Shutterfly Cards

About a month ago I got a Groupon for a photobook from Shutterfly. It cost me $10 for a 20 page book worth $30. I decided to make a book for Super Hero for Christmas. It took me awhile because I got to choose all the backgrounds, borders, wording and fonts. But I am so happy with the results. They also ship very quickly. The entire book was printed and arrived in my mailbox in a week. So you still have time to order something for Christmas! They are having a sale right now - 20% off all holiday cards. Check it out here.

Yesterday we took the kids to Washington Park in Portland and I took pictures in the Rose Test Garden. Even though the flowers are not blooming, it's still such an amazing place. The kids had a blast running around, helping with poses and exploring the gardens. I've been impressed with Shutterfly's Christmas card selection, and will probably end up using a design from here.. My favorites are the cards with multiple photo spaces. So many memories to choose from throughout the year!

The kids are so excited to see the results of our photo session. I love the quality of Shutterfly so much, that it makes me want to throw a party, just to use their invitations!

The Big Update

So much has happened in the last month. It's no wonder I haven't been blogging about my ever so interesting life. Holland got into the school I was hoping for. We had several meetings and they decided it was a good fit.

We've had several mishaps with transportation (first day he was supposed to start, there wasn't a ride for him; and later on his driver told him she was going to call the police to get him out of the van because he wouldn't get out). Let's just say that I've never seen the school district react so strongly, so quickly and so appropriately. For the next two days right after this happened, they had a substitute driver. The director of Oregon City schools transportation went down to the office of the contracted student transport services and discussed the problem. They then switched the driver for Holland and the other boy who rides with him. Now we have a trained driver who has actually worked with special needs kids before.

There have also been a couple problems with getting him to stay at school. For the most part he's been fine and seems to be adjusting well. He gets lots of freedom for breaks and allowing him to cool down, but the hardest part is just getting him there. The program is a day treatment program so there are counselors and specially trained staff to deal with his emotional and academic learning needs. Within the first two weeks, two of the staffers had come out to visit Holland at home. They even both climbed his 4-story tree fort! This next week, his support staff Mary is coming out to work on family interactions. Romania will be home from school for a community service project. So she will be able to work with all three kids.

I will try to be more consistent with posting updates about all that has been happening. My uncle just died yesterday morning and things have been happening so fast all around me.

The Big IEP Meeting

Finally had the IEP placement meeting for Holland last week. I haven't been able to update because I was sick last weekend. And life just moves too fast sometimes! The woman from the parent advocate group was there but wasn't able to stay for the whole meeting. Five minutes after she left, the school rep says, "Ok. Let's talk about placement." Arrrggghghgh! She was helpful, though. She wrote suggestions down on the IEP draft for me to bring up, or request to be included in the IEP. At one point, the school psychologist was going over behavior goals. One of the items said he would "use self-management techniques when frustrated instead of damaging school property 75% of the time." My parent advocate then asks, "So, it's okay to damage property 25% of the time, then?" I wanted to laugh out loud! Her point was that if the goal is written as anything other than 100%, he would become confused if sometimes it was okay to damage property and other times it wasn't. The district guy wants to see the paper and says "I don't think that was the intention of the goal." But she had a very good point and it made me laugh.

They've put in a request to a place in Beaverton called Lifeworks. It will be a 40 minute bus ride. That's just awful. There is nothing closer than is appropriate. At this school there will be the teaching staff as well as medical professionals available for his needs. I haven't figured out how I'm going to tell him. I just know it's not going to go well. Maybe they'll have a computer for him to take apart!

This is New

Real quick update: saw the new doctor Monday because Wednesday had an appointment for developmental disability services. This doctor isn't changing his diagnosis (and really only a developmental ped or psychologist can do that), but she says he's showing lots of signs of Asperger's Syndrome. I've actually heard this before, but we've never pursued it. We've always treated the symptoms as bipolar and she'll continue to do that. Even if he does have Asperger's, there can still be underlying issues like a mood disorder. Interestingly, if we can't prove his developmental issues are related to fetal alcohol spectrum disorder or some other mental impairment, we won't get any assistance. Bipolar doesn't qualify him at all, but Asperger's would.

Now I'm doing more research on Asperger's and trying to view his impairment from this angle. It's tough trying to figure out if his behavior is from a mood disorder or a neurological impairment.

GROUNDHOG DAY

This is my life. Waking up day after day and having the same problems.

Shriners: Part III

How many updates can a person have on a situation? Turns out a lot since this process is so long and tedious. I'll get right to it. Save you the trouble of having to read through all the boring details. Holland didn't get accepted to Shriners. So very disappointed.

I took Egypt and Romania over to my mom's house the night before because we had to leave the house by 7 and I didn't want her to have to get up that early. It took under an hour to get there, but glad I allowed myself the extra time for parking and navigating the building. It's so confusing up on "Pill Hill".

I had most of his records sent over before the appointment but found out the day before that the neurosurgeon's office had not sent over any of his film. It would have been nice after getting all the requests for records to be sent that they would have said "by the way, we won't be sending over any of your x-rays, MRI's, or CAT scans so be sure to request those through the records department." Silly me thought that the doctor that actually ordered all those tests would have them included in his file. So I had to pile the kids in the car and drive 45 minutes up to Emanuel, walk in a big circle to finally find the film library. The woman that I spoke to was so nice and had everything ready for me.

After filling out some more forms, we were given a pager that would beep when they were ready for us. I knew that Holland was anxious because he wouldn't go play any video games. We didn't wait very long and were taken back to get weighed, measured and blood pressure taken. Once in the room, more questions, more information entered into a computer and then finally a doctor came in. He did a quick once-over, looking at how he walked and looked briefly at his back. Then the big-wig doctor came in and asked "what can we do for you?" Well, isn't it obvious? I'm here to get help for my son with spina bifida and encopresis problems. But apparently you have to be very specific with what you ask for. After doing some x-rays on his feet because of what he thought was bone sticking out of his feet, we were told that there was nothing they could do to help us. My request for orthotics was a waste of money and to just go buy something at the grocery store to put in his shoes. I know from the inserts he had before that it helped with his leg pain. His ankles are so weak, that they turn inward. Not only that, he's pigeon-toed and has no arch.

But I honestly believe that because I didn't come right out and ask for physical therapy or occupational therapy, they didn't offer it. They knew from our medical treatment history that we had done that. We had also tried exercises at home, but he's in so much pain, I can't do them with him. I really don't understand why he wouldn't be a good candidate for treatment. But I know they are used to seeing very disabled kids on a daily basis. Why else would two different people say to me "oh look, he can walk!"? I guess because he's not crippled, we really can't benefit from their services. Because everything is free, they only want the most severe cases for treatment. Which makes it very hard on me.

The last doctor that came in talked to me about the encopresis problems and the celiac. I think he just wanted to see how much I knew (which is a lot from doing this for 2 1/2 years). I found out from him that the C1 vertebrae that has a huge gap at the bottom of his spine, is the vertebrae that controls bladder and bowel functions. Okay. Sorry. But doesn't that just fit in with a spinal cord problem and shouldn't he be treated for this malformation? I didn't find out until the very end that there is another option for people suffering from constant bowel problems. And I'm talking constant. I've thrown out 5 pairs of underwear just this week (TMI, I know, but you get what you pay for). This doctor told me about some tube that's inserted and every two days or so, the person sits on the toilet and the tube gets emptied out automatically. Then there's no accidents because he gets cleaned out every couple of days. Why was this never brought up when I was talking to Mr. Big-Wig? When a kid has an obvious bowel problem that hasn't been cleared up with a tethered cord surgery, wouldn't it make sense that it's probably related to the spina bifida and NOT the celiac disease? I just don't understand what is going on. What is the plan here? For Holland to continue suffering? For me to clean out poopy underwear for the rest of my life?

Someone throw me a flashlight because there's no light at the end of this tunnel.

Another Day, Another Window

We've had two sessions with our new doctor for Holland. And I really like her. She's a nurse practitioner, but she has her Ph.D and she can prescribe meds as well as counsel. Hoping to get some bang for our buck. I gave her lots of paperwork on Holland and she was impressed with all that I brought (finally!, Someone who appreciates what I do!) At our second appointment, she had had time to look through everything and we were able to discuss med changes, what meds he'd been on and which ones I thought didn't work. We also talked about an ADHD med, but that will come later, if at all.

I had to email her for some counsel because Holland broke another window. This time my sister had come over every morning during this week for about 4 or 5 hours to help me clean, organize and work on Holland's angry outbursts. He had been told he couldn't play with friends due to prior behavior. When a neighbor girl came over to invite Egypt to come play in their sprinkler and he was told (repeatedly) that he couldn't go, he got physical with me. My sister ended up stepping in and basically after not being able to stop the violent behavior, we put him in his room and waited. Much of his belongings had been removed, but we couldn't remove his window and he threw a ceramic piece he had made into the window several times and punched a big hole in the back of his door (again). I wish he would have smashed the old computer in his room. Then I wouldn't have to deal with husband being mad that he had to replace another window. Which he didn't even want to do. I told him he needed to remove the glass because Holland was starting to pick pieces off and saving it for his spear to injure deer in our backyard. Our doctor said we could increase on of the meds he was on and that should help slow him down. Which sounds really awful when you just hear that. But after being hit, kicked, spit on, called names and yelled at, then having him break a window, can't say I'm complaining about the slowing down part.

I also have made many phone calls trying to find us more help. My insurance doesn't cover any kind of day treatment program and I doubt any in-home assistance. I have several calls out to county agencies seeing what we qualify for. Hoping we can get some respite in-home care because if this doesn't get better, I'm admitting myself into a hospital to be taken care of.

This Guy Needs a Review

And I'm just the person to give it to him. After two sessions with who was supposed to be the new psychiatrist treating Holland, I decided I AM a pretty good judge of character. I didn't really like him the first time, but people encouraged me to give it a second chance. Mostly because of the hospitalization issue, but also because we just don't have anyone helping us right now.

After the first appointment, I immediately made a second appointment so our interpreter would know her schedule. It was more than two weeks away. Then the major melt down happened and I didn't know what to do, so I called this guy's office hoping to either get some really good advice or an appointment sooner than our already scheduled one. The soonest they had was for a week later. She told me to "take care of the interpreter" for her. I didn't bother telling her that I wasn't going to get an interpreter. Super Hero had been taking so much time off from work to see Holland at the hospital, the first doctor's appointment, etc. I didn't feel he needed to go in with me (seeing as the then third appointment would also be with an interpreter and I didn't want to cancel that one). On Wednesday night when I left the hospital I spoke with the doctor and they wanted to keep him until Friday to be able to monitor his sleeping and the reduced med in the morning. So I was expecting to have him come home on Friday. Thursday morning (the day of the appointment I was to have with the psychiatrist), the hospital calls and says, "come get him." They had 5 new kids come in the night before between the ages of 9 and 11. They just didn't have the staff for that large a group of younger kids and Holland would be doing nothing productive for that time.

Big quandry here. I was supposed to drop my kids off at my mom's and drive up to Portland for this appointment. There was no way I could keep the appointment and pick up Holland from the hospital. I called the doctor's office and pleaded my case. I just couldn't make the appointment. Under the circumstances, would they not charge me for a late cancellation. No. Doctor's policy said I would be charged $130 for a canceled appointment. I couldn't believe it. They have no feelings. No empathy. I would understand it if I canceled and it wasn't an emergency. But I wasn't running off to the beach. So I emailed Super Hero and asked him if he could go to the meeting for me. No interpreter. Last minute change. We both thought a $25 copay sounded better than $130 for no services received. He came home with a bunch of paper work and items the doctor requested. Interestingly enough, he requested the discharge papers. Which he would have had, HAD HE WAITED FOR ME TO BE THERE. This guy is unbelievable.

So, now we're up to Thursday, yesterday. Scheduled appointment with the interpreter there. We arrived early. We waited 10 minutes past our appointment. No explanation. No - "doctor will be with you shortly." Nothing. Then when we get into his office, he starts directing everyone where to sit. Now first off - he knows nothing about deaf people and their needs. His office staff wondered why I couldn't just "sign" for him. (They even said 'well, if you REFUSE to do that, I guess we'll get one.') The interpreter and I just looked at each other. Usually people are very accommodating and ask where would the best placement be. But not this guy. He states "I prefer all my vision to be in THIS direction, mostly." He wanted the interpreter to sit next to Super Hero. Excuse me, hearing person who knows nothing about deaf people. If a deaf person sits next to the interpreter, then he can't see you and her at the same time. We finally got it figured out (I figured out that this guy liked to be in control and have his needs met. It mattered not one whit if we were comfortable. Super Hero and I were not sitting next to each other. Calculated move on his part.)

He starts going over paperwork from the hospital and says right away that he doesn't understand the diagnoses. I was told it wasn't bipolar. But I was also told that insurance companies don't like the diagnoses "severe mood dysregulation". So I was sure that this doctor felt it was better to put bipolar so our insurance would cover it. This new doctor says "That Crombie just likes to make up his own diagnoses to fit whatever he wants." I just sat there stunned. Who talks about a colleague like that? More talk about what Holland did in the hospital. He threw a chair. I knew that he had trouble a couple nights. Separation anxiety from me. Not wanting me to leave. Threw a chair? I doubt it. Knocked it over? More likely. He goes through the list of grievances and the whole time, he's very condescending about it. Like I didn't already know that Holland had problems and how bad his behavior could be. This guy needed to tell me again how awful he was. The killer part came, though, when he said something about the meeting last week with Super Hero. He said "it's too bad you chose not to take care of that." (meaning me getting an interpreter). Again, stunned, I sat there. Then I had to ability to say, "There wasn't anything to "take care of." I wasn't planning on having my husband come. He had missed so much work with the first appointment and all the times coming to visit Holland in the hospital that I didn't find it necessary to have him be there a third time. Knowing that we already had this appointment scheduled. Your office told me I would be charged $130 for canceling and I felt that $25 was better than $130 for nothing." Then he says, "Well, it was about 15 minutes of productivity." I said "good, at least you got something done." I really can't believe I was able to utter any words. I have never been so insulted and belittled in my life by a professional like that. There were many other things he said. Off-hand remarks about things, like "even though you are a saint, even YOU can't do everything." Believe me. It wasn't a compliment the way he said it.

At one point after reading through parts of the report, he tells me that Holland's reaction to being there was NOT normal. He told me that 90% of kids who come in do not have the severity of adjustment issues that Holland did. I said, "you mean that kids aren't scared and don't react that way?" No, he said. The only explanation for that is that this guy is talking about drugged up, comatose kids. Because there's no way on earth, if you dropped a kid off at a hospital, and said, you're staying and I'm not. Here are some security guards that you don't know, look really scary and you have to go with them. You're telling me that it's not normal to freak out about that?

He also requested more testing. I'm sick of testing. Holland's sick of testing. I said I didn't think the psychologists at his office were covered. "That's going to be a problem." he says. I said, "I'm sure my insurance has psychologists in-network." "yes, but then I wouldn't just be able to talk to them. I would have to wait for their report." Oh. So sorry that you're inconvenienced by all this. What can I do to make it easier for you? (that's what was going on in my head. Really wishing I had said something like this.) I knew within the first five minutes that hell would have to freeze over before I went back to this guy. I offered very little information (didn't bother telling him about the meth use. Why give him the satisfaction? The egotistical jerk didn't need any more pats on the back). I just nodded and took the prescriptions (he gave me a year's worth of refills. He has some major confidence in himself). Then when I got out into the parking lot, the interpreter and I just looked at each other, stunned. Then we both signed "jerk, with a capital J".

So that's why I need to write a review on this guy. People out there need to know that this person is a horrible doctor. Has horrible 'bedside' manners. Doesn't care about people and has been in the business so long, he's right and doesn't need to listen to the parents or care about their feelings.

There is a light shining dimly at the end of this hellish tunnel. On Monday, Holland and I have an appointment with a Nurse Practitioner that the social worker at Emanuel recommended. She said she's even better than most doctors (after seeing this guy, I don't doubt that.) She can prescribe medications and also will do counseling. And she's close by. No more four hour productions of dropping off kids, fighting traffic to and back. And you can look for my review of Dr. Turner from The Children's Program in Portland, Oregon, coming soon to a yelp app near you.

Wednesday with Holland

Today I got a late start and didn't get to the hospital until close to 4. Traffic was horrible. Car on fire on I205. Major construction on MLK. Four lanes squished to one for a few blocks. Took me close to an hour to get there. As soon as I walked in, he announces that the doctor said he could leave. I didn't really think this was accurate because he tends to hear things the way he wants them to go. When the doctor did come in to chat, he said that they talked about Holland leaving on Friday, so I understood why he got excited. All he heard was "go home". So he was a bit upset. He's also not eating. They've started to monitor his caloric intake because they don't want him to lose weight. I know it's just because he doesn't like new things. The hospital did a fantastic job with all the gluten free food, but with Holland's issues, I'm really not surprised he's not eating it. They did start offering him Boost drinks and I had given him those before when he went through a spot of not wanting anything at home. I've also brought tons of food he likes: gluten free bread I made; blueberries from our garden; snap peas from Aunt Heather; strawberries; cantaloupe; cherries. He loved it all and that ended up being his dinner.

The bad thing about not being able to leave tomorrow is the social worker can't meet until Friday. So he has to wait two extra days until I can have an exit meeting with her. Totally not good. My dad's birthday is tomorrow and when he found out he might be missing a party, he got really upset. They talked about doing an hour pass, but getting him back into the unit would probably get ugly. I see no reason to make him go back. Once we leave, that's it.

So far the doctor has eliminated or reduced with the intention of eliminating, 3 meds. So happy about that. Simplify. And since we are treating Severe Mood Dysregulation instead of Bipolar, I think the treatment is going to be way better. Tomorrow I'm meeting with the psychiatrist that Super Hero and I met with a few weeks ago. I don't plan on continuing that relationship, but the social worker thought it was very important to meet with him since I already had the appointment. I still have not had a chance to call the nurse practitioner that was recommended. But what can I say? The hospital staff lock up my purse and phone and I'm without technology (and bored!!) for 6 or more hours.

Updates Galore

I guess I thought I posted about our doctor troubles, but I looked back and saw that I never did. I deja-vued Twitter. Or Facebook. Or the mom board I'm on. I'm getting old if I can't remember where I write something. Or I have too many places that I can write.

A few months ago I got a letter from the psychiatrist Holland has been seeing for over 4 years that he was closing his practice. He was taking a new position in another state and wished us well. He gave a few names of doctors he might recommend (no doctor ever should have to commit to any advice, you know). But all of those doctors were either not on my insurance list, were full and not taking new patients or didn't think they could help us because we were too complicated. I so misunderstood what a psychiatrist does. Someone might want to add a definition to Wikipedia so we lay-people can understand their job. After calling about 8 different doctors, I finally found one that was on my insurance but couldn't see us for a whole month! Ridiculous. The mental health care in the U.S. is appalling if I can't get an appointment for a month. And he also didn't want to see Holland first. He wanted to see Super Hero and I. So then I had to call around for an interpreter ("why can't you interpret? You sign, don't you? Well, okay. If you're refusing to do it, we'll find someone".) I just ignore people who put it this way. They are clueless and me trying to educate them will just frustrate me more. After 45 minutes of talking, explaining, answering questions, he tells me it's not bipolar, but looks like results of meth use in-utero. He said lots of babies born in Portland have moms that used meth. I explained our son was born in San Diego. Whew! We're in the clear. Turns out, he was exactly right. I contacted the gramma and found out that in fact she (birth mom) had used meth and probably other drugs (but she would never admit to them).

So skip forward about 2 weeks and I've hit my limit. I tried to take him to his new summer school program. Sparing the ugly, ugly details, I had to call the police and then my sister and I ended up driving him to the emergency room to have him admitted for observation. My intent was to get him in inpatient care and the only way to do that is through the emergency room. It was a horrid 5 hours of sitting, waiting, filling out paper work and Holland begging to go home so he could swim in his aunt's new pool. When we finally found out he'd be able to be admitted, it was 10 p.m. He was exhausted. I was exhausted. And then I noticed 2 big security guys come into his room. They actually had to use big security guys to strongarm him over to the pediatric psych unit. That was the most horrible day. But I had run out of options. There are really no options left when you have to call the police and take your son to the ER in hopes they see a need for inpatient care.

He's been there over a week. And apart from yesterday's little encounter with an on-call nurse, the staff have been wonderful. His inpatient psych is smart, to the point, doesn't mince words and lets me ask any questions I want to. The nursing staff is friendly, patient, and respectful of Holland as a human being. The only problem we're having is food. He won't eat anything they've given him. The dietician and I worked on a gluten-free menu that was great. Lots of options. Food did not look like hospital food. I've wanted to eat most of the meals. They've resorted to giving him protein drinks and said I could bring in anything I wanted. So today I'm bringing in his GF oatmeal, lots of fresh fruit and veggies and I also made GF bread that he's been munching on.

I don't know exactly when he will come home. They've adjusted his meds and want to make sure he's on good doses before they send him home. They've given me lots of doctor resources and counselor's names that hopefully I will find someone wonderful and close by. The first few days were the worst. I couldn't even say goodbye because he got upset, anxious, mad that I was leaving. But he's been better the last few days. Knowing that I'll come back. Now he just needs to make the connection that when he's finished doing what they need him to do (group meetings, individual counseling) he can come home. His lack of executive-functioning is not making that connection. Pray that he will just make a compromise and talk so he can get out of there quicker.

Hard News

Want to know what it feels like to get punched in the stomach? Have a doctor tell you your child shows the symptoms of a meth baby and he doesn't think that he is bipolar, which you've been treating with toxic drugs for 5 years. Then get word that in fact, birth mom was taking meth and probably other drugs as well. Any treatment now is useless. He will not get better. Drugs will not help his underdeveloped brain. I don't see how I'm going to be able to do any type of discipline knowing his brain is damaged from drugs.

Romans 8:26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express.

The Dog

Well, instead of paying for medical necessities, I'll probably be paying for my neighbor's dog to get its leg fixed. Today after lunch I gave Holland permission to go outside and play in the front yard with the neighbor boy. A while later, I got a call from my neighbor across the street. She wanted to know if Holland knew how her dog got hurt. I didn't even know he was in her yard. Apparently kids migrated over to her yard and there were probably 6 or 8 kids in her yard. They were running around, playing with the dog. When she went back there, the dog was limping. She asked him about it and he said he was petting the dog, but he didn't know how the dog got hurt. I got two more phone calls asking if he remembered anything else and I kept saying no. We already knew his memory is terrible. Then I get a call from the husband saying that one of the neighbor girls said Holland was chasing the dog and jumping on it. She is the only one saying this, but what does that matter? They assume that Holland is the one who did it, so I'm sure I'll be paying for this. At least if it was a person that got hurt, I'd only have to pay for what insurance didn't cover.

So not only is he destroying my property but now this involves the neighbors as well.

Shriners: Part II

I blogged awhile ago about Egypt getting into Shriners for her arthritis. There was this whole application process and when we were approved, we went up to meet with the doctor to determine if she could be helped by their services. It was determined that yes, she would. I thought I would continue with them, but after trying to get ahold of the case manager to make another appointment, I felt weird because they saw that I went back to our original doctor. We had already made a follow-up appointment before the Shriners appointment, so I just kept it. The case manager says, "Well, are you using his services or ours? There should be only one doctor handling this." So I felt weird. I should be able to go to any doctor I want, so I stopped going there.

After finding out Holland's orthotics were going to cost us $500, I decided to give Shriners another chance. I applied for care for his spina bifida and hopefully they will determine that all his leg problems, etc are caused by that. Otherwise we can't get help from them. We got an approval letter in the mail and have an appointment in August. Now I have to call all the doctor's we've seen over the years and have them send copies of all the x-rays, CAT scans, surgeries he's had.

Whiplash

I'm inventing a new medical term and calling it "Emotional Whiplash". Holland will swear up and down that he will do such-and-such and then when we get there, he refuses, cries and panics. This has happened several times the past few weeks and it's driving me crazy. This week I've been taking Romania and Egypt to a VBS at a church near our house. Holland went last year, but I ended up sitting in the classroom the entire time because he didn't want me to leave. This is his last year participating and I thought for sure he'd want to do it.

Monday: he promises he'll go, looks excited, we get there and he gets this panicked look on his face "I don't want to stay, I'm homesick". Fine. We leave.

Tuesday: he promises he'll go, looks excited, we get there and he gets this panicked look on his face. Are you sure? Yes, I don't feel good (always his way out of something he doesn't like or can't accomplish)

Wednesday morning at 7.10 am. He comes into my room and says he wants to invite the neighbor boy. I said it's too late to invite him. No, no, He assures me. I asked him yesterday and he wants to go. I said - "but you won't want to stay. We'll get there and then you'll change your mind." "No, I promise. If Stephen goes, I'll want to stay." Me to myself 'yeah, right'. He and Romania wait outside on the porch swing for 30 minutes waiting for the neighbor boy to walk over and we could leave. He seems excited. He even grabbed two bananas and a gluten free bar so he'd have a snack. We get to the church. "I don't want to go in." I said you have to. You invited a friend. I walk away and take Egypt to her group. I go sit in my car and wait. And five minutes later, Romania comes out with a teacher and says "Holland doesn't want to stay." There's the whiplash. It's all day long. It makes for an exhausting day because I never know what I'll be able to do.

Basic Skills

This morning I visited the school where I want Holland to attend next fall. He's been staying at my mom's house for a few days and I took Egypt with me to observe the class. I really liked it. They use a lot of the same curriculum I use; they're a Christian school that's is located very close to me and the instruction seems great. The morning teacher uses the Orton-Gillingham method that I've been looking to get my hands on for Holland. This was the last day of school, so it wasn't really a normal day. But the kids are all very respectful, they stayed on task, the teacher had no distractions from the kids while teaching. The afternoons would be spent doing science projects, art projects, etc. It's four days a week from 9-3.

Oh - and it costs $500 a month. I don't have $500 a month. Pray for a miracle!

So. Holland endured 8 hours of testing. We found out his orthotics could cost $500. He has constant abdominal pain from impacted bowel. His legs hurt everyday from not having orthotics. His hips hurt. And I just got a letter from the psychiatrist we've been working with for four years. He's closing his practice and moving to Vancouver to be the head of some program up there. I have a month to find someone to take his place that we like, that's on our insurance and is reasonably close by.

Whats on the agenda next? I think I'm done with all the depressing, frustrating, unfair events. What good could possibly come out of this?

Orthotics and the Testing

Holland had two more hours of testing this morning and it went well. He got to work with the same guy as last Friday - lots of hands on, memory games, sequencing stuff. I used this time to make a bunch of phone calls to get Holland an appointment for new inserts for his shoes. He has very flat feet (almost no arch) and his ligaments are very weak. Not only is he pidgeon-toed, but with weak ankles, he rotates his foot inward. It's very painful and his legs hurt him every day.

I found out that our new insurance coverage for orthotics is just lousy. Our deductible is $500. The insurance we had last year covered almost all of the orthotic and they only cost about $90. If I was smart (and could predict the future) I would have bought another pair last year so I wouldn't have to pay $425 for these. I chose to go back to the place that did his first pair. (She's also the one that did Egypt's shoe lift for her arthritis - gee, I'm giving her a lot of business!). So I like her and don't feel like using up energy to get the pre-authorization to go somewhere else. My insurance requires a doctor's authorization and the clinic where I was planning to go requires the doctor to set up the appointment. It could take months to get in with these people. It wouldn't matter even if I went to the preferred provider because my deductible is so high. So, now I gotta come up with $425. This means that I won't be able to have any testing for dyslexia done.

I called several places last week to find out about testing. The first place said they do two tests and it will run $800 for both. That includes a report (how generous!) and recommendations for tutoring. So after all that testing is done, I will still have to pay for private tutoring. I heard back from another place today and she at least said they would want all of his testing scores. Then they could get a clearer picture of patterns in learning and then I wouldn't have to pay for duplicate testing. It's so frustrating that the school will not test for dyslexia. They don't consider it a learning disability. And insurance doesn't cover anything like this. How do people afford this? It's obvious I should have been a speech pathologist, a psychologist and learned the Orton-Gillingham method so I wouldn't have to pay anyone to do that.

Four Hours Down, Four To Go

This past week Holland had 2 sessions of testing with two different people. During our initial meeting, the testers asked if there were any motivations that he would need. I said, oh yes. He's motivated by money - it's his 'love language'! I told them about the weekly "yes, mom" contest we'd been doing and said I'd bring in the poker chips and they could give him whatever they felt he earned for the work.

The first test was on Monday and after arriving and sitting down for about 2 minutes, I could tell it wasn't going to go smoothly. He already complained of being too tired and not wanting to be there. I had Egypt with me and just assumed I'd be able to drop him off and run errands with her. Well, he wouldn't even leave the office to walk over to the testing area. He was freaked that I was going to leave him and started to cry. The tester looked at me and mouthed "it's not worth it to continue if he does this." I told her it wouldn't matter if we came back - he'd still feel the same way later. I finally was able to convince him to at least go look at the room where he'd be so he could be familiar with it and ready for when we DID come back to test. He wasn't cooperative, but managed to show some interest in all the cool toys she had in her office. After about 10 minutes, he finally warmed up to the idea and Egypt and I sat at a table for two hours, right outside her office. Big window and all so he could see that I never left. I was totally unprepared to entertain Egypt for two hours. Luckily, she had these cool magnetic shapes that she played with and I let her play a few games on my iPhone.

He finished the testing and earned 5 poker chips. On Friday we went back for two more hours of cognitive testing (Monday was for reading and writing). I had to drop Egypt and Romania at my mom's house because Romania didn't have school that day. Holland was less thrilled about me leaving the testing area, but due to confidentiality reasons, I couldn't sit in the outer office because there were other kids being tested. Holland reluctantly agreed and I sat in the main hallway for almost 2 hours. This testing was more fun for him - matching, sorting, manipulatives, games. It didn't really feel like testing to him, so he had a good time. He earned 6 poker chips today and the tester even showed him how to play poker during their break.

This week he has one more session with each tester. Then we will schedule a meeting to discuss the results. I did talk to the language tester and voiced my concerns over the possible change in disability status. She said that if the paperwork would have crossed their desk without prior approval, they would have red-flagged it. She said they take those labelings very seriously. And the woman that wanted to change his status didn't even have the authority to change it on her own (how was I to know that?). But that's good. At least I know that more than one person involved has to know what's going on before a huge decision like that is made. She did tell me, based on her first session, that he didn't strike her as MR. He has obvious reading and writing deficits and the bipolar adds a huge variable to that ability to learn something. It was hard for her to know if he would have performed better if she had pushed him more. But he gets frustrated so easily when he's forced to do something he's not good at. (aren't we all??!)

I also called a Parent Advocate place this week to find someone to go with me to the IEP meetings. I'm not sure how helpful they're going to be. They aren't allowed to interject their opinion. They are there to take notes and help you voice your opinions and ask for services. I asked the helpline if they would be able to steer me in the right direction for services and she said no. Added to the befuddled mess is the fact that I homeschool and not all of their advocates know much about laws pertaining to homeschooling and IEP's. Great.

New Tests Scheduled

I had a really good meeting yesterday with the special ed people from the district. These are the same people that tested Holland 3 years ago when he was first put on his IEP. They are competent, thorough and mindful of his limitations regarding duration of testing. We have scheduled 4 sessions, each 2 hours. I've got it all figured out how I'm going to motivate him to make it through the hours of testing: poker chips.

My sister started this "yes, mom" contest at her house about a month ago. Every time a kid utters the words "yes, mom" and does what was asked, they get a token put in a jar. I've set up jam jars in my kitchen window and bought poker chips for tokens. Each kid has a different color, so there's no swappin' going on. The first week Romania won. Then Egypt won. The third week, Holland had it in the bag. But after a disastrous day and behavior that would have scared the socks off anyone watching, I removed half of his tokens. I didn't want to to it. I wanted the tokens to reflect the positive behavior and what good things he was doing. But I just couldn't let this go by. As it turned out, Romania and Egypt tied, so I took them out for a quick treat of ice cream at McDonald's. From his reaction, you would have thought that I'd
killed a pet or something. Ice cream made him physically distraught. I thought he was going to throw up and I prayed that he didn't destroy anything while I was gone.

So next week, I'm giving poker chips to the testers so they can reward Holland during the testing. Hopefully he'll rack up a huge number of chips and run away with the win. At some point this all has to get better. The tension in this house makes me want to crawl back in bed everyday. If I didn't have to take Romania to the bus, I probably wouldn't get out of bed every day.

Why Tests Are Bogus

A lot has happened in the past month. Holland finished all his OAKS testing, did all the testing for his IEP re-eval and we got all the results. This is probably why I haven't posted in almost a month. Hard to believe it's been that long since I've had something to say. I actually have lots to say, but just having a hard time saying it.

Someday when the kids are grown and I have no purpose, my purpose is going to be a parent advocate for parents at IEP meetings. I have 3 years of experience with IEP's on the other end: I wrote them for all my deaf students. I sat in on parent meetings and told of the student's progress. I answered questions about goals and test scores. But that didn't prepare me for what happened at my IEP meeting. After cramming what should have been 8 or 9 hour's worth of testing into 6, I went into this meeting hopeful about help I was going to get to help Holland learn to read. I was going to assert myself and straight out ask for what I needed. I'm kind of an oddity to them, I'm sure. I homeschool my kid and he's on an IEP. No one knows who legally is required to help me. The charter school he's enrolled in doesn't have the resources (no on-site resource teacher) and the district says he's not enrolled in one of their schools to help him. Makes you want to scream.

But the fact that I didn't have someone on "my side" sitting with me while the tester told me that my child is no longer considered "learning disabled" and they want to label him "mentally retarded" was something that I couldn't even comprehend. Who would ever think that this incredibly curious, hard-working, industrious kid would ever test as mentally disabled? She started out by telling me that "she believed the test scores to be accurate and valid". It didn't matter that Holland had never met her, she was 30 minutes late to our first meeting, he refused at first to even cooperate and wouldn't work if I wasn't sitting in the room. The second session was spent playing tag. We went to the tester's school and she came to ours. Fourty-five minutes of waiting for her to show up and then she did more testing. The last day we tested, I had all three kids with me. By the end of the session, he was so wiped out that he refused to go on. She had to bribe him with an ice cream gift card. Then she has the nerve to tell me she believed her results were "valid".

The only thing that saved me was hearing my ES remark that the test he was given for this was not the same IQ test he was given 3 years ago. I was so upset, I didn't even catch that. I immediately said I wanted the same test done. We weren't comparing apples to apples. They wanted me to sign something that said I agreed with their results and we would change the IEP accordingly. Guess what? I refused to sign it. I was bawling almost the entire rest of the meeting (which was almost 2 hours). They kept talking like it was a done deal and at one point I remember saying very loudly that he wasn't dumb and I was not going to let them label him as MR. I said that he's already in the system, why does the label need to change. The director said that it more "accurately describes him" to people that would be reading his IEP for services. I said no it didn't. That any IQ test they gave him would not consider any of the amazing science things he does, or what he builds after he takes something apart. He has working memory problems, probably dyslexia (which they don't even test for) and trouble organizing multiple things in his head. All things needed for reading, he struggles with. I do not believe for one second that this is a child who will never learn more than he knows now. He has auditory processing issues that need to be dealt with that they aren't dealing with.

They started talking about programs in the district that would help him. They want him to be in a life skills class. A life skills class would teach how to tie your shoes, or write your name and address. This would not be an environment that would foster his curiosity, let him explore and create, let him discover things. Here at home I push him. I make him write things that he doesn't want to write. These people probably think I am wasting my time teaching him any math beyond simple addition and subtraction, or reading about history or our science. How could I ever consider putting him in a class like this? It would destroy what learning ability he does have because they would have no expectations. Why would they care if he knew about our solar system, or Lewis and Clark or how to skip count by 9's?

I've researched online about parent advocates for IEP meetings. I still haven't figured out how to get one. But I know that no parent should ever feel what I did when I was blindsided in this meeting. I'm still waiting to hear from the special ed department about further testing. I said that I wanted several more tests done before I'd sign anything (and I still don't have to agree with their label). Everything happens at a snail's pace in the world of education. It's very frustrating that this hasn't been figured out and he's in 5th grade. I keep imagining him in 6 or 7 years and feel like time is running out (or it's already too late) to help him. Books I've been reading say 10 or 11 is pretty much the age that a child's brain connections are all made. We had time up until this point to grow those areas and make new connections, but they are wasting time.

By the time he gets the help he needs, he'll be 18. He'll be 18 and won't know how to read.