Victory!

I have been asking all year about ESY (Extended School Year) for the Little Man. Each time I ask, they shrug it off or flat out tell me he will not qualify. I have felt since the day he started first grade that he would benefit from, if nothing else, the structure and continuity of ESY. Granted, that's not what it is supposed to be for, but I felt that in his interest, it's what would be best for him.

In February, at our first tri-annual meeting, I again asked and was told no. On April 1st I again inquired, and was told no - after just being handed test results showing him to be at Kindergarten, zero months in math and that his fine motor skills are at a >4 year old level. Even with that knowledge in hand, they still insisted that he did not warrant ESY.

I called for a review meeting. I have spent the past 3 weeks doing research at all hours of the night. WISC, EALR, WAC, BASC, FAPE, ESY - I feel like I know these things like the back of my hand. I typed up an agenda for MY meeting and sent it to his teacher last week as not to catch her off guard. I outlined what goals needed to be addressed, where changes needed to occur on his IEP, what options I felt needed to be on the table for the coming school year, and I plainly added that I wanted him to receive ESY.

The IEP review was today. I brought with me my own notes on my reasons why he was due ESY: 1. Multiple unmet IEP goals, 2. Significant delay in math, 3. Three year delay in fine motor, 4. Probable regression over summer, 5. Slow recoupment in the fall, 6. Less likely to catch up as he ages. I quoted items 2 and 5 of the WAC 392-172A-02020 on Extended School Year Services and how they would apply to TLM. I brought work samples from this time last year in Kindergarten with comparisons of now. I was armed and ready.

We went through my concerns, each specialist had highlighted on their copy of my agenda, the areas that directly affected them. They commented and gave feedback, and commended me for my active role in his advocacy. Not one mention of ESY.

It was nearly time for class to start, children were buzzing around in the halls, and the team began putting their notes away. I was taken aback at first but knew I had to step up and take a stand for him. I politely reminded them that I wanted to discuss ESY.

At first they appeared flustered. I calmly pulled a writing sample out of my notebook and laid it on the table. "This is his writing in March of last year. It is hand over fist better than this year." That was all I said, I left it at that. His OT was the first to speak up, she said that she had similar work samples from Kindergarten and that I was right. Then she said that she also felt he needed ESY. At that point his teacher mentioned that proposals were due to the district three weeks ago (the week that we had our last meeting, when they all agreed that he did NOT need ESY) and that it was too late, even if we did feel he should have it. The OT was the first to speak again. She said that she works OT in the summer and knows that proposals come in late all the time, then she said again that she felt he needed it. His teacher seemed reluctant but agreed. She said that it would take time as she needed to speak with his Kindergarten teacher and find out where he was last year to get an honest feel for where his regression is. Then it was the school psychologists turn. "We have proof right in front of us. Put it through for writing, we'll take care of the details later. He NEEDS this." I tried to hide the smile on my face, and to fight back tears, as I knew that they finally got it. My son became more than a number, more than a dollar sign...he got the validation that he deserves.

And that's how I got ESY for TLM!

Anonymous

As I write this today, TLM is in his room screaming that he's going to kill me.

Earlier today I told him he should take a nap when he finished his eggs...the wrong words on my part...and he went upstairs and dumped out 500 Legos on the floor. Now he's upstairs and he's supposed to be cleaning them up, I refuse to help.

Today was one of the bad days. He ran away once already, I am back to locking the doors at the top where (for now) he can't reach. I yell and I scream, and in the back of my mind I secretly wish that the neighbors would call the police because that may be the only way I get a break from all of this. I swear, because it's better than hitting, and now he swears back. And I think I'm going to hell because I believe with all my being that I am one of the worst mother's alive. He has a disability, one that makes him succumb to his mania and it's not his fault. But at the end of the day, I forget all that, and I'm tired, and I'm alone, and I can't do it all - I become the bad mom that I despise.

He's violent again, hitting me and throwing things at me. I know there will come a time, maybe not this year but soon, that I won't be physically strong enough to protect myself against him when his stability is in question.

On the outside, the 'me' that everyone sees, I am strong and an advocate and a 'wondermom' of sorts. On the inside, the anonymous 'me', I am scared and I am alone and I don't know what I am doing. I'm sure that I am scarring him, that he will recount these days when he's older of when I would scream at him and turn red in the face with anger. Hopefully when he's older he will understand that I tried my best and that behind it all, I really loved him and cared for him and was just trying to hold it all together.

I hate the unknown; and his future, and my own, is a huge unknown. I don't know what it will be like when he's 13 and manic...I do know 3, 4, 5, and 6. I'm meeting 7 and it's not any prettier than the others. I see his cues faster, I already have an appointment with the psychiatrist for next week which is way farther ahead of the game then we were last year. I just hope that it's soon enough. I don't want him in the hospital again, it did nothing for us, we gained no speed and stumbled a lot on the way out. The only good it did was give me some sleep, I spend my days wishing for it to end only to spend my nights in near panic over what the next day will bring. It's a viscious cycle and I can't break free - not until he is freed of his mania, unfortunately, that can take 1/4 of a year.

Average Joe

Today was the 'Big Meeting', my sit down with the district to review all of the tests that were conducted on the Lab Rat (I mean, the Little Man) since February.

An IQ test (the WISC-IV) was given and he scored a 100. This score may or may not go up as his Processing Speed is significantly delayed and interferes with his other areas. If that score were to increase, his overall IQ would increase as well. A score of 100 is perfectly fine with me though. I, of course, think he's a genius, but I'll take average if I have to.

His reading score on the WJ-III was 1st Grade/3rd Month which is no where near what he scored on the other assessment that his teacher used. We are going to be looking in to that further, I am leaning towards the WJ-III being the most accurate. Unfortunately he scored in Kindergarten 0 months in math which doesn't bode well for my aspirations of him becoming an entomologist or a neonatologist. We'll need to work on that. Not a laughing matter however is the fact that he has now been listed as Learning Disabled. He's too young to determine specifically what LD's are present, and if there is only one or multiple disabilities.

He had a 'clinically significant' delay in 15 out of 22 areas in his social/behavioral assessment. I don't have all of those results yet, should be receiving them next week.

My big 'hurrah' for the day...1:1 OT for fine motor!!! There is no denying that his poor motor planning, motor memory, organization, and fine motor delay are holding him back in multiple facets of his education as well as other areas of his life. Not only did I get the 1:1 OT but they will be specifically addressing the inability to tie shoes and button buttons. I feel like I won a marathon right there!

There is still a lot that needs to be addressed. We did not begin discussing next years placement. April 22nd is the next scheduled meeting for a full IEP review; those usually take a good 2 hours out of my day and I am knee deep in research and note taking at the moment. I am confident that I will get extended school year for him and that I will feel at ease with the placement that is recommended for the fall.

Unfortunately, TLM seems to be a bit manic at the moment. I'm hoping that it fades quickly and that we don't begin walking the dark roads of last April - the path that lead us to the hospital a year ago. Cross your fingers for me that 'this too shall pass' and that we come through unscathed.