Family Portraits

I want to get family portraits done this year. This is a small thing, but something I think about. I’ve sent out some inquiries to local photographers; I want to pay money and get professional portraits, and I have two kids with special needs. I need someone GOOD.

Here are my concerns:

1. It’s not easy to get T to smile, like EVER; he’s usually fairly unhappy when he’s around his family.

2. In response to T’s constant fighting with them, his sisters don’t particularly enjoy being around HIM.

3. Also, I get really tense when everyone is together; I’m waiting for a fight to break out and I have Risperdal or Haldol in my pocket. I’m certain the kids pick up on my anxiety.

So, what I’m trying to say is that I/we walk on eggshells to keep the small amount of peace. I try to keep everyone apart when I can. The kids sort of natural keep themselves apart. They don’t all enjoy each other or being together. There are certain things that trigger T; being part of a large family is one thing. And yet I want to capture our family.

Maybe it’s a bad idea? I don’t know. We haven’t done family pictures in over 4 years. All the pictures on my wall are old, from when S, who is about to turn 8, was a baby. I really want a beautiful family portrait. But maybe it’s not worth the stress. Maybe it’s disingenuous to capture our family together when we’re usually NOT together? Maybe I’m just overthinking this. I want to get family portraits.

The IEP Fight

Today was a meeting for T’s IEP. The teachers and administrators want to give him a 504 only. They keep coming back to the same thing: T gets good grades, As and Bs. T is not triggered to act out while at school. T is doing fine at school, academically and socially. He does not need special education.

I keep saying, But this is the beginning of the year. School is EASY so far. He is COMPENSATING. And as my friend A pointed out, he may be working so hard to keep up in school that he’s freaking out as soon as the school day is over and he’s home.

I’m not used to fighting for an IEP — R was a much easier case. R does not get good grades. R freaks out at school. R was a shoo-in for an IEP.

The school also seems to think that because T didn’t have an IEP in elementary school, he doesn’t need one now. Meanwhile, he was barely in elementary school, at least here in Texas. We moved here at the end of March; T spent a month in the hospital, another month in school, then graduated from elementary.

But I’m going to fight. I’ve already contacted an organization that helps parents with the IEP process. I’m not going to give up til Tiger has an IEP.

Small Victories

I didn’t blog at all last week. I’m busy, just like every mom, no matter how many kids you have, and whether or not they have health issues. I want to be a nurse, and I’m taking a prerequisite biology class for nursing school at a local college. I work 2 12-hour shifts a week as a CNA/Patient Care Tech. I volunteer a few hours every month for my younger kids’ school, and also for an afterschool activity. My husband tutors once or twice a week, so I have to keep the kids occupied during that time. I run a book club once a month. YES I FIND THE TIME TO READ — it’s my ME time.

But last week was good. No crises, only a few calls from T and R’s school. R goes to the nurse’s office when he’s feeling overwhelmed, which was happening a lot more often before the counselor decided to stop gym. Now he calls like once a week with a headache or leg pain or something. We chat for a minute and I suggest he goes back to class.

T’s new psychiatrist (aka R’s psychiatrist) added an anti-depressant to his medicine regime, and I think it’s helping. T presents depressed and irritable (at least, that’s what I see), so I think an antidepressant might help.

R and T went camping over the weekend, and my husband said they were great about getting their pills (that’s always a concern, when I’m not the one handing out pills). I got some quiet in the house (my younger kids were with my sister-in-law because I had to work).

I went to NAMI last week and said things are okay right now. One of the people there said things are rarely okay at their house; it’s always UP or DOWN. But things are okay at my house. It’s times like these where I can exhale and think, we’ll all survive T and R’s illnesses; I’ll have the opportunity to become a nurse (I worry about being gone all day at nursing school if T and R aren’t stable, but I REALLY want to reach that goal for myself); all the kids will be okay (remember I have 3 neurotypical children too).

Dear School

I have gotten your messages. Twice. The first time, I thought there must have been an error.

This is Mrs. XYZ from the 504 department at your son T’s school…

I called back and left my number. I kind of forgot about it. I am busy — in addition to parenting two kids with mental illness, I have three neuro-typical kids; I work on Saturdays and Sundays; I take a college class on M/W/F. I’m considering being a co-leader for my daughter S’s Girl Scout troop (I emailed them, as long as you don’t mind that I’m not crafty and I hate camping, I’m in!) Everyone is busy.

Today, a few weeks later, I got the same message. It didn’t sound malevolent — but they said it again. 504.

No, no, no, no, no. God no. No. I’m not playing that game. An IEP is special education for children; it’s a LEGAL DOCUMENT that the school has to follow. A 504 is simply some accommodations; a 504 does not include special education and they do not need to be written out.

A school is legally required to provide an IEP to any student who needs one but “needs one” is a grey area when you’re dealing with T’s issues. However, back in June I took both T and R for psychological AND academic testing, and they both came back with learning disorders. R’s are more severe — especially in areas of reading and writing. He does not understand phonics at all.

T’s learning disorders are less severe than R — he can read and write with more fluency. However, his results showed a serious Auditory Processing Disorder, and he’s bipolar. That falls under the emotional impairment category for an IEP.

Like an insurance company’s job is to say no to everything your doctor says you need (in my experience), a school’s job is to deny extra services unless they absolutely have to. In R’s case, it was obvious he needed them. T’s case is less clear-cut, but I think he’s in need of more support than a 504 will give him.

Just like I do with the insurance company, I’m going to fight the school to get T what he needs.

Update: A Second Opinion

Yesterday I took T to see R’s psychiatrist. I don’t like to take them to the same provider because they’re twins — although now that I’m typing this out, I’m wondering if it’s a dumb idiosyncrasy that I need to let go of. I literally could not find ONE other psychiatrist in a 20 mile radius that took our insurance and was taking new patients. Dr. K, who sees Rory, was willing to see T and didn’t have a problem with seeing identical twins.

Dr. K actually noted a LOT of differences between T and R.

R’s ADHD is much more hyperactive; R appears to be on the autism spectrum (I’ll write about that another time); R has a much sunnier personality. T is surly and presents depressed.

Dr. K doesn’t think T need residential treatment *at this moment* although he noted that “failing” two hospitalizations is an indicator for residential treatment. (“Failing” in this sense means that he went back a few months later for the same thing.) He added an antidepressant to T’s arsenal of medications, and would like to, over time, bring down the amount of Risperdal he takes.

I’ll bring T back to see Dr. K in a few weeks and see if the antidepressant has changed things.

Meanwhile, R’s hyperactivity lately — especially in the mornings — is OFF THE CHAIN, so the next time he sees Dr. K, we’ll talk about that. Focalin XR and regular Focalin, don’t fail me now! You’ve worked so beautifully for so many years!

Threat assessment level: LOW

Last week R’s school counselor called to talk to me because R has been telling her he wants to hurt people. More specifically he’s been saying he has the desire to hurt people but doesn’t actually *want* to — but if he gets angry enough, he will.

The counselor told me that he told her he’s stressed about all kinds of things; some legitimate (T hurting people), some not (R has too many chores, according to him). We had a meeting at the school. I brought my friend AT who has children with special needs and has been through the school district with them. She knows a lot about dealing with teachers and schools and IEPs. The school brought the counselor who called me, the special ed coordinator, and the principal.

On the whole the meeting went well. Thanks to years of therapy, R is very self-aware. He genuinely doesn’t want to hurt people. The school officials said they could see he has a heart. (Aside: some days I’m not sure T has a heart.) He’s outspoken about his difficulties, and thanks to some degree of autism (which I’ll write about another time), he talks to people incessantly. So what I’m saying is that R has strong feelings and likes to talk about them. The school isn’t worried that he’s plotting world domination, because he’d undoubtedly tell someone about it first.

However, because he did threaten to hurt people, I had to get a “threat assessment” done on him.

When I brought it to R’s psychiatrist, he kind of laughed and said, “What am I, a mind reader?” No, you’re just the guy my insurance pays $150/30 minutes for who gives us Risperdal and Focalin. But he wrote the school a threat assessment. It said something like “He does not express active intent to harm people, and knows it would be wrong to harm people.” The note also mentioned that R’s IEP should accommodate his over-reaction to loud noises/being overly-stimulated.

To that end, the school suggested R stop taking PE. It is a requirement for our state — unless the IEP precludes it. R’s IEP is being changed to preclude it. PE is just too loud and over-stimulating for R; he over-reacts to the noise and stimulation by getting angry and feeling the urge to hurt people.

So no more PE for R. I don’t care; it’s a fine solution given the situation. R is fine with it too, but he worries a little that people will notice he’s not in PE and will make fun of him for being different. One day I’ll write about how both R and T are reading Wonder by RJ Palacio for school, and what an amazing book it is.

How did I know?

Bipolar is a big word to throw around, especially on young kids. My kids who are bipolar are 12. I wasn’t sure what the word was when my kids were younger. R started showing signs first. He was ANGRY. He would RAGE. He was suspended from preschool at age 4 for throwing a chair at a teacher; he was suspended from Cub Scouts a few years later for the same thing.

R was not happy

I took him to a psychiatrist and he was initially labeled DMDD, which is Disruptive Mood Regulation Disorder. I also refer to it as “baby bipolar,” because it describes kids who are too young to be called bipolar.

We went gluten-free. He saw a therapist weekly for years. He was on medication for ADHD (I’ll write about that another time). He was still angry. Eventually he got so angry he tried to hurt himself; I took him to the local emergency department, and they admitted him to a psychiatric hospital. That’s where he got the diagnosis of bipolar disorder.

I’m not tired. Well maybe a little.

In the waiting room

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Whenever I go to my son, T’s psychiatrist — once a month or so — he tells me I look tired. My reply is always the same: Well, I’m with my 12-year-old son, reporting to his psychiatrist about his violent impulses. You would be tired too.

His psychiatriast, Dr. J, is Canadian, but I guess he missed the memo about Canadians being overly polite.