “children with disabilities” as between the ages of three and twenty-two and having one or more of the following conditions:

• Intellectual impairment
• Speech and language impairment
• Visual impairment (including blindness)
• Hearing impairment
• Orthopedic impairment
• Traumatic brain injury (TBI)
• ADHD/ADD
• Other health impairments
• Autism Spectrum Disorder
• Specific learning disabilities (this is often how children with visual/motor/handwriting difficulties qualify)

IEP (Individual Education Plan)

An IEP is a document that details the special education and related services that the child should receive based on input from the educational team, the parents, and, when appropriate, the child. It is a legal, written, binding document and is based upon the evaluations of the school professionals as well as other special consultants (private therapists) when necessary. The formation of an IEP should be a collaborative effort and is created at a meeting at a mutually-agreeable time. It is important to remember that the parent is an equal partner (by law) in the IEP process, meaning that no part of the IEP can be carried out without the parents’ approval. A parent can also call a meeting at any time to discuss the need for revisions to the child’s current IEP. 

504  

This educational plan is called a 504 because it refers to Section 504 of the Federal Rehabilitation Act (1973), which requires all agencies that receive federal monies to provide access to individuals with disabilities. In the school setting, if a child does not qualify under IDEA, he may be deemed eligible for services under Section 504. This usually means that a child does not qualify for special education services but that he requires some type of modification in order to achieve his or her full academic potential. The school will evaluate eligibility based on:

• Whether the child has a physical/medical impairment
• Whether this impairment hinders the child’s access to the physical/educational environment
• Whether this impairment hinders the child’s learning
• The types of accommodations the child requires to receive a public education. 

Possible modifications listed in an IEP or 504 could include:

• Additional time for homework/test taking
• Shortened assignments
• Sensory breaks
• Picture schedules
• Preferential seating
• Use of typing device instead of writing by hand
• Use of specialized communication device
• Behavior modification plans
• Special education classroom setting
• The number of minutes the child spends in a special education vs. typical classroom
• School-based OT, PT, Speech, or Counseling
• Assistance with agenda books
• Communication tools between school and parents
• Provision for regulating sensory input such as earplugs, fidget toys, headphones, study carrels, etc. 
• Oral test taking or having test questions read aloud to a child
• 1:1 assistance at difficult times of the day including the lunch room and transitions
• Have the teacher provide paper/digital copies of lecture notes
• Pair the child with a “positive peer”

This is just a sample of possible modifications and is by no means a complete list of modifications. It is important to work with the child and the school to find out which modifications work best in each situation. Keep in mind that IEP’s and 504’s are individualized documents and should reflect the needs of each individual child. 

Resources:

Parent Advocacy: IEP Steps, Children's Therapy TEAM Blog, Melissa Foster, (Posted Sept. 2015)  

Link to 9/14/15 blog

Effective Parent Advocacy, Children's Therapy TEAM Blog, Melissa Foster, (Posted Sept. 2015)  

Arkansas Support Network

Steps in the IEP Process, Education.com, D.D.Smith, (Accessed August 2015)

A guide to the Individual Education Program, US Department of Education, (Accessed August 2015)

Special Education Unit, Arkansas Department of Special Education, (Accessed August 2015)

What is the Difference between IEP vs 504 Plans, University of Washington, (Accessed August 2015)

Parent Advocacy: IEP Steps

credit: Envato Images

Dear Melissa,

My 8-year-old son has a diagnosis of ADHD and struggled academically much of last year in the first grade. He frequently has difficulties with attention and impulsive behavior. Now that second grade has begun, I see these same patterns occurring again, and I am afraid he is slipping even further behind. What can I do to help set him up for success in this new school year? 

Not all students that have disabilities require a specialized plan to meet their academic needs. However, if you feel like the standard curriculum is not meeting your child’s needs, the time to act is now! The IDEA (Individual with Disabilities Education Act) was first enacted in 1975 to ensure that children with disabilities have the right to “free and appropriate public education.” The application of this law in practice is different for every single child in our public school system. Based on my experiences, the actual process is long and complicated and can stretch from many months to an entire academic school year. Here is a condensed and simplified version of how this works.

First contact  

Set up a “fact finding” meeting with the teacher and/or school administration to begin to address what is working and what is not working. It is best if you can remain calm and collaborative. The school is here to help! In actuality, it can be the teacher who begins this process rather than the parent. If it is you, the parent, who is making this first contact, you can share ideas to help make this run more smoothly. I detailed ideas related to this in my Effective Parent Advocacy Blog. 

Pre-referral 

This is a screening process to determine if formal evaluation is required. This includes a teacher observing the child closely to document what actually is and is not working (rather than just theories that the parents and teachers had in the “first contact” meeting). It is also a time for the teacher to set up informal interventions to see if the child’s academic needs can be met with a few simple modifications. A more elaborate plan may not be necessary.

Referral

If the informal interventions by the teacher are unsuccessful, the child will be referred for special education services, and a formal assessment will be scheduled to determine where the child has specific strengths and difficulties.

Evaluation/Eligibility  

Standardized assessments as well as classroom observations are completed by various members of the multidisciplinary team. These team members can include teachers, psychologists, occupational therapists, speech therapists, physical therapists, etc.  The members of your child's multidisciplinary team will vary depending on the initial concerns of the parents and teachers. These professionals look at these formal observations and scores to determine if a child meets the requirements for a “child with a disability” as defined by IDEA.

Development of IEP  

This is where the fun begins! (Do you hear my hint of sarcasm!) As a private occupational therapist, I have attended many of these meetings with the parents of my kiddos, and they always are a bit overwhelming. We all sit in a big room with teachers, assistant principals, parents, school psychologists, and any other therapists that the school or parents could muster up. Sometimes these meetings are very cordial, and everyone is basically on the same page. Other times there is much heated debate. After the dust has settled and the discussion is over, a written document is produced to outline the team’s plan of action containing the recommended special services and environmental modifications. In addition, various goals for the child are set by the team to help ensure that the child’s progress is being properly monitored. 

Implementation of the IEP  

It does no good to simply create an IEP; it must be USED. Constant monitoring and communication are required to make sure that the plan spelled out in the IEP is carried out.

Re-evaluation of IEP

Yes, the IEP is simply a piece of paper, and yes it must be used, but what if things aren’t working?  Even the best-laid plans can have some hangups. Or sometimes the plan works beautifully, and it is smooth sailing from here on out. Either way, an IEP is regularly reviewed, usually every year, with the entire evaluation process repeated every 3 years (depending on state/district). However, If things are NOT working as planned, a new IEP meeting can be called to allow changes to be made to the original IEP and then agreed upon by all involved parties. 

Whew!  That is a looooong process!  What are you waiting for?  Time is wasting! 

In Northwest Arkansas, if you need extra support through the process don't hesitate to contact my good friends at Arkansas Support Network.

Do you have a question you would like me to address? 

Please don't hesitate to share: www.share@childrenstherapyteam.com

Resources:

Effective Parent Advocacy, The Initial Steps, Children's Therapy TEAM Blog with Melissa Foster, (Posted September 2015)
Steps in the IEP Process, Education.com, (Accessed August 2015)

A guide to the Individual Education Program, US Department of Education, (Accessed August 2015)

Arkansas Department of Education Special Education Unit (Accessed August 2015)

What is the Difference between IEP vs 504 Plans, University of Washington, (Accessed August 2015)

Effective Parent Advocacy?

Dear Melissa,

My 4-year-old son just started a new preschool a few weeks ago, and I’m not sure that it is a good fit. How do I go about talking to the teacher/administration to help change the situation?

I have been a mama for 7 ½ years and an occupational therapist for over a decade. I have worked with my share of preschools and schools, both public and private, and I have attended countless school meetings both as a parent and as a therapist. As Mamas (and Daddys) we want our children's school experience to be the absolute best. However, sometimes the school environment is simply not a good fit.

You will never see me be more of a “mama lion” than

 when I feel the need to advocate for one my cubs!  

I will be honest. Some approaches I have tried worked, and some have not. But if you feel the need to advocate for your child, DO IT! 

Here is my list of "Best Shot" practices for talking to the school in an attempt to make a positive change for your child: 

1. Identify the problem. 

It’s not good enough to say that “things aren’t good”. Try to figure out what about the situation isn’t working and have some ideas ready as to what might solve the problem. Does your child need a lower teacher/student ratio? Does your child need additional tutoring? Does your child need special medical considerations? Also, take into consideration the feasibility of your requests. If you have a list of specific (reasonable) demands, you can make a more clear, concise argument.

2. Know your audience. 

It does you no good to have a meeting with the teacher, only to find out that her hands are tied and she has no control over a particular situation. I feel that often times (in both public and private schools) the teacher knows what needs to happen to make the appropriate accommodations, but her administration won’t listen to her requests.This is when I like to request a joint meeting between the parents, teacher, and the administration so that the teacher can see that you are advocating for her as well. Often the administration won’t listen to the teacher alone, but if the parent is making a particular request in front of both parties, your chances are more likely to be heard.

3. It takes a village. 

Ask yourself, "who knows your child and who will be willing to attend this meeting to support both you and your child?" It can be very intimidating for a parent to sit across a table full of school personnel and be greatly outnumbered. Solicit the assistance of your child’s therapist, grandma, auntie, coach, pastor...anyone who will be a calm voice of reason in a potentially volatile situation.

4. You get more flies with honey. 

It is ALWAYS a good idea to start the meeting off with something positive. The facility, an individual teacher, a particular activity, SOMETHING. Most teachers and administrators are in this profession for the right reasons. It may simply be that they are unaware of certain problems and are actually more than happy to try to fix them. You will likely be more successful if you go into the meeting with a positive attitude rather than immediately go into attack mode.

5. Compromise if need be. 

OK, you stated your wish list, you tried to shoot for the stars, and it looks like you aren’t really getting anywhere. Now it is time to prioritize what is necessary to make the situation work. NO, “good enough” is not good enough, but ultimately, what are the necessary items to create a positive environment for your child?

6. Know when to walk away. 

I have made this list many times myself, both as a mama and as an OT, trying to determine the best placement. Some of my ultimate questions include:

1. Is the child SAFE? Both the physical and emotional environments need to be an appropriate match for a particular child. 
2. Is the child loved? I don’t care if it is the lunch lady or the librarian, somebody at that school needs to think that my child is wonderful!
3. Can the child grow? Yes, grow academically, but also socially and spiritually. 

7. Have a plan B. 

So you decided that this school situation will not work for your child. Now what? Always have a secondary school in mind that you think will work for your child/family (public vs private, different pre-school, petition for a different classroom/district, etc).

Still need help? Talk to your child’s occupational, physical, or speech therapist to see if he/she might have some ideas to problem-solve the situation. Also, for Children's Therapy TEAM families, our on-staff Family Support Coordinator, Amber Spencer, is available to offer her sage parenting advocacy experience. Also, here in Northwest Arkansas, we have a fabulous resource in the Arkansas Support Network. This is a free service that can help parents to navigate school settings. 

Resources:
Arkansas Support Network
5 Ways to Handel Teacher Troubles, Stephanie Dolgoff, Parenting.com (accessed September, 2015)
What Teachers Really Want to Tell Parents, Ron Clark, CNN.com, 2013 (accessed September, 2015)