Showing posts with label special education. Show all posts
Showing posts with label special education. Show all posts

Saturday, September 1, 2018

Back to School ---- With Hope

I am usually the mom doing the happy dance when kids go back to school.  As an Autism mom, summer is sometimes really really really long.  After many years of work, finding my kids "thing", and doing our best to set the kids up for success, I was a little sad to see this summer come to an end.

Being a special needs parent and starting a new school year is incredibly stressful, the uncertainty, the new teacher, new room, new kids, new schedule.   The district I live in is incredibly negligent and irresponsible where Special Education population is concerned, the anxiety goes on all year.  You never know what is going to happen at school, and frankly the schools are no longer about education.  I haven't figured out what the hell they're doing but they are not interested in educating special needs kids, they are more like a mediocre babysitter.  So we prep, prime the kid, and hope and pray for the best.  The jury is still out on the teacher and his aide, I'll give them time to get their feet wet with the kids, if I don't see progress by back to school night, then my charming but firm side will come out.

I make a very valiant effort to start the school with giving the administration, principal, and special education departments the benefit of the doubt, and try to swallow that they "have our kids best interests at heart".  I'm going to really try this year, I'm going to try to not yell, scream, and freak out when my kid is being marginalized, forgotten, and excluded from things because their classroom is at the back of the school, not encouraging inclusion.  When they leave a kid on a playground that can't talk, I won't let them have it.   When a kid gets out of school that can't talk, I won't call them incompetent.  When a kid goes home with a bruise, scrape, or bite mark and we are told we are not entitled to an incident, or "he fell".  None of this is over dramatic imagination, this stuff happens to special education children, especially non verbal ones, EVERY SINGLE DAY all over the country.

But this year I'm not screaming at people after the fact.  But I'm going to try and plead to their common sense and decency, because the reactionary mom is just as bad as a reactionary school I am usually the mom doing the happy dance when kids go back to school.  As an Autism mom, summer is sometimes really really really long.  After many years of work, finding my kids "thing", and doing our best to set the kids up for success, I was a little sad to see this summer come to an end.

But this year I'm not screaming at people after the fact.  But I'm going to try and plead to Administrators of school districts everywhere.

Please to Special Education Teachers,  and Staff.  

These are our children.  We love them, we worship them, they are tiny humans just like the neurotypical kids.  Please protect them, follow their IEP, work with the parents to make the kid as successful as you can.  Please assume competence and capability.  This is how you do it right.  

How you don't do it right, is lie to parents, deny or withhold services or knowledge of services to a kid that clearly needs them.  Treating our kids like they don't matter and that any hurt that happens isn't an enormous deal.  And Never Never Never tell a parent their child is unteachable.

We know who is doing it right, and we love who is doing it right.  And so do our kids, and we know who isn't doing it right.

Let's do it right together, forget what the Administrators want you to do, they're really just overpaid buffoons, that couldn't walk 5 feet in a teachers shoes.  Kick their rules and their control to the curb, our kids matter too.  You can do it, the parents will stand with you if we know you have our kids backs.  We can do this, we really can - I hope.

Tuesday, August 25, 2015

Super Sensational Successful Summer

We did it!  Autism beat the summer.  We nailed it, we worked together as a family, as therapists, as community, and had a few bad moments, but no bad days. 

I am so beyond proud of my kids and how hard they work and how enormously awesome they are.  I remember summers and how I would dread and be anxiety filled about the lack of structure and fear of the unknown and how autism would kick my ass.

This summer was sensational, we had so many opportunities afforded to us.  The kids attended Extended School Year, they were able to participate in Special Camp for Special Kids, Surfers Healing, ASkate, and many many Angel baseball games, Disneyland trips, Knotts Berry Farm and many many many hours in the pool.

We have conquered the major behaviors, we have given Franklin a means to communicate, we have found the things that make the boys happy.  We have found their joy.  And no matter what the joy is, we run with it, and do our best to keep their lives as busy and engaged as possible.

I did not have a lot of sleep, because as I had to keep the boys busy, we were busy.  The husband and I are opening a business, and I 3 half marathons in the next 5 months going on that I need to train for, so go go go has been the mantra here.

Back in the spring my husband purchased a Harley Davidson, and we have found a fun and passion that we haven't had in a long time.  While I don't ride myself, I'm just a passenger, I love to look at the world from the back of the bike and just be close to my man. We have changed "date night" to date days, and take long rides through beautiful parts of our area, and have met some really fascinating people who share our love for Harley Davidson and riding.  So while I took some coercing to get the bike, I'm so glad we did.

With 4 days left of our summer vacation, I'm a little emotional that I have a 1st grader, I feel like I just took that pregnancy test!  I am more confident in my ability as a special needs parent, and have become a good advocate for my kids.  I have resources and wonderful team of parents around me that help me and I'm able to help. 

This has been just an amazing summer, and I'm sorry to see it end, but so ready for the kids to be back in school.  I hope you all have had just as blessed of a time as we have.





Tuesday, October 7, 2014

Unspeakable Grit

Being the mom of a non-verbal child is a test of true grit.  I know several of us and our life takes on so many additional roles, including clairvoyant for our child, because most of the time we are trying to just figure out what they are communicating.

My oldest son has severe autism, is non verbal, and has been working with a communication device to help him get his voice and it has been a slow road but his frustration has been cut down a lot.

However, when I'm not with him, he is still in the big bad world alone with very minimal communication skills.  So I trust everyday that what I do and who he is with is aware of that huge safety factor.  Sometimes I feel confident in the people around him at school, and sometimes I'm stunned because it doesn't seem like they have ever heard of autism before.

Behavior is Language
Over the last several months his eloping (running away) has kicked up a notch and 2 times in the last week, one I witnessed myself, and one was told to me by a school aide, that he got away from his group and out of the building.  Thankfully, he was not able to get very far and was caught by adults both times.  We also have a documented case of him eloping out of his classroom and out of the building of school with 3 adults running and chasing him.  The part about all of this is none of the adults chasing him can ask him "why" did you run, "what" do you need, "what" can we help you with.  He can not communicate that, and that is where the grit comes in.  I have to buckle down now and make sure that my dude is under impeccable care.  Because I can't think of what would happen if he got away, it is unspeakable and unthinkable, and brings a flow of tears to my face that I can barely control.

So I have to go now, and ask, and beg, for my childs safety that he get a personal 1 on 1 aide to be with him all the time.  What can happen is unspeakable.  His school was built in the era, of love, peace, and Bobby Sherman and there is no fence and the campus is completely open, which was probably a very poor choice of locations when the district was choosing the location for the Special Education Children.  So I have to prepare myself for what I expect to be a battle, because really it is always about money, and someone is going to pull the I don't have enough money to provide him a full time aide.  Well those EXCUSES are no longer acceptable for me. The school districts have plenty of money, they just have to choose not to waste and abuse the funds they have, because that is the problem (and a whole completely different blog post). 

So begging for my child's safety is what is going to happen this week, and if we don't get what is going to keep him safe and a productive non disruptive student to his classmates, I will have to find a special education advocate, and fight the school and the district and ultimately win.  Because the unspeakable game here is that the districts want to give you as little as possible, hoping that you won't fight, and putting so many hoops in front of you that they hope you give up.  I do believe I have a slam dunk case, and will take it as far as it needs to go.  He's my kid there is no limit to the lengths that I will go to help him, I will turn over every rock and move mountains to make sure we get him where and what he needs to be a successful student.


Wednesday, February 5, 2014

My apology to my son



Dear Franklin,

I am so sorry and have been full of doubt and guilt for – well doubt of my mothering abilities probably since your birth and guilt since the second some professional told me you had autism.  I let some people that work with you convince me that you were not worthy of the help you need, I let their words cloud my judgment where you were concerned, and I let precious time be wasted. 

You see, there is no instruction manual for typical children, and there is absolutely no manual to maneuver your way through the labyrinth of life after you are labeled  “special needs”.   There are so called “professionals” that really have a passion for children like you and want to help, but are corn hold because of a horrible defective system.  There are so called professionals that are out for a money grab, and don’t really care if they help you or not, they just want to get their check.  There are professionals that pull at the heartstrings of families that so desperately want help, with no guarantees, and very large expenses.  I’ve pretty much lost faith in the professionals – it has been the mommies, and the daddies, that have lifted us up, and helped us and guided the families in how to survive the jungle of special education.  And for those families we will never be able to express our true gratitude, except to pay it forward to the newly diagnosed families.

Mommy took the professionals at their word that they had your best interests at heart.  I believed them when they said you were getting an appropriate amount of services for your level of cognition.  (WHICH WAS A LIE)
 I believed them, when they said this might be as good as you get. (WHICH IS NOT TRUE)
 I believed them when they said, you may want to consider just making him comfortable this might be all there is for him. (WHICH IS UNACCEPTABLE)
 I believed them, when they said you were not teachable because your behavior was too challenging.  (YOU ARE NOT THE PROBLEM, THE PROFESSIONALS ARE THE PROBLEM)
 I believed them when they tried to make me doubt you and what is inside, and lost sight of what an amazing little boy you are.

So my pledge to you baby boy, is to NEVER EVER take a professionals word with a bit of sincerity.  I will always find a way to help you.  I will never take no for an answer. I will never let anyone lessen your worth because you are different, I will never let someone work with you that does not believe in you and your abilities.  I will not let anyone work with you that do not think they are capable of offering solution to your life.  I will make sure that I always listen to my mommy gut, and will not let a bunch of initials behind someone’s name determine that they know you better than me, after a 20 minute assessment. I will take this ProLoQuo 2 Go, and let it give you the voice you so desperately deserve.  I want nothing more in my life to hear your thoughts and wants, and likes and dislikes.  I can't wait for wait is about to come.  In 2 days since another mommy told me how to help you, you have amazed me (and I think yourself) with what you can do.

You are the most amazing thing I have done with my life, and I’m so sorry I let my loyalty to you, and what I thought was best for you weaken, because of the minutia that I was being fed by some stupid ignorant people with degrees.  I will never stop believing in you. I will go to the ends of the earth to search out help for you and I will always make sure that YOUR best interest is in my heart, not the convenience of a few.

I love you baby, and I will never stop standing strong for you.

Mommy