A letter to Jace’s mom

Dear Jace’s mom (or dad),

Hi, I’m Max’s mom, I wanted to write to you to introduce myself and thank you for your son’s friendship.

I know that we don’t know each other and our paths don’t cross but for the first time in my son’s life he is talking about a friend at home.You see he just started talking about one year ago.

He never told or talked about school in anyway. He was terribly mistreated and talked about by his peers and teachers at other schools right in front of him. Those people told him he didn’t belong here and asked regularly, what’s wrong with him. We left that school but because of this experience, I had put in my head that he may not have real friends or even be able to share his day with me.

Then recently this year, he began talking about other kids from school. I thought that Jace was just another kid in his school. Well, I was wrong. You see my son has autism and he attends the ABA Academy. His school is within your son’s school. My son receives special one on one education through his school with opportunities for play alongside typical students who attend the private school, the class your son is in. My son tells me all about the games he gets to play with Jace. The best part is how much he laughs and smiles while telling me over and over how they played.

My hope is that someday soon, my son will be ready to join your son back in a traditional or inclusive classroom. Until then I thank you for raising a child that welcomes the challenges my son has and makes friends with him. I can’t thank you enough for the joy you have helped give my son through play and friendship with Jace.

I hope Jace will be returning for next school year and that Max can play with him again. You’ve given me hope that my son can and will create friendships with his peers. Your son has also made my son feel like he belongs, he belongs at school and with his peers not just the other students with autism. In a world full of bullies, I wanted to share the caring and goodness that I see and hear about from your school and son.

Thank you for raising a child who sees the best in others and not their challenges or disabilities.

With love and kindness,

Max’s mom

McKay Matrix

Using the McKay scholarship is one of the best ways to access private education for children with special needs.  The McKay is a great option because it is based on a students IEP created by the school and is not reliant on a medical diagnosis.  As parents getting enough money from McKay is key to the success of using an alternative school.  In our situation, just McKay money would not cover the cost of full tuition.  Once you get the McKay, you are locked in and can use it year after year.  You only lose the money if you reenter public school or choose a different scholarship option.

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So, the key question most parents want to know: how much money will my student get?

This answer is not available and I have found that most people won’t even tell you how much they are getting and what their matrix score was.  It seems strange to me that the public cannot find out the dollar amount.  Most providers are able to get information regarding scores and typical payouts and can be helpful if you are able to have open conversation.

I have been working on book edits for my story Ruthfulness; during one of those edits I found a copy of the McKay Matrix!  So, here it is.  I’m posting it in hopes that it can help provide a reference point to advocate for your child and this scholarship.  If you are not aware, the new Florida governor DeSantis has passed legislation to end the wait list on the Gardiner Scholarship.  A medical diagnosis is needed for this scholarship but it guarantees a minimum of $10,000.  If you have a medical diagnosis, it is worth the application time to have another option if not satisfied with your McKay award amount.

The matrix has five domains: curriculum and learning environment, social/emotional behavior, independent functioning, health care, and communication.  Each domain gets a score from 1 to 5.  Then each of the domains is added to give you the domain ratings.  You check the special considerations for additional points and use the cost factor scale to find your matrix score (251-255). NOTE: I file I found does not have a date of creation or expire. There could be changes to the matrix that I am unaware of and this information is for you to use to further your research regarding advocating for your child.

Use the link below to get the matrix scales for domains A and B.  Use your IEP to review your curriculum and learning environment and social/emotional behavior accommodations.  Look for similar wording in your IEP compared to the matrix.  When not sure if you are the higher or lower number, go with the lower number.

Mckay matrix_AB

The next two domains are C and D on independent functioning and health care.  In comparison to domain A and B, these two domains could be harder for children with autism to score.  There is such a spectrum of needs and beliefs.  For example, the health care domain references medicine or medication in increasing severity through the levels.  Also, if a parent does not document or include on the IEP the need for special doctors and the frequency of communication with doctors that would lower your domain level.  Download the mckay matrix_CD

The final domain is E on communication.  I would assume if your child was nonverbal you would score a 5 on this domain.  However, all the grading or marking/making of the matrix is not very open or available.  I have requested to see my sons matrix and have been rejected every time.  Download the Mckay matrix E. 

In the Mckay matrix E file you will find the special considerations section. This is where you can pick up more points.  Then take your points from each section to get your total of ratings and determine your cost factor.  This cost factor is the number (251-255) used to determine how much money you will get for your special needs child.

Side note: 504 students can also get a cost factor and score for McKay.  I wasn’t always sure on this in the past but it is a document you can use to help your student; especially if you have struggled to get your student evaluated for an IEP within the school.

Visit the Florida Department of Education for lots more reading on the McKay Scholarship.  Hopefully, as parents we can read, learn and continue to advocate for a better education and therapy network for our children.   We have found an excellent environment for our son with autism.  My hope is that everyone have an equal opportunity to find that same place for their child and if the McKay scholarship can help that’s great.

 

 

 

***Disclaimer
This information is provided with the knowledge that the author does not offer any legal or medical advice. In the case of a need for any such expertise, consult with the appropriate professional. Works do not contain all information available on a certain subject. Reasonable efforts have been made to make all works as accurate as possible. However, there may be errors. Therefore, this information should serve only as a general guide and not as the ultimate source of subject information.  All information is intended only to educate and entertain. The author shall have no liability or responsibility to any person or entity regarding any loss or damage incurred, or alleged to have incurred, directly or indirectly, by the information.

Autism Awareness or Celebrate Autism?

15542210621422488821682936684968.jpgApril 2nd is autism awareness day all over the world. Just this week I read an amazing article written in 2017 and published on Huffpost about how we should bring awareness by honoring our own spectrum children instead of celebrating just the success cases.

huffpost: Let’s start honoring people with autism by stopping the celebration of autism

Everything the author writes in this article is real and true all the way down to the poo. It made me think a lot about our journey and about others. I know more families with “low” performing spectrum kids than I do with the savant child “rain man”.  It’s great to celebrate the stories of success, the kid that grows into this gifted and talented star.  However, most of us will have to support our growing children into and through adulthood.  They will need a place to live, help finding work, and continued therapy and support.

There is always hope when we have young children on the spectrum. With autism awareness I think we need to bring the blue light to shine on access.  If we can get young children with spectrum behaviors whether diagnosed with autism yet or not better access to therapy and services then we can have hope for more and or greater stories of success and hope.  The earlier the intervention the higher the changes we have to see improvement of symptoms or deficits.  For us, we have seen improvements in language and speech this year that are far above what we struggled to get in years past with private and public school therapy.  We have finally found access to the right speech therapy and a great therapist.  My son is being taught in the way he learns best!  What a concept, right?!

We also have seen amazing growth with his behaviors.  Not only is he being taught the way he learns but he has access to one on one ABA therapy to address his behavior needs.  His therapist challenges him but loves him too.  When you finally find the right learning environment with access to the right teachers, it’s amazing what type of results can be achieved.

Something happened just this weekend that has never happened before and I know it is because we have access to a great program and therapists.

Long story short: a stranger asked my son a question in public, he answered!

I didn’t have to repeat the question to him, translate his response or answer for him.  Nor did I have to feel like I needed to tell the stranger that he had autism to explain why he didn’t answer or why they couldn’t understand his words.  That was a huge success for him and a teaching moment for me.  I didn’t have to say anything, I could just wait for him to handle it.

So, this year for autism awareness let’s bring awareness to our children who

  1. struggle to get a proper education setting
  2. have all the signs of autism but cannot get an appointment to be diagnosed
  3. are on wait lists for access to ABA therapy, speech therapy or occupational/physical therapy
  4. have to deal with billing issues with Medicaid
  5. struggle to find jobs or careers as young adults

 

This month, next month and into the future gaining autism awareness that brings more access to support, education and therapy is key to so many children having a chance at a brighter future.  Shine your blue light on better access for all people with autism!

 

Apply for scholarships

Its scholarship season! Are you looking at sending a preschool student to kindergarten next year or unhappy at your current school? Now is the time to apply for scholarships for next school year.

The two largest scholarships for special needs students are McKay and Gardiner.

Two income based scholarships are Florida Tax Credit scholarship through Step Up for Students and the AAA scholarship through AAA scholarship fund at aaascholarship.org.

Two other new scholarships through the Step Up for Students webpage are the bullying and reading scholarships.

Review your options and apply today!

Tips for success:

Review necessary documents needed for each scholarship

Find, scan and create a file folder on your computer for all the paperwork

Watch the application deadline, some scholarships are first come approval or greatest financial need

If the application portal is slow or not working, try again at non peak times. I often do mine in the middle of the night or very early morning.

Find a school that accepts your child and scholarship.

Need suggestions or found a scholarship not mentioned? Comment to share with readers.

She’s here!

Those of you that follow our family journey, we are happy to announce that our family grew by one very beautiful baby girl!

Vanessa Faye was born Thursday, January 17, 2019 at 1:43 pm and weighted 7 lbs and 12 oz.

portrait vanessaPhoto credit:  Pierce Brunson Photography

 

We’ve never been one for family names but used my mother in laws middle name for our girl.   Glenda Brunson will always be love and remembered for a very long time.  It has been a year since she has left us, way sooner than we all wanted.  She was an incredible grandma!  She was very much a part of my story and journey with autism.  She was really an autism grandma and touched so many hearts with her firm but gently love.  Our third child will grow up not having grandma Glenda’s love but we hope that our beautiful butterfly will not be without part of her.   I hope that Vanessa is always a reminder of the love our family shares with each other and that together we can all keep Glenda’s warmth in our hearts.

My older daughter, tells us she sees grandma and that grandma is a butterfly.  The meaning of Vanessa….butterfly.

Send your love to all today, in remembrance of her-Glenda Brunson

 

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Scholarships for School

When deciding on a school for a typical child parents have a multitude of options.  Many parents use public schools but also use magnet and charter programs with in the public system.  Still traditional parents use private schools and home school options.  When trying to make decisions for my special needs child regarding school and education, I completely feel like I need a financial adviser!

How do families decide which scholarship is best for their child with special needs?  I swear we need a full worksheet/flow chart with which options are the best for each individual case.   I am personally torn as to whether we should switch to Gardiner Scholarship from McKay.   The Gardiner is $10,000 our current McKay is less than that.  But what happens if I give up the McKay?  Can I get it back?  How?  If I go to Gardiner am I gambling with the school that we currently have? Would I be limiting my options or broadening my options to educate my child?

Then thinking about life after school, how long or to what age can we continue to receive money?  Thinking long-term, we are asking questions about where my son will live and where he will work, how will we continue to meet his medical needs.  A financial adviser can definitely help me save money to prepare for those expenses later in life but who can help guide me financially now with the best scholarship option for my children?

Let’s go over the options:

McKay  Scholarship

Gardiner Scholarship

Florida Tax credit scholarship (FTC)

 

*These options cannot be combined, choose one.

The Mckay basics: have IEP, request a matrix score, submit an application, wait for award determination, find a school, dollar amounts vary by need/accommodations written in IEP

The Gardiner basics: must have specific medical diagnosis, no IEP is needed, award amount is at least $10,000, limited scholarships granted, money flexible for school, therapy and other needs, find a school that accepts scholarship

FTC basics: completely income related and based on family size, amount of scholarship is percentage like a 100% scholarship, 80%, 66% and 50%.  The total amount also varies based on grade level.   They also give priority scholarships to renewal families and highest income need first.  Check the income requirements on their website.

 

Look at your options and find what will work best with your needs and start applying now.  Watch your Mckay intent!  DON’T file intent, YET!  Wait until your final IEP meeting has been conducted to try to increase your award amount.  Think about using an advocate to help you if you don’t have one now.  Every dollar matters in our world of access to education and therapy; choose wisely.

Comment with any questions for advise and suggestions!

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You’re not alone

My message to you for 2019.

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As 2019 brings several huge events and major achievements, I want to focus on what I want others to know and learn from Ruthfulness this year.  This year, my story and journey of early intervention and autism will be published.  I’ve had to reread and relive the pain of those years.  The tears and heartache are still there and when I review the editors notes and contribute to the editing process, tears run down my face.   There was a huge healing that came in releasing my story to print that I do fully believe has allowed me to grow far beyond what I could ever imagine.   However, with all those emotions and pain I still want to continue and share with others so that they know you’re not alone.

I want others to feel empowered to continue their journey to advocate for their child as they work through the early intervention system or stages of autism.   It may feel lonely sometimes but there is a community of parents that have been through a similar experiences or unfortunately worse. When you find your fellow parents, you will finally feel like someone understands.  With part of my focus, I also want to encourage other moms and dads like myself that survived the darkest parts of our journey’s so far to reach out to support, comfort, reassure, laugh or cry with another parent that is struggling.  When I hear of stories when a child with autism leaves our world too soon, I always think about the mom and dad of that child.  My heart hurts for them.  I think about how maybe they felt alone and couldn’t get the support and help they needed to work through their journey.   I want to spread a message of love and hope to as many parents as possible with children who are going through early intervention or autism.

The second part of my mission,  you’re not alone,  includes advocating for our child and all the children that will come after.   I never want another family to have the same experience I had.  I want for what I experiences and learned to change the way a person or a school may handle a child with developmental delays, nonverbal communication, autism or any other exceptionality.   I really believe that if you see or hear something that is not right, it’s for a reason.  You, me, or we have to speak on the child’s behalf.  If it wasn’t for those brave people at my son’s school, I may not have known everything that was happening to him.  If it feels wrong, or you wouldn’t want that to happen to your child….you have to speak up.  Even if you are wrong, speak up and apologize later.  We need a community of strong advocates that will not allow any of our children to go without, be treated as less or made into the bad kid of the class just because they are different.

Please help me in 2019, in a world that’s become more mean and harsh,  read and share my information with your friends.  We are now living in a world where one in six children age three to seventeen have a developmental delay (from the CDC website).  Just by sharing information you could be helping someone in your community that you don’t even know needs help.   Next, be aware of just how common autism has become now and that no two children or adults with autism are the same.  Be understanding and kind to those that you meet, even though they look “normal” you don’t know what living in their world is really like.   Last, consider advocating for the needs of our children with delays.  Be part of the community, be part of the change and help me this 2019 spread the message that you’re not alone.

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My best wishes for all autism families in 2019!

Happy New Year!

Sending positive thoughts to each of you for 2019. As January has arrived it is time to renew or apply for very important paperwork. In Florida, Florida kid care or healthy kids insurance needs to be renewed. If you so not have any government insurance for your child with autism I would make the time to apply today. Even I’d you believe that you earn too much money to qualify, fill out the application again.

Next, the IEP. Get those meetings scheduled to update your IEP for the second half of the school year. If you are Developmental Delay on your IEP then or is more urgent to move forward with the revaluation because at 6 or kindergarten that code will be dropped.

Last, are you going to stay in public school? Not sure, yet? Start your research on private, charter or other public schools with autism units. Then begin looking into McKay and Gardiner. If you do not have a medical diagnosis yet but have an IEP look at McKay and Step Up for Students. Scholarship applications begin to open in January and February. (These are Florida programs, if out of the state, visit the department of education website for your state for alternative education programs and scholarships for students who have special needs).

Let’s make 2019 a year of advocating, educating and accessing only the best for our children.

Did you move your elf on the shelf?

only a few more nights!

for me….

elf on the shelf

 

I never moved the elf in the house!  I never had an elf in the house!

Why I don’t elf on the shelf….

  1.  I have enough commitments–  this time of year is one of my favorites because of how it is traditionally centered around family and kids.  The commitments and obligations of fall festivals, birthday parties, class parties, work parties, Santa, parades, winter festivals, snow festivals, and more on top of the regular commitments we make daily, weekly and monthly for our families is joyful but exhausting.  I want to take December and cancel commitments; wouldn’t that be a great gift?!
  2. I don’t want to teach anymore new concepts repetitively– for my child with autism I would have to repetitively teach, show, and read the story to try to get my child to understand the concept.  (that’s what my commitment would need to be.) Could you imagine the day that my son with autism touches the elf and my typically developing daughter cries?!  If he was really into the elf than it could be fun but it could also be a Christmas disaster.
  3. I don’t want to explain something abstract to my autism kid because of the possible backfires. My son is now seven; last year was the first real year that he understood Santa.  Then after Christmas for months when he would make bad choices and be in trouble he would bring up Santa.  Like Santa’s not going to come, then cry and cry.   When things are direct, simply and straight forward my son understands much faster.  When you talk about abstract ideas, make-believe and things that don’t really exist then its more difficult.  Example, to teach him how to pretend play in the housekeeping at preschool; we taught him how to use the microwave at home.  Then he knew how to pretend to use a microwave!   Now, transfer that into the elf on the shelf….HA
  4. I just can’t compete– I have no desire to compete over what fun, foolish or naughty acts that an elf can get into.   I really enjoy all the posts and pins of funny elf on the shelf acts but I have no desire to participate in the process.  I understand that when your kid really gets into something fun that parents get so creative in having fun with it.  I love that about the elf but I’ll stay on the sidelines.
  5. I just want my kids to be good because it’s the right thing to do– with years of meltdowns and negative behaviors with the hours of ABA therapy to work on those behaviors, I just want my kids to be good all year because it’s what I expect.   We have to teach and re-teach behaviors, emotions and reactions.  I don’t want to add a new concept of someone is watching you to decide if you have been good or bad.  Where is this elf in June?  I need an elf to report to Santa that you acted up in the middle of June.   I really don’t want my children to believe that they should only do right because an elf is going to go tell Santa.  I want my children to understand integrity and have character that makes them good people for the sake of being from “good people”.  It’s not about who’s watching and when; it’s about doing what’s right without thinking who’s watching me now.

 

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*thanks to target for the elf on the shelf image

 

I have a child with autism, if I have another baby…

will my baby have autism?

  • If you have more than one child, do you have more than one child with autism?
  • What’s the likelihood that I will have a second child with autism, if my first child has autism?
  • How likely is it to have a second child with autism?
  • Is it selfish to not have more children because I have a child with autism?
  • Can autism run in a family?

So, many similar questions and posts by parents about family.  About how difficult raising a child with autism has been for them.  Their personal decisions about having more children and the outcomes of those decisions.  Families of just one child, families of three and four with multiple children on the spectrum.  People that post that they have an autism gene.  So many options, so many decisions but in the end it’s each couples choice.

So, we are expecting number three! 

We’ve always talked about having more kids but once our son started having more and more problems at school, he needed more and more support.  My daughter came before we even knew something was really wrong and we started down our journey to autism.  Then life event after life event continued to delay our family plans.

When I went to the primary care doctor and we went over the questions regarding more children, we had an interesting conversation.  She was asking, “are you going to have more children” question.  I said that we had been discussing it and the decision wasn’t made.  She was explaining to me that because I was now 35 that I should either do it quickly or not at all.  Her concerns were that as your age increases so does the likelihood of more birth defects, special needs and other complications.  As our conversation continued, I asked questions and tried to make her clarify her concern.  She was basically saying that I wouldn’t want a child with any type of problem if I could help it.  When I told her that I already have a child with autism and I had the understanding that autism or something else could happen.   She didn’t really like that answer and responded with what if it’s not autism?  I responded with well, if I can figure out how to raise and educate a child with autism than surely I can find resources for whatever problems a future baby may bring.

Then the conversation changed!  She told me that she didn’t have her first child until 40, then she had another.  Both her kids, no abnormalities!   So, the medical world pressures women to freeze their eggs, have babies early, and do lots of additional testing when of advanced maternal  age; but they are just as likely to delay motherhood as anyone else.

 

Discussion points and questions to consider when googling questions about having more children when you already have a  child with autism:

  1. Before having your child with autism did you have a plan to have a big or bigger family?
  2. What are your biggest concerns with having another baby? why?
  3. How well are you managing life with a child with special needs?
  4. Do you have resources, finances and insurance to provide for your child with autism?
  5. How does your extended family feel about having more children?  Do they help now? Will they help with another child?
  6. Does your doctor have any information or suggestions based on your health that you should consider?
  7. Has your relationship status changed?  Did you divorce and remarry?  Is having a child with your new partner important to your relationship?
  8. Do you have any “baby fever” when around other babies or just in general?

 

There is no guarantee in life, especially with children and family.  If you want to have another baby after having a child with special needs-great!  If you decide that’s too much or just don’t want to have another baby after having a child with autism-great!  However, I do hope that just because you have a child with autism that you don’t just cross it off the list without any consideration.  Even if the time isn’t right now, give yourself and your family time to make a decision.

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