Friday, October 21, 2016

The Fight Never Ends

Today is the first break I’ve had in months from my work. I should be tackling the pile of things that need to be done, but as I sit here, I feel the need to write.

I have been homeschooling my oldest for just over two months. I think we are finally finding our groove. Not only is he less stressed and seems more relaxed overall, he is much more successful on the easier GE track. On top of that, he has impressed me with his dedication to getting his work done. In fact, I find he often likes to work ahead! The downside however is that the isolation isn’t helping his loneliness. But we have to focus on one step at a time.

Right now our biggest battle is getting services for my oldest son who was diagnosed with Autism in July. We are trying to get an IEP with our charter school, which means my poor son has to endure hours of more testing. In addition, we are trying to get services through a regional center that provides support and services to kids with autism. I foolishly thought that this was going to be a slam dunk, turn in the diagnosis from our hospital and go through a few intake meetings. But to my surprise, the fact that my son also has a mood disorder complicates things.

As the agency explained, having my son’s middle school deny an IEP a few years back, contradicts the hospital’s autism diagnosis and the parent’s report. He thinks that maybe his struggle is just depression this past year that led to social challenges. So now he wants me to provide proof from outside sources (not myself or husband) to help prove that my son has struggled socially through school starting in Elementary school.

I am dumbfounded as to why the years of having a 504 plan aren’t enough. I also tried to explain that our district is known for denying IEPs and that their reports don’t fairly represent our child’s actual performance and behavior in the classroom. (As evident in our youngest son who was denied an IEP originally and was reported to be doing great socially, only to later receive an IEP with proof that he rarely interacted with other students and had significant social struggles.)

I also can’t believe that a district that has an interest in denying IEP support, because they don’t have the resources to provide it, should hold more weight than a diagnosis from an Autism clinic through our hospital that specializes in assessing kids for autism.

Of course, it all comes down to money, if we can deny you services, we can save money.

This week in my attempt to contact parents I haven’t spoken to in years in order to get a non-biased account of my oldest son’s social challenges. I heard from one parent that went into a rant as she shared with me how not only did she see my oldest son struggle at recess during his elementary years, but just last year she witnessed my youngest son walking endless circles around a tree instead of attending his science class. She said that she saw this every week the entire school year.

I had no idea my youngest son was missing so much class time, yet when I requested an aid to help him with the challenges I was aware of, the school denied it saying that he wasn’t severe enough to warrant it. Yet, my son wasn’t even in the classroom! How much more of a problem do we need, he wasn’t learning and it was their job to teach him.

It makes me not only furious to hear about this, but I am sad too. To know my son walked around that tree endlessly, being ignored by the school because at least he wasn’t having an outburst makes me sick.

Then, I hear back from my oldest son’s middle school teacher that she has a clear memory of his social challenges and awkward social behavior. It was clear to her that he wanted to have friends, but didn’t know how to make them. Yet, she can’t provide a letter to the regional center to back this up because the district won’t let her.

And as for the high school, they won’t even return my calls. They had first hand knowledge of him being alone everyday on campus for months. This would really help establish with the agency that our son has severe problems in this area.

In fact, recently when my son was considering getting his first job after he turns 16 this year, he saw that the application job requirements listed “Use telephone”. This was enough to stop my son in his tracks, he said, “I’ll never be able to get a job, I can’t make phone calls.” (This is due to social communication issues.) I also don’t know how he’ll be able to successfully interview without support and training through ABA.

It’s ridiculous that the solution to these challenges are within reach, but we have to fight for them!

Yesterday I was given a message of hope. The school psychologist of our new charter school told me that our son will qualify for an IEP this year, which they will make official at our IEP meeting next week. It wasn’t just his Bipolar and Autism diagnosis, but they found he has an actual learning disability. Before she ended the call she said, “I can’t believe your son didn’t have an IEP before!”

I couldn’t be more disappointed in our school district, and I feel the same about the regional center that should be providing support to parents without a battle.

It feels like every step of this journey has been one fight after another. It never ends...


  1. Keep up the fight! It is ridiculous the hoops that we have to jump through because the school district and Regional Center wants to save money. After 3 years of fighting and only having a 504 we finally got an IEP. The school wants to make their own diagnosis but won't accept a physician's diagnosis even though that is who is qualified to make that decision. I have had teachers totally lie in the IEP even though in private meeting they told me about my daughters struggles socially and emotionally. She wants friends but she doesn't know how no matter how much work we have done. I am still fighting to get them to work on social skills and not isolate her in class from her peers. My son has an IEP because of learning disability and speech and language deficit. The school took away his autism diagnosis. I am beyond frustrated with how they have handled things this year with him. My son is 11 and is getting more and more aggressive and angry. We just recently added Trileptal to his other meds to see if that would help so he isn't destroying things. You are doing a great job so keep up the hard work.

    1. Thanks for sharing Michelle, it's nice to know I'm not the only one. I can't believe that they took his autism diagnosis away, how is that possible? That seems like a crime! I don't understand what the schools are doing, other than saving money by avoiding services to kids who need it. Our middle school teacher told us that many of the elementary schools in our area pass on the IEPs, hoping the middle school will take care of it, its a way to pass the buck! Despicable!

  2. What about raising these topics to your local news station? 'Might they provide some added research and aircover to fuel the conversation publiclly? This behavior and what Michelle mentions just sounds criminal -- at least worthy of a law suit (but who has the time and money...). Our 12 year old son is DDMD ((or bipolar, depending on the mood of the latest pdoc) and struggles with lack of friends, anger and aggression and the rest. . The ONLY thing that has "saved" us is a school system that supports IEPs generously. I cant imagine the pain and frustration you're going through. I'm so sorry your family is going through this.

    1. I think you hit it on the head, "who has the time or money to fight these things." That's what frustrates me so much, the families that have to fight these battles are the ones already struggling to get through a basic day, let alone fight systems and governments. It's so sad it has to be this way, but we are all in survival mode!

    2. Sadly, the only solution for being heard is a lawsuit :(
      Because those schools understand only two words : money and lawsuit.
      They listen only with a lawsuit, because the damage award is more money than they'd spend otherwise.
      Actually, I encourage you to document, document, document.... then, see a lawyer to sue the school district.
      They have no qualm about creating problems for money, so have no qualms in suing the school district for this quasi-criminal behavior.

      Our country has been sued so much that now, they start to do something for people with disabilities.
      Without being sued, they would never had done anything.

      So, set aside your kindness with school district for suing them.
      They have no kindness, let alone basic decency and honesty.

      And a threat of being sued might be what's needed for school district to act.
      If you settle, do NOT accept any confidentiality clause about their behavior. Because this is a tactic to buy your silence about their appalling behavior : do not give in this request, it only fuels their indecent behavior.

      As if we didn't have enough in our plate !! Sadly, such administrations only understand L-A-W-S-U-I-T :(

  3. Just catching up on your posts. Hoping things have been a bit better for you all.

    1. Thanks for catching up! Yes, things are getting better, we are slowly getting the services we need and things are falling into place. : )