Wednesday, May 23, 2012

Father gone, Learning Challenge, ADHD: My Baby the Giant Killer

I know these things don't define my baby; yet, here we are.

I posted on my widow forum, that we have the diagnosis. After years of struggle, tutoring that didn't help, many nights of frustration, of feeling helpless and just plain tired, what I suspected was true. I had no problem accepting the ADHD diagnosis or the Dyslexia diagnosis. What I knew was that I had a child no less intelligent than anyone else who was struggling to read, (though has improved a lot), took forever on her homework even with me sitting right there (though there has been improvement there too) and was tanking almost every test. I wanted answers. I needed answers. I was desparate for answers.

It was not an easy path to the diagnosis. And the path hasn't been easy since I had it. The choice of a school for the upcoming year is still not final. She has a seat in a public elementary school near the school she attends now. She'd need a scholarship to go the private school I toured that already has an impressive program for children with learning differences. Three others were closed options as in they only had children with learning differences enrolled and that is not what I want for her. Her current school like almost every other private school, is not used to dealing with children who need accommodations. We have been there for a long time. She was in the daycare and went straight to the elementary school. Our pastors are the CEOs (aka headmasters) so naturally after all they have done for us, I was not going to remove Ariana without a conversation.

Well, here's what happened. Due to his own history, my pastor wanted to provide services for children with learning challenges, and prior to Ariana's most recent evaluation he said he would look into it, but the research on costs, staffing needs, accommodations and modifications required had been put aside due to other things being addressed. It took a while to get the diagnosis due to some delays in paperwork, but I eventually had it. Within three days of getting word of the diagnosis and my sincere angst, but willingness to change schools, he had put together a team of six people to bring in what Ariana would need in hopes that she would not have to change schools.

I don't know if all this will result in her being able to return this coming year or at a later time, but I certainly appreciate the effort. Everyone agrees there is no reason to retain her and that doing so in her case would do more harm than good. The path for her will best be served with remediation and accommodations in the classroom. Her school has the psychologists recommendations. I sent the psycholoist's report to her pediatrician and had an appointment with him yesterday. I now have a prescription for an ADHD medication and with the summer to see how it will work, and make adjustments if they are necessary. The public school told me that due to scheduling an IEP would not be written for her until after she'd been in school there for a while anyway, so I am not rushing to get them the report.

I have contacted several sources for tutoring over the summer. I heard back from a lady certified in the same program the therapist (who saw Ariana saw back in November) wanted to use. I also have the home version and will finally have time to use it over the summer, and hope to only have the tutoring 1 hour per week. She costs $50/hr, but at least it will be one on one. I have replied to her asking about her availability and the logistics on how she works. The pediatrician is referring us to a speech therapist who will contact us for an appointment.

Today, I have a meeting with the resource teacher and administration from her current school. So, after hours of research with the psychologist’s report by my side, I compiled an initial list of 11 accommodation/modification requests for Ariana to take to this meeting at her school today. The list may need to be expanded or reduced depending on the effects of the medication and the tutoring she’ll be getting, but it is a place to start. An individual education plan also consists of a set of goals, so at the bottom of my request list is a request for the goals the school has for 4th graders so I can decide whether or not to have those goals adjusted for Ariana.

Along with those requests I have printed copies of my research sources from the websites the psychologist provided to support my reasoning in making those requests. I’ve also made up a check list I’ll be requesting Ariana get to use each day to make sure she has everything she needs when she packs up to go home. It is called “My Take Home List”. I listed every book she’ll have next year, and there is a section called homework sheets with each subject listed as well. Each line has a box to check. I’ll be asking that she with help from the teacher or a friend, take the sheet and the homework assignment sheet and get help checking things off as she packs at the end of the day.

She would often come home either without the worksheets she needed to do her homework, without the books she needed or both. I actually had extra copies of some of her books that I had purchased in case she forgot the sheet at school. This was usually demoralizing for her because she might have done half of the sheet between end of instruction at 3:00 and when I arrive at 4:00, but would have to start over with a blank sheet once we got home.

I realize this will be the first of many of these meetings. I’m slowly wrapping my head around getting the mental energy to keep going. Lord only knows there might be other undiagnosed children in there that end up getting help without having to change schools. My pastor has been appreciative of the push to move forward in expanding the school’s capacity. If it doesn’t work out for this coming school year, I am confident she will be able to return and that is comforting.

I guess we're going to have to be world beaters in our house. Bring on summer. I think we’ve earned our vacation.

Wednesday, May 9, 2012

26 Months: I Should Really Be More Proud of Me

It is one of the things I am working on, being more proud of myself.

It is hard to figure out therefore explain the way I am feeling right now. I could say I miss Thomas. I could say I’m worried about Ariana’s transition to a new school now that she has officially been diagnosed with Dyslexia and ADHD. I could say I’m worried about getting her everything she needs. I could say I feel alone not having Ariana’s father to talk to about this. But I’m also not at all sure he’d buy into the diagnosis. It makes sense to me though. I could say I’m sad that Ariana has to change schools because she is so upset about it (and she doesn’t even know yet that it is definite).

I could say I’m just flat out tired because I have been working 15 hours most days of the last 3 weeks. I could talk about the daunting task I have ahead of me of getting Ariana an Individualized Education Plan written and signed. I could yet again begin to lament situations surrounding my husband's illness and death that have put me in various uncomfortable situations over the last two years. But then I’d have to say how I really wish I didn’t think about those things every time I had certain challenges.

Change just isn’t welcome is all. I guess it was not guaranteed that I’d be able to stay on the path we laid out for the children. Things happen. We find out things we didn’t know before now. Private school was a huge part of our plan for them, but I have resolved it in my head. There is just one here that can serve her with these challenges and we'll need a scholarship. I am applying though. What’s important is that each child’s needs are met however I have to do it.

Decision time came and went. The evaluation came and went. Then the results came in. Now I’m in the process of initiating the necessary communications for the transition. I started communication with the public school I chose and resumed it with the private school I chose. As advised by the psychologist and several other people who have been down this road, I got myself an advocate for the process of getting my daughter what she needs. There is a special needs teacher at my church I have made aware of Ariana’s situation. I had asked her to tutor her, but all of her time was taken. She said though that she would do what she could to make sure Ariana's Indivual Education Plan was a good one. I made an appointment with her pediatrician to talk about options for dealing with the ADHD. It’s not for a couple of weeks due to availability.

What I’m facing and I think what hurts is the plan is changing without the man with whom I devised the plan. People who know are supportive but no one can dive into this at the level her other parent would. I will miss her going to the same school and I can admit I’m a bit emotional about it at times, but I’m looking forward to getting her what she needs. But I think my emotion about it has as much to do with having to leave the plan Thomas and I made together as anything else.

This was one of those things that would always keep him “active” in their lives in my mind and once we go off that plan, he’s not or at least not like he was. My children are so young, I have had to and will have to make so many decisions about them without him. Just makes me feel really alone I guess and it feels like he is even further away now. Knowing that 1 of every 10 children has a learning challenge has not helped yet. Not sure if that makes any sense, but I know it would not have a snowball’s chance in the desert of making sense, if I didn’t voice it.

But I look back and see I have been on my own with them for 26 months. Elijah was 2 months old when this happened and I am floored when I look at him now. Ariana having been through all she has been through could have a lot more issues going on. But the psychologist said she had no reservations of recommending any program or school for her because despite everything else she is well-behaved and a joy to have around. Her teacher said she is one of the most well-behaved children she has ever had.

I lamented about the situation with Ariana over on the widow board I go to and one poster said she had read a lot of what I have written over the time I have been on there and that I wasn’t giving myself enough credit. She said I’d held things together for a long time and should feel more confident in my ability to move forward. Nothing I haven’t heard, but I think I reached a point of being tired of feeling bad about myself when I read it.  And I thought to myself.  Yep, and there was so much pressure on me it was unreal.  I should give myself, and therefore God more credit for all that is intact at this point including my sanity.

It’s just that sometimes, when I think about it all…it just hurts. It hurts like a dull ache of a weight on you.

This journey prior to and after Thomas’ death really did a number on my self-esteem. I am not where I want to be yet, but with all of the trauma and drama we have experienced…I should be amazed at my little family. I am amazed at my children. It’s being proud of myself I have issues with and I realize that. As I have carried on in a situation that would likely crush a lot of people I realize it would serve me better to acknowledge it more often. Even progress towards progress is progress.

Wednesday, May 2, 2012

Frustation, Steps Forward and Back, Decision Time: Can I Do It?

Spring is often a time for change, birth, blooming, what have you.  There is no lack of change happening here.  I feel like this journey I’ve been on has left me either ill-equipped or just too drained to deal with the challenges I’m facing. Of course there is also the possibility that none of that is true and I’m just being too hard on myself as usual. I think it is a bit of both. Either way the alternating between forward and backward progress is draining.

Okay, so after continuing to struggle while waiting for a spot to miraculously open up at the therapy office where I had Ariana evaluated in November, I took her to a psychologist. I can’t get her any help without some type of diagnosis whether it’s adhd, dyslexia or both. And paying for tutors and private school was getting me nowhere. Ordered the home version of the program the therapist (that has no spots open) wants to use, but after doing her regular school work, we are both spent.

I met with the psychologist on my own first for an hour to talk about what we have been experiencing. Of course this had to include talking about Thomas’ illness and death. I think I have said before that talking about all we have been through at once really does something to me. Hearing it all come out of my mouth and watching the reaction even of a well-trained therapist (and she does appear to be well-trained) or whoever I am speaking to at the time, is at the least a really interesting experience. Testing was scheduled for April 3rd and she’d test for adhd as well as any learning disability, plus anxiety and depression just in case. That day was trying and tiring, but the therapist said she enjoyed being with Ariana. She said she’s a wonderful child and it would likely be life changing just to get her into the right educational environment, but if need be she would advise on medication.

We were to meet two weeks later to go over the results. In the meantime I toured a school with a learning support program embedded in it. It was the only private school around I could find with one implemented. I walked away impressed, but also with the knowledge there’s no way I could afford it without a scholarship. The principal said that was a common response and handed me the financial aid packet as well as addresses of preschools nearby in case I wanted to move my son to ease the commute.

Well, after delay after delay after delay, I am finally headed back to the psychologist tomorrow for the results. The original plan was for us to meet two weeks later, on April 17th. Testing was April 3rd. However, the paper work required from her teacher took 3 weeks to come back. I should have followed my first instinct to hand deliver the package. The doctor for valid reasons preferred to mail it to the school.

After all was said and done, this conversation was delayed 2 weeks. Here we are in May. This discussion is basically going to decide where my daughter goes to school in the fall and I have been more than frustrated. I have not been able to get back in touch with the lady from the school I toured last month because I have nothing new for her and this also delays her being evaluated for the program they offer and me being able to apply for a scholarship, which we will definitely need. I did however, manage to get her a seat at the public school I wanted. It’s two minutes away from my son’s daycare. If we end up there, I’ll add therapy at a local center. My pastor (knowing how much the school means to us), wants to get her what she needs. I appreciate it, but I am just not sure if he has the time to do so and we can’t go through another year like we have.

In the meantime work has been crazy and my daughter has had some stellar moments and some not so stellar moments at school and at home. She has however begun to do her homework without supervision. I didn’t worry as much about the correctness of it as I normally do because I didn’t want to take away from her taking the steps to do her homework without me an inch away.

Last night even I called to her so we could prepare for a history quiz and she yelled back, “I’m already studying!” I peeked and there she was, sitting, history book open. While she took a break I wrote down the study questions the teacher had emailed to the parents and let her go on her own again. She didn’t mind. That’s a change from saying she needed me next to her. She may or may not do well on this quiz, but I won’t let that take away from her studying on her own. It’s a step right?

I feel for her. I know she has tried. Her friends mean a lot to her and while they have been supportive, there have also been some comments on all of the crying she does during the day. I don’t know if it is fatigue at this point, but she’s had more episodes of frustration and crying in the last month and so have I. She’s 9 years-old now. She had a birthday last week. We celebrated surrounded by family and friends and I didn’t experience the crash that normally follows hitting yet another milestone without her father. But as I move forward however slowly I can’t help but feel I lack the fortitude I need now. No matter what the doctor says tomorrow, there are going to be a lot of adjustments to our lives. Not the least of which is a possible change in schools, which is not the least bit welcome in her world. She’ll make friends wherever she goes, but I’m bracing myself for the ride during the adjustment. I will make a small mountain of decisions to make once I find out the extent of what she will need.

Challenges in everyday life whether they are large or small magnify the loneliness in my life. Reading that 1 out of every 10 students has a learning challenge hasn’t helped that. Knowing that I have to make whatever changes I need to make for her good haven’t helped that. Reminding myself that the hell we have been through would have crushed a lot of people hasn't quite helped that. I have reached the point where I have faith we can overcome what we face. I do however feel as if I have been swimming upstream for the better part of the last seven years. I’m smarter, more compassionate, and in a lot of ways a better person from the journey. I’m also flat out tired. The answer to my original question: Can I do it? I can. I will. I have to.