the longest IEP meeting of my life!

IEP re-evaluation and eligibility determination

surviving the IEP meeting

 

my meeting was from 2:30 to 5pm!

This time of year is key for parents of pre-k students or students getting ready for kindergarten.  When a student is first eligible for services with the school they are most often labelled DD for developmentally delayed.  This label drops by age 6 for kindergarten and students will lose all their services!   I opened my re-evaluation on 08/31 and did not meet to determine eligibility until January.  I also have an additional meeting scheduled at the end of February because we need to follow up regarding additional services/accommodations and behavior plans.

If you need to have re-evaluation and/or eligibility determined I have some starter suggestions below.  I also recommend being honest about the time and energy in this process.  It will take almost 1/2 the school year, the length of a semester or two grading periods.  I also recommend working to take the emotions out of the preparation phase of planning.  Have your research, data and outside documents ready to go on the day you open the re-eval.

  • be prepared,: water, food, paperwork, family members, baby sitter, time off work
  • do your homework on strategies, teachers, alternative therapy, policy
  • bring an advocate
  • make a short term and long term goal
  • don’t give it all away at the gate…they don’t have to know your plan for your child
  • play the game to win
  • remove emotion

 

Remember: eligibility does not determine placement

 

This is a key phrase you will want to have ready if or when the IEP team (you are the captain) decides placement suggestions for your child.  This is when you will have to have already made a game plan that is right for the family and stick to it.  So, for example when my son is eligible for ASD as a classification it does not determine that he has to go into an ASD classroom at another school.  Remember that your child is entitled to a FAPE (free appropriate public education) in the LRE (least restrictive environment).  Also, the parent has the final say and has the right to go against the advice of the IEP team.

Best of luck on your next IEP meeting!

NewRuth

 

 

 

breaking up with your child’s therapist…

is hard to do.

I quit OT and speech therapy today!

breaking up with childs therapist

It is never easy to break up with your child’s therapist.  I have sadly researched how to break up with therapists in the past.  I have broken up with therapists in the past as well as currently.  Various reasons can make you break up with a therapist.  Some of my breakups happened because

  • my son didn’t make gains within a 6 month period
  • inability to make a positive bond with my son or me during a period
  • unable to service our family therapy needs
  • therapist can not bill insurance
  • therapist has to change from home therapy to center therapy
  • therapist moves locations
  • lots of absences or call outs over 6 months

 

So, why I broke up with my speech and occupational therapists today…

Many factors took place into this decision.  When we started therapy almost two years ago, I told myself that I would drive the 18 miles one way for the 60 minutes of therapy because that was what doctors recommended.  I was driving from work 14 miles to my house, to pick up both kids and drive the 18 miles to the therapist.  Then drive home in rush hour traffic while my kids eat a fast food dinner in their car seats.  When I started this journey I also promised myself that I would look for a closer therapist with more availability.   That’s the largest factor.  Then there are other factors like the constant fighting between my two children and my son’s resistance in cooperating with going in the building. Another secondary issue was essentially a plateau in growth.  My son was basically making slow growth and had plateaued.  In reflection, I listened to the recent evaluations and both therapist see him making big gains but not making marked gains according to the assessment required for reevaluation.   The primary problem for my son continues to fall into staying on task for non-preferred activities.

So, instead of continuing to push and push with the therapy.  I took a step back and broke up with my therapist to honor myself as a mother and the decision I made for my son.  I also was really enjoying my Wednesday afternoons with my kids relaxing!   I gave myself permission (with a little push) to stop running around and just work on our life environment.

Tips for breaking up with your child’s therapist:

  1. give the therapist a heads up regarding your concerns to try to solve them
  2. if you can’t resolve the problems then decide on an end date, like a 2 week notice
  3. always break up in person or over the phone
  4. sometimes face to face or over the phone isn’t possible, write a thank you note via email or mail that gives a reason for your break up
  5. trust your gut decision

 

Best of luck breaking up with your therapist!

NewRuth

 

 

 

 

It will get harder before it gets easier…

Tips for parents who struggle with behaviors and children who have limited language skills.

Follow up to our January 1st meltdown over not being able to do the wash (laundry) at his time with his routine.  Max messed up his entire room in protest of not being able to put the soap in the machine.  See Part 1.

Max is 5 and has autism.  He has been  diagnosed for almost a year.  We have been getting various therapy and intervention since age 3.  Now, that we have 5 months of ABA therapy we are starting to see more substantial changes that allow us to help him better.  We are able to understand his desires, wants and needs so much better. That helps so much with him getting angry or frustrated and acting out.   In the first video, he takes apart all the floor letters and dumps all the clothes and toys out.  When he does this you can hear him say things like mess, and oh no, and other words depending on the problem and degree of frustration.

So, part 2 shows that Max cleaned up his entire room with only a few verbal prompts to help put the letter back together on the floor.  When this happens it is definitely a learning experience because he has to tell me what the letters are and put them back together like a big puzzle.  He is following one step directions without prompt or repeating.  See Part 2.

my suggestions if you struggle with a child with similar behaviors…

best advice: it will get harder before it gets easier.

  • If your child has behaviors that are difficult like throwing things, hitting, messing up a room or similar get a behavior therapist. (ABA)
  • The therapist can help you determine the cause of the behavior and walk you through how to help your child in different situations.
  • Don’t leave valuable items out in the house that could be destroyed; limit the options and choices available to the child.  I put up 10 puzzles because for some reason my son would throw the puzzles on the ground and the pieces would go flying.  That was a lot of work to pick up!  So, puzzles went away.  If you want them bad then he’ll ask.
  • Record them and then play it back.  When they see how they are acting and you can talk about it to them; explain feelings and emotions.
  • Hold them accountable, determine what the child should do to clean up, fix or pay for items that they damage or destroy.

 

Enjoy Part 2 of Max’s Meltdown/Cleanup.

 

NewRuth

I read a book! I need cliff notes for next time…

So, I read my first book dealing with autism from cover to cover!  I’m not going to lie, about 1/3rd of the way through when it started getting all technical I started to think…where are the cliff notes on this book?!

verbalbehaviorapproach

So, this book is very helpful in the understanding of the type of applied behavior analysis therapy (ABA) that my son is receiving.  It is like mind-blowing and so cool.  It is also totally over my head. LOL   My Dr. at the ABA clinic gave me a copy of this book.  So kind, right?!  He’s a smart man.  He knew I was going to read it and than do something.  So, I started reading and reading then researching.  Why are there not summary notes or cliff notes on these academic books?

Even though there were no cliff notes, I kept reading because the author, Mary Lynch Barbera, had me hooked on the second page of chapter 1.  I also knew that my son was receiving this type of therapy and we were making a commitment to the clinic and school for the next three years.  So, here are the chapter topics and some quick notes from me!

  • chapter 1: Starting with ABA
  • chapter 2: The ABC’s of ABA
  • chapter 3: Assessing your Child
  • chapter 4: Developing Reinforcers
  • chapter 5: Manding
  • chapter 6: Increasing and Improving Speech in Non-Vocal or Minimally Vocal Children
  • chapter 7: Errorless Teaching and the Use of Transfer Procedures
  • chapter 8: Teaching receptive Language Skills and Other Nonverbal Operants
  • chapter 9: Teaching Verbal Operants
  • chapter 10: Putting it all Together
  • chapter 11: Teaching Toileting and Other Important Self-Help Skills
  • chapter 12: Final Thoughts
  1. In chapter 2 you want to skim to find the ABC’s of your child’s behavior.  She calls it determining the functions(s) of the behavior. Read the entire chapter then jump to the section that fits your child’s behavior and re-read and take notes on that section.  She gives you ways to prevent or replace behavior!
  2. In chapter 4, a must read and re-read chapter also.  REINFORCERS are key to success with the verbal behavior model.  Take time here and thing about what motivates your child or what your child likes to eat, play with or do.  This will help when you are ready for any table work at home.
  3. Try to understand what demands are and are not.  There is no dedicated chapter to demands exactly.  This also goes for remembering and learning the ABA language within the program.  What is tacking, manding, and imitation for example; there is a glossary in the book too.
  4. I loved the examples but don’t know how to apply them to real life.  I would assume LOTS of practice would make the work and demands function well.   Bookmark the examples so you can revisit them.  Also check out the appendix (for real) because lots of charts and forms from the examples are included in the text.

 

Overall, the book was very helpful in understanding the therapy my son is receiving and teaching me the basics that I can review and later go back to get more examples and understanding of.  My recommendation would be that the book should probably be two different books.  One written for professionals with all the technical language and a second book for parents, written from a parent perceptive with more common language.

Order a copy of this book on Amazon!

P.S. My Dr and ABA high-fived me after I told them that I read it and was able to use the key words to describe how it helped me learn about the therapy my son was receiving.  They were so happy that the Dr. gave me 2 more copies!!  So my MIL is reading it and I gifted a book to the VPK program at school.

Are there any books that you want to read but could benefit from some quick notes?  Share you suggestions.

NewRuth

 

a day in the life of a 5 year old with autism, part 1

My son is 5 years old with autism spectrum disorder (ASD).  Behaviors have improved and advanced.  I have worked to document our first event of 2017 related to some of the ritual or obsessive behaviors that can be present on varying levels with people on the spectrum.

The video is linked to my YouTube channel for you to watch; it’s 2 minutes.

Background information to the video:  Max loves to do the laundry.  He likes to use the machines and add the soaps to the wash.  He will say wash when he wants to go into the garage to do the activity.  He likes the routine structure of the wash, the first, then approach and that it doesn’t change.  He always knows what to add to the machine, where and how much.  He will also unload the washing machine and start the dryer.  Great occupational therapy (OT) activity too!

So, I had started the wash without him. He was doing other things and not wanting to stop or transition to the wash.  When he came into the garage he started to try to add soap in the start to end process.  Soap had already been added so when I said, “No, no more soap.  It’s all ready done.”  He got upset.  He got so upset that we place him in his room as a way to de-esculate the problem and help him calm down. He could or would not get over the laundry not being done the way he expected.

Watch the candid video below on YouTube.

So, what do you think happens next?  Does it get more of a mess or does Max clean it all up?

Come back for part 2 to find out.

 

NewRuth

a reflection: alone with autism

Happy New Year!

I was happy to celebrate at my Noon Years Eve party this year to bring in the 2017 year. Looking back over the holidays  and years I’m happy to be in this place.  I didn’t know how I would make it many days; even after the third day of winter break this year I was unsure if I was going to survive the two weeks.

Looking back on my journey, I was alone most of the time.  When I say alone it is not physically alone in since of time.  Don’t get me wrong there was a lot of time that I spent with just the kids.  I was alone with autism .

I had to be alone with doing what was best for my son.  I was alone reading and researching treatment, theories, and examples of autism.  I knew it was autism after we started therapy (speech and occupational) and I started reading, watching videos, and asking questions.

I had to fight and I’m not a fighter!  I like to make peace, love and laughter.  I want to smile and have fun but I couldn’t because I had to fight.  I am a people-pleaser and I had to tell my family that my son had autism.  He wasn’t normal, he wasn’t going to be normal but with therapy he was going to be functional independently.

So, during the process I spent time with my children.  We went places together, had fun and pushed the limits on what my son could tolerate.  I made sacrifices to pay for therapy; I didn’t buy new clothing for myself for an entire year.  I kept moving forward looking for help, resources and anything that could help my son and family.

Looking back on those times I am happy that I made those decisions, glad that I fought, and pleased to say that I have a family that supports me 100%.  I have read many stories and meet many people that have not been able to maintain their own marriages or relationships with the other parent when faced with an autism diagnosis.  I am very thankful for my husband and the support that he gives me and my son.

So, if you are new to autism or still working on your journey feeling very alone I understand.  I can tell you that it will get better.  Some things that I have started to enjoy about our life.  I worry less about trying to “do” activities that other moms may participate in.  I schedule play dates at familiar playgrounds, I let my child decide when he will play, I invite people into our space, I am patient, I spend time alone with my typical child, I let my child make request and I learned to love who I am, who my son is and who we have all become as a family with autism.

So, some days I may feel alone with autism but I am not.  I have a family that loves each other for who they are and who they will become.

My 2017 goals are that you are not alone in your journey to find  help for your child.  That 2017 brings access to therapy and resources to help your child be their best self. I will provide content that will help you access resources, educate yourself and others about autism and advocate for your child.

Happy 2017!

NewRuth

 

 

10 reasons why health insurance sucks

SIGH

you need it…

health insurance

 

There are so many issues with insurance I’m still not sure where to start writing!

10 reasons why health insurance sucks

 

  1. you don’t have coverage
  2. high deductibles
  3. high co pays
  4. small networks of doctors
  5. high premiums
  6. denied claims
  7. unpaid claims
  8. documenting spending account transactions
  9. a diagnosis
  10. communication

Did I miss a reason? Comment below…

 

 

How I deal with my commercial health insurance policy…

  • I know my coverage and benefit
  • I know my cost, deductibles, premiums, out of pocket max, everything!
  • I check online for my explanation of benefits (EOB)
  • I check my EOB with my providers summary of monthly charges
  • I call at least once a month to have claims reprocessed, explained, or justified
  • I ask for a supervisor often
  • I make copies of everything
  • I fax (old school but cheap and you have a receipt of delivery)
  • I cuss at them over the phone, just because it makes me feel better
  • I ask for support services, treatment plan nurse or employee support programs

 

Stay connected for more insurance stories in the future and please comment with any ways insurance sucks that I left out!

NewRuth

 

do you have dreams about what will happen to your special needs child when you…?

…when you are no longer able to care for them?

 

I have!  I haven’t had one in a while but I have had the same dream over and over.

I dream about being alone. (LOL)  I dream about being alone as an old lady.  I live in a little house in a downtown area like St Pete, FL near all the yuppie grocery stores and cool restaurants.  I ride my pastel blue bike with a basket on the front each day to the store for food.  I don’t have a car.  I laugh and smile in my dream because my friends roll up to the street to pick me up for lunch and shopping.  I am a happy old lady, laughing with her friends.  Then…whether I’m riding the bike back from the grocery store or out to lunch with my friends I have a thought in the back of my head.  I have to get back to make sure Max is okay.  I wake up…and think

I’ll never be alone, I will always have to take care of Max.

 

So, I haven’t had these dreams in a while.  I know that I haven’t had these dreams in awhile because I am doing the right things for my son now.  I am not going to worry about the future I am going to worry about now.  I put time, energy and resources into finding the best treatment for my son.  I access what he needs, I listen to professionals advice and evaluations, and I know my son.  A friend said to me today, “I know he’s going to soar!”  I couldn’t agree more.  If her and I could get everyone that works with our sons to see what we see instead of seeing ASD, we could go to the spa!  LOL  that’s some special needs mom humor because you know how many hours we put into taking our kids to therapy and dealing with the school as well as sacrifices we make to pay for those things.  All joking aside, the world would be a brighter place if we stopped judging and starting seeing ability and special unique ability.

So, my suggestions if you are struggling with worry about what will happen to your special needs child when you can no longer care for him/her.

  • identify your child’s current areas of strength or interest
  • find the right therapy to help your child in the areas she is delayed in
  • ask questions about progress, challenges and ways to support the goals at home
  • never give up
  • close your eyes, envision your baby, smile, he is going to be everything God made him to be
  • you can’t change your situation or circumstances but you can change your attitude and outlook
  • read,read and read about other people who have done amazing things with the same disorder
  • remember that if there is a need and you can’t find it then you have a responsibility in creating it
  • we all have a part and a responsibility in changing the community. What will your part be? What will your child’s part be?

 

 

When I was having a lot of these dreams and more, I couldn’t sleep. I would read and think then I started to write.  I started in a word file, then to the blog, then to sharing the blog.  I know what my intent is, I know what my responsibility needs to be to my son, my family, and my special community.  Now, I can sleep.  Well, for now…

Don’t worry about a thing, because every little thing is gonna be alright. -Bob Marley

 

NewRuth

does the teacher complain about ..?

Does the teacher complain about your special needs child’s behavior?

Stories and advice on what to do when problems arise at school.

We have had our share of terrible stories about school and sadly everyone has a story or knows someone with a story.  My son was pretty much non-verbal in preschool.  This seemed to cause a problem because my son could not verbalize how he was feeling about school and the teacher.  We would get story after story about the things our child had done in class and the way he was behaving.

I would speak with the teacher and talk and offer suggestions; there wasn’t really a resolution.  The stories kept coming and the blame kept coming onto my non verbal child.  I was nice and that was also a rising problem.  Notice I said I was nice…now I’m all business; the business of growing a successful person inside and out of a classroom.

So, when you are getting stories home that make you question your child or their actions, go visit the classroom.  Ask the teacher one time (in writing); provide a suggestion of what you would like to see in the classroom.  For example, transition to therapy or circle time.  Explain that you are concerned about the behaviors brought up by the teacher and want to observe your child.  If the teacher does not allow you visit within a week without a great reason then you need to go directly to the principal and request to observe your child (again a written request).

I would highly recommend emailing the request to confirm so that it is in writing.  Also, do the same thing after meeting with the principal.

The most frustrating experience for me as a parent was when my nonverbal son was speaking; well, really screaming that there was a problem with the teacher and classroom.  He was running away, screaming, kicking and hitting.  He wouldn’t nap and the teacher was recording how he was trying to flee the room at almost 18 times a day.   He started to run so far that no one was catching him…all the way upstairs to the principal brought him down.  At that point I had an immediate meeting set and spoke with the principal directly about changing his teacher.

When safety became my number one concern I knew that I had to advocate for him to be in a new environment and trust that my son was telling me something was wrong.  We had his room and teacher changed the behavior completely stopped!  No negative behavior at all!

It was a very frustrating but eye widening experience to how children and parents with special needs are treated at the school and within that district.  The wrongs that occurred were never admitted or apologized for by the people that were involved. Those adults that witnessed the change from teacher to teacher were in shock with how abruptly his behavior turned around.

When problems arise you have to advocate and document what happened, with all the details.  Be sure to have an IEP meeting to record your conference notes about the occurrence.

 

We had a lengthy meeting with the principal and a formal IEP conference in great detail. All of the behaviors were discussed and a plan was put in place.  As parents we refused to allow the school to get out of changing his classroom teacher.  We knew that something serious was wrong with the environment our son was in with the classroom teacher.  I was unable to observe the class (which I later found out is a BIG no-no).  I knew that if the teacher was refusing to allow me to visit or observe via the window that my son needed to get a new teacher that could respect my requests to observe my child.   We were going to set up a behavior plan (PBIP) but abandoned the plan because the behavior was 100% eliminated. The plan was abandoned because we were granted a teacher change and with that change our son stopped running away!

*A note about PBIP (positive behavior intervention plan) is a plan to tell teachers how to deal with a student’s behavior with strategies that are successful.  On your child’s IEP there is a box on the first page that asks if the student has a behavior plan.  When checking yes that will always stay with your child.  Good thing is that everyone will know how to deal with your child and his/her behavior.  Bad thing is that some teachers/aids will assume that your child is “bad” and he/she has an expectation that they will have to deal with problem behavior.   If you have concerns about behaviors and solutions that are successful then you can check no in the behavior box and add a note.  In the note you can put what strategies give your student success. -separate blog on this in the future

 

when problems arise at school…

  1. observe the class environment and the behaviors of your child

  2. make all communication in writing

  3. request an IEP conference to revise or write a Positive Behavior Intervention Plan (PBIP)

  4. meet with the principal and follow up with an email summary

  5. stop being NICE

 

NewRuth

 

How schools fail special needs children

Part 1 of a never-ending story!

 

 

Some of the ways that schools fail special needs children: communication, training, allowing good teachers to teach, involving parents, doing the right thing, honesty, paying professionals with  special education what they are worth, testing, lack of outside time, class size, providing resources to help parents at home or where to find help in the community.  If you are a special needs parents I am sure that you could add to the list from your experiences.

School was not easy.  Our biggest problem began when what the group of professionals that conduct the evaluation at the district annex building tell you is not how it actually works!  We felt lied too, confused and frustrated.   We were trying too hard to help our child function daily at home and school.  We were not on the same page with school.

Our biggest problem was communication and getting an understanding of the program we had placed our son within.  The processes and procedures that were explained when our IEP was initially created was not anything like how school actually worked!

My biggest piece of advice was that I didn’t schedule a conference with the teachers and team at the school before my son started.  When you decide to use the public program and have a meeting with the assessment team you should also have to have a team meeting at the school prior to your child’s start date.  This helps to create a common ground between teachers and parents.  I would also request that an administrator be present.  If you ever have a concern with a teacher you will have to speak with the administrator to find a solution.  Teachers are getting a new student at almost half way point of the school year that is very young and delayed.  It took a long time for us to all be working for Max together.

I also recommend requesting the same teacher if possible.  So, the blended 3,4,5 program is half ESE and half general population.  If you child starts at age 3 then I would at the end of the school year request that the child stay in the same environment with the same staff.  Once you have a system that works for communication you don’t want to alter or change it.

Our communication problem was and is compounded by a nonverbal child.  My child will probably NEVER come home and tell me how his day was at school with details and a story line.  My son cannot tell me about how he feels or what he thinks regarding how the class, teacher or student is interacting with him.  Unfortunately, we believe that our nonverbal child and other children like him become easy targets for neglect or abuse.

Because of negative experiences within school, we are heavily involved with events, communication, and therapy.  As a parent, I cannot trust openly or freely.  I must protect and communicate for my child.  He has to be brave and resilient to go to school everyday and we have to keep our guard up looking and listening for potential problems.  The moment we think there could be a problem we contact the teacher or principal.

When it comes to all the ways schools fail special needs children, we as parents have to be the best advocate for our child.  We have to tell teachers and staff members when they or the district are failing or coming up short on our child’s needs.  If you can’t be at the school, email and call regularly and take hours from work for at least two conferences a year.  We have to hold the school district responsible for early intervention and education of special needs children.  We must demand access to services medically necessary for our children and fight for our child’s right to a free appropriate public education.

NewRuth

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