No, I Haven't Fallen Off The Planet

I've just been REALLY busy. I started delivering newspapers every morning, and now I've discovered a new meaning of the word "tired". I only THOUGHT I was tired before.

Many exciting things are happening on the homefront here. The biggest news is that my dh finished his PhD in Theoretical Astrophysics! He was BLESSED to get hired as an Assistant Professor at Missouri Western State University. He will be teaching Physics and Astronomy. We are excited (and nervous) about this next step in our lives. We currently live in Utah, so this is going to be a big change for us. My dh is flying out to Missouri the 2nd week in July to find us a place to live. I can't go because I have to work, and we can't afford the airplane tickets anyway. My older boy will be at Scout Camp, so it would just be me, dh, and Marshall, but that is too expensive. DARN! Once we find out where we're going to live, the real work begins! Marshall will be starting Kindergarten out there, and I think he's going to need an aide to work with him. His fine motor skills are still very poor, and he has a lot of trouble with social skills. I try to teach him that he doesn't need to talk to EVERYONE he ever meets. ~Sigh~ It's a slow process.

I get a little overwhelmed when I think about moving to a new state and having 2 kids starting a new school. I'm not sure what I need to do to ensure Marshall gets the services he needs. Utah (and especially our school district) has been one of the WORST places to live when you have a child with Asperger's. He is too smart for the Title I preschool, but not delayed enough for special education services. We had him in an integrated pre-school this year, but he hated it. He was the only kid there who was not wearing diapers. The other kids were mostly working on talking. You can't get Marshall to STOP talking. :) In April I had finally had enough, and just kept him home. It wasn't worth the price I was paying.

I'm not sure if I ever came on here and shared the news, but we did finally get an official diagnosis. He definitely has Asperger's Syndrome. I'm not sure I completely understand what the doctor wrote so I'm copying it here.

Multi-Axial Diagnoses

Axis I 299.80 Asperger Syndrome

300.02 Anxiety

782.00 Sensory Integration Difficulties

Axis II V71.09 No diagnosis

Axis III No known complicating factors

Axis IV Problems with: other psychosocial and environmental problems

Axis V Current GAF- .50

Past Year GAF- Unknown

Does anyone know what that means?

I'm Still Here

Just so ya know. I haven't gone and done anything crazy. Ok, yes I have. I signed up to be the soccer coach for Marshall's team. I also reluctantly agreed to take Marshall to Wasatch Mental Health again. They have NEVER been helpful. They have only said Marshall has sensory problems, that's all, and then left us with no idea as to what we should do to get through this mess! Thanks a lot guys....

I also let myself get addicted to a game on Facebook and spent every spare second I could, playing that. I think it was a way to push the stress away, but it was not good. I finally was able to realize that what I was doing was not right and I stopped. I deleted the game and blocked Facebook too. So, if you normally look for me on there, sorry but I'm MIA until I feel I have control over my obsessive behavior. Maybe I will never feel like I can go back to Facebook. Who knows. So, for now, read about the sleep doctor update, Marshall in soccer, a silly song parody I made up, and soon I will update about school. But for now...the link- http://buckleinbunch.blogspot.com/

Sorry I don't have more to say. I need to get a shopping list made before I get Marshall from school. I love 3 hrs of time to myself. Ahhhh...it's so nice!

Social Skills Class

Marshall started a social skills class at his OT's office. They have been trying to get him in the class for over a year now but they always had it on Thursday afternoons at 4pm and there is NO WAY that could work for me. Even if it weren't 1/2 hr North of where I live, I still couldn't do it. So now, I'm thrilled that it will be every Friday at 10:30am until Sept. 18th. They will work on his communication skills, which will be so nice.

Today at church, he was asked a question by our Primary President. (The Primary is the children's organization. It's where they go to classes with other kids their age..kind of like Sunday School for other churches.) She asked him if he went to see the new temple that had been built. He just stared and stared at her. I had to go ask him questions and try to get him to answer them but he had no idea at all what she was asking. He never really answers questions. He is usually lost in his own world during church. I think he just turns inside to deal with the stress.

The Latest

So I haven't posted in a LONG time. We've had some really good days, some bad but really, he's doing quite well lately. We are now in the exhaustion cycle. Marshall isn't sleeping well again. Every night for the past 2 weeks, he has been waking up screaming. We have to go into his room and tell him he's OK. Then he goes back to sleep until the next time. He also talks in his sleep a lot. We go in his room at least 4 times a night. It is exhausting!! Still, overall I can't complain. He is eating and less angry too! That is so nice. We still need to improve eating some textures but when it's something he likes, he gobbles it down. We still can't get him to eat noodles. I made Chicken Noodle Soup with my own homemade noodles. We made him try a bite but he threw up. Oh well. It's still progress.

Four weeks ago, he was SO mad that I called my husband to say I was dropping Marshall off at the nearest crisis center because he was so out of control and I felt myself getting there too. Brian just told me to rake Marshall to him. He was at school working on his research so he made Marshall go there and be bored. Then, just before I was supposed to pick them up at the bus stop, I smashed 3 fingers on my right hand in the garage door between 2 of the sections. I broke my ring finger all the way through at the tip but only bruised the other two. I'm still wearing a splint and sometimes it still hurts REALLY bad but I think it is starting to get better.

Well, that's my update. I hope all of you are doing well.

Marshall update

Well, I've been MIA lately. That's because I'm barely hanging in there with Marshall's behavior and I'm so tired I just don't have time to blog. We made it through the whole Daddy being gone for a week (barely), and then 2 weeks ago, we had a big medication mixup. Here is a VERY condensed version of what happened.

Tuesday night, May 26th, I picked up a refill prescription of Clonidine for Marshall. When I went to give it to him that night, I noticed it was bigger and blue instead of the small orange pills I'm used to. I told my husband that it wasn't the right medication. My husband told me the pharmacy probably just switched manufacturers and give it to him anyway. It was one of those nights when he was so wound up and out of control that we were pushing it to make it to 7pm when we give him his evening meds. So, we gave it to him but then my husband started worrying. He looked up Clonidine online and could see lots of pictures of what it looks like when made by different manufacturers but nothing was blue. So, I called the nurse for the on-call doc. She said not to worry, just watch him that night and make sure he's breathing, etc. I told her that doesn't work for me because we don't even know what we just gave him! She suggested we call Poison Control. Yay! Good plan! I was in the middle of my "Special Playtime" with Marshall so I had my husband call. Poison Control is so Awesome!! They figured out that what we had given him was really Clonazepam, which is a generic form of Valium. He got 2 mg of it. Poison Control said to watch him. I think they expected it to knock him out. Yeah, right. They don't know Marshall. He never reacts normally to medications. He was cycling through moods pretty fast and they were manic. He was crying and crying that he loved me. Then he was climbing on me, then jumping around, then angry, then crying again. It was frightening. Finally, at 10pm, Brian called Poison Control again. He forgot to mention the fact that Marshall takes Fluoxitine in the mornings and when he was reading about drug interactions with Clonazepam, he read that Fluoxitine is NOT a good one to have with it. So, Poison Control sent him to the ER close to our house. It's a community hospital, small, not the best. Do they even have Peds? Not sure, actually. Anyway, instead of giving Marshall the antidote for Valium, which is what Poison Control sent them there for, they tried to give him something to calm him down. Oh, and by this time, he was losing the ability to walk. His legs weren't working and he couldn't hold himself up even while sitting on the toilet. The ER docs gave him Benadryl thinking it would make him sleepy. NOT!! Then they gave him his regular dose of Clonidine about an hour later. By the time that finally kicked in, it was 1:30am. This boy can go and go and go unless he takes enough Clonidine. When Brian and Marshall finally got home it was after 3am. Marshall was now pretty much comatose. I mean, he was breathing but that's about it. He was so completely asleep and had no control over his bladder. We changed him, put on clean, dry clothes, and then I checked him 5 min. later and he was soaked again. So, poor Brian went out to the grocery store at 4am to get Pull Ups. We got him changed again, put him in his bed, then changed our bed. We finally got to sleep around 4:30am. The next day, we woke him up to go to the doctor at 10:30am but he wasn't really waking up that well. He tried to walk but kept falling over and crying. He fell asleep waiting for the doctor and slept through the whole exam. The doc even pulled his eyelids open and looked at them with a light but Marshall stayed asleep. If you knew Marshall, you would know that is NEVER normal. Not even close.

Ok, now it is 11pm and I'm so tired. So, long story short... Once he finally woke up, he was totally out of control. I mean, worse than normal out of control. His moods were going wild. It was seriously to the point where the doc was going to admit him to the hospital for observation. The only reason he didn't was because he felt like it wouldn't be any different. We can watch him at home just as well. I had to lock the deadbolts because he kept running away. Finally, I let him ride his bike outside until it got too dark. We called the on-call doc and made them call our doc. He said go ahead and give him Clonidine and his regular meds. It took until Friday for his moods to really start to get back to normal. It was so frightening. Needless to say, Valium is on my list of meds to NEVER USE ON MARSHALL!!!

How Can I Do This??!

My husband just left today for a week-long research conference in Spain. He hated to leave but he really needs to go there. This should get him some recognition, which will be very much needed next year when he graduates (he's finishing up a PhD in Theoretical Astrophysics). So I haven't even been alone ONE DAY and I'm fighting tears. I'm so frustrated and overwhelmed and I only have 2 kids!!! Marshall is defiant and angry but he's doing it a lot more passively these days. He does mean and naughty things on purpose and doesn't care about the consequence. I don't get even ONE MINUTE to myself before he does something bad. I try playing with him but he won't stay focused on anything for more than 30 seconds (IF THAT).

Earlier today he kept jumping on the couch. Not only do I not want him to do this because it can ruin the couch, he could fall and hurt himself. He purposely sits on the back of the couch by the banister that separates our living room from the stairway (we live in a duplex but we have the top floor). I try to get him to listen so he won't get hurt but he won't listen. Then he started kicking his brother just for the heck of it. So, I grabbed his leg and wouldn't let him have it back. I just held his leg while ignoring him, and went about my business. He started kicking me with his other leg and laughing. So, I took him on my lap and put him in what I call a "lockdown timeout". At first I only locked down his arms but then he started kicking me. So I put my legs over his legs. I didn't need to put pressure on him at all because I was just using my legs to block him. Next he tried to bite me so I had to immobilize his head. He was telling me he's stronger than me and he can get away. He almost did get away because I had just finished putting lotion on my hands.

He has a sinus infection right now, although the doctor won't give him antibiotics for it now because it hasn't been enough days. Maybe he's not feeling well so he's acting worse. I know he's tired and he's upset that Daddy is not here. We also just got back from a week vacation to Chicago (we drove 24 hrs each way..ugh). He kept hitting me last week because I wouldn't let him continue to run away during church. I took him out to the foyer because he couldn't behave but he kept trying to hurt me even more. If he hits me and I tell him it didn't hurt, he just hits harder. What am I going to do? How will I make it through this week? It's not like it's any easier when my husband is here because he has a shorter fuse than I do. Things are not going well here.

What makes it worse is that last week when we were in Chicago visiting friends, I was told by many people that he acts like a normal 4 yr old. We stayed with a family for 4 days. There are five children in that family, the oldest of which is 8 yrs old. She (the mother) said he is a really good boy and he doesn't seem to have any problems at all. He's a normal 4 yr old boy. Why do I hate hearing that so much? Why does it make me 2nd guess myself a billion times over? I feel like I'm crazy for thinking he has problems but I know he does. I spend way too much time trying to explain why I say he has problems or why I think he has Autism. I WISH he didn't have problems but it doesn't change anything.

What's a Mom to do? Take it a minute at a time...keep going...because I have to and because as frustrated and upset as I am, I love this child more than anything.

Reading Again

I've been reading this book. I'm not very far into it, but it is really helping me understand Marshall more! If you think your child has Asperger's Syndrome, I HIGHLY recommend you read this. I can't wait to read more. It's a good thing we're going on a LONG drive to Chicago. We leave Wednesday, will stay at a hotel that night, and finish our drive Thursday. I can't wait!! I grew up in this area and I want to take my kids back to see where I lived. I hope Marshall will handle the drive. I'm taking extra therapy brushes, and chewey tubes and even GRANDMA to help him be happy in the car.

Read more information about the book by clicking the picture!

Stemming

Hi everyone! It's the MIA lady! I've been so busy lately that I haven't had much time to post anything. Plus, I feel guilty that I haven't had time to read others' posts so I just stayed away.

I'm sad today. I feel like I'm going crazy sometimes in my attempt to prove to the world that my son has Autism. I go back and forth between convinced he has Autism and really unsure. We still have no official diagnosis. When do I push for this? It drive me insane!!! I can't tell you how many times I hear, "He can't be autistic! He communicates so well!"

Over the last month or so, Marshall has been shaking his hands. He used to only do it when he was frustrated and couldn't remember what he wanted to say. Now he does it ALL the time! He holds his hands up at about shoulder height and shakes them out to the side of his body. He does it more while jumping or taking big steps around. I don't know why he does it. It must be a form of stimulation. His OT is trying to figure out what what he needs to compensate for. When my friend asked him why he does it, he said to get the itch off. She asked him where the itch is and he rubbed his hand over the back of his neck and shoulders and arms, and front as he showed her where it itches.

This week, 2 grown men have mimicked Marshall and I do not find it funny at all! Our downstairs neighbor did it right back at him as Marshall was saying that he had been waiting a billion hours for them to come outside. Then yesterday, Marshall was jumping and flapping his hands, and the guy whose kids I babysit shook his hands out exactly the way Marshall does. He said, "Hey Marshall!" and then flapped his hands. I don't find it funny. I don't know why they would do that. It just makes me sad.

One more thing... we have great news! The BEST NEWS IS: MARSHALL SLEPT THROUGH THE NIGHT FOR 2 WEEKS NOW!!!!!!!!! I'm so happy!

I DO NOT LIKE TAG!!!

Marshall is not a fan of tag. He doesn't like it one bit. Yesterday after school, Marshall and I picked up a friend of his and went to the mall to run and play on the slide and dinosaur skeleton. When we got there, his buddy Carrson started running away from Marshall, happily playing tag. Marshall kept coming over to me crying because his friend kept running away. I tried to explain the game to him but Marshall didn't understand it. Later, other kids joined in the game but this led to even more tears, more angry outbursts, etc. I tried playing with him and explaining how to play tag. I showed him and played with him. He tried to play again but kept falling down. One time a boy tagged him a little too hard and Marshall fell down. The tears came again. He was not happy at all with this game. He has times where he WANTS to play with other kids but it's like he doesn't know what to do. I finally gave up and brought him and his buddy to my house and let them play with LEGOS. Carrson would build different things and play with them. Marshall built Cogs (robots from his most favorite game, Disney's Toontown Online).

Marshal's mood has been sprialing downward. The last few weeks he was rarely happy. He cried a lot, got angry, hit, kicked, pinched, and bit me and his friend and Nate (thankfully not too hard). He woke up a lot, and every meal was a battle just to get him to eat a little bit of food. I can not even begin to describe what it's like to have a 4 yr old with so much anger inside him that you worry about how you will possibly remain positive and happy for him. I try VERY hard not to join in that negative mood. I shower him with praise over the TINIEST things he does right. I know I'm too demanding sometimes and I am working hard on that. I need to offer more praise and less demands. What child likes a parent who doesn't appreciate the good things they do?

Isn't tag something that just comes natural to kids? The other children at the mall were laughing and having a great time. Poor Marshall was completely stressed out. These last couple weeks have been really tough. Marshall has been so angry and it only got worse every day. It could be because he can't sleep that well. Marshall still has obstructive sleep apnea and restless leg syndrome. The apnea wakes him up, then his legs start twitching and it makes it hard for him to fall back asleep. Brian is wondering if the reason why he wakes up scared every night is because he can't breathe and it scares him. It would scare me!!!


No matter how DIFFICULT Marshall is, I'm so glad he came to our family. He is a beloved son of God and I just try to love him as much as God does. I pray that I can see my children as God sees them. It helps during the REALLY REALLY tough times. Thankfully, yesterday was a really good day. I'm hoping it lasts. We're going to visit Grandma for the weekend and I hope he will be happy there.

Sleeples Nights

I guess the stimulant was a bad idea. The first night after he had taken it, he woke up about every 2 hrs. Last night he just couldn't stop fidgeting. I think it was after 11pm when my husband told me to go sleep on the couch and he would get Marhsall to sleep. He said he put his hand on Marshall's chest and his little heart was just going wild. Unfortunately, our doctor isn't on again until Tuesday. I think it's time to try another plan. I think for now I'll take him off the stimulant and try working on giving him appropriate things to chew and getting enough movement in. It doesn't really help. He still fights with his brother like crazy and he licks everyone and everything. We are exhausted. That's why my name on here is Anita Nap..becuase I'm always so tired.

Don't You Just Wish You Could Buy Toys?

I would love to buy Marshall toys!! Instead, I have to buy him chewy tubes, and left handed utensils, a scooper bowl and scooper spoon. I wish I had money to get him a nice trampoline with handle but he's doing OK on the one we have. I wish I had the money to buy him another action figure guy but he's actually really happy to play Disney's Toontown Online so I let him.

He did not want to go to school today. He asked me to send a note saying he can't go outside so school will be over faster. I told him it's OK for him to not like school. It's even OK for him to not get a sticker. I will still love him and he will still get to play Toontown. Today is day one of the stimulant. I'll let you know how it goes. Wish us luck..

Issues With Older Brother

My poor ten year old broke down today at dinner and just cried and cried. He was sobbing so hard. I held his hands and told him it's Ok to cry. I told Marshall to give him a hug. Marshall grabbed Nate by the shirt and pulled him up so he could hug him.

Nathan was 3 when I decided to divorce his Dad. He still remembers a few things but not everything. Nate was being abused (not terribly bad but it was getting worse) and his Dad was sleeping around. The decision to divorce him was made after a lot of prayer and fasting. I know it was the right thing to do.

Nate has ADHD and severe anxiety. He takes Concerta and Zoloft but he is just not handling things lately. He's upset by everything Marshall does or says. I don't know what to do for him. I have to call the doctor tomorrow. He had a bad day at school and was tired. He comes home feeling very upset most days. Some kids are so mean!!! Nate is a sweet boy and such a good friend to everyone but some people are not nice. He needs to be in a place where people who love him can show it. Unfortunately, when I'm babysitting, I don't pay much attention to him because I've suddenly got 5 kids instead of two.

He was too upset to eat, which will get me in trouble with the doctor because he's supposed to be gaining weight. I feel like the mom in this song--

Which Part Is Mine?
words and music by Michael Mclean

She was only a dairy man's daughter,
she was only a child of thirteen;
but the stars on the radio brightened her nights with a dream.
So she called up her best girlfriend Jenny
'cause she thought they would make quite a pair,
She said, "Let's you and me, try to sing harmony
at the amateur night at the fair."

But she only had the range of an alto,
so the part she knew best went to her friend.
And when Jenny's soprano drowned out the piano
they'd have to start over again.
And the dairyman's daughter would then say,

"Which part is mine?
and Jen, which part is yours?
Could you tell me one more time;
I'm never quite sure.

And I won't cross the line
like I have before.
So please help me learn which part is mine,
and which part is yours."

She grew up and got married to Bobby
kept him working on his MBA
they had two little redheaded children,
and one on the way.

Everybody said she could work wonders,
and she wondered what everyone meant.
She played so many roles, it was taking its toll
and she feared that her time was misspent.

So she opened her heart to her husband.
They discussed everything on her list.
from the kids, to the job,
to her feelings for her Bob.
But what it really boiled down to was this: She said:

"Which part is mine?
and Bob, which part is yours?
Let's review it one more time;
I guess I"m not sure.

And I won't cross the line
like I have before
if we just define which part is mine,
and which part is yours."

Every sleepless night knows many mothers
who are wond'ring if they've done alright.
And the dairyman's daughter knew
more than a few of those nights.

Had she given her son too much freedom?
Had she smothered her two teenage girls?
Did she spoil them too much or not trust them enough
to prepare them for life in this world?

So she opened her heart to the heavens
and she spoke of her children by name.
And the prayer that she prayed
that her kids would be saved had a very familiar refrain.

Which part is mine?
And God, which part is yours?
Could you tell me one more time,
I'm never quite sure.

And I won't cross the line
like I have before.
But it gets so confusing some times.
Should I do more, or trust the divine?
Please, just help me define which part's mine,
and which part is yours.

Did you hear me?
I can feel you near me.
It is the answer
that I've been longing for;

just to know you hear me,
and to feel you near me.
It's all the answer
that I've been longing for.

Did you hear me?
I can feel you near me.
It is the answer
that I've been longing for;

just to know you hear me,
after I've done my best,
and to feel you near me.
I know you'll do the rest.
It is the answer that I've been longing for!

I Must Be Crazy- What's Going On With Us

This is what is going on here. It's not the best post but I'm really tired and want to get to bed but need to post this.

We are planning a vacation at the end of April to go to Naperville, Illinois, where I grew up. I'm really nervous about how Marshall will handle it. He has been more intense these last few weeks. Yes, it does cycle, but this is out of control. He doesn't sleep well, tries to eat but tells me he has to throw up. He is hitting a lot more and now started licking people and things again. Gross!!! He likes to lay on my arm or just lay on me while I'm sitting up. He touched our feeding therapist in the crotch 2 weeks ago and has tried touching me on the chest a few times too. The hyperactivity is going strong still too. Oh, and he's been a LOT more angry and threatening over the last few weeks. He doesn't seem happy. Who could? I want to take a picure of him so you can see his eyes. They have dark circles under them. I brushed him and did his "tens" (joint compressions), and with Clonidine and Melatonin in him, he went to sleep. I love that time of day. In the mornings, he's a bit snuggly but easily upset. All he wants to do is to play Disney's Toontown Online . He cries a lot, screams a lot, talks a lot (AND LOUDLY!!!!!!), jumps like crazy all over the place, and is more defiant. We are all tired. Really tired. I have more that I need to blog about but I haven't had time to do it yet.

Feeding Issues Continue

We had cereal for breakfast but it took Marshall FOREVER to eat his little bit. I ended up feeding him most of it. Thankfully, he wanted a snack at church so I gave him a Sweet & Salty Peanut Bar. Those are SOOO yummy!

Then, this afternoon, we gave Marshall 1/4 cup of Chili, which he loves, and a few other things for lunch. He ate his crackers (the crunchy part of his meal), and a few bites of his fruit leather (the fruit choice), but STRUGGLED to eat the Chili. He just wouldn't do it. He played and talked and played and talked but never wanted to eat. He had one bite in 20 minutes. So finally, out of desperation, I started feeding him. The SLP told me I should because he has a significant feeding delay. First, I told him to eat four more bites (which he eventually did) but then he wanted to be done. So I fed him a few more bites but he just would not finish. I finally gave up but that means he only ate MAYBE 1/8 cup of Chili. That can't be enough to keep weight on this boy!

Dinner started with a battle. He complained and complained about the smell (we had Beef Stroganoff), said it was yucky before he tasted it at all. When my husband put Soy Sauce on Marshall's food he said it was yummy. Still, he wasn't eating so I decided to let my husband feed him this time because I already had a turn and I had been done eating for about 10 min.
I was only gone for a few min. when I hear coughing in the kitchen. My husband yelled something so I went in to see what was going on. There was Marshall throwing up in the trash can. At least he puked in there and not all over his booster seat (which I still can't get all the way clean). My husband was FRUSTRATED and earlier had sent Marshall to bed as a punishment for not eating. I told him we can't do that!! My husband's punishment is always send them to bed but I don't agree with that. Anyway, so my husband, in frustration said, "We might as well take him and let them put a G-Tube in him." Marshall is not that bad. Yes, he has major feeding issues and yes we are frustrated and SICK OF FEEDING ISSUES, but that doesn't mean a G-Tube is the answer. He is still about 34 lbs which is really not bad for a four year old. Unfortunately, the SLP doesn't have appointments available this week so we have to wait a week. She's only in on Thursdays but I will leave her a message and beg her to call us and give us SOME clue as to how to help this boy!! We're at a complete loss.

Sleeping is still a problem but he's had a few more good nights. Sadly, he looks so tired all the time. Last night he slept in our room on his little bed, and cried out so much in his sleep. I wish he could have peaceful, restful sleep. Maybe someday.

Feeding Therapy And How My Son Slipped Through The Cracks

I fought like crazy for many years!! I told people there's something not quite right with my precious child. Sometimes being poor really stinks. We're on Medicaid and I'm telling you, if the government goes ahead with Universal Healthcare the way they want to, we're all in BIG TROUBLE!

But enough about politics. Yesterday was a HUGE eye opener at Feeding Therapy. We now have 4 new diagnoses since starting with this therapist. He has dysphagia and hypotonia, oral motor delay, and fine motor delay. Interesting, isn't it, that nobody found this out before?

Yesterday, Marshall was his normal self for the SLP. He tried every trick in the book to not have to eat. His SLP was floored. He had made such awesome progress so quickly that when he was refusing to eat, she was so surprised. As she worked with him yesterday, she noticed he has a hard time with chewing. It was the first time anyone has said that to me. I don't know why it takes him 2 minutes to chew and swallow a bite and only when he has a drink will he swallow. The therapist put on gloves and got a piece of bubble gum. She rolled it out a bit and had him bite on it. She demonstrated proper biting but he wouldn't (or couldn't) do it. He would do a bunch of quick little bites but never did anything to the gum. She put it inbetween his teeth in the back and had him do 5 chews. After a couple times of this, he said, "My tummy is full". LIGHT ON FOR MOMMY!!! He says hi tummy is full because it's too exhausting to keep chewing and he doesn't want to do it. THAT is why he would much rather drink his meals. That's when she said he has an oral motor delay.

So, this week, we have to work on his chewing. We have to use bubble gum and have him practice biting properly, and then also have him bite on chewy tubes. At every meal he should eat a hard munchable, 1-2 soft cubes, and one hard meltable. Those are the textures. Now with those textures in mind, he needs a protien, a starch, and a fruit or veggie at every meal. That's a lot to think about. Especially with both my kids losing weight now because they don't want to eat. I'm going to buy heavy whipping cream today, among other things, to help them gain weight.

Feeding Breakthrough!

Marshall has been in feeding therapy for I don't really know how long. He worked with his OT for at LEAST a year before she gave up and sent us to the Speech Language Pathologist. The OT helped him work on the sensory part of his feeding aversions and the SLP worked on the behavioral. What an amazing difference yesterday was. Not only did he eat Cream of Wheat for breakfast (which he always said he hates), he ate Spaghetti and Meatballs for lunch (Chef Boyardee)!!!! This is shocking! I can't tell you how long we've been frustrated with his terrible eating habits. We also took him off Pediasure and he now drinks whole milk, which he hated before and refused to drink.

So, how did the therapists do it? Like I said, it took well over a year with the OT working once a week with him. She said there are steps to eating.

Step 1 - The child is able to TOLERATE THE PHYSICAL PRESENCE/SIGHT of the food (i.e. will be in the same room as the food or at the same table as the food.)

Step 2- The child is able to INTERACT WITH THE FOOD (i.e. Uses a napkin or other food to touch the target food)

Step3- The child is able to TOLERATE THE SMELL OR ODOR of the food

Step4- The child is able to TOUCH THE FOOD TO HIS/HER SKIN (i.e. Tolerates the food touching a body part, including fingers, hands, face- the closer the physical proximity to the mouth, the more threatening)

Step5- The child is able to TASTE THE FOOD (i.e. Any action wich results in the child getting a taste of the food)

*These steps are progressive, such that the child will usually master step 1 before he/she masters step 2, etc. Each of the five major steps is composed of several sub-steps, which will vary from child to child. (I have another handout on that. I will scan it in)

So, that's what my OT did with Marshall. When the SLP got him, his feeding problems were behavioral. She also thought he had Reflux, which I agreed with because he would always tell me he threw up (multiple times a day). When we went to behavior feeding therapy, she started with a dry spoon and told him "open" and he was supposed to open big. He didn't mind the dry spoon that much but then she dipped it in some applesauce and said "open" and he did not want to open. She asked him, "Who is in charge of food? Is food in charge of us? No, food is food! Marshall is in charge of food." She tells him that every time. He's also not allowed to say "Yuck" or "I don't like that". He has to say "I'll try". She explained that everybody likes different things and it's OK if you don't like some food. You can just try it. Every time she dipped the spoon and put it in his mouth, he got to play with a toy for 20 seconds. She used Mr. Potato Heads the first time. Each time he took a bite, he got another piece of Potato Head. She IMMEDIATELY brings the toy out after she gets a bite in his mouth. That distracted him enough to forget he didn't think he liked applesauce. If he clamped his mouth shut and refused to try the food offered, she turned her back on him and ignored him for 2 minutes. As soon as she turned her back, he immediately said, "Ok, Ok. I'll try," but he still got ignored for the rest of 2 minutes. That worked wonders. I just did it yesterday.

There is so much more to tell but I've got to get going. I'll scan in all the papers my OT has given me and post them here. If I can find the SLP's paper on feeding therapy, I'll scan that too. My computer room is quite a mess right now because I just got a new-to-me desk.

HE ATE CREAM OF WHEAT!!!!

We had a major breakthrough with feeding therapy. Marshall ate Cream of Wheat this morning without complaining!!!! One of the problems with his feeding is that he is SOOO delayed in fine motor that he gets frustrated while trying to get the food to his mouth. I KNEW he was delayed in fine motor but it seems like I'm the only one who sees it. Ugh....

I will write more about feeding therapy later. I've got a million things to do while Marshall is at school.

Getting a Grant

I need to buy a trampoline with a handle on it and I found an AWESOME one on Southpaw's website. The only problem is we're just poor college students. Well, my husband is. He is a grad student at BYU and he gets paid part time to be a research assistant. Next semester he'll be teaching again part time but he gets the same amount of money. He also teaches Astronomy at UVU two nights a week but it's just not enough to cover all our expenses. Not to mention a $335 trampoline. I applied for a grant to get a therapy swing for Marshall and got it but I'm worried they won't give me another grant. Does anyone know where I can find out about places that will buy these things for you? The place I got the swing from was Challenged America. They have a $500 limit so this is not over that limit. I think I'll try it but don't know where to go if they say no. We need a small indoor trampoline. My downstairs neighbors agree. They're nice enough but they get upset when Marshall jumps (which is constantly). Lately, he's been flapping his hands and jumping A TON. He always does but he's doing it even more lately, if that's possible. He's getting more defiant again too. I'm not convinced that upping his dose of Risperdal is a good thing. He just gets used to it and we're back to square one again. I don't know what to do.

Two Nights in a Row!!

Marshall has slept through the night in his own bed 2 nights in a row!!!! We used to have a couple of nights here and there where he slept great but it's been so long. We're THRILLED!! Now if he can only keep it up. I'm not counting on it though. Not because I'm a pessimist, but because I'm a realist. It takes more than 2 days to convince me that he's going to keep going with that pattern.

Oh, and my husband pointed out that my description needs to be changed. Marshall is now four years old and we're getting closer to a diagnosis. Not there yet but at least we're getting somewhere.

I have to share something I had forgotten about. You know how people say that some kids with Autistic Spectrum Disorders are pretty normal and then they suddenly change? Well, today I was talking with the lady who used to watch Marshall for us during church for the hour we had to leave. We used to have a calling as Sacrament Meeting coordinators at a Mentally Handicapped Facility. Those places aren't the cleanest and we didn't want to take Marshall there. He was barely one and still quite susceptible to germs so we made arrangements for this woman and her husband to take care of Marshall for the Sunday School hour. They watched him every Sunday for several months. She said one day he just changed. He was fine with them watching him and would play and interact but one day he just zoned. He was about 16 months at the time and wasn't really talking yet but she said he just stared and wouldn't respond to anyone. He wouldn't just snap back to himself when he saw us again either. It was like he was looking right through us. The longest he did this was 20 minutes. The thing that caught my attention today was when she said, "He just changed suddenly. One week he was fine, the next time he would zone out." Strange huh? He did this every time we left him after that. He also did it in nursery. He just stopped what he was doing. He didn't cry, or talk or anything...just stared off into space. It took Brian a good 20+ minutes to bring him back after that one too.

Marshall's History As Written For His Pediatrician

Read the post underneath this one first, then you will understand why I'm posting this and what it's about. I'm warning you- it's long. : )

Information for Marshall's doctor
Traumatic Birth
Marshall was born on October 24, 2004 at 33 weeks 6 days gestation via emergency C-Section. Prior to that time, his mother had been having pre-term labor and was taking Nifidipine to stop the contractions. She also had been given Magnesium Sulfate 2 times (I think it was for 2 days each time). When Nifidepine wasn’t working to stop contractions, Aprilyn had to go to Labor and Delivery where they gave her a shot of morphine and phenergan and sent her home. She was bleeding a lot and had Placenta Previa. She was hospitalized 1 week prior to the birth of Marshall and kept in Labor and Delivery. When the contractions got closer together and the Nifedipine wasn’t stopping them, the doctor ordered Magnesium Sulfate. Aprilyn was having a lot of difficulty breathing while on the Magnesium Sulfate. The contractions were coming strong even though Aprilyn was on Mag Sulfate. The doctor finally agreed to let her deliver. The anesthesiologist gave Aprilyn an epidural and then came in to pop her water. She tried to tell the doctor (Dr. Thorpe) that the baby’s cord was in the way so the doctor ordered an abdominal ultrasound. The ultrasound tech couldn’t see anything but Aprilyn had seen it on a vaginal ultrasound. The doctor wouldn’t listen and popped the water anyway. Marshall’s cord prolapsed and Aprilyn was immediately prepped for a C-Section. Thankfully, a nurse decided to check to see how the baby was doing. Marshall had quickly descended down into the birth canal so the nurse had to shove him back up. The C-Section turned into an emergency with the NICU team not even being warned Marshall was coming. Dr. Thorpe had to use forceps and a vacuum to get Marshall out. He was immediately bagged until the respiratory therapists could get there and tube him. His APGAR was 2 at birth and either a 4 or 6 at five minutes. Marshall was rushed to the NICU where he was put on a ventilator and bili lights (he had severe jaundice).

NICU stay
Marshall spent 3 weeks in the NICU. He was on the ventilator for 24 hrs, then on blow by oxygen, then by day 3 he was breathing room air. He had to be on 2 bili lights and we weren’t allowed to hold him for several days. After about 3 days, we got to hold him for 20 min. twice a day. After about a week, he was transferred to Nursery B, where we were told at that point he was just a “grower and feeder”. He was fed by gavage tube until he was 3 weeks old (36 weeks gestation) and learned to suck, swallow, and breathe. He had a lot of apnea and bradycardia while in the NICU and after he was released. A test run at the NICU (some kind of probe test? I just know it took all day.) and it was decided that his apnea was due to his Central Nervous System not being properly developed. He was put on Caffeine Sulfate and he improved. He was sent home on an Apnea monitor and taking Caffeine Sulfate as well as iron drops.
Home With a Preemie
Marshall was always a fussy baby and not easily soothed. He loved being swaddled TIGHT and would only tolerate his swing if he was wrapped very tightly. He was easily overstimulated. The NICU had a class for new preemie parents that Aprilyn attended. They taught her that when the baby gets the hiccups it’s a sign of overstimulation. He got the hiccups a lot but once we swaddled him tightly and took him into a quieter, darker room, he was fine. He didn’t sleep well at all! He still had quite a bit of apnea and bradycardia. He was able to get off the monitor in January (I think) and caffeine (I can’t remember when but it was quite a few months.) Marshall never slept very much and was irritable a lot. We kept thinking it was colic and it would improve as soon as he grew out of it. We gave ourselves goals like: we can deal with this until he’s 4 months old and then he’ll grow out of it. When he was 4 months old and not getting any easier, we thought it was just that he was preemie and we had to wait for his adjusted age to be 4 months. That came and went with no improvements.

When We Noticed a Problem
Marshall was not really a happy baby and always so difficult but we love him. When he was about 6 months old, he would sit in his high chair and bang his head on the back of it repeatedly. He also liked rubbing his head on the floor (still does) and when he would sleep (yes, he occasionally slept), he slept with his head pressed in the corner of his crib. He still seeks pressure on his head today. When he was about 9 months old, he would get into the cupboard but not take anything out. He just opened and closed cupboard doors over and over and over. He started banging his head more and more as he got more mobile. He had to be held most of the time or he would just cry all day. We wore him in a SNUGLI until he was 9 months old. Marshall was fussy and irritable a lot. He would bang his head on HARD things like the metal door or the cement steps outside. We were worried and knew there was something not quite right about him. One time, when he was about 18 mo or so, he drank an entire bottle of white board cleaner and said it was yummy. He brought the empty bottle to Aprilyn because he wanted more. We took him to the ER and they drew his blood and we waited there for a long time but he was fine. In our search for help, someone recommended The Children’s Center in Salt Lake. Aprilyn took him up there and it was the first time someone took her seriously in regards to Marshall’s behaviors. We had previously taken him to Wasatch Mental Health but they said there was nothing wrong with him except he had sensory issues and they don’t know enough about those. The social worker at The Children’s Center recommended we see a Developmental Pediatrician and get into Occupational Therapy. The stress placed on our family was (is) so great that the social worker worried about us as parents. We don’t get much of a break. We also saw a Child Psychologist (or was it a Psychiatrist..not sure). She did prescribe Clonidine for him to help him sleep. See below for a list of all meds we’ve tried and their side effects. Marshall was REALLY angry most of the time. He would hit everyone all the time and bang his head a lot too. He still bangs his head on us but not as hard as he used to. When we first put him in a regular bed and had the boys' bunk beds separate, we put the crib bumper pads around his bed and put the bed rail on that would normally be used when you have the top bunk set up high. He still craves pressure on his head and we find him smashed up against the head of his bed every night so we put a body pillow there.

Eating Problems
Marshall hates to eat. It has been a constant struggle with him from the very beginning. He was breast fed but in order to get him to eat, he had to be in a dark, quiet room and had to be completely swaddled or he was too distracted to eat. When Brian would give him a bottle at night so Aprilyn could sleep, he had to be swaddled tightly and Brian had to keep moving the bottle around to get him to keep eating. As he grew, it was harder to breast feed him. He finally quit breastfeeding altogether at 8 months. He just refused to nurse anymore so we had to buy formula. When he was 4 months adjusted, he had to eat baby food to get him to poop on his own. He loved sweet potatoes. He ate pretty well until he turned one. Then it just all stopped. He wasn’t gaining enough weight so he had to be put on Pediasure to help maintain what he had. As he has grown, his dislike of food has increased. Meal time is his LEAST favorite part of the day. It’s a huge battle just to get him to eat things we know he likes!! He drinks 1-3 cans of Pediasure a day. Sometimes he won’t even drink that.

Occupational Therapy
We started OT about 2 yrs ago I think. After the initial eval, the therapist said he’d have Marshall sleeping through the night and not banging his head within a few months. It didn’t happen. Marshall would NOT tolerate swinging at all. The OT said swinging is very calming and organizing but Marshall was terrified of it. It took about a year to get him just to tolerate swinging.

Sleep Problems
We were DESPERATE for some sleep. We kept telling the pediatrician there was something wrong but he just blamed us and told us it was poor parenting. The doctor told us we had to just let him cry it out. The problem was that when he would wake up in the middle of the night, he wasn’t crying. He was playing in his crib. We decided to video tape it. So, the first time he woke up at night, we turned on the camera. He would play for about 20 minutes, then lay down and sleep for 20 min and then wake up again..all night long. Nahthan had to sleep on the floor in our room because Marshall would wake him up. We decided to switch Pediatricians because we really felt like there was a reason this child was waking up and our doctor would not recommend a sleep study. We tried seeing Dr. Marci Connor in American Fork (I think that’s how you spell her name). She recommended Dr. Kathleen Pfeffer, a sleep specialist. We went to see her and she said we had to get him sleeping before we could do a sleep study.

Meds We’ve Tried
Clonidine – made him very irritable the next morning and he couldn’t wake up all the way. He was about 18 mo old when we first tried this one. He currently takes this one 1 hr before bed and it works pretty well. Sometimes he sleeps through the night even!
Trazadone- worked great but not enough. Had the desired effect but still didn’t make him sleep through the night. Eventually he gained a tolerance for this drug and it stopped working altogether.
Melatonin- worked initially but never made him sleep through the night. It was enough to settle him down for sleep when coupled with Trazadone.
Remeron- made him cry out in his sleep a ton. He wasn’t ever fully awake but had fitful sleep and didn’t sleep through the night.
Neurontin- Dr. Pfeffer prescribed this one after one of his sleep studies showed a ton of Periodic Limb Movements. This made him SO upset!!! This was the worst drug we’ve tried on him as far as side effects go. It increased his undesired behaviors, (i.e. screaming, hitting, head banging, not tolerating ANY change).
Rozerum- no bad side effects, just didn’t help him sleep through the night.
Zoloft- A developmental Ped we saw prescribed this. I can’t remember the name of the doc but she’s in SLC and she’s supposed to be the #1 developmental Ped. He got REALLY angry while on this medicine and we begged to have him taken off. The doc increased the dose instead. He got even angrier! Finally, we weaned him off ourselves.
Dextroamphetamine- made his anger issues get worse. We noticed a negative reaction right away but Dr. Jones wanted to increase the dose instead of change the medication. Increasing the dose just made him even angrier. We finally convinced Dr. Jones that this was a poor choice of medication. Marshall was 3 when he was on this one.
Risperdal- We noticed a significant change very quickly when Marshall was put on Risperdal. He still got upset but it was more like a typical 3 yr old. It was such a RELIEF!! Originally, Dr. Jones prescribed 3 tablets a day but we started with one and loved what we saw. We kept him at one pill for a few weeks. Then he started getting extremely angry again so we upped the dose to two tablets. We are going to try adding the 3rd now. He’s been on 2 tablets a day for several months now.
Ritalin- if anything, this drug made him even more hyper than he already is and that’s saying a lot!! Again, we were told to increase the dose. We did but it still made him more hyper. We decided this was not the right choice of drug and we took him off.