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 

 

Bigger Life Teaching Moments

So…. I have to tell you about the conversation about politics Steve and I got into this morning in the car. it started when he started calling the presidential candidate DT names, I think it was something like… he’s a stupid asshole who makes fun of people.  WOW… Umm…. Lets talk about this buddy!

It gave us a chance to have a discussion about how being kind to people is important even if they do not see things the same way we do, or would like them to. BIGGER LIFE TEACHING MOMENT, I kept telling myself while breathing deep cleansing breaths.

During the conversation, it twisted and turned as it often does with someone on the spectrum and we got onto the topic about race… I said to Steve… you DO know that there are people out there who do not like other people simply because they are black, right? His answer: No mommy, that was a LONG time ago. That’s over.

God Bless him… but yeah NO BUD, that’s still happening today.

Then I told him… there are people who absolutely will NOT vote for Hillary simply because she is a WOMAN.

MOM, now you are just LYING.

Then I said… there are police officers shooting black people,  there are black people shooting police officers, there are terrorists from other countries killing Americans and there are American’s hurting people here and in other countries just because they can’t see life from the other’s perspective.

WHOOOOOAAAAA mom… you just gotta stop. JUST STOP MOM. JUST STOP!

**mind**blown**  

Then I reminded him just before he got out of the car… just remember bug, KINDNESS COSTS NOTHING… be kind to everyone including those who disagree with you. Kindness costs nothing. I will say these three words until I am blue in the face… KINDNESS…. COSTS… NOTHING!

Now, I sit… and wonder…….. how long before I get an email from a teacher about the lessons HE taught everyone at school today.

Just now, I checked the behavior tracking app….  it is 2:34 and he has 100% at school today.

I am PUSHY

Yesterday a break down happened at Steve’s daycare. Well, was it REALLY yesterday or has it been going on non-stop since he was 6 years old and I just found the time and the strength, knowledge and vocabulary to discuss it? 

We have worked very hard with Steve over the years. Pushing him to do things he didn’t want to do. Pushing him to do things he didn’t think he would like to do. Pushing him out of his comfort zone… time and time again. Everything from trying to use a cup instead of a bottle to playing soccer among his peers. You name it, we’ve tried it. 

IT IS NOT ALWAYS RAINBOWS AND UNICORNS PEOPLE. 

But we try. 

You see, we try these things to prepare Steve for the real world. Like it or not, I will not always be here for him. I can’t tell the future so as I do with my neurotypical child, I prepare him the best I can to be the best that HE can be. Do I know what that looks like? No. Do I know what occupation he will be attempting? No. Do I care? NO!  So… I push. 

I AM PUSHY.

So… clearly you say, there must be a point to this. Yes. I have pushed my kid to be inclusive. To NOT stay in the shadows. To not play alone under the bleachers by my feet but to play in the park where all the other kids are. To get out there and run on the soccer field with his peers, even if he isn’t always in the exact right position all the time. To be a PART of society. To find that there is something out there bigger than just ourselves. Join in, and most importantly, do not be afraid to try new things. Sometimes it works out (the California Screaming Roller Coaster at California Adventure park in California)  and some times it may not (taking a bite of calamari – I get it bud… I think its nasty too). 

So yesterday while in daycare, the daycare woman said to Steve, “look, sometimes when people see other people struggling they like to kick them harder. It a bummer, so just come in with a smile on your face and just go off to be alone if you need to, but never let them see you upset,” I LOST IT. 

I’m sorry, I said… did you just tell him to exclude himself from the rest of the daycare? How about you instead talk to the rest of your class, how about you talk to them about not making fun of people who are different than them. How about you talk to them about INCLUSIVENESS instead of expecting my son to just “deal” with being excluded. How about you teach them that KINDNESS COSTS NOTHING but being rude to a classmate because he may have more sensitivities than you is wrong.  Yes Steve, we can go HOME now. 

8 months… we have 8 months left with this provider before Steve moves up to middle school (which in and of itself is already about to kill me). 

INCLUSIVENESS!

Please teach inclusiveness – whether it be the color of your skin, your neurobiology, your love for one kind of person for another, your hair color, or height for example. 

 

KINDNESS COSTS NOTHING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

~me

Why Not Tell Them?

I’ve been meaning to write this for a while now but you know… LIFE got in the way. I have come across a lot of different ways parents who have children on the spectrum operate. Some love ABA, some hate it. Some believe gluten free and other dietary restrictions are necessary, others do not. Some believe in and swear by medication others refuse to even use the word. 

One thing though I have never come across in all my book  reading, blog scouring, face-booking, tweeting etc is a parent who “doesn’t discuss the autism.”  Well, until now. 

When I say she doesn’t discuss the autism, I mean just that…. they (the parents) have simply chosen not to discuss autism with their son. Their son, he is verbal. He is 10 and a Gate student. In the “not discussing it” with their son this also means they don’t discuss it among adults either for weary that their boy may overhear something. 

I have to say, this encounter was pretty strange for me. 

My son has known her son for a very long time. Her son, when his ABA therapist was over, would invite my son to come and play together during their pre-school years for social skills work. The boys ended up at different elementary schools and summer camps. Simply by chance the boys ended up at the same camp this time.  Its been 4 years since we’ve seen them. 

When I ran into this familiar person, I asked Steve, “Do you remember him?” Steve replied, “not really.” I wasn’t surprised, I’ve noticed that very few details have stayed in Steve’s eye from when he was a small child. Thinking that Steve would like to know he had someone around that was like him, I said, “Well, he has autism like you. You two were very good friends at one point. Maybe you two can be good friends now” and his mother gasped. “Ohhhhh she says to Steve, but we don’t talk about that okay. So don’t use that word around him.” All Steve asked next was, “Does he have ADHD too, mom?” So I replied softly, “No, he doesn’t just autism but they don’t talk about that ok. Can you not bring that up? “Ok Mom, I won’t” he said. 

So Steve trotted off to his buddy whom he doesn’t remember and the mom and I head out. Once out of earshot of the boys I HAD to ask the question. “What do you mean you don’t talk about it?” I am thinking in my head… not talk about it… I can’t stop talking about it. I talk to anyone and everyone that will listen and even some that don’t about it. I live and breathe this every day. This THING, autism, has invaded our home, our everything… how can you NOT TALK ABOUT IT….. I stayed quiet to listen. 

She replied matter of factly, “Oh that’s easy, we decided we were not going to discuss it for fear of him using it as a crutch or excuse. That’s all.” Uh oh… here goes my mind again: that’s ALL… THAT’S ALL… that’s not all. How can that be ALL. That is no where NEAR ALL. What about how he feels inside? What about… and WHAT ABOUT………. and so I said oh, okay and walked away then got in my car. What else could I do, I was about to blow. 

Steve has over the past year been coming to me more and more asking me why he is different. What is happening? Why can’t he  do what his brain tells him to do? So it clearly was time for us to sit down and have this conversation. 

I am adopted and it was never kept a secret from me. I have never kept the word autism a secret from my son. Its not a bad word. Its a matter of fact. 

At first I thought it was my misunderstanding. That I had suddenly missed another HUGE issue in the autism community and I didn’t want to start a fight. When I got back to my office I sat down and really started to think about this. Have I not read enough? Is this really a thing? I know it is in the adopted community… but autism community? There are people who just will not tell their child what is happening to them inside their bodies?

I don’t know… so I am writing this bewildered still, even after a couple of weeks. I just don’t think I understand the concept of not telling your child about something happening inside of them. 

So…. am I seriously sheltered, nieve and misinformed? Is this a “thing?”  If you do know of  why this would be a thing, can you please enlighten me? Clearly I need it, because I really do not understand. 

 

Help me… 

~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

The Books

I am always taken aback with people (including family) who always say “But Steve doesn’t LOOK autistic.” Or worse… “Steve looks so normal.”

Well to all of you people who have said this to me over the past nine and half years of his lie……. where the hell were you the night before we left for our vacation?

Let me paint the picture for you. 

Steve, having just been given a new dose of meds, has been terrific. Compliance is at a much higher rate. His appetite is down but that always happens for a minute on new meds. He just seems so much happier. He was even looking forward to vacation for spring break. 

He had been primed for days that we were going to have to be up at 5AM the morning we leave. That in and of itself would be a challenging experience. He seemed fine with it. Packed everything throughout the day when asked even pausing his video game to get the next thing he needed for his suitcase. Then here were all… all packed, all done, all ready for bed. Its 9pm. Steve lays in bed, says good night and I’m breathing.. wow… maybe this is going to be ok. 

 

Yeah….. I shoulda known better than to say that. 

Steve after laying there for an hour then comes RUNNING out of his room. “MOM” “MOM” “MOM” “MOM”… “Yes, Steve.” He literally tears around the room… he takes every book off the first set of shelves then the next set of shelves. “Steve, wait!, what are you doing????” – “Mom we can’t leave without my books!” 

Ok… so while he is tearing around and making a MESS out of the living room I just spent an hour picking up so we would come home to a nice put together home…. I have to stop and breath and figure out HOW am I going to get out of having to take literally 150-200 books on vacation with us. 

 

So, here we are now at 9:45pm and Steve is trying to stuff ALL the books into one small bookbag. I finally slow him down and get him to stop. Holding him in my lap arms tight around him, I break the trans. 

“Steve… do you need ALL these books in the next two days?”

“How do I know?”

“Steve, could we please pick 5 books only? We are only going to be gone 3 days and we will be very busy.” 

“Five isn’t enough, I need more.”

Steve then spends another 30 minutes separating and organizing his books. Plants Vs Zombies in this pile, Captain Underpants in that pile, and so it goes. He simply can’t move forward without sense of it all. 

I finally agree that he can take Plants and Captain books. He agrees that those are ok. While that sounds simple enough… being autistic it doesn’t end there. He then must put each set in numerical order to be sure he has them all. Each and every one must be in perfect order and facing the correct direction. OK. Its now 10:30pm and Im freaking out… OMG I have to wake him up at 5. This is soooo not going to go well. 

Enough is enough… “Steve, yes, You can take ALL  the books in those TWO sets only as long as they all fit in this ONE book bag.”

He agrees… He packed, they fit (Thank you God) and then he tried to wear the backpack and it pulled him over. He starts laughing, now in THE BEST mood ever…. “Ha, who knew books were so heavy.”

He took off his backpack and ran back to bed and fell straight to sleep. 

For the record…. he read 3 of the 18 books that made it into the backpack. 

 

We won’t talk on this post about what 5am looked like. 

 

~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