Feeding Clinic

This is another post I've been putting off. But it does bring up some important issues and someone may be interested so I'm writing this. This is not a Rah Rah post, so if you want that please skip this one. This is also very long. With that, here goes...

The appointment was on Dec. 23rd early morning. Just what I want to do on a day in the middle of Christmas vacation, get up at 6 am and go out into the cold to go to a hospital for a dr. appointment. The senior therapist from the ABA organization also attended this appointment. I made up 2 straw cups of CIB for this appointment, but of course forgot to pick them up and bring them with. There was very little wait this time. Eric did AWESOME with standing on the scale to get his weight. The height, that's another story. They have this thing that comes down on the child's head and he HATES that. Not that I blame him, but they are careful bud. This time they insisted on getting it so they would have to do it in the room by standing him at the wall, making a mark and using a tape measure. We get settled in a room, and the nurse comes in soon after. She asks the usual questions. I bring up my concerns about how much he is drinking, and urinating and the fact that his urine is very dark and smells like sugar. I don't want to be paranoid, but his dad is a type 1 diabetic, so it's a possible concern. Nurse is concerned, along with the dietician. He gained 2 lbs since the summer, but they were not happy with that. His weight is not keeping up with his height, and for how much he is consuming they would like him to be gaining more. They try to get a hold of the GI doctor that was there today so labs can be ordered. Gee, that's something to look forward to!

The psychologist comes in and is filled in on all the medical and nutritional information. Then she talks to me about how he's been doing with the cups, spoons ect. I tell her how I get to a point and no progress is made, and how he don't drink enough from the straw cup to keep properly hydrated and healthy. Then she asked the senior therapist what she was doing, and how she thought he was progressing. Then she asked how long that the therapy organization would be working with him, we told her 3 years. Then she asked the senior if any long range planning has been discussed for Eric. Huh? She then informed us that Eric most likely won't be able to function on his own as an adult, and the bigger he gets, the harder it's going to be to handle him. Then asked if we ever talked about or looked into a residential placement for him. Ummmm...OK. That was the LAST thing I was expecting to be brought up for discussion. Nice thing to talk about right before Christmas! Now I understand that Eric may not be able to live independently as an adult, and that he may need a lot of help. I'm ready if he has to live with me as long as I'm around, or that a residential facility may be necessary in time. The services in this state are great, but I have no idea what's going to happen once they turn 18. I'm not in denial, and know that in time these things may need to be addressed. But to bring it up like this? Eric has made great improvements since starting the in home ABA therapy. Nobody knows what the future will hold. He may get to a point where he may need minimal help, or that I can care for him as long as needed. Right; now I'm his mom, I am caring for him and he is thriving. Yes, it's slow progress but he's much better off than he was before. The senior said this stuff was discussed during year 3 of the intensive phase therapy (at the end). God this conversation upset me. It came across like I can't take proper care of him. This is not a subject to be taken lightly, just not something I wanted to deal with right at that time.

On to the lab. The senior therapist was staying with me and Eric through all of this, which was very nice of her and very appreciated. We had to get both blood and a urine sample from him. By this time we tried a bag, but he fought that so hard and would not let us put it on. Then we sat in the bathroom for about 15 min trying to see if he would go in a cup, didn't happen. So we got a hat, cup and order to try to do this at home. Anyhow, we sign in. The therapist forgot something at the GI clinic, so she had to go back there. Of course while she was gone we were called back for the blood draw. There was one lady there and she asked if it would be easiest if I held him in the chair or if he laid on a table. I said in my lap. Eric plopped down on the ground and dead weighted himself. He wasn't moving. The lab worker called in 2 other people. They were able to lift him on to me and told me to hug him hard and make sure his chest didn't move. There was another person holding his head and other arm, one was holding his legs. Yes, I thought this was a bit rough and exstreame, especially when they picked him up. Yes, this had to be done, but this was very hard to witness my child go through this, and to have to assist in it. They took 6 tubes of blood, lots of tests. You would think they would just tape some gauze on the spot or put on a bandaid after, of course not. This is what they used.

He would not let me anywhere near that for days. I was risking injury if I did. I didn't want to use a scissors because he moves and fights so much, and the location. This was the result.

It was way too tight on him and he may have had a reaction to it. Thankfully this is healing well now.

We are still waiting on results of the tests, they told us 2 weeks for everything comes back unless something is seriously wrong. No news is good news I say. But I keep praying. The urine sample, we're still working on that. He won't sit on the toilet with the hat on it. If I can get some time I'll go in with the cup and try to catch him. We have now regressed to peeing and pooping on the floor, and it's a struggle to get him to even sit on the toilet now. Maybe this will happen, some day.

The appointment was at 8:30 am, we got home a little before noon. I left my keys at the GI clinic and realized it when we were in the parking structure. Having to go back in and to the lab, pharmacy and GI clinic to get my keys did not make Eric happy. Don't blame him, the poor kid already went through enough. This was not an enjoyable experience. If you read all the way through this, God bless you. I'll post some more fun and upbeat posts on here tonight if I get time, or tomorrow for sure.

Christmas, the Real Story

Yes, I know I'm a little late here. It really was awesome that the improvements Eric has made since starting the therapy really came out. All the boys did have fun with their new toys once they were opened, for a little while. There were happy times. With that said, this blog focuses on autism. Autism was definitely present on Christmas. For a while I had a hard time deciding how I was going to present this. Eventually I decided just to tell it as it is, with my real feelings and all. I'm thinking I owe that to anyone who is reading that wants to know about how autism affects our families life. So here it is, the real deal...


At Grandma and Grandpa's house. Jon playing with the ornaments as he always does. It looks cute, but lets just say this didn't go over well.


Eric chilling out and making the most of it. Thankfully he didn't go into meltdown mode. He's learned to cope with this type of thing quite nicely. Visiting other people's houses is hard. My guys have a hard time being out of their familiar surroundings. There are different people around, what they can do at home they can't do at other peoples homes, routines are off, we had some surprises coming in and they like to know what is going to happen. There are questions about why we do certain things, why they won't eat with everyone, why they don't show excitement with opening and receiving gifts. No, it's not because they are ungrateful and spoiled, it's because they are confused and can't express themselves. It is not understood why these kids are crying, cranky, tired and bored unlike the image of happy children we all think of at Christmas. We learn as we go, so we do this. The learning process is slow and can be painful but we will get there someday.


Christmas morning. Looks pretty doesn't it? This was one of the reasons I was up all night (along with my kids waking up and other things) I'm hoping everyone is taking a good amount of time to look at this, just as I did. If you want Christmasy themed photos, this is the best your gonna get. This looked so pretty and inviting to ME. When my sons woke up on Christmas morning, this didn't even warrant a LOOK from them. They wanted the TV on and to eat. This was just another day for them. Any attempt to draw attention to the wrapped presents failed. They couldn't care less. Finally I gave Jon a present and tried to help him unwrap it. He cried, pushed it away and hid under his blanket. Yes, he is 2 years old and he is young yet, but I expected some interest. On to Eric, I thought he was a sure bet to want to try to open a present. I picked out one I knew he would love, and brought it to him. He pushed it away, whined and continued to watch TV. I turned off the TV, a big tantrum from all 3 resulted from that. I started tearing the paper for Eric, he knocked the present out of my hand and stomped off. Andy, he wouldn't even look or touch the present. Again, more crying and tantrums. He didn't understand. There was no use in prolonging this so I tore the paper off of all the gifts that I wrapped. Just how everyone dreams of Christmas morning, as a child or as a parent. Nah, didn't think so. Disappointing, yeah for sure. This was hard.

Once they were unwrapped and Eric saw all his toy trucks, and Andy saw the bottles of bubbles that came with the bubble machine, then there was some interest.

He said "open please" and "help please mommy here". This year he was polite to boot! Yes, he was still persistent though! Too awesome!



This makes it all worthwhile.





No, this is not the set to the Lawrence Welk Show. Andy's bubble machine broke a few months ago and thankfully I was able to find one (things like this are seasonal items apparently :-( ) This was the one thing that made them happy in each other's company. It's nice knowing what they love and what will make them happy :-)


The ball popper was very popular among all. Too bad I can't find any of the balls anymore. Eric took this and closed himself in his room to play with it so brothers couldn't get it and I have no idea where the balls were hidden.


Eric has some competition for this fire engine. Andy loved it. He was actually playing with it properly, which was a very pleasant surprise to me :-)



The sensory balls and the bowling set seemed to be Jon's favorites. He was doing quite well with that bowling set too, he seemed to get the concept.

Yes, they had fun. Of course there were fights, stuff got broken, parts went missing, kids got overtired and cranky. I have to say that's typical for ANY children, young children in particular. So that part was normal and expected. Maybe my expectations were not totally realistic. I was very impressed with how Eric was talking, interacted and handled himself with the stress and change in routine. He's made big improvements there. It was nice seeing some toys being played with properly. Really, this went well all in all, for them especially. I do wish that we could participate in various activities with more ease. The total lack of interest, understanding and excitement on Christmas morning was what really got to me. But those are my issues. What counts is that the BOYS had a good time, which they did.

Survived Another Round of Mommy the Barber

Finally, mission accomplished. It took a few times to get this all done, but we got there. Was this easy or fun, no way! They all fought it all the way through. There was crying, screaming, kicking, hitting, scratching, one attempted bite, we're all still alive. This really is hard on them from a sensory standpoint and there is no way I can get them to understand this don't hurt. My hope is in time they get used to this and it gets easier. Probably should do it more often. With that, here's my handsome little men :-)


Poor Eric, while I was doing this he kept saying, "please stop!" I wanted to cry. On the other hand, it's amazing how much he can vocalize his feelings now. I'm very impressed with that. I couldn't leave him with a half shaved head so I had to carry on until finished, poor kid :-(.


I fixed Andy's hair. You can still see where the guard fell off on the left side of his head last time I did it, but it isn't nearly as noticeable. The back is now even too. As it turns out the #1 is a good look for both Andy and Eric.


Just as you think when you walk into my house "We're in the Army Now!" lol here's little Jon. His haircut was done a week before. He was after Andy and I got scared after his didn't turn out as I expected. So I left the longer comb on the clippers. His turned out awesome. As I think about it, the longer look fits him better. Jon's hair also gets wavy as it gets longer, which can make it hard to cut. They all look great, and I didn't have to pay $75 for it to happen :-D

So Close...

The therapists have been saying since last week how well he's been doing with drinking his CIB out of a straw cup for them. Yesterday he drank it all up for them so I decided to offer him only that down here. There is a lot more fuss, but eventually he was taking sips for me. The problem is these sips weren't amounting to enough to keep him hydrated and with proper nutrients. So, I had to give him his other cup today. The senior therapist suggested putting water in there if he isn't getting enough CIB since he's much more compliant with that. Should of thought of that, it's been a long couple of days with baby brother. Anyway, he has an appointment at the feeding clinic Wednesday morning. My plan was to discuss this with them. We will have this so soon, I feel it. We just need to know how to best get through this difficult transition process and keep him healthy.

Today I'm going to take another try at cutting Eric's hair. If it don't work today I'm going to have to wait until I can get someone here to help me with him or take him to the salon again. I'm also debating shaving off Andy since I messed up his. The guard came off while i was cutting his so there are parts of his head that were shaved all the way. He may have a hairless Christmas!

More on the Holidays...

Holiday Letter for Families with Autism

This is another good read for anyone that will be spending time this holiday season with someone with autism. It's written in the point of view of an autistic person. Many of our kids have a hard time with the change in schedules and routines. There is so much activity, lights, sounds and people. This can be hard for any young child. There are times our kids will want to be alone. Sometimes they will stim and people ask questions. If the child won't sit down and eat with everyone, or they don't seem to get Santa, or unwrapping gifts it could be taken the wrong way. With a little communication with the parents, and as much patience and understanding as possible the holidays can still be a wonderful experience for everyone.

Decorations
At this point, I only have a tree. It may stay at that too. I may get some stockings to hang high where they can't reach. The reason for this...


This is what my tree looks like at this time. I'm hoping to try to put this back together on Christmas eve night before I put out the presents so it looks nice for Christmas morning at least. It won't last long, I know that. Here's why!




As you can see, he's quite proud of himself for doing this. Eric thinks the ornaments are balls. During one of his tantrums he knocked the whole tree over. Nobody was hurt, but that wasn't fun.

Parties
Tonight my wonderful friend that I used to go to church with invited me to her house for a Christmas party and meal. It was a short notice invitation, and I was actually going to pack up all 3 boys this evening and go over there. Jon woke up from his nap sick, so we couldn't go. Maybe that was God's way of telling me I was nuts to even THINK about trying this. I honestly didn't expect to stay there long. I'm always prepared to pick up and leave very quickly if they just can't handle this type of thing. Maybe I would have been able to eat with the kids. Ronda knows me and my children very well, and would do whatever reasonable to accommodate to them. The people there most likely would know our family too. But when the behavior becomes not so desirable, it gets noticed. When we used to go to their dad's family gatherings it was never a great experience. I was always pinned down by a child who was having a hard time so I could never talk to anyone, eat, or enjoy anything. The relatives would get offended if my kids did not act like or play with the other kids, would not eat the food offered, and would not rip open their presents and jump up for joy or show appreciation. Of course there were always the "I don't do a good enough job disciplining them", "You hold them too much", "You don't talk to them enough or they would be talking", ect. Their dad never wanted to leave when the kids had more than enough and I was having a miserable time. This was so not worth the stress and the upset. I've found that having realistic expectations, preparing the children as best as possible, letting the host and guests know what is going on, and having an escape and being willing to leave at a moments notice is the best way of going about something like this. We will be going to my mom's house on Christmas Day. It's not going to be a lot of people and they don't go nuts with the decorations, so that will help. I have answers prepared for the questions I figure I'll get. We should be good to go. It is important to have family and friends in life, especially around the holidays. Everyone should be able to enjoy themselves in their own ways.



The message is quite clear here. This was at the end of the school Christmas event today. Sadly, this was 15 min before he could go :-(

Gifts
Last year the boys had no clue about unwrapping gifts. Seeing the all the presents under the Christmas tree didn't peak any interest in Eric or Andy. Jon did like the paper, but was still a bit confused but he was only a year old. It was hard to see this, surely not how I pictured Christmas morning. They loved the toys though! For the last couple of weeks I've been debating whether or not to wrap their gifts. I love wrapping presents and making things pretty. It's theraputic for me. On the other hand, I'm thinking it would be easier and more enjoyable for them to just have the toys under the tree ready for them to grab. Right now I'm thinking of doing some of both. As to how they would react to wrapped gifts, I got a preview at Andy's school Christmas party today.


It took forever to get him near this and anywhere near interested. He couldn't of cared less.


The SLP telling him "open", he didn't know that. All the other kids ripped these open.


At least he let me take a pic of this by him, but it took many presentations.


He loved what was inside though!

I'm now ready if they are not interested and don't get it. Yes, I will be sad, but we can still make this enjoyable. It's still going to be a big photo shoot. We are going to have fun.

Happy Holidays to All our friends and loved ones!

Visit to Andy's School

Since today was the last day of school before Christmas break begins, Andy's school had some special holiday activities and parents were invited. I was able to get a sitter for Jon and attend this. It was really nice. Andy really didn't attend much, he just was wandering and doing his own thing for the most part. He did get a couple of presents, I will talk about that more in the post I will write after this one. I was able to meet one of the speech therapists that work with Andy this morning. They also had the communication device that he is using out so I could see it in action. There were a couple of other parents there. There was still a lot of activity and a lot of people. The schedule was off, and Andy is not used to me being at school. This is an integrated 4K classroom. There are 16 kids in the class, one special ed teacher, one regular ed teacher 2 aides (one is specifically for a child that has extensive special needs, the other works a lot with Andy but is available for the whole class). Last year there were only 8 kids in the class, and it was strictly special ed. This is probably one of the reasons why he's having a harder time. When I first came in he was sitting at the table eating snack with his classmates. Once he seen me he wouldn't sit down. He kept turning on and off the lights. The door was opened so parents knew they could come in, but Andy kept leaving the classroom and I had to get him twice. They closed the door and from there he pretty much played on his own. From here I will tell about this with the pictures.

This had me a bit worried this would be a very short visit when I seen this as soon as I walked in the door... already trying to give me my jacket???


This is the communication device Andy is using at school. He's learned "more" quite well. The speech therapist said he knows the core vocabulary, but only actually uses more consistently on the machine.

I never knew he liked puzzles this much. It was hard to keep him away for a while. He started out actually putting them together. After a while he wanted to take them ALL out and dump the pieces and make a mess. Obviously that wasn't allowed. I wish I knew he liked puzzles before I did my Christmas shopping. I still can get some for him after.

Holding a Rudolph puppet. Mostly running around with it like he does with clothing at home.

Just like at home, he loves the phone. They have the same idea, plug it into electricity so they can push buttons and have light and sound, but not plugged into a phone line so they can't call anyone!

Andy was followed around with this throughout that hour plus. When he wanted a toy or something the SLP had him push the "I want" button.

Picking out train cars

Getting them set up. I really didn't know he was into trains either.

He knew how they went together. No, it wasn't on the track but he did keep them on the table!

He LOVED pointing to the days on the calendar. They said he picks it up and does this every day at circle time :-) Eric loved to do this too when he was this age.

Rudolph is joining Andy at the magnetic maze thing.

Welcome To Holland

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.