School issues

Last post I mentioned school was not going too well for Max so far this year. The year started out fine. The 2 paras that worked with him last year though did not return this year. One of them was hired when Max was in 1st grade, just for Max. She was awesome and the best para. Max loved her. He was a little upset that she was not there on the first day. He got mad at me when I told him he would be with a different para. It is one he knows and works with some. This para was his first para in kindergarten but it just didn't work out!

The year was going OK. Max was in general ed classroom for about half the day and the other half in resource. I love our resource teacher so I was OK with that. However, this year I keep getting calls about Max is doing this, or Max did that, or Max won't do this, blah, blah, blah. Basically Max pushed somebody, or Max got mad when told to sit in the time out spot and knocked things off the shelve and now he won't pick it up. The latest... He touch a girl inappropriately! Yeah, he is in 4th grade. He has NO idea what inappropriately might be. He hugged a girl and, oh no, touched her chest. Yeah, on a pre-puberty girl. Then somehow his head ended up in her crotch. Yeah, what?? There was a HUGE deal about this. The girls parents threatened to press legal issues against the school. However, nothing was said to the resource teacher, the principal or me about this on that day. The following day the principal wanted to talk to me about an 'incident' that happened at school. I asked the resource teacher for a heads up and she was rather mad about the whole thing. Nobody told her anything until that day.

I go into school to talk with the principal. The whole meeting was less than 5 minutes long. The head in the crotch thing.... what a joke! The kids had been playing some old-fashion freeze tag to celebrate Kansas. To unfreeze someone you had to crawl between their legs. So when recess was over and the kids all got inside Max continued to play the game. Oh my gosh!! Maybe a little back ground to HOW Max's head got into a girls crotch before making a huge deal about it?! Seriously, just crazy.

Max also has chosen to only listen to a few people this year at school. In his defense though, right now he can barely hear a thing due to fluid in his ears. Trust me, I'm sure my neighbors will be glad when Max can hear the TV again!! (he is getting another set if tubes this Friday). So I have to wonder if they are really talking so he can hear them. Are they giving him time to respond? who knows. Is he just being stubborn? Very likely.

I'm pretty sure the principal is calling me to tell me about every little thing Max does wrong just to drive me crazy. Why would he want to drive me crazy you might ask? Because he wants Max gone. About 3-4 weeks ago we had a "team" meeting at school about Max's placement. They increased resource to all day except for specials, lunch, and recess. They suggested Life Skill classes though. Life skills is at another school. There are several in our distract so they choose which one is closest and has openings. I told them fine about resource (stupid now that i look back at that) and that I would go obverse life skills and go from there.

I observed life skill. Well, kinda. The teacher had all her students go outside for snack before I got there. So it was her tell me (and the lady from school who went with me) about how the day goes and what they do. I admit it is something Max might like. I'm sure it is something i might like too. So I thought it over. But change is hard and i figured maybe after Christmas or later in the year. Maybe next year even. Pete was more for next year if at all.

I called a few people and thought more about it. We have decided that, No, we do not want Max in life skills at this time. However, the principal is rather adamant he wants Max gone. The resource teacher told me that if I didn't make up my mind soon about life skills that the principal wanted another meeting. This was before we were sure BTW. I asked what the meeting would be about. She said the principal would say the placement where Max is currently is not fitting his needs, therefor trying to force him out.

We have a "team" meeting Thursday night. We will go in and tell them NO to life skills. We will tell them we want him back in the general ed classroom at least half a day. We will tell them we want speech increased. I will suggest some awesome seminars by our local Down syndrome guild. I will offer someone from the Ds Guild to come and obverse Max (and teachers) at school to offer suggestions. I will ask about a different behavior specialist to obverse if necessary. Our directer to the Ds Guild had offered to come with us to the meeting but it just so happens her kids conferences are on that same night. I have called the directer of special ed for our district. She acted as though there was more we could try or do before something so drastic. She also let me know the school canNOT force a move like that. Pete and I would have to agree, being part of the 'team' and all. Another higher up lady should be at the meeting, somewhat on our behalf. She does work for the school district and all. The directer said with my OK she would give the school a heads up that we do not feel comfortable with life skills at this time. School knows I have contacted the higher ups. They better not think their way is the only way! I did inform the resource teacher that we will not be doing life skills but we are going to ask for changes. I left it at that.

So why are we against life skills right now? First off we want Max around typical kids. How else is he going to see what is appropriate and what's not? Life skills classes are going to have lower standards. The behaviors he has is going to be somewhat excepted in that class. If we want Max to grow up and be around other adults who are 'typical' why not have him around them as a kid at school too? I'm not saying being in a life skills class is bad but it is not what we want at this time in Max's life.

Wish us a whole lotta luck Thursday night. And pray for Max on Friday, when he will be getting his umpteenth millionth pair of tubes!!

Down syndrome awareness month

It's already October! I am SOOOO behind in blogging.

Since my last posts were about Max's and Joe's birthdays I should probably do Sam's and Ike's too, right?

Sam turned 8 years old Aug 29. and Ike turned 4 Aug 23.

The day my baby Ike was born...

And 4 years later

The Birthday of my only daughter..

My princess 8 years later..

For her 8th birthday she got a BB gun as a present from the grandparents.
Here is grandpa showing her how to use it and giving her lots of safety tips.
She also got her ears pierced. You can notice in her 8 year old picture up there.

School for Sam is going great. Joe is doing pretty well this year as well. A different teacher can make a world of difference! Max, well, right now not so well. Ike is still hanging out with Sam and I enjoying being a 4 year old.

I'll write more about school and Max when I get some time. I promise to try to get it done before 2 months is up!!

For now hope everyone is enjoying Down syndrome awareness month!!

catch up

I cannot believe school starts in less than 2 weeks!! August 15th is the first day. It is a half day. Sam and I will start that week... probably the 16 or 17th. I have all the stuff I need (except our spelling... it is in the mail though!). However, I am not ready yet. Hopefully it won't take me long to get all set up and ready to go.

Getting up early is going to kill us! Joe and Ike have been staying up till around 3 am and sleeping in until around 1. They are training early for their teenage years! HA!! They will not go to sleep earlier even as hard as I try. So what to do? I'll have to start waking them up early so they will be tired earlier. It is so hard to wake a sleeping child when all is peaceful and you know they will be cranky all day. I plan on staring that tomorrow...

The rest of us aren't that bad but getting up around 7 is going to be torture on me! Getting up around 7:30 will be pure torture on 3 of my kids as well! Ike is still the lucky one and gets to sleep in.

Max sees OT every 2 weeks for feeding therapy. He's not eating new food yet but he is taking bites (for sticker rewards) of new foods. It is going very slowly but at least it's going. I didn't expect it to be fast.

A few weekends ago we went to Springfield, MO to hang out with grandparents and swim. Joe stayed with Pete's parents all by himself for about 3 days. On Wednesday of that week the other 3 kids and I went back down. Joe did awesome. He told me he was going to live there now. I asked him, "what if we miss you though?" He replied, "you guys can come visit." Thanks Joe! On Sunday of that week Sam went with Pete's parents to Chicago to visit cousins (and aunt and uncle). The 3 boys and I still hung out for a few days at my parents house. We came home Tuesday afternoon and Sam got back home late Weds. evening.

While in Springfield I got another tattoo. Pete and I keep talking about getting more but we just haven't. So I got a big ladybug on my left foot. It has been 1 week and 1 day so far. It is still healing and doesn't look that great yet so in a few weeks I'll try to post a picture. Yes, it hurt but it wasn't that bad. I was prepared. I know foot tats are supposed to hurt a lot. I handled it fine. My other tattoo I got when I was 19 years old. It is a cute little (maybe 1- 1.5 inches) yellow frog on my lower side back.

I passed my intro karate class so I am now officially a white belt. yay! I have not yet made it to a class wearing my gi top or belt. Thursday hopefully though. Pete and I will be attending classes together so we had to find babysitters. That took some time but we now have a couple of sisters lined up. I hope they work out after school starts and aren't too busy.


I haven't bought any school supplies yet. I ordered 2 backpacks from LL Bean and that is it so far. Anybody have them? Do you love them? Hope so. They are guaranteed to last so I'm hopeful they will last a long time. Even when they do wear out I can get it replaced for free. How cool is that?! I'm just not in the school mode yet.

Hope everyone had a great summer (or is having a great one!!).

doule digits

There is no way my baby can be double digits! Max turned 10 years old June 29. 10! It does not feel that long.

Birthday10 years later! My baby growing up.
Since he doesn't eat cake we had candles in a pizza for him!!

However, I don't recommend that! The candles were melting from the hot pizza. I had to grab a towel and dab out some of the melting wax.

Happy birthday to my 1st baby. Stop growing up so fast!!

6 years old

I'm a couple days late getting this up...

On June 23, 2005 my sweet little Joe was born...

On Thursday he turned 6 years old!
By mid day he was saying this was the worst birthday ever. The boys and I went to the grocery store while Sam was in swimming lessons. Why do I always fall for the whole car cart thing? I must be a slow learner. They always want those darn things but I can't stand them. Anyway, Joe and Ike talked me into one. mistake! So of course, they had to fight the entire time. Screaming, biting, spitting, pinching and crying. I'm sure the store loved us. By the time our very quick trip to the store was done both little boys would have to go their room when we got home.

That evening though I took Joe back to the store and let him pick out a cake. We wanted all pink. They didn't have any. He settled for a decorated greenish colored cake. I bought pink icing and put "Joe" on the cake for him. He picked out 'trick' candles. I'm not that impressed by them. I remember when I was a kid those things worked well. Now? Not that great. He opened presents and had cake. I think it turned into an OK day!

So even though I am late posting this....

Happy 6th birthday to Joe.

Mr dress up

Also known as Ike..

Ike is ALL about dressing up. I guess when you're 3 years old it is all about imagination!

Check out some of Ike's other personalities...

He can be Spider-man
Or Woody (I don't seem to have him dressed up as Buzz, but trust me, he does!)
Mario is also still a favorite

He can be decked out in camo

Or save the day being a fireman (with or...

...without the mustache)

What's a fireman without his pack?

He can be a pirate, complete with parrot (He does have a bandanna for his head, a hook for his hand and a sword for the other) but this must be a friendly pirate as he is wearing sock monkey slippers!

He calls this his safari gear

Ho, Ho, Ho!
Ike is Santa at the park. Notice he had to be dressed in all red with black boots.

Last but not least,
Ike was a cheerleader (with binoculars) who had to sit it out on the steps but fell asleep.

This is just a glimpse into Ike's dress up craze. He can be anything he sets his mind to!

Tooth fairy Finally visits

Is that just a sweet picture of Max? OK, I may be biased. But he Looks so innocent there.


Back in February Max started to get a loose tooth. His first one. I took a picture so we could remember those sweet little baby teeth..


Finally, roughly 3 weeks before his 10th birthday he lost it!
I was prepping him up for loosing his tooth. I wasn't sure if he would freak out or what. I did think he would manage to swallow it. Everyday (well, several times a day) I would check out his tooth, or he would come shoe me how loose it was. I acted very excited and informed him once he lost it the tooth fairy would bring him $5. He would get very happy about that!

So one evening Max came to me pointing to his mouth. I said something like, "yeah, I know, your tooth is really loose." Then he opened his hand and Ta-Da there was his tooth. I wish I could have seen his face when he pulled it out. However, he was in a room by himself.

He is still pretty excited about loosing his tooth. The new tooth is just peeking through the gum. I don't think he has any more loose teeth right now. It felt like it took forever for that tooth to fall out. I mean, I noticed it was loose 4 months ago!

So at the ripe age of (almost) 10, Max lost his 1st baby tooth. Heck, at this rate he may have his baby teeth for years and years to come!

dreaded appointment update and sick kids

Yeah, I know the appointment was about a week and a half ago. The appointment went much better than I excepted. As you can see in my last blog post I wasn't looking forward to this appointment!

We got there and they had a regular parking area (not covered) and I got the only spot open at the time. They seemed OK with the fact that I brought 3 additional tag-alongs. Not only that, they even took all 4 kids to an "activity room" while I talked to all the different people. Imagine, quiet time while trying to talk to a kids doctor. Pretty much unheard of.

I saw all the people at the same time, which is very smart if you ask me. There was an MD, OT, dietitian, psychologist, and a nurse practitioner. They asked lots of questions and all jotted down their own notes. I felt kinda like an interview!

The OT wanted me to bring foods Max likes and some he doesn't like. I did that. She played "food scientist" with him. They had a piece of paper listing their assignment (so to speak) and were supposed to use the senses to discover the food. First they looked at the food and noted what it looked like (shape or color or whatever), then smell, touch, TASTE and what sound it made while being eaten. Max was NOT going for that trick. No way, no how! So the OT and dietitian got to see his reaction to that experiment. I am supposed to that 5 times a week. I have to admit I have not followed through with that yet. I know, I know! We need to at least try.

The dietitian said she really wanted him to take a Flintstones Complete vitamin. The last dietitian told us that has well. He will take the gummy bear vitamins but that is it. After the last lady recommended them (Flintstones) to us I bought a bottle to try. Max will not even touch them. My other kids don't like them either. To me they are very sweet and have a strong iron taste. So yeah, not very yummy compared to a gummy vitamin! This lady recommended crushing one up and mixing it with applesauce. Maybe even try to mix only 1/2 a pill to start with. I have to say that has been successful... so yay! That was most important to start with from the dietitians viewpoint. Have I done it every day? no, but it's a start. I even do a full pill. I mixed with applesauce, and tried one night using apple juice. Didn't work that well with juice. It didn't dissolve but he still drank it and even asked to get it refilled once. Which is good since there were still chunks in the bottom! Today I mixed with yogurt and it was all good.

Another suggestion is the 'just noticeable difference' to preferred foods. I really was not sure about that one. Max refuses anything that LOOKS different. Take chocolate for example... he likes Hersey bars, kisses and chocolate eggs. But NO other chocolate (Easter bunny or any other shaped chocolate) he also doesn't like the mini Hersey bars. They look too different I guess. They suggested maybe change his bagel type. Max eats 1/2 a toasted onion bagel for breakfast, usually every morning. At least during the school year... (summer changes to whatever!). They recommended sesame seed but nothing with chunks (like blueberry). I wasn't so sure. So one morning a fixed a sesame seed bagel but it was the bottom half.. the side with very few seeds. But the taste would be different. He ate it with no complaints. So the next day I gave him an onion one again then the day after I braved it and fixed the top half of that sesame seed bagel. I tired to brush off a few of the seeds but not very many came off. I gave it him and acted no different. I watched from a distance out of the corner of my eye. He ate the whole thing!! I know, one bagel type to another seems like no big deal. I see it as a step though. Baby steps, right?

I still need to mix it up more for him. The store has hot pockets on sale this week. He will not eat them and I really don't even buy them b/c it is not very healthy food. However, the people at the clinic suggested other pizza type foods that are different to him. They asked about hot pockets and kinda suggested trying them. I had Max help me pick a few out. One is a cheese stuffed crust pizza type of thing. Not sure he knew we was picking them out for himself yet. I still need to try them. You know the picture always looks SO much different than the actual product. I will have to have him agree to try what is ON the box and have him help fix it since it will look different. Hopefully that works. Not that I want him eating Hot pockets but it is something different. Something to hopefully expand on.

The OT there said every one of her patients have started eating new foods but one. I should have asked if that one had Down syndrome!!

Another suggestion was to not offer the same foods at the same time of day for 2 days in a row. I told them I don't think that would matter. As long as a food is on HIS approved list he will eat whatever at anytime of day. They suggested yogurt one day for breakfast but the next day be something different like a bagel. I told them he asks for pizza every day for breakfast, he just doesn't get it! Really, he fine eating bagels for breakfast or dinner or snack or whenever. Same with pizza, spaghetti and other foods on HIS list!

We follow up August 1st with that clinic. However, he now has an OT appointment to work with food at a closer children's mercy clinic... On Monday. My husband says I shouldn't go, that it is a waste of time and money. They aren't going to do anything I can't do. I still plan on going. Pete says just fix one meal for everyone and everyone has to eat the same thing. After a few days they will all be eating it with no problems. I don't think that would work, and well, I'm not going to try it. Max will just eat something else later that he wants. yeah, I know, don't let him. But to make it short.. It's not going to happen. If you know of any study done to try and prove MY point, please do share!! I just don't think some major change like that would work.

The clinic we went to has a certain criteria they use to screen out patients. First it is called the Special Needs Weight Management Clinic. So, obviously they have to have some type of special needs. Second they have to have a BMI of 95% or above. I guess at the last dietitian place his BMI was 95%. Which just seems like such a crock to me. His BMI is 21, well within the normal limit. OK, so yeah, he is a little chunk and possibly a little over weight but his BMI is normal people. However, compared to other 9 1/2 year old boys, who are generally tall and skinny, he has a high BMI. At this appointment though his BMI went down. Apparently he grow an inch or 2 and has maintained the same weight. He no longer qualifies for this clinic. Which I see as a good thing personally.

Whew, that was long!

On another note, my kids are all battling some virus or something! Ike started with a high fever spike Weds evening. By Thursday he seemed better. Sam and Joe then spiked fevers. Whatever it is must take a high temp to kill it off. Joe's fever was around 103 and Sam's was 103 -105. I alternated Tylenol and ibuprofen for her. First time I have ever done that for any of my kids by the way. I'm sure Pete would have freaked out if he knew her temp was that high. He tends to freak about things like that. Whereas I know the fever is killing off the bad guys and the body can take care of itself. What would the doctors do? Well at the ER take my $200 and then send me home telling me to rotate the meds (like I was doing). Today (Friday) she was still sick but her fevers were lower, maybe 102-103. Same with Joe, a little better. Sam said her throat hurt (so did Joe but he acted pretty much fine). So I made an appointment with the doctor at 3:30. This was to see if maybe it was strep. Max and I were fine but we both have no tonsils! Around 2:00 Sam started acted like herself again. Max then took a turn for the worse and sat on my lap with his head down. I had him go lay down. He did for a few minutes but came back out and sat in a computer/desk chair. he was falling asleep while sitting there so I went and laid down with him for a few minutes (after giving him meds). Sam didn't want to go the doctor to get a swab crammed down her throat, hmm, I wonder why? Plus she acted fine so I canceled the appointment around 2:30. Around 4 or a little after Sam was acting sick again. And still is (at 9:30 at night). Joe acts fine but still has a fever. Max... well, Max is back to himself again, picking on siblings and scaring the crap out of the cat. Ike has acted fine all day but feels a little warm and fell asleep in the late afternoon (and still sleeping)

Whatever it is, I hope it all disappears by tomorrow!

dreaded appointment

Max has an appointment this afternoon that I am dreading!

I was told to allow 2 hours for the appointment. 2 hours!! If it was just Max and I, I think I could handle it better. However, Pete started a new job...today. The neighbor had plans for the day so I am stuck taking all 4 kids with me. grrr. Pete said I should have asked his parents to come up. I probably should have. But it's too late now.

The appointment is at the Weight Management for Special Needs. It is in downtown Kansas City. It is part of the Children's Mercy Hospital but not IN the hospital just right next to it. I hate driving down there. I'm not that familiar with the area to be driving around trying to find my way. I am hoping the GPS helps out a little. Another reason I hate driving to the unknown building is parking. The hospital itself has covered parking. We have a conversion van with a high top. It is too tall to fit in parking garages. So at the hospital they have me park in a special spot. They have about 8 or so special spots for high/big vehicles. I am not sure about the clinic I am going too. They do have a covered parking I know. I told them on the phone I drive a tall vehicle. I guess I'll find out when I get there!

The paperwork says, "please make arrangements for other children in your care while you attend this appointment." Well, I already talked about that. I hope my other 3 behave and have patience. Lots of patience! Same for me.

I am also supposed to take 2 food items that Max will eat and 2 he will not eat. This should be fun! Actually that is about the only reason I am going. He is SO darn picky. I am hoping someone there has some magic power to have him eat something new and different.

The reason for this appointment all came from his high cholesterol from last year. I had it re-tested 6 months later but it was still high. I know this is all from Pete and I. But I don't think the doctors care. From there we saw the nutritionist. I am pretty sure I blogged about that but right now I can't find it. I think Blogger ate it! She was no help. So this place is our 2nd place to visit. Max didn't qualify for the eating/feeding clinic. Which really is my main concern.

I keep thinking he has to outgrow this. He will want to try different things. But really, I'm not too sure. I asked a friend about her son who also is a picky eater and went through feeding therapy. News did not sound good. She even met someone that has a son (adult son) who only eats like 3 things.... and that is it!

Oh Max, oh Max, why do you have to be SO stubborn and picky??

Where does the time go?

It's already been over 2 weeks since I posted. So maybe I should just consider myself a radium blogger!

Last week Sam and I made some 'blobber' for science.

It was SO easy to make. It is really cool stuff too. It is almost like silly putty.

Different colors have different stiffness to them so we could see what solution would be better at different activities (bouncing, blowing bubble, etc..)

The yellow was the best for bubble blowing...

I'm sure you're all dying for the recipe, right? In case you didn't see it on my Facebook, I'll post it here too.

Blobber:
1 Tablespoon white glue
1/2 teaspoon borax
1/2 cup water
food coloring (optional)
2 paper/plastic cups

1. Dissolve the borax in the water.
2. pour the white glue into another cup. If you would like, add about 4 drops of food coloring.
3. add 1tablespoon of the borax solution to the glue and stir with a stick or spoon.
4. take the mixture out of the cup and knead it with your hands for several minutes.

Easy peasy. I made double patches. 2 tablespoons of glue then added 2 tablespoons of the water borax mix.

To test the blobber with different solutions try adding different amounts of borax to the water....

red... 1 tsp
blue... 1/2 tsp
yellow... 1/4 tsp

Have fun!