Now this

Right when you start to breathe and think, “ok, I’ve got this!” God laughs and says “Ha! Silly Woman! You think I’m done with you?”

We are now dabbling with the FIFTH neurological diagnosis amongst the two kiddos. This time it’s Epilepsy. Absence Seizures to be exact.

Have you ever see a robot just stop. The lights are on but they just STOP? Yeah. That’s what it is like when you watch your child just STOP right in front of you.

I have never felt more helpless in my life. I’ve never felt more to blame in my life. I’ve never felt so less in control, so frustrated…. IN. MY. LIFE.

I know we will too get through this, I just really wish we didn’t have to.

I pray this is the path to recovery but that doesn’t mean I have any interest to stop and take in the sites. No… if it’s okay I think I’d much rather just drive as fast as I can and get through the rough patch of road.

This mama’s pedal is to the metal.

I’ll see you on the other side when I can breathe again.

~me

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Why is it so hard?

Why does it all have to be so hard? 

I am pretty frustrated at the moment. I think I’m upset because up until now, we’ve actually had it pretty easy. We have gotten what we needed for our son with some elbow grease but not needing advocates, and lawyers, and what not, you hear so many people complaining about in the Special Education community. 

I am not saying we have not had to hold our ground and not let the school district push us around, but for the most part, when we showed muscle, they backed down. 

My lil man, well he is now transitioning to middle school. He is almost done with the 5th grade and we are trying to work with his IEP team to find the right fit for him next year. This time however, we are dealing with ego’s and agenda’s that have nothing to do with our son. His current SDC teacher has been pushing the district to create a program for kids with behavior issues in the middle school (and possibly high school environment) for 3 years now. What an admirable thing in my opinion. I think there SHOULD be a program like his in the middle and high schools. Absolutely. I just don’t think my kid should be in it, and especially because it will be at that school. Yes, I said “that school.” I have heard horror stories about how the student body treats kids with special needs, and how the administration doesn’t really do anything about it. It is a culture at some schools, to treat Special Education students with lack of empathy and no respect, and thus, the fight. 

I think this program my son is in now, the one they want to start in the middle school, has done wonders for him. I also feel like it has possibly restricted him in some ways the past couple of years. However, because I can not clone my child and run him through both paths at one time to see which one is best, I have to trust my gut. 

The current program was a pilot program. My son has been in it for several years. Five to be exact. First through now 5th grade. The program has adapted and changed along the way. However, at some point we feel it has failed our son. I can’t tell you the exact moment it happened. I don’t think it happened intentionally. I surely, don’t think it happened with malicious intent. I do not blame the teacher or administration for the fact that it happened. However, I am a realist and I can not ignore the fact THAT IT HAPPENED. Somewhere along the line in this pilot program, my son missed his window to seperate himself from the group of kids. They all came into the program together, they are all giving the same guidelines, homework, and treated the same… Somehow.. his IEP turned into a GEP (GROUP education plan). ONE out of the 5 of them moved to full time mainstream only,  ONE. There was a moment when our son could have been moved, we asked that he be moved, they chose NOT to move him. We didn’t fight it, we should have fought harder. We didn’t. 

So now, here we are. 

At a point where I have never been more perplexed about what to do in my life. 

I do not know WHAT to do. Literally. I am frozen. I am frozen in fear, I am frozen in worry. I am frozen in self-doubt. I am frozen in blame, and shame. I am frozen in every single possible emotion that is available to me for I feel as though my child’s ENTIRE future is riding on this ONE decision: What program is best for Steve, at which school and at what level of engagement. 

There are times when I just want to explode. Like literally, internally com-bust, the pressure is so much. Pressure from so many sources. My kid, even though he has no clue he is doing it, pressures me into doing what is best for him since he can’t do that himself. My ex-husband, again unknowingly, puts pressure on me to do all the research and to “know everything” and inform him as to what is the best path. My ex-in-laws and the family…. I can’t even get STARTED on how much pressure they put on me.  My own family who literally has NO CLUE about what I am even going through raising my two kids with ADHD (and my son who also has autism). The pressure from the school and the IEP team who only shares PART of the information with me, then expects me to make corrections and additions. None of this even compares to the amount of pressure I put on myself. 

I just do not see why it all has to be so hard.

There is a child, who is named Steve, who has learning disabilities, several of them. Steve needs help with his education. Period. Why is it so hard to find what is best for Steve?

It all seems so simple to me, so why do we all have to make it so damned hard. Well you see now, his teacher , who is the leader of his IEP team, wants him to continue in HIS behavior program because that’s how he positioned it to the district, THESE KIDS, need this program, they are all moving on to middle school and will not survive without it. And while yes, my son DOES have some behavioral issues, they are now 90% or more concentrated in the area of academic unpreparedness (remember i mentioned ego’s and agenda’s, yeah that!). Steve no longer, rolls on the floor and can’t sit still and listen to the teacher. He does listen for the most part, at least that’s what his daily behavior report is telling me. He now has a harder time staying engaged and focused in class and getting his ideas in his head out onto paper. The “behaviors” have come to virtually none in a day, or even several weeks. So I am not seeing how a behavior program is suited for him anymore (especially when said Behavior program, is at a school that does not take seriously the treatment of its Special Education members, as I’ve been told by MULTIPLE people). 

Would this program be a better option if it were located in the ONE middle school in the district that has the BEST handle on special education I have ever seen (I’m not kidding, EVER SEEN!). Absolutely, however… isn’t there always a “however,” – that school already has a Special Education program for Autism. 

So I look into THAT program since my son also has an autism diagnosis. 

Only problem, that school wants and needs the recommendation of his IEP team for the program. The IEP team who told me, they didn’t even know a single thing about that program in the district and who are pushing their OWN new program and who basically told us that if we opt not to put our son in this new program, that his life will be completely ruined and he may even get kicked out of school because that is what has happened to some of the other kids they’ve seen. Yeah, THAT IEP team. You think THEY will make the right choices for my son? (ok I’m taking a breath now… breathing innnnnn breathing ouuuuuuuuuuut… sorry about that! I digress). 

Ohhhhhh… But wait… I thought WE were “members” of the IEP team? Do “We” not get a VOTE on this? And As his parents, shouldn’t our vote count MORE than your vote? It is just so darned frustrating. 

Why does it have to be so hard and complicated?

 

~me 

 

What Is “Appropriate”

I got into a conversation with someone yesterday over the fact that my 9yr old boy, Steve chose a giant stuffed turtle to spend his money on as his a “trinket” if you will from our vacation. 

“I am really surprised by this” this person said to me. 

This made me think. This made me realize just HOW MUCH people don’t know about kids with autism and I keep hearing things like age appropriateness. 

From my perspective, there is no such thing as AGE appropriateness. For my son, in his life, (and to be honest I think every kid in everyone’s life if you REALLY stop to think about it) what is developmentally appropriate carries far more significance. 

You see, again from MY perspective, children I have met with autism including my son, they don’t necessarily develop in ORDER. 

Childhood, the way people generally look at it, looks something like this:

A leads to B leads to C leads to D and on and on…

Children hold up their head before they roll over. They roll over before they sit up, they sit up before they stand for example.

For my son, A maybe leads to D then to T then to G and he may never EVER see C in his life 

THIS IS AUTISM

He sometimes gets stuck at a stage for a long time. Then sometimes he jumps two, three of 4 stages, then often times go back to another stage over again. 

So the fact that he felt the best reflection of his trip was a giant stuffed turtle that seemingly to you and me means nothing regarding the trip, it means something to him. He knows exactly where “George the Turtle” came from. What city we were in, what we were doing when he found him and what other adventure George then took with us for the rest of our vacation. I was even asked to “give George a bath because he’s been a lot of places, touched a lot of things, and probably has some germs on him.”

I’d say he gets it… so why the hell do YOU care that its a stuffed turtle?

 

~me

Seismic Shift

I can not tell you when it happened. Not a specific date, or time. I can only tell you that something has happened. Part of me is scared to death to even say it out loud. For YEARS… and I mean YEARS I have been working, intervening, helping, pushing, guiding, loving my son who was diagnosed on the Autism Spectrum, and who also has ADHD. 

Sometimes, believe it or not, it is very hard to tell the two things apart. I feel the two within my son work hand in hand (or in some cases, in polar opposition to one another). Some days have been tougher than others. However, most days have been tough. 

They say he is “high functioning.” I hate that term. I find that some people just need more support than others for different reasons and different things. This is no different than in the neurotypical world. Some of us need alone time than others. Some of us need cuddle time more than others. Some of us need to be touching our significant other when in their presence, and some of us don’t have to touch at all. Does that make any of US “less” functioning than the others. We are just all very neurodiverse. 

So, I don’t know when this shift happened. I am not sure I even know WHY this shift happened. All I know is, it seems as though a shift has happened (can you tell I’m still processing that this shift has happened). 

My son has decided on his own, to take control of his body, mind, spirit, learning and needs. Yes. I said that. He has articulated his needs in ways I didn’t know he was able to (especially since the beginning he couldn’t speak). He has decided that it is time to step up and “Do this thing!”. 

Here is just ONE example of what I mean by this shift:

In the past, in order to get ANY homework done, he needed someone to be sitting next to him, constantly redirecting him to sit down and do his work. Steve, sit down. Steve, do your work. Steve, read this question. Steve, common you need to read this question, then answer this question. Steve no, you can not bring your toys to the table, Steve…. and so it went. This happened all the way up until the the teachers gave up giving homework out for the last couple weeks of school last year, Third grade. 

After declaring his preparedness to learn this year, Steve was handed his first homework assignment of the year. Without the help of an aide, Steve went straight to daycare and when told it was homework time, sat right down and did his work. He didn’t complete it but made a solid effort and articulated to the daycare person, he was going to complete the rest at home. 

We got home, he sat down at the table while I was preparing dinner, he started to finish his assignment. We then ate dinner and left for his sister’s gymnastics lessons. Knowing he still had to do 20 minutes of grade level reading, pulled out his book and asked, “How long does it take to get to gymnastics?” I replied, “about 10 minutes.” He responded, “Ok, I’ll start reading now then can we sit in the car until my reading time is up? Then my homework will be done and I can start my screen time I earned.” My response…… was a wide opened mouth with no words. 

When we got home from the gymnastics lesson, after the reading was complete and the earned screen time had been used, I asked a question that I thought for SURE was going to push Steve over the edge……… but I asked it anyway. 

“Hey Steve, how about we start filling in those dates on the timeline project due Thursday now, so you have left to do tomorrow since you have soccer practice?” – I held my breath…. expecting the meltdown ANY second. 

Instead, I got a resounding, “Sure Mom, that sounds good.” We did half of the project. Now he only has to write a paragraph about what he wants to be when he grows up. Secretly, I’m thinking he’s gonna be one hell of a lawyer, but I’m sure he’s going to say video game designer or something. 

Again, I don’t know how it happened, I don’t know WHY it happened, and I am sure never going to ask how long its going to last. “Carpe Diem” to quote one of my favorite movies of all time. I am just going to seize the day with a giant smile on my face. 

#SoFreakenProudOfSteve

~me

Autism and “The Cure”

So, a friend put me in touch with one of her friends whose little guy was recently diagnosed with Autism. Great! I love sharing the information I’ve learned. Happy to help. Happy to teach. Happy to meet new people.

Only problem… more than once, ignorance has reared its ugly head on this person’s social networking page and it has given me very sour stomach issues.

Today was one of these days…. today someone said to this woman.. Hey look at this website I found while poking around the aforementioned social networking site.

I was hoping to attach the logo that offended me so,  but it was built as such that white on white can’t be seen so let me tell you what it says:

T.A.C.A

Talk About CURING Autism

I was immediately PISSED OFF.

I was immediately sick to my stomach.

I couldn’t decide if I would share the site her or not because it goes against EVERY fiber of my being – but then I figured why not talk about WHY this angers me so much.

Well for starters… There is no CURE for autism. Period. PERIOD.

My son has had INCREDIBLE strides in his ability to manage his autism and his ADHD but he is not CURED by any stretch of ANY imagination. Autism is neurological disorder. A disorder is not anything that can be cured. It is something that will live on forever and how you learn to handle the level in which the disorder effects YOU is called MANAGEMENT. It is not called a CURE.

Neuromusculatory Disorder. Could you ever, would you EVER tell a person with diseases of the peripheral nerves that cause weakness, sensory loss and pain in the extremities that they are cured if the pain wasn’t so bad, today?

A child with Aerodigestive Disorder.  This disorder is in children who have complex upper airway, pulmonary, upper gastrointestinal (GI) tract, sleep and feeding disorders. Care is coordinated across a range of pediatric specialties and subspecialties, including pulmonology, otorhinolaryngology, gastroenterology, neurology and sleep medicine. A dedicated pediatrician serves as medical home and interacts with a child’s primary care provider; nurse practitioners work closely with physicians and families to ensure coordinated care.

Disorders that require coordinated care.. can you imagine… Could you ever, would you EVER tell them they are cured if you found a way with the coordinated care to manage the situation?

OF COURSE NOT…. DUH.

People of the world.. KNOCK IT OFF… Autism can not be CURED. Shoot for many… even managing it is an incapable act.

I would LOVE to see someone in my lifetime figure out what causes it and oh I dunno…. STOP THAT….  but wanna know what…. My money is on the kid with Autism… I bet they’ll be the one to do it… I just pray I am around long enough to see it.

However… In the meantime.. there are people out there like the woman who founded T.A.C.A who by her own admission says THIS on her site – and I QUOTE –

Where is my son Jeff now? He is a teenager at a typical high school learning same curriculum as his typical peers with a great grade point average. He still has a part-time aide. He talks, makes jokes, gives out hugs, plays on the high school golf team, socializes with typical friends, and is an active member of the society with a bright future. He also happens to be the sweetest, kindest person I know and is practically always smiling. That is a far cry from his early diagnosis and the initial prognosis for his future.

TACA’s goal is to provide education, support, and information to parents to help their children diagnosed with autism be the very best they can be, with the hope of recovery.

He still has a part-time aide (coordinated care) and yet wants to give hope for RECOVERY (recovery means there was a cure, a cure means he no longer needs coordinated care, the disorder is all gone never to be heard of again).

Well my darling. Ms. Lisa Ackerman, founder or TACA…. there is no recovery…because there is no CURE. There are however, high levels of management, especially in the higher functioning autism community, and I commend both you and your son on yours. Honestly, I do. I know you’ve worked your ASSES OFF at it, to get to a life in which you have become accustomed to in your own home. To where maybe you can take a shower on your own and not have to worry about your teen-aged son walking out the door and being hit by a car on your busy street every moment of the day. KUDOS TO YOU!!! That however, is only in YOUR OWN HOME. As the saying goes, when you’ve met one kid with autism, you’ve met ONE kid with autism.

I on the other hand will not claim to have a cure because my son is doing well. I will pray for more knowledge, understanding, help and acceptance amongst the neurotypical community. For those of us with high functioning children, I can see how some may “classify” the huge strides and gains as a cure…. call it semantics, call it whatever you will. But for all the families I have met, talked to, seen, and just simply know of, for all the families whose lives will never be the way they envisioned them when finding out they were having a child, I can not stand by and not be angry for saying you have a CURE for autism.

Those are my feelings about it – and like them or not, I am entitled to them.

~me

image is pretty self explanatory

blowing steam