Tag Archives: education

Beginning Our Special Education Journey

Braxton has been enrolled in Early Childhood Intervention (ECI) services since he was discharged from NICU.  ECI has helped us to coordinate therapy and necessary interventions for Braxton.  Unfortunately, ECI only works with children until the age of 3.  Once a child turns 3, their local school district takes over and serves children through their Preschool Program for Children with Disabilities (PPCD) program.  I had no idea a 3 year old could be enrolled in public school!

As you can imagine, this new chapter in our journey has left us with a lot of learning to do and many questions.  For the first time in a couple years, I don’t know what to expect.  It’s actually a little frightening.  But, as usual, we are learning and adapting and Braxton is showing us the way. The transition in to school is different for every person, for every district, for every school. Here is just a little bit about our journey so far.

Transition Meeting

Braxton and Dad at our Transition Meeting

Braxton and Dad at our Transition Meeting

Back in March with met with the Special Education coordinator for our district and our ECI case manager for our “Transition Meeting.”  The Transition meeting is usually scheduled about 3-4 months before your child’s 3rd birthday.  At this meeting, we were able to discuss the process of transitioning from ECI into the PPCD system.  The coordinator explained the processes for the district and explained all of the different Special Education programs our district offers.  There are programs for children who only need a help with Speech, programs for Deaf/Hard of hearing children, programs for children with multiple disabilities, and a few others.  She wasn’t able to really tell us what placement Braxton would have until he had his initial evaluation. We were able to ask questions about the process and find out a little bit more about our next steps.  A lot of our questions could not fully be answered until after Braxton’s evaluations. The transition meeting was only to describe the process. They also sent me home with packets to fill out about Braxton’s skills and needs to bring to our parent interview.

 

Parent Interview & Child Observation

At the end of April, we went back to the Special Education Office in our District for Braxton’s evaluations.  Evaluations must take place within 30-days of the transition meeting.  The evaluation can look different for everyone, but it is usually a series of play based assessments and parent interviews.  Evaluators will “test” your child by playing with them and engaging them in activities to see where their skills are in each area. They will also speak with parents to get a better understanding of the child’s skills and needs.  For our evaluation, the team asked me to be the play facilitator.

Our team included the Special Education Coordinator, Licensed School Psychologist, Physical Therapist, Occupational Therapist, Speech Therapist, Assistive Technology Specialist, Auditory Impairment Specialist, Visual Impairment Specialist, and Orientation & Mobility Specialist.   I played with Braxton while each member of our team watched and took notes about how Braxton played, what skills he had, how he interacted with me, how he reacted to the new environment and new toys.

For us, the entire session was videotaped so the evaluators could go back and watch for things they might have missed.  As Braxton and I played, the team asked questions about Braxton’s medical history, current therapy programs and goals, and upcoming medical visits.  They asked to show them certain tasks to see if Braxton could complete them.  Things like manipulating a pop-up toy; pushing a button, flipping a switch, turning a knob, sliding a button to make a toy pop up and pushing it down to do it all over again.  These tasks show Braxton’s fine motor skills and are important in an educational setting.  We did things to show Braxton’s gross motor skills by having him crawl and walk and move around the room.  I set up Braxton’s iPad to show them how he is able to use it to make choices.  Braxton, much like any child being asked to do things, decided not to cooperate for some tasks. For instance, he refused to show them he could walk on his own.  He didn’t even want to walk holding our hand.  Thankfully, I had videos on my phone of him doing these things and was able to show them to the evaluators.  For children who do not do well in unfamiliar environments (and those who are stubborn 2-yr olds!), video evidence is excellent in helping the team see all of the things your child can do.  It helps with the planning and setting of goals.  The team then convened to meet and discuss their preliminary thoughts about placement, support, and additional information they needed privately.  They came back to discuss some of their observations, concerns and additional questions.  A few of the evaluators requested that we come back for a secondary evaluation so that they could test a few specific things they did not see in our play based assessment.    I was also given a few assessments to take home that delved further in to Braxton’s social and emotional state for evaluation.

Secondary Evaluations

The Visual Impairment Specialist, Orientation & Mobility Specialist, and Occupational Therapist each asked for us to return for a secondary evaluation.  Two weeks later, we returned at their request.  The Vision Teacher wanted to see more of Braxton’s visual tracking abilities and what his functional vision looked like.  Sitting in a classroom, Braxton would need visual support due to his eye abnormality and the Vision Specialist wanted to get a better idea of exactly what he would need.  The O&M specialist wanted to see if there were any concerns about moving in different environments and safety issues due to his vision impairment.  Sometimes kids with visual impairments have O&M issues such as stopping when tile meets carpet thinking the two surfaces are uneven, phantom steps when climbing stairs, and difficulty stabilizing gait on uneven surfaces (such as rock playground, backyard, etc). The Occupational Therapist wanted to see more of Braxton’s fine motor skills like his ability to turn pages in a book, use of a pincer grasp, use of selective pointing, and other skills we have been working on.  This evaluation was much shorter and everyone got what they needed.

Admission, Review and Dismissal (ARD) Meeting

So, the rest of the country calls this an Individualized Education Program (IEP) Meeting, but Texas calls it an Admission, Review and Dismissal (ARD) Meeting.  They do this because at this meeting, you are either admitting a student, reviewing a service plan, or dismissing a student from services.  The ARD must be scheduled before the child’s 3rd birthday. Since Braxton’s birthday is in the summer, his entire process had to start a little bit early so that it would all be completed before the end of the school year.  For students with birthdays in the middle of the year, they can actually start the day after their 3rd birthday, so right in the middle of the school year!

For Braxton’s ARD, only part of the evaluation team was present.  We had the Licensed School Psychologist/Early Childhood Specialist, Speech Therapist, Vision Impairment Specialist, Auditory Impairment Specialist, Orientation & Mobility Specialist, and our ECI coordinator.  ECI is usually present to make sure the transition is completed and so they can close out the file with ECI.  Each team member presented the results of their evaluations and gave their recommendations. I had a chance to ask questions about the reports and the recommendations being made. We discussed the therapies being recommended, how they would be implemented and the frequency with which they would be offered.  We also discussed Braxton’s official placement in a class and school.  Finally, we went over the goals each team member had in mind.

Overall, the meeting went well.  I had a few questions about the report which was provided to me the day before the meeting.  Last night, I went through the report with a highlighter and wrote down several questions about the recommendations, goals, and my concerns.  The team listened carefully to my concerns and answered all of my questions.  Initially, they recommended that Braxton be in the morning session, but I requested Braxton be in the afternoon class so that we could have his private therapies in the morning before school.  Afternoon spots are always a little bit harder to come by, so I wanted to accommodate their schedule as well.  I’m glad everyone was receptive to my questions and was pleased with the outcomes.

Recommendations/Placement/Plan

So, what did we decide and how did it all turn out? Well, we are going to enroll Braxton in school for the 2014-2015 school year.  I am sad to pull him out of his daycare, but I think this can be a successful program for him.

The ARD Committee recommended their PALS class that is offered at the same school Braxton’s sister attends.  The PALS class is intended for students who need help with pre-school academics, language, and social skills.  For our school district, this class is only 3 hours each day and Braxton will attend in the afternoon from 11 am to 2pm.

Braxton was recommended for all therapies offered in school.  He will have school based Physical Therapy and Occupational Therapy.  School therapy differs from private therapy in that the goal of school therapy is to help the child be successful and promote learning.  The school PT and OT will come in and work with the class as a group and help the teacher with seating, placement, equipment and incorporating goals in to the class curriculum.  They will only be working with Braxton 60 -75 minutes per 9-weeks.  I was told these are minimums and that the school therapists typically spent much more time than this in the classroom.  The school PT goal was that Braxton would be walking with an assistive device 75% on his own by this time next year.  This is the only goal that I disagreed with.  Unfortunately, the PT was not there, but my concern was put in writing and we will reconvene to address it.  I told the team that by this time next year, I wanted Braxton walking completely on his own.  The PT had recommended an assistive device for long distances such as walking to the lunch room, library, outside, etc, and while I can understand the need, I don’t want to encourage the use of a walker when Braxton is so close to walking independently.

Braxton also qualified for Speech on a more intensive basis. Speech will provided at 60 minutes each week, so he will have speech support almost daily.  His speech therapist will also work with the Assistive Technology specialist to implement a communication device system at school.  They are aware of what we have been using at home and so far have been supportive of continuing to use that system.

He will continue with Vision and Hearing therapy on a consult basis only.  This means the AI and VI teachers will come in to the class to ensure the teacher has the tools she needs to help Braxton learn in class.  The VI teacher recommended that Braxton use a visual schedule, picture cards, and use of a black background to help with visually complex items.  I also asked about the use of an FM system with Braxton’s hearing aids.  An FM system allows a receiver to be attached to Braxton’s hearing aids and the teacher would wear a microphone.  This would make it as though the teacher is speaking directly to Braxton and he would hear her the same way we hear music in headphones.  This is typically used in later grades, but I think it would be helpful for Braxton because he does get easily distracted and needs voices to be in short range to pay attention to them.  The team said they would trial an FM system, but wanted to see how he performed without one first.

The whole team agreed that “Total Communication” is best for Braxton.  Total Communication is the use of many different methods of communication to work with Braxton.  So, we will be using sign language, picture cards, AAC, voice, and gestures. This will help promote language and encourages the use of many systems so Braxton can decide which is best for him to communicate with his teachers.

It has been a long, arduous process, but I am, so far, pleased with the outcome and look forward to the fall session. We will be meeting again before school starts because we are waiting on a couple physician reports from our summer follow-ups and will need to take those reports in to consideration before school starts.  And to think, this is only the BEGINNING of our Special Education Journey.

1 Comment

Filed under Family, Kids and Family, Life, Special Needs Child

The Face of Welfare

Picture

And what if the family you saw was mine?

Here lately, I’ve seen a lot of e-cards and posts flying around about how welfare recipients are basically the scum of the Earth and just looking for a handout.  What if I told you that wasn’t true? I’m not trying to be political here, just trying to offer a different view; a reality that I know all too well.  In fact, I don’t feel like I side with one party over another…I listen to the issues, do my own research, and find the candidate who most closely aligns with that be they red, blue, purple, green, whatever.  I don’t blindly follow a party based on ideals that aren’t fully in practice anymore.  That being said, I have a serious issue with the flagrant ignorance running rampant throughout our society.  By no means am I an expert, and I’m not claiming to be, I simply want to offer our story for you to think about the next time someone tells you that everyone on welfare is worthless.

When I was growing up, I didn’t have many luxuries.  Almost everything we had was second hand, off brand, and never enough. BOTH of my parents worked hard trying to support us.  I don’t think there was ever a time that my parents didn’t work to try and provide for our family.  My dad was a truck driver and also played in a band, and my mom has had so many jobs trying to help make ends meet while my dad chased his dreams.  Despite the struggles, we never went without our basic necessities because our parents worked hard to provide at least that for myself and my 5 siblings.  We had food stamps and medicaid for as long as I could remember.  We often had “Blue Santa” or the Salvation Army bring us Christmas gifts because my parents simply could not afford everything we wanted.  Even then, welfare acceptance was stigmatized and I was embarrassed to have it, but I’m thankful that we did.  My parents worked as hard as they could and it wasn’t enough.  I’m thankful everyday to them for doing all they could for us.  That’s the story for most people who are on welfare.  This sensationalized idea that EVERYONE on welfare has gold teeth, tattoos, an iPhone, and brand name purse sitting at home collecting your hard earned taxes is completely ridiculous! Yes, there are some people out there who abuse the system, but it’s not as many as you think.  Several families are struggling to make ends meet and need that extra assistance to better themselves.  Not everyone wants a handout for the rest of their life.

Fast forward just a few years ago, I was a single mom raising my child and trying to finish college so I could get a better job and afford things for my daughter that I didn’t have when I was a kid.  I had to suck up my pride and walk in to that medicaid office. She was on medicaid and we received food stamps because there just wasn’t enough money to eat sometimes.  I can’t tell you how many times I went without food so my child could eat.  I had 2-3 jobs trying to finish school and trying to afford childcare because I didn’t want to simply sit at home collecting a check.  I worked my butt off and paid taxes just like everyone else, why should I feel ashamed to ask for some of that money back in the form of welfare assistance? Yes, perhaps I should have thought about that before I had a child, maybe I was irresponsible, I should have had a savings in place, but whatever, you can’t send a kid back once they’re here, you have to step up and be a parent.  You do whatever it takes to provide, and that’s what I did.  I’ve never touched a drug in my life. I don’t smoke.  I rarely drink.  I don’t spend my money on all the things people claim.  Every cent I had went to rent, bills, and my kid.  I probably, no definitely, had the same clothes for several years before I bought myself anything.  My child was always clothed before me.  I tried. I’m still trying.

Now, here we are in 2013, and I’m surely better off than I ever have been, but still receive some form of assistance.  I have a good job and so does Joseph. In a perfect world, we wouldn’t need assistance, but in 2011 our lives were forever changed.  We didn’t ask to have a medically complex child, hell, we didn’t even have the slightest clue that we would, but here he is. He didn’t ask to be born into these circumstances, but for whatever reason, he was.  As his parents, we will do everything in our power to care for him and get him the treatment that he needs.   We work, we’re drug tested, we’re paying taxes, and we’re getting medicaid for our kids. I have an iPhone (guess what? it was free), occasionally I get my hair and nails done ($60 every 2-3 months is hardly anything to for you to huff at), occasionally we have a night out (usually it’s for a show that Joseph is doing that he is being PAID for so we can have extra money and for the really rare occasion that we go out for fun, why aren’t we allowed that privilege? Spend one day in my life and tell me a night out every 3 months isn’t justified).  If these things annoy you because we are receiving medicaid YOUR taxes paid for, guess what? Our taxes did too.

Joseph has insurance for Braxton through his work and had a savings before Braxton was born.  Braxton had a 3 week NICU stay. Do you know how expensive that is? Last year, in 2012, we had over $200,000 in medical bills.  I don’t care how good your job is, co-pays and deductibles for $200,000 worth of bills adds up, and it adds up quick! The savings that was in place was used much faster than we thought. So much for staying ahead and being prepared. And now? Pffft, there is no savings.  The money is used before it is even received.  Braxton’s formula was $8 per bottle.  He was using 4 bottles per day.  $32/day x 30 days in a month…that’s almost $1,000 a month just so our kid could eat.  Guess what? Private insurance does NOT cover that cost.  Sure, get health insurance, have a good job and you won’t have so many problems is easy to say, but in practice, that’s just not how it works.  If we didn’t have medicaid, I don’t know how I’d feed my kid.   We have 13 different specialists and 6 different therapists that Braxton sees regularly.  Private health insurance doesn’t fully cover the cost for all of those visits.  Medicaid has to pick up that balance.  Braxton requires several medical supplies on a monthly basis that we simply couldn’t afford without medicaid.  We aren’t the only ones with this story.  I know several families who have children who vary in disability and some are far worse than Braxton.  In some, one parent is FORCED to quit working simply because they HAVE to care for their child.  Try living in a one income household in today’s world…it doesn’t work.  Unless you are born from money, an athlete, or Hollywood star, there is no way you could afford it.  There are countless people on assistance because they NEED it, but they are stigmatized because you all refuse to see that reality.  All you see is the few who abuse the system and then make gross generalizations and spread them as truth, when they couldn’t be further from it.  Why should we be stigmatized? Why should I be ashamed to admit that I have medicaid? I’m not proud of it, but I sure am thankful.  I work just as hard as everyone complaining about paying taxes and I even pay taxes so why not take advantage of the service I’m paying for anyway.  Joseph paid over $24,000 in taxes last year.  That’s more than some people make.  Don’t tell me we should be shamed for having medicaid…us and so many others are NOT sitting at home collecting a check, selling/doing drugs, living a ghetto fabulous life…we are merely trying to help our family survive and we are contributing citizens who deserve access to the assistance that probably prevents us from living on the street.

This crass stereotype has to stop somewhere, hopefully with you.  I’m sure there are some dishonest people that are ruining it for everyone else, but think about our family the next time you trash talk EVERYONE who receives assistance.   It hurts to see so many of my own friends perpetuating this hatred and public shaming. Adamantly insinuating that anyone on welfare is the scum of the Earth.  I’m sure we’ll receive some “OH, I wasn’t talking about you” “But you guys are different” responses, but know that you are talking about us and we aren’t different than many of the people you trash, and try not to be so cynical, and understand that public assistance is going to people who truly deserve it. And just because people might have *some* nice things and still receive assistance, understand that they may have earned those things before their circumstances were different.  An iPhone is no longer a status symbol for being wealthy….they’re free now.  Having your hair and nails done is not irresponsible…maybe I want to appear that I’m not falling apart on the inside and looking nice makes me feel better about myself, is there really some unwritten rule that you HAVE to look like trash if you’re receiving assistance?   Name brand clothes even aren’t good indicators of abusing the system…Ross sells Polo for $20, may be last season, but all you see is the brand and automatically assume the worst.  Check your own perspective and think about what you are spreading before you click that ‘Like’ button or share that “hilarious” e-card demanding a photo of the “ghetto family” you are supporting with your taxes…probably not so funny if you opened that envelope and saw our picture on the inside, huh?

2 Comments

Filed under Family, Kids and Family, Life, Special Needs Child