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 

 

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SHE ASKED

This is an open letters to the Mom who stopped and asked me about the Autism Awareness sticker on the back of my car yesterday. 

Dear Mom in need, 

I am sorry I ran out of time to talk to you more yesterday. I coulda have stayed and talked to you for hours. I hope you found your way here and see this, if not, I hope we see each other agains at daycare pick up time. If we don’t, here is what I want to say. 

Keep fighting. Don’t give up. When you least expect it someone will come out of the woodwork to help you, support you, guide you. 

Use your local Regional Center to gain knowledge through their resource center and services. They are able to diagnose. They are the “payor of last resort,” however if you have insurance and insurance says they will not pay in a letter, regional center will pay. Just know, you can never stop fighting, advocating, and speaking up (there are reasons why some insurances do not “have” to pay but that is too hard to go into here). 

I have found noisy wheels get the grease in these situations. Noisy doesn’t have to be mean spirited or driven by anger, but it does need to be assertive and direct. A “never back down” approach perhaps is a way of saying it. 

Here in Los Angeles, every year, there is a wonderful small event called Stephanie’s Day. It is sponsored by one of the local TV stations. The general manager of the station has a daughter named Stephanie who has autism. The amount of information you can get at this ONE event is incredible. For your first outing, I wouldn’t take the kids if you can avoid it. 

Being a single mom, I know I can’t always work that out, so know, there are lots of things for the kids to do. I suggested time alone because you will want to be able to process the vast amounts of information that is being thrown at you. It is a lot. It IS overwhelming. It ALL is needed. If you have the kids, just fill up your bag, or two, or 10…. And then take it home and read it. Then call the places and ask questions. Never stop asking questions, you do not know what you don’t know! My new mantra for life. I ask it all the time. Whenever some one says … “Anyone have any questions out there?” I ALWAYS shoot my hand up and say, “Dear principal, teacher, doctor…. Can you please tell me what I need to know, because I don’t know what I don’t know?” Seems confusing, but slow it down and read it again, can you please tell me what I need to know? I do not know (am not aware) of  what I don’t know (because these things have never crossed my path during my life’s existence before). 

I went in, when I realized my son was not typical, with the mind-set of knowing nothing but in the end wanting a masters degree. Think of it as life college. You will have hands on classes in “language arts” (learning the acronyms alone are challenging not to mention if your child has their own speech issues), neuroscience, biology, chemistry, history, “social” studies just to name a few. This is what I meant when I said, this journey has been so rewarding at times. You will learn so much all in the name of helping your child. Your knowledge may help many children. 

Never be afraid to move on if you are not getting your child’s needs met. There may be “the perfect service provider” who says your child has to be on a waiting list because this service or that doesn’t have the staff available. All that means is that “perfect” provider, isn’t perfect for you. 

One last thing, sometimes, you have to  make people hear you. My son was drowning in a general education setting. Drowning. I had to figure out what the trigger words were for the person whose attention I was trying to get. We’re the words, “Well then, I suppose you have just been put on notice and I will be holding you liable in the event that _________ happens with my child in this situation” ever used in the last few years? Oh damned straight they were. And will be used again, I’m sure of it. 

I am proud of you for admitting there is a need inside your child that you are unable to meet alone. So many parents/caregivers are afraid of that. Fear makes us do crazy things. Let’s take our fears energy, and use that power to make us do crazy GREAT things for our kids, who simply, and in no other terms, can’t do it for themselves! 

XoXo

~me

 

Image is of a car bumper sticker that is very similar to the one that has been on my car for several years