FDLRS and Child Find: Finding Services through the public school system

Early Steps transitions to FDLRS or Child Find.   FDLRS stands for Florida Diagnostic & Learning Resources System.  FDLRS is a state-wide agency that provides various resources for children with developmental delays or special needs under the Federal law Individuals with Disabilities Act (IDEA).  If you visit the home site you can find the county or region that supports where you live.  For example, the Gulfcoast center serves Pasco, Hernando and Pinellas Counties.   Hillsborough has it’s own center.  Visit the website to find where and who services your county.   Early Steps is your first early screening and detection agency.  Once your child turns three then the program changes to Child Find and the services and availability of those services changes.  This is my review  about finding these services and express my experiences working with and receiving services for my child.

 

I had previously used Early  Steps with Pinellas County to have my son evaluated for a speech delay.  He was about 2 years old. When he was assessed he was below the average but because he wasn’t 2 standard deviations below they couldn’t offer us services.  I thought at that time that we were doing the right things and that our son was just delayed.  As the months continued and the problems increased we had to wait until he was bad enough and far enough behind to qualify for help.  After working with the private school staff, I had more information to take with me back to Early Steps.

Early Steps ends at age 3 and that’s when FDLRS takes over.  So, we went back to Early Steps and explained what the problems were now.  An assessment was scheduled for October.  Max turned 3 in November.  Max qualified for help, we entered Early Steps and scheduled the meeting to discuss a plan for his education and services.   The program was able to enter us and exit us into the school based services quickly.  We had a meeting to discuss putting Max in a blended ESE Pre-k classroom.  There he would have an Individualized Education Plan (IEP) and receive speech therapy.

At our meeting, I remember the words of spectrum and autism like behavior mentioned but it was subtle.  I felt that there was definitely a sensory processing disorder.  During the months of Max still being 2 and not qualifying for help, I read and researched what I saw and could describe.  When I read the SPD information…Max had 9 out of 10 of the items on the list!   So, I kept reading and reading; then asked questions to other professionals and even parents.   Max entered the public school in December.

Once Max entered into the school program, we realized it was very different than what we experienced with private school and even with the district employees that qualified us for FDLRS.   My recommendation is to immediately schedule a conference upon entering a blended pre-K class and having an IEP.  You need to know what the day will look like and how the services are going to be received.  You also need to demand a communication system be put in place immediately.  The change in school will be difficult for a child with autism or spectrum behaviors. You also have to teach the school how to work with you as a parent and make a decision to be an advocate for your child.

My experiences are from living in Pinellas County.  I have friends that live in Hillsborough and have been on the waiting list for at least 6 months with the district Child Find team telling her that it will still be another 3 months before her child diagnosed with autism will have a blended pre-k placement.  In the research and reading that I have done, Hillsborough seems to have better options of school and receiving services for speech and Occupational therapy.     The information regarding the next school year 2017-2018 will be that Hillsborough will have speech and OT services available for student placements at both public and private schools.  In addition, at public schools teachers will be receiving training in Applied Behavior Analysis (ABA).

Good Luck in your journey with finding and using resources through Child Find and FDLRS.

NewRuth

 

Q: Why were you late today? A: um…sugar

A lot has been weighing on my mind lately.   Today, on my out for work Max was going into his compulsive breakfast behavior.  There are a few behaviors that occur regularly that have become obsessive.  As most parents and especially parents of children on the spectrum, small simple things can take hours to get through and can ruin the entire day!  As I was driving to work I continued to think about how the morning went with the sugar?  I don’t ask, I just keep moving ahead and am hopeful that our great loving grandma was able to do the same this morning.  Thank goodness for her and her patient soul.

So, these repetitive, obsessive, and compulsive behaviors may look like a “terrible two tantrum” but they are defiantly so much more.  In today’s example, Max has a “ritual” when making toast.  Toast in our home is a frozen cinnamon toast Eggo waffle.  Max will make it himself with some help.  The toast is cooked and then spread butter (or in our house Earth Balance Butter because we are diary free) with a cinnamon sugar over top.

sugar

So…the sugar!  While the toast in the toaster, Max will get the container of sugar to make more topping.  However, when he makes the topping he has to add enough white sugar to cover the existing cinnamon sugar. Then he gets the cinnamon and adds the cinnamon to the sugar, puts the lid on and shakes.  So, yesterday the container was too full to add another layer; however, Max was unable to abandon his ritual and push forward.  He instead had to have  a time out and then in return he abandoned his toast all together and opted for another food. This morning, without prompt he was making his own breakfast! Great right?!  Yup, until he got to the sugar.  Sugar is going all over the counter and the floor and as grandma and I tell and suggest that the container is full and we don’t need to make anymore; he presses on.  So, today…I left him making a mess with sugar.  Already running late on a Monday morning a delicate balance in place.  I don’t want to set him off because our daughter is still sleeping, it’s a school day and I’m going to work and leaving him with grandma.  I decided to let him continue and let grandma decide how she wanted to move forward with the behavior.    She gets the broom, I walk to the car.

This post is for everyone not just moms and dads with children on the spectrum.  Just remember that a smile, laugh or kind word to a parent when they are running late is the best choice.  To the outside world, my child looks like any other child.  But, he has days that he struggles.  Days that he has obsessive and compulsive behavior or just an overstimulating environment.  Tomorrow will be better and someday I will laugh at the sugar!

NewRuth

PARC first to help

PARC was the first agency to help my son.  I tried to get help first from Early Steps. We went through the evaluation but my son did not score low enough to start receiving services.  When I sent my son to a private school, they suggested the PARC Family Focus Program.  The Family Focus Program had a representative that come to the school to work with children one on one.  So, it would allow my son to have an hour of therapy every week.

I am recommending PARC as a place to receive services and an agency that is dedicated to working with special needs children.  I have had good quality service from the agency and would highly recommend reading, researching, and visiting the parts of the organization that could help your family.   PARC is a Tampa Bay Area organization that may not have service in your area.

The Family Focus Program is for children ages 0-6 and is funded by the Juvenile Welfare Board.   The therapy is once a week, provided in home or in school.  The child has to be referred for evaluation.  The teacher can suggest that a child could benefit in one or more of the six categories (cognitive, language, fine motor, gross motor, social emotional, and self-help).  You can have your pediatrician refer your child due to possible developmental delay or behavior challenges if you are not at a school or agency that will refer you.

In my experience, my child did not qualify at age 2 with Early Steps for early intervention but did qualify with the Family Focus Program.  So, if you are looking for help and cannot get your child to qualify, please look into services available by other agency.

The evaluation process is simple and takes just one hour for the therapist to complete.  You as the parent will get a carbon copy of all the forms completed regarding the evaluation and weekly sessions if your child qualifies.  There is a lot of paperwork to fill out; just do it!   Once the child is receiving services, you as the parent will have a direct contact to a professional early intervention specialist.  This was excellent for me when my son was 2.  I was trying so hard to find him help and kept running into dead ends.  Finally, when he started to see “Chris” and weekly I had detailed reports about what my child was and was not able to do I had the key words and evidence to keep pursuing additional help.

Some of the activities I read from the reports included, color recognition, shapes, lacing breads, identify cognitive concepts, communication and many general development skills.  The therapists was always helpful in leaving notes about what activities my child loved and enjoyed and activities that were challenging that day.  She always noted when the child had success and wrote that they celebrated together.

After several months of working with my son the therapist from PARC talked to me about other resources as well as concerns regarding his development.  I explained that I tried to go through Early Steps to receive services but that my son did not qualify.  She explained that the testing and evaluation process changes at age 3 and it become the FDLRS program.  That program can then provide early intervention preschool in a blended model within the schools.  Obviously, at this time we did not know that my son had autism but knew that he was not speaking and was struggling with developmental educational milestones.

If it wasn’t for the private preschool and the services provided by the PARC Family Focus Program, I would not have been able to get additional early intervention detection, screenings and services for my son.

 

Move forward two years, I found myself back at PARC.  We were not eligible for the Family Focus Program for my son anymore because we had moved on to using the FDLRS program with Pinellas County.  With the FDLRS we had taken a position in a blended preschool program that followed the school year calendar.  It was summer.  The previous year finding a summer program for a non-verbal 3 year old that with diagnosed ASD is not possible.  There are so few camps for special needs children age 5 and under.  Now, my son was 4 and was diagnosed with ASD.  I had a plan that he would get part time help with an ABA therapist in the morning but we couldn’t get the paperwork and insurance authorization back fast enough for that to happen over summer.  So, I found PARC autism summer camp.

The summer camp was what we needed and it worked.  They had activities, structure, small ratios, qualified teachers, field trips and swimming lessons.  (swimming lessons did not goes as planned; however, it was a good experience with me attending) I would and will send my son to the camp again next year without hesitation.  The employees are well trained and understanding of people with special needs.  Many of the teachers shared that they either work in an ASD classroom during the school year or that they have a child with autism themselves.  I was so revealed when we found the Autism Summer Camp.  The cost of the camp was also reasonable at $80 for the week from 8 am to 2:30 pm.  Food was also provided with the weekly camp fee.

 

I only have experience with these two programs; and am providing a review of the services I received for my child.  PARC has many other services available; like respite care!  So, if you need help, support, therapy, or a starting point for a child with developmental delays or behavior challenges please consider contacting PARC.

 

NewRuth

 

So you think your child may have autism?

Most parents notice signs or differences in their child around age 2.  The timeline to noticing differences or having concerns about your child’s development and getting a diagnosis can  take up to 3 years. So, parents have years of trying to find therapists, work with schools and determine what works for their child. It can be a tiring, frustrating and come to Jesus period of time.  For me, I found out who I was and what I would tolerate as a parent.  I was never a “fighter” about issues or confrontations.  I always wanted to make peace and make compromises.  Maybe I was really just very passive aggressive about life.  Well, that had to change in order to care for my son.  I spend hours reading and researching about therapies that help children with autism and sensory processing disorder.  I didn’t read a lot of books about the subjects but instead read articles and reached out to other parents and professionals for their direction and experience.  This was really because I didn’t have the time to read book after book.  However, I did read 10 Things Every Child with Autism Wishes You Knew by Ellen Notbohm.  When I read this book as part of a book study my son had yet to be diagnosed.  What I realized was that in at least  7 of the 10 chapters I had a viewpoint that I could use to explain what the chapter was talking about!  I realized that maybe what I thought was SPD (sensory processing disorder) was in fact autism.

So, here are some resources that can be used to evaluate possible symptoms of autism from the Centers of Disease Control and Prevention website.

CDC

Possible “Red Flags”

A person with ASD might:

  • Not respond to their name by 12 months of age
  • Not point at objects to show interest (point at an airplane flying over) by 14 months
  • Not play “pretend” games (pretend to “feed” a doll) by 18 months
  • Avoid eye contact and want to be alone
  • Have trouble understanding other people’s feelings or talking about their own feelings
  • Have delayed speech and language skills
  • Repeat words or phrases over and over (echolalia)
  • Give unrelated answers to questions
  • Get upset by minor changes
  • Have obsessive interests
  • Flap their hands, rock their body, or spin in circles
  • Have unusual reactions to the way things sound, smell, taste, look, or feel

 

 

These are very general and not necessarily age specific to a child that would be 2 years old. So, when reading this you may not check off the entire list.  But look at these other symptoms listed by the CDC.

Other Symptoms

Some people with ASD have other symptoms. These might include:

  • Hyperactivity (very active)
  • Impulsivity (acting without thinking)
  • Short attention span
  • Aggression
  • Causing self injury
  • Temper tantrums
  • Unusual eating and sleeping habits
  • Unusual mood or emotional reactions
  • Lack of fear or more fear than expected
  • Unusual reactions to the way things sound, smell, taste, look, or feel

 

 

NOW, this may start to speak to you about your son.  If you are saying “Well, he’s just all boy!”  you may want to look at this list and say, “yes, yes, sometimes, yes, yes, he does that, not really, etc… When you start to see that your child has many possible other symptoms then start going category by category and checking those descriptions.  Now, remember that there are different levels of ASD (1,2,3).  So, your child can be talking and have good communication but struggle with social skills or has unusual behaviors.

Autism Speaks also has an excellent graphic about other medical conditions relating or intertwined with autism.  Sometimes, there is another disorder or disease that is more severe that is the primary concern and diagnosis.  Autism Speaks Symptoms

associated_conditions_diagram

Autism Speaks is a great resource for early intervention because they explain what autism can look like in babies and young toddlers.  It is worded and described differently from the CDC.  Definitely worth reading both and seeing what is more helpful to you.

Once you think your child is on the spectrum and you need to start getting help, go first to your pediatrician. A great pediatrician will help you navigate referrals and possibly give professional references to a developmental pediatrician, early intervention coalition in your county or state for free screenings, speech therapist, occupational therapist and ABA therapist. Get the ball rolling because the wait lists are very long and the waiting game will begin.

NewRuth

 

When I noticed my son was different

noticed son different

At around the age of 2, I noticed my son  wasn’t doing the same things as my friends sons were doing.  He didn’t have the language, play skills or eye contact that the other children had.  He seemed to be in his own world, he  just wanted to watch and play with himself.  He was a happy baby!  Then, my daughter was born and his behaviors became more than a terrible two-year old.  I wouldn’t know what he wanted and he would start screaming and kicking for what appeared to be no reason.  He would be inconsolable and no one knew how to help him.  He would drool through 3 shirts a day because he was putting the collar of his shirt in his mouth.  Then he would only eat particular foods and preferred sauce on his foods.   He would not allow me to brush his teeth!  He wasn’t able to follow basic directions, he would fall down often, then there was the climbing and jumping nonstop, and he would have the hardest time going to sleep. OH, and I forgot the running, running, and running.  That kid could run!

At age 2,  I put my son in a private school,  I started getting more help from the teacher. She was so kind but concerned that he wasn’t speaking and other developmental concerns.  The director was awesome and was able to get my son a therapist once a week for an hour from PARC family focus program.

This program is one of the best.  She visited my son once a week and worked on the skills he was behind in and left detailed notes about what was easy and hard for him.  I still have those notes!

Once we started working with PARC I started to see that I had experienced professional that could guide me and my family on the road to getting help and assistance.  Finally, someone else supported the idea that I had regarding getting my son help that something indeed was “wrong”.

NewRuth

life as a mother to a son with autism

Dear life,

I didn’t see this one coming!  But, I laugh and smile.  You see life, you have a way of making things come full circle.  Back in the good `ole days, before kids and husbands; I would spend A LOT of time with some very cool women that are great friends.  They would have me laughing and crying about their work.  You see they were working all day with kids with autism!  I was clueless and sometimes shocked at the things they would share.  I never knew that during all those nights of wine, women and porch time that I was being prepared for life as a mother to a son with autism.

Thank you life for giving me amazing friends!  Oh, how I miss those nights that we shared together and I so wish I could have them back regularly. Almost a decade has come and passed since those days and now I have a new understanding and some really good stories to share and laugh at too!

I’m not sad for my son, I don’t wonder about his happiness or success, and there is nothing to change about him.  You don’t have to be “sorry” for me or for him.  We are good and happy.  However, I do have sadness, wonder and things to change.

I’m sad that other people (teachers, family, friends, and strangers) are so uninformed about what autism is.  I cringe when I hear: “oh, I didn’t know your son had autism. You can’t even tell.”  or when a teacher says he was defiant today .  So, my non verbal four-year old was telling you no, he didn’t want to do something?  No, my non verbal autistic son was probably trying to tell you something else that he needed but you don’t know how to listen.

I wonder when my son’s ASD label is going to mean access to the care and therapy he needs to learn functional skills.  My son is entitled to a free public education in the least restrictive environment but my school district doesn’t offer ABA therapy.  I wonder when the school will stop putting kids in centers based on a label/diagnosis and start providing the clinically researched treatment for kids with autism.  I wonder when I will be able to apply and have my son on a Medicaid plan to supplement my commercial insurance for all the therapy he receives.

I wish I could change people’s hearts.  I wish that more people had a heart that allowed for acceptance of people for their uniqueness.  That we honored what makes a person special not different.  That we smile and give words of encouragement to others.  So many times I wish I had a blue card or a card with a puzzle piece when I am in public.  I just want to leave a card or raise a card for autism.  It’s okay people, I got it, just letting you know it’s a meltdown not a tantrum.  We are working on it, good days and bad days.  Or just a card for the stranger that asks my son questions over and over.  What’s your name? How old are you?  He’s just shy…bye!

 

Thank you life for giving me my son and the journey that comes with raising him,

NewRuth

 

A journey of education, access, advocating and love! MAXimize your knowledge of autism through stories, tips and action.

Welcome!  The blog has been changed, re-organized, and re-focused.  I encourage you to also visit ruthbrunson.wordpress.com for academic coaching and tutoring related to all kids but especially to those on the spectrum.

NewRuth

 

Fatigue Fog

dory

Is that a real thing?   Like I’m so fatigued mentally that it’s unclear what I’m doing, supposed to be doing, and who I’m doing it for.  Brain fog is when you just forget things; mom brain is after having kids, dementia is for old people.  What do we call it when you are working, working to support your husband, caring for a special needs child, raising a second child, teaching other kids, and managing a house?  I probably forgot something on that list because I can’t remember more than 5 things at a time.  It’s not really stress…. or is it?!

Who wants to tell me what you think it is?  sleep deprived?  I have been more sleep deprived when I had a newborn.  I have lots to accomplish daily, things get done, some get added and others are not important to complete.  I procrastinate, run late, and forget things I don’t write down regularly.  Yikes!  I’m a mess.

I got to do better and get the fog to out o’here!

Let this mentally tired momma know what you think.

NewRuth

Happy Cry

happy cry

 

I had two stressful days….well, I’ve had a stressful four months. Today, when I opened my son’s folder from school there was a note from the teacher.  There is normally a note.  However, today was different.  “Max had a great day. He was able to express his needs/wants with us.”    And then I start to cry.

I was happy crying because IT’S WORKING!!!!

All the sleepless night, the hours of driving, the hours of research, the hours of therapy, the hundreds…no thousands of dollars, the repetition at home, the school conferences,We Rock the Spectrum, the ESE friends, the Facebook support groups, the teachers, the aids, the doctors, the endless assessments, the principal, my MIL’s help, the books, and the friends are helping Max grow and manage his world.

I am so proud of him!  He is getting so big and starting to put all the pieces together.  Some days are GREAT and other days we need a lot of interventions and support.

I also just found out that we are going to get an ABA therapist for summer.  Taking it to the next level.  Max is such a cool kid and we love his spirit.  We just want to help him manage school and the outside world so he can keep being a cool kid.

Now, I need the budget to keep up with this growth!

 

NewRuth

Simple things

we moved!

access key

So, happy to have some simple things.   Yesterday, when my 2-year-old said OH NO! I POOPED!  as she is already diaper free.   “Where did you poop?”  She takes me and shows me her diaper on the floor and says. “OH NO! I POOOOPED on the bed!  It’s the simple things like having access to a washing machine and dryer at my house.   I was able to toss it in and get it clean before bedtime.  That wouldn’t have happened at the apartment.

Access is really a key word in so many ways.  When we can access tools, devices, places, services, or things more than others we have more privilege and probably wealth.  Social economic status and access to the best improve situations and quality of life.   Money can do so much for your family by giving you access to the simple things and the most desired materials and services.

Working to make more money to create more access is key to improving our lives and our family legacy.

It may start with a washing machine but where will it end?

NewRuth

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