Wednesday, April 30, 2008

It was an extremely rough afternoon. I was detoured through the subdivision by our apartments this afternoon. I noticed that someone had put out a box of books for the trash. Being cheap, and loving books, and not above going through someone else's trash I might add, I stopped to browse the books. Anyway, I found a book that my daughter likes (Wishbone) and a kid's book about trains. I was pretty sure that my son would like the train book. I was Wrong!! He took a look at it and decided he didn't want the book. That was fine with me. However, he also decided that we had to return the book immediately. He didn't just want to return the book but also pick a different book. Remember it was trash day so finding the house after the trash was removed would have been impossible even if I was going to return it. I told him where I got the book. He first wanted to go to the house. When I told him that it was trash day and the books would already have been picked up, he insisted we go to the dump. I have never seen him quite like I did today. I'm used to the screaming. Today he screamed; he climbed up on me; he swung his fist at my arms and tummy; he tried to bite me - I caught his mouth just in time; he put his hands over my mouth when I tried telling him no; I removed him to his room and he immediately grabbed my legs nearly tripping me and then he crawled into the hall; he grabbed my computer chair (while I anchored myself with my feet) and moved me around. I've never seen him so violent. I just wanted to cry - and did when my husband came home from work. Is this what I'm going to have to deal with? Is this normal for a child on the spectrum?

Tuesday, April 29, 2008

Well we made it back Sunday afternoon from the funeral. The family seems to be dealing pretty well with the loss.

While in Colorado my daughter's glasses broke. We're not talking about a lens falling out or losing a screw. No, these glasses broke right down the center of the nose piece so that her glasses were literally split in half. She had cataracts as a newborn and had her lenses removed at a few weeks old. So, because they broke on Saturday and we didn't get home until Sunday, my little girl had to go practically blind for nearly 2 days. I felt bad for her but she adjusted and coped really well. She wore an older pair (I think they were actually Deklan's but their prescriptions are fairly close) Sunday afternoon and yesterday to school. I took her this morning to the eye doctor - she has to go through the eye doctor's office because of the prescription of her lenses. Amazingly, they had an identical pair in stock and were able to switch the lenses straight across without sending them out to a lab for 3 weeks. Thank God.

Monday, April 21, 2008

I haven't really told about Deklan's ASD so I'll do it now. Let me start with some history. Deklan is the youngest in a family of five. He has two older sisters, Dakota (Kodi) and Hayleigh (Hays). He is currently five years old. He's a good boy; very attached to mommy. He weighed 10 pounds and 1 ounce at birth which required an emergency C-section after nearly 17 hours of labor (water broken for about 14 hours) because his head was too big for the birth canal. No, there was nothing abnormal in the pregnancy - no diabetes or anything. The only thing that did happen was that I had a bladder infection at 22 weeks and had serious contractions until the docs got me on antibiotics (about 3 days). Other than that, I retained fluid like crazy. Thank goodness he was born in August because I couldn't wear shoes for the last three months of the pregnancy - not even to work (gotta love my boss letting me go without shoes, but I did wear socks). Deklan was a little blue and had to have oxygen for about 10 minutes - maybe less, I was pretty out of it by then. Deklan and Hays were both born with cataracts. They each had eye surgeries to remove the cataracts - this is removing the lenses, not laser removal. First, the right eye; two weeks later, the left eye. Hayleigh had to have a 3rd eye surgery to remove some filming of the right eye. All these surgeries were done by the time they were 8 weeks old. So of course he has vision problems.

It seemed like he never slept unless someone was holding him. My mom lived with us for awhile when my dad passed away (same time as the bladder infection). Mom moved to Oklahoma, where she and my dad were going to retire, when Deklan was one. She was a blessing. She would spend hours rocking Deklan because he would only sleep about 6 hours a night and only took a couple of 5-15 minute naps during the day. By the time he was one and 1/2 he wasn't napping at all anymore.

Anyway, we've had some difficult things happen since his birth. One being that, due to finances, we could not afford a day care/babysitter while my husband and I both worked - which we had to do in order to pay bills. We lived in Colorado at the time; we live in Kansas now. Anyway, due to the circumstances, he and my youngest daughter went to Oklahoma to live with my mom during Hays' kindergarten year. He was only 1 and 1/2 at the time. (And do you know that he even still remembers being at Nana's? Details that I sometimes have to ask Nana about so she can confirm them, which she does.) When he was two, almost three, we had to bring him back to Colorado for a third eye surgery. This time his eyes were crossing and needed surgery in order to relax the muscle of the eyes. He stayed with me after that. We were already planning on moving to Kansas by this time. That's not what set Deklan apart, that's just to let you know his background which I will probably refer to during the rest of this.

Here's where Deklan shows signs of being different... We sometimes thought he had a hearing problem because he wouldn't respond when we would call his name. He explored everything and loved to climb. There were many times we would have to pull him out of the window or down from the couch. He started pulling up and walking with use of the furniture when he was 7 months old. He wanted to touch everything. (We assumed this was due to his vision problems. We had experienced that with Hayleigh, but not to that great degree.) When feeding, Deklan would grab our faces and pull us to him. Again, assumed vision problems. (I should say that, due to his size at birth and difficulties after my C, he was bottle fed. He was always hungry - he ate 6 ounces in one setting when he was only three days old.) Anyway, he started baby babbling from the time I can remember. I remember his first word was DA-DA, but can't remember his age. Although he did eventually develop a very good vocabulary, the babbling continues on. He did and still does sit and talk to himself for hours - sometimes just making sounds that don't make sense to anyone but himself. He was a great little one. He didn't require any entertainment. He could do that himself for hours at a time and we'd never hear a cry from him (babbling yes, crying no). I thought he would never be potty trained. He still has accidents but we've learned to deal. He always wets the bed and has to wear pull-ups at night. It's the bowel accidents that are the hardest to deal with. Now, at this point, I have to clarify something. I had no idea that anything was wrong with him. I knew he was different but I only had girls to compare him with. My family started referring to his "quirks" as "Deklanisms". The only thing that irritated me was when I'd talk to him and he'd seem to ignore me. When I got his attention - usually by walking in front of him or getting down eye to eye - he always had an answer for me. There was no need to even repeat the question.

"Deklan, do you want some milk?"
No answer/acknowledgement.
Getting down to eye level in front of his face, "Deklan, I asked you a question."
"No Mother, I do not want milk." or "Yes Mother, I do want milk."

(For two years I was always Mother. Now it's usually Mother but sometimes he slips in with Mom and, on rare occasions, Mommy.) One other thing that irritated me... if I was busy doing something else and he wanted to talk to me, he would grab my face with his hands and bring my face to his to talk. I don't know if he was just mimicking me - I didn't grab his face, but I did get in his face so he had to look at me when he was ignoring.

This pretty much brings us to last year. We had moved to Kansas and Deklan went to Head Start. He was in a pre-K program and went from 8:00 a.m. until 2:45 p.m. Monday through Friday. He loved it really. Anyway, like I said, I never realized Deklan was different from the majority, just different from his sisters. I knew that Deklan had difficulties adjusting to certain things. I knew that he didn't care for unexpected things/events. I did realize he had what I always referred to as minor meltdowns. I didn't realize that was a very real term for a lot of other mothers. I also knew that Deklan was slow. Slow making decisions; slow getting in line; slow to finish eating; slow. His teachers were awesome. They pulled me aside one day and said,
"you know, we would like to have someone from the educational co-op come in and evaluate Deklan. Some of the behaviors he exhibits is not really normal for a child his age."
"OK - what do you think it is?"
I knew he was very intelligent for a 4 year old, a little eccentric maybe, so I didn't think there was a mental problem to worry about.
"We think he may have Asperger's syndrome. It's a form of Autism."
Sound of a mother's breaking heart here.
"Autism? Isn't that a severe mental/emotional disorder?" Forgive me here. My only insight into Autism was the movie Rain Man years before.
"No, it actually cover a large range of spectrum disorders. Asperger's, for example, is a very high-functioning form."
"Ok - what do I need to do?"

Thus began our journey. Since this is such a long post already, I will pause at this point and continue at a later date.

Bad News and Great News

Bad news... my sister-in-law passed away over the weekend and we will be leaving tomorrow to go to the funeral.

OK, the great news... We got Deklan's IEP!!! I'm so excited. I've been attempting to get something set in place since September when he got his ASD diagnosis - so, basically, the whole school year. His IEP reads something like this... special ed services inclusive in his gen ed class (with a secondary for vision). Thank God it's over.

Saturday, April 19, 2008

Today is a beautiful day. It's nearly 75 degrees and feels wonderful. I took the kids for a picnic in the park. We made sandwiches, took a bag of Doritos, and snack bags of animal crackers. When we were done eating, they got to play on the equipment. For a little bit they were the only kids there - I like it that way because I don't have to worry about Deklan (or bullies). At least I'm not cranky today like I was on Thursday. :)

Before school yesterday I took Deklan to McDonald's so he could play in the playplace - his new favorite place/thing to do. We ran into a classmate of Deklan's while there. The mother and I started talking and found that we both have a lot in common with our little ones. Her son is on the list to be tested for Asperger's. She's been fighting her way through the school system for the past several months. My son was diagnosed Autistic Disorder Spectrum in September. I've been fighting with the school system since then to get Deklan's evaluations and IEP into place. I've filled out paperwork and had meetings and finally I told the psychologist that I was tired of pushing the issue. Deklan is in 1/2 day kindergarten - averages to about 3 hours and 15 minutes a day. I told her,
"I'm done pushing the issue for this year. His teacher sees him 3 hours a day. Next year, he'll be in school full day and by two months into the year his teacher will be pulling her hair out. She'll be begging you to do an evaluation and you'll see what I've been talking about all year. So, do whatever you want this year because next year he'll be a problem and you'll have to take care of it then."
Probably not the best attitude to have but, considering she had the paperwork/diagnosis in her office three days after seeing the psychologist (KU Med center in Kansas City) and we still haven't really seen any results, I am tired. Guess what? She decided that we should go ahead and do the evaluation and see about an IEP before the end of this year. There's so much to this that I'll have to blog about that later. Anyway, our official IEP evaluation is scheduled for Monday morning. I'm wondering what they'll decide. I'll post Monday afternoon or Tuesday to keep you up to date on that situation.

I talked to my mom yesterday on the phone. She lives in Oklahoma and, ok, I talk to her nearly everyday but yesterday was different. I must have talked to her for nearly an hour and we laughed nearly the whole time. I am so sarcastic and yesterday I was on a roll. I started by telling her about how cranky I was on Thursday. And told her about being aggravated at my hubby. A little back ground here... I have an aunt that believed that something would happen to her son while he was sleeping unless he slept with her and my uncle. Understandable - for someone under the age of 10. Once he hit teenage age you'd think that would just be weird. Anyway... on Thursday, after letting my little one sleep with me, I was not in a good mood for lack of sleep. I told my husband the next time I decide to do that to move Deklan to his own bed anyway. His comment was, "Whatever... Aunt Mary." I was so mad at him for that because he knows how I feel about that situation. Then he got onto the girls for not cleaning the extra bed in their room because the bug guy was spraying that day. Which, again, aggravated me because I told them to just make sure there was a clear spot so the bug guy could reach the window. Finally, as he was headed out the door I told him to please go and spread his good cheer to someone else. I thought we'd had as much as we could take. So, I'm telling my mom all about this. She thought it was so funny for both the comment about Aunt and the comment about spreading cheer. Then we moved on to the kids. Next she told me some jokes she read in a magazine and I told some from my email. Anyway, this went on for about an hour. I love my mom.

Thursday, April 17, 2008

It's been a long week. An even longer night - my son slept in my bed with me. Considering I didn't get to bed until 1 a.m. and I think I got about an hour's sleep before he woke up and started tossing and turning... I AM CRANKY TODAY. But I'm trying really hard not to be. My husband really isn't helping either. But that's another story. Anyway, on the weekends we let Deklan sleep with his sisters if there's not a guest over. He knows the rule - Friday, Saturday and holidays only. Sunday through Thursday are school days. For the past three nights his fits have been so bad that I finally gave in last night. Bad, inconsistent mother that I am, I told him if he'd just go to sleep I'd let him sleep in my bed all night. Tuesday night the fit was so bad that I actually left him with daddy and went to the fitness club and worked out for 45 minutes. When I got home, he had just went to sleep. I just can't hardly handle these fits anymore.

We had a 3-day weekend; the kids were out due to teacher in-service. So Monday was mommy and kid day all day. It started a little rough with the girls arguing but smoothed out before we left the house. All the kids were good the rest of the day. I took them all for overdue hair cuts. Hays had long hair - almost to her bottom. She decided a few weeks ago that she wanted it cut shorter. She got a really cute cut that goes a little below her shoulders. Her hair is straight as a pin so the cut really looks good on her. Dakota just got her cut a little shorter but looks basically the same. Deklan wanted a mohawk - yes, a mohawk - but settled for short with the top longer so it can be shaped or spiked. I didn't get my hair cut and felt left out so I went and got my nails done instead. I'd worn acrylic nails since I was 17 because my real nails have always been really weak and turn under with any kind of growth at all. Last July we were having trouble financially and $15 every few weeks was even taking its toll on our finances so I cut them all off and cut my nails short. For the past 9 months I have missed my nails a lot! So now, I have my nails back and am in heaven.
"I feel pretty, oh so pretty..."
Then we went to Wal-mart and each child got one small treat. They each picked dry erase boards and markers that kept them busy the rest of the day.
Tuesday we got notice that we were going to have our apartment sprayed for bugs today. We scrambled yesterday to get the apartment presentable. We are such clutterers that it never really looks clean. Anyway, now my day is interrupted with having to be aware that the bug guy could come in anytime between 9 a.m. and 5 p.m. Not a problem if I'm not home, but since I rarely leave the house it's a bit uncomfortable. I mean, what if I'm in the bathroom when he comes? Or, on a day after last night, what if I fall asleep before he gets here? See? Uncomfortable. Well, it could be worse - we could have bugs.

Well have a good day all.

Thursday, April 10, 2008

Deklan's artwork

These are pictures of Deklan's Doggy. He made that this morning (after his huge meltdown) using paper and a pringles can. He's so proud (and so am I). He did the coloring and cutting all by himself.
Well we woke up in melt down mode this morning. Deklan was up within minutes of the girls going out to the bus. He came in and looked at me, closed his eyes and refused to talk. I tried to get him to lay back down or let me hold him and watch cartoons but he just started screaming. I have no idea what's wrong. It's been 15 minutes now and he's still crying and screaming. He's tired because he keeps yawning but he still won't talk. This is frustrating.

Ok - we're better now. The screaming went on for about another 10 minutes. Every time I would try to talk to him, he just screamed louder. I tried ignoring him but that didn't help either. Finally with a little prayer for patience I went to him (he was lying in the middle of the hall) and asked him if he wanted to come with me in the living room. He finally took my hand and went to the chair. After that, he was just fine. He watched cartoons while he ate breakfast then he went and started doing artwork. I still don't know what was wrong. He just left on the bus for school and all is quiet in my little world right now. I think I'll enjoy that peace for awhile. :)

Wednesday, April 9, 2008

This morning Deklan came to wake me up. I try to go back to bed after the girls get off to the bus - it doesn't usually work, but I do sometimes get to lay back down for a few minutes. Anyway, he laid down beside me and I was tickling him. I asked him what his face parts were and what they did. (What's this? Is that your nose? No... that's my eye. I see with it.) I got to his hair and said what's this.
He said, "That's my hair."
"What does that do?"
"It keeps my head from being bald." Um, ok, you got me on that one.
"What's under your hair?"
"That's my brain and my skull. My brain helps me think, think, think. And my skull holds my skin on my face." Um, ok, you got me again.

Monday, April 7, 2008

OK - I know it's Autism awareness month but really I just want to talk instead. Not a lot to say but that's what I want to do today - just talk to anyone who wants to listen - well, read.

My oldest daughter got an iPod for Christmas from her aunt and uncle. I did not realize how interested in it my two youngest would be. It's really amazing how even my 5-yr old can get so interested in it and navigate as well as my 11-yr old. I guess I really shouldn't be amazed by now but he still takes me by surprise almost everyday. Anyway, we got our fed refund back. After paying off all our bills (a couple of credit card bills and got ahead on some monthly bills), we decided to spoil the kids some and bought the 2 youngest iPod Nanos (and a $30 iTunes card for my oldest so she wouldn't feel abused or left out). I can't tell you how wonderful it is!! We had errands to run yesterday and we had NO meltdowns the whole time we were out. I downloaded some songs and a few cartoons (Spider-man & Scooby-Doo specifically) for him to listen to & watch on his iPod. He was so good and so inthralled with those that he didn't even mind going in the store or staying in the van that long.

Saturday morning Deklan tells me, "Mommy, when you die you'll still be in my heart. I'll visit your grave every Sunday and Saturday." I'm sure some are thinking How Sweet. I'm just thinking, Why is my son thinking about death? He's only 5. And my death specifically? :) Actually I'm sure he only thinks about it because when we go to my Mom's in Oklahoma we always visit my Dad's and brother's graves once while we're in town. He never met them personally - my dad passed away while I was 5 months pregnant with Deklan and my brother 14 months before that - but he hears about them all the time.

To mollyalexis... Thanks for inquiring about us. The kids have been fine. Friday was filled with running errands and doctor's appointments along with trying to download to the new iPods and I didn't get to even think, much less write. Then Saturday was even worse. I promised the kids that I would take them to McDonald's on Saturday - one of the few left with the playplace inside. Saturday night was fun night at my kids' school.
Sidebar here: I was asked to be a room parent for my son's class. I made the mistake of saying, "well if you can't find anyone else I guess I could do it." Stupid! Stupid! Stupid! Unless you really want to do something.. don't EVER say if you can't find anyone else... Don't get me wrong. I love to volunteer or participate when needed. I just really don't like being in charge and responsible - I'm just not creative enough to keep the kids entertained at parties or plan special things for the kids and teacher. And I'm not a salesperson so getting people to volunteer is really hard. I mean people want everything for their kids but nobody cares enough to volunteer or help out - that's someone else's job I guess. Anyway back on track, since I'm one of the room parents (the other made the same mistake I did) I ended up pulling an hour and half at one booth because we had NO volunteers to help. The other mom had to do the 2nd 1/2 - I think she ended up with one mom volunteering a 1/2 hour at the beginning of her shift. Yesterday I woke up with a headache which finally came to a full blown migraine last night. By the time I was able to lie down without feeling like throwing up it was close to 3 am. Since I had to get up before 7 to get the girls ready for school and then Deklan was up by the time they left for the bus, I'm running on only a few hours sleep. I woke up with only a small headache hangover. Of course it's beginning to pound a little right now. Again, thank you iPod because Deklan has been thoroughly entertained all morning. His sister has a speaker that works with the iPod so you can listen without the headphones. He just got out of a bath that lasted an hour and 15 minutes. (Don't worry moms - I checked the water a couple of times and it stayed warm.) Anyway it was nice - again no meltdowns getting in or out of the tub. He even let me wash his hair and body without screaming because he was listening to the music. He goes to school in about 20 minutes and I'm going to take a long nap and hope this stupid headache goes away.

Well, I guess I had more to say than I thought.

Tuesday, April 1, 2008

I just wanted to clarify something I said a couple of days ago regarding the puzzle ribbon. I, personally, am not offended by it. I think it's very cool looking because I love puzzles. I don't feel that Deklan needs to be cured but I am not offended by anyone else who does feel that way. I just didn't want to offend anyone by using the puzzle ribbon. Thanks.
Deklan told me that he loves me. Then he said the record in my head is playing the I Love you song.