Thursday, October 30, 2008

Happy Halloween!

I just wanted to wish everyone a Happy Halloween. I really do hope everything goes well for everyone. As much as Mason loves Halloween, it is always a little difficult due to his sensory issues. Costumes that work for him are HARD to find, but I think we had good find this year with a pair of Skeleton pajamas from Gymboree. Mason really enjoys the Halloween carnivals, though there is no way on Earth he will do the face-painting. The kid can't handle stickers or even bandaids, so face painting never happens. I'm hoping one day he'll be willing to try it. But if biggie. I've got bigger things to worry about. He loves the candy he gets and he loves to watch other children in their costumes, but he is not a big fan of dressing up. Last year I think he enjoyed opening the door for Trick-or-Treaters even more than actually going Trick-or-Treating himself. Every time the doorbell rang, he'd run to the door and flap his hands as he anticipated the "Trick-or-Treat". He was also known to yell "Trick-or-Treat" back to the kids at the door. They always look very surprised--like they're not quite sure what to do. It's kinda funny. He loves books about Halloween and Halloween decorations, but he is not so fond of spooky Halloween music, scary costumes, or flashing strobelights. He's happy to go Trick-or-Treating at the local Trunk-or-Treat, but TONS of kids and people around is hard for Mason. Even though it is hard, he usually pushes himself through it for the candy. This kid will do anything for candy. Carving pumpkins is always a favorite, but he absolutely refuses to touch the guts. cleans it out while Mason watches. When it's ready to carve he draws the face where he wants it, then he watches as I cut on the lines he drew. It is a good system that he seems to enjoy being a part of. He's very proud of his pumpkin this year. I think it is partly because he got to go to the pumpkin patch and choose it. Once we got home, he never wanted to let it out of his sight. Anyway, I really just wanted to wish everyone a Happy Halloween. I hope your kids are happy and your day is fun!

Monday, October 27, 2008

Hi girls,
I want to share with you a post from the blog of another special needs mom.  Her name is Suzanne.  She has two beautiful daughters who both have complex 1 mitochondrial disease.  It is a progressive disease that has no cure.  I have been following her blog for several months, and have been absolutely inspired by her heartfelt words.  
With all of our recent talk of the "my child is different" feeling, she was so sweet to give me permission  to share this with you.  A big thanks to you Suzanne!  I have read it over and over, and it touches me every time.  I hope you'll take the time to visit her blog yourself at   She promises to update it again soon.  I think you'll all relate to it and enjoy her talent for writing like I have.
-Tiptoe Mama 

Dear Little One,

Things are not always as they seem.

We were at the park the other day, you and I, and your big sister too.  She is four, only a year older than you, but she can run and jump and climb.  And you, completely in love with her, always laugh and clap- and share her joy.  Maybe you imagine yourself traveling in her fluid body instead of resting on your own flat feet, managing your weak muscles that prevent you from walking independently. 

On this day we can see the playground ahead, and your sister begins to run.  My hands are on your waist, supporting your steps with a solid strength that enables you to shuffle your feet into an awkward yet productive gait.  You are impatient; there are probably hundreds of tiny footsteps between you and your sister.  You reach your arms up asking for help.  You want me to carry you.  I refuse the voice in my heart and I say "no".  I take your hands in mine and we begin the slow walk together.

Finally when we arrive at the playground, you want to climb.  I hold your waist, your arms and sometimes just your hand to stabilize you as you move carefully up the steps.  A little boy, almost half your size walks by you, too close - his body briefly making contact.  It is enough to challenge your balance and you begin to fall.  My hand quickly pulls you upright to the stance you had worked so hard to establish.

Your hands in my hands, you lead me climbing clumsily to the top of the slide.  I place you in my lap.  You begin to scream loudly and I see the boy's mother studying you and me.  Your sister waits below, calling encouragement, anticipating the excitement of your accomplishment.  We push off the top of the slide and you are crying in fear as you always do.  And five feet later as we reach the bottom I hold you in front of me and you laugh!  We are closer to the boy's mother now, and we make eye contact.  Before I can even consider conversation she asks "How old is she?"  "Almost three", I reply..."And your boy?" She answers that he has just turned one, a few months back.  She abandons the conversation, afraid and unable to ask the obvious questions.  She turns her head and her eyes follow her son instead. 

You see, little one...things are not always as they seem.  When you are tired and I help you walk, when your weaker muscles need the support of my strength, or when I carry you, you may cling to me.  You may even be restless or fussy.  Others may see your physical size, your neediness and think I am indulging you.  But things are not always as them seem.  I know your needs.

Sometimes, you may cry or scream in public.  It is because I am challenging you.  Expecting you to act like other children as we move through public life socially as a family.  Others may see a tantrum; I know your special needs. 

And when you move your body, quickly, repetitively, distracting or disturbing those around us, they may see immaturity, disruptive behavior.  But I know you are adapting to the challenges of your environment the best that you can.  I know your special needs.  

Love, Mommy


Sunday, October 26, 2008

Primary Program

It's been a long day..don't we all have those? Today was the Primary program in sacrament and to be honest I wasn't too nervous because my two children involved had been reciting their lines over and over at home. My son got up to say his line and put his tie over his face and refused to say the line. He just kept shaking his head no. Everyone thought it was cute and giggled, but something inside of me broke a little. After the song everyone sat down and he stood there next to the front, not moving. One by one his classmates tried to get him to sit down and finally he did, into the arms of his teacher. She rocked him through the rest of the meeting on her lap. Bless that sister. I had tears streaming down by the end of the meeting because it was one of those "my child is different" moments. My daughter did well until the end, she came off the stand sobbing. "I missed you up there" We couldn't get her to calm down so we ended up leaving church instead of giving a talk in Primary. It's the first time we have left early in years. I know the Lord sees our hearts and knows His children. One day at a time.

Saturday, October 25, 2008

Phew! The Party is Over!

Marshall did NOT have fun at his party. He kept having HUGE meltdowns over and over and over again!!!!! It got so bad that I had to remove him from the room and put him in my bedroom with my poor sick hubby. He bit his brother and threw a rock at his friend. Every year I have done a birthday party for him and every year he seems to get more and more angry!!!! So here is my new plan. NO MORE BIRTHDAY PARTIES! Maybe we will have our cousins come over to play but that is it. Why put him through the misery??? He slept really poorly last night so maybe that has something to do with it. I'm not sure. I just know he's been agitated all day. He has been screaming at Nathan over every tiny thing. He's also been crying that his bum hurts. He always says that but lately he's been saying it more and more. I will take him to the doctor next week to see if he can help me figure out why Marshall is hurting. I have no clue. Maybe he's just extremely over sensitive right now. Is it just me, or do his behaviors just scream Autism?

Two Birthdays

Friday was Marshall's birthday. He is FOUR!! WOW! I can't believe he's four already. Time flies. As difficult as life is with him, I would NEVER want it any different. I'm glad he is part of our family. I never realized just how close we came to losing him at birth but thanks to some nurses, his life was saved. Phew! He was the 1st person to wish me Happy Birthday 4 years ago. My birthday is today. I'm 34 now. I'll have to keep reminding myself of that fact because I keep forgetting it's actually my birthday.

Here's my boy once they got him stabilized. I think this was taken by my Dad on Oct. 25, 2004.

He's doing better in this picture. He's breathing on his own but still has the IV in his head. It's hard to really get a grasp for how little he was. These pictures don't do it justice. Just think about how small those green Soothie pacifiers are. It looks gigantic on him!!

This was taken a few months after Marshall was born. He's sitting with his cousin who is only 3 weeks older than him.

Which feet do you think belong to Marshall? Notice the cord up the middle of the 2 babies? He was still on an apnea monitor.

Here's the birthday boy yesterday. His brother gave him a Curious George monkey and he LOVES it!

Friday, October 24, 2008

Hi All

I thought I would get on really quick. I haven't posted anything for a while because there isn't anything really to talk about. Bree Anne is doing so great in PT/OT and has started speech... We are working on signing she is doing really well in that also.
I have been reading all of your posts, I hope you are all doing well or better at least. I don't know any of you in person, but I can tell that you are all so sweet and loving. Difficult times make us stronger... as hard as they may seem. Keep up the awesome Mommy work... Your kids love you for it even if they can't/don't/ wont show it! That is so hard for me to remember sometimes, but it really is true!

Thursday, October 23, 2008

What Helped Me Tonight

I just wanted to share the lyrics to this song by Cheri Call. I was listening without totally listening but somehow the words got through to me.

Only the Brokenhearted
(Cherie Call)

Who can hear your sorrow?
Who can listen right?
Who can tell you stars shine through
The darkest and the longest lonely night?
Only the brokenhearted can
Who can feel the fire?
Who can taste the rain?
Who can laugh till tears fall?
Who can know your pain and take your hand?
Only the brokenhearted can

How are you gonna take a stand?
How are you gonna hear the band?
How are you gonna love the sunlight
If those precious summer days never had to end
You have to learn like only the brokenhearted can

Broken hearts are deeper;
They've been open wide
And the tears become containers
To hold more love inside
And truly feel what only the brokenhearted can
If you need a shoulder, bow your head and pray
He'll wrap you like a blanket
With love to face the day
Because He knows like only the brokenhearted can

How are you gonna comprehend
Love that has no end?
Why'd you ever have to leave Eden
If you were never truly meant to understand?
You had to live like only the brokenhearted can

Who can love you deepest?
Who can hold you tight?
Who can tell you stars shine
Through the darkest lonely night?
You know I can
Like only the brokenhearted can
The brokenhearted can
The brokenhearted can

All songs ©2001 MendonHouse Music (ASCAP), except "He Gives Flowers to Everyone" and "Where Faith Lives", ©2001 MendonHouse Music and Diamond Aire Music (ASCAP)

To Diagnose or Not to Diagnose, THAT Is The Question!

Do you ever have such a bad day that you feel nauseous at the end of the day? You know, the kind of bad day when you barely make it to bedtime and then you are afraid to go to sleep because it means getting up and facing it all again tomorrow. We have had a bad week. Every day seems to be building on the next and it's not getting any easier. Marshall is spiraling downward more every day.

He refuses to go to the Story Time at the Library. When I told him we were going to the library, he said "NO! I'm not going. " I calmly explained he was indeed going. He said, "I won't put my shoes on." Defiance has been his motto this week. He has had meltdown, after meltdown, after meltdown, after meltdown...on and on it goes, where it stops, nobody knows!! I wish I knew. Tonight I want to cry. I'm burned out. I'm tired of him spiraling downward. I'm tired of not knowing I'm doing something he doesn't like and having him scream at me and throw a huge fit. I don't know what I can do to help him. When he's upset like he's been, he hardly talks. In the mornings, he comes in and just grunts. He won't talk.

Today we met with a Grad Student at BYU who is working in the Comprehensive Clinic. We got on the list to have them do a full Neuro Psych eval on Marshall but now we're not sure we want to go through with it. We've HAD the ADOS done before. Two times now actually. We've had the parent interview too. Not much has changed since January. Sure, now he's potty trained but that's about the only difference. Why should we get an evaluation? We can't really afford it. I think it was going to cost us one thousand dollars. OUCH! For a student family, that's a HUGE amount of money. My husband is a Grad student at BYU. He is getting paid as a research assistant this semester and he also teaches Astronomy at UVU. We don't really have any extra money. I'm torn between thinking we might actually have a shot at getting an accurate diagnosis and just not being willing to give my kids nothing for Christmas so we can diagnose Marshall. It's just a label. That's what I tell myself, but I feel like I need to know. He's not getting better and he's in his 2nd year of Pre-School.

As if his aggressive behaviors weren't enough, he has big problems with boundaries. He touches my breasts on purpose sometimes. He tries to touch me other places. Every once in a while, he hits his brother in the crotch on purpose. One day, he even put his face in my neighbor's crotch. She knows what Marshall is really like. I made him say sorry but he wouldn't talk. I was MORTIFIED and totally disgusted!! This behavior is not getting better and I don't know what to do! He's going to be four tomorrow. If we can't get this under control now, what's to say it won't get worse as he gets older? I feel like it probably will.

I'm just going to go take some Melatonin so I will fall asleep and pray that I can handle tomorrow.

Potty-Training Advice (or just Mommy Advice)

Mason has been a NIGHTMARE to potty-train. I literally have nightmares about it. We started training him (for the second time) at Thanksgiving time last year, and it took well into the Spring to consider him mostly trained. I still don't say that he is 100 percent trained because he rarely, if ever, initiates that he needs to go and he is still quite dependant on help in the bathroom. Anyway, I am totally at my wits end with him--it actually brings me to tears any time he has an "accident", but especially when the accident is a poop accident. Like, just now, he pooped his pants when he was playing in his room alone. This makes me sooo mad because he knows better. I feel like an awful parent because I want to punish him. I know you are not supposed to make a big deal about it because kids have accidents, but he has them often, and after a year of training, it is really taking a toll on me. I want to yell at him or take something precious away or something......but I don't. I try to stay calm and let him know it's okay, but I am SCREAMING on the inside. Help me, ladies. Help me cope with this. I get so mad I cry. I'm not mad at him--I'm mad at the autism that has tweaked his brain enough to make potty-training really difficult. He just doesn't get it. As I am trying to clean him up, he is in his own little world laughing and going off about other things. He has no clue. What do I do? How do I deal with it and stop getting so upset about him not being a normal 4 1/2 year old using the toilet on his own and not pooping his pants just because he forgot he was supposed to go in the toilet? I need some serious parental advice right now.

As I'm reading this, a thought just occurred to me that maybe I'm not as okay with the whole autism thing as I thought I was. I really thought that I had completely accepted it and embraced it and that I was ready to tackle life as the mother of an autistic child. But maybe I haven't totally accepted it, and maybe I'm not completely okay with it. It's a surprise to me to have these thoughts because I've been okay with this for a good year and a half now. Maybe I've been fooling myself. I think I've been okay with things because I told myself that in time, he will do better and become more typical, but I just realized that he is not really becoming more typical. In some aspects, I guess he is, but in many he is not. I worry about him being the kid in school that everyone thinks is weird and that nobody wants to play with. I worry he'll be the junior high or high school kid jumping around, flapping his hands, making strange noises, and laughing to himself at something really funny inside his head. Maybe he'll never grow out of it like I thought he would. Maybe he'll be having frequent toileting accidents for the rest of his life. Maybe I've been giving myself false hope that one day he'll be normal.......Then again, maybe today was just a really hard day and tomorrow I'll feel back to normal. I'm going to stop second-guessing myself and just go with that. I'm sure a good night sleep will fix a lot of what is going on inside me right now. It's just been one of those days.

Tuesday, October 21, 2008

IEP Meeting Today

Isn't he cute?! He makes me laugh and then makes me frustrated all within a few minutes of each other but that's my boy and I'll keep him. Frustrations and all, I'll keep him.

We met with Marshall's Pre-School teacher for his IEP review. The Assistant Principal was there and also the teacher from the Title 1 Pre-School. We were told that's because we need to have someone there who is General Education. Marshall's teacher has a degree only in Special Education.
We read through the goals, which I will have to tell you at a later date as I can not find the IEP right now. It's here somewhere. :) The good news is, we finally had a chance to tell her all about what it's really like to be around Marshall. We told her about his birth and how he nearly died. I didn't realize it at the time but an APGAR score of 2 is NOT good. DH thinks the only reason he got a 2 is because he had a pulse and a heartbeat. My boy could have been born dead!!! He nearly was. As hard as things are with him, I'm so glad he survived. What a nightmare!!! NICU wasn't even ready for him because the doctor messed up. Thanks a lot Doc!!

He will finish up the school year and then have more testing done in the Spring to determine what happens next year. I think his fine motor skills are quite delayed. When I told the teacher and Asst. Principal that he still spills on himself when he's feeding and he can't manipulate Duplo Legos, the Asst. Principal said, "That's a delay." How sad that I was happy to hear that word. I shouldn't be happy but I am. It means I'm not crazy. It means someone else thinks that an almost 4 yr old (4 on Friday!!!!!) should be able to play with Duplos and at least put them together and take them apart. Don't even get me started on regular Legos, or sewing cards, or coloring, or buttons, or zippers, or snaps....

I'll write more when I can tell you the goals we made.

The Reults From the Feeding Eval

We got the letter from the therapist today. The feeding therapist said his medical diagnosis is Dysphagia. I'm still researching this one but it is a swallowing disorder. I've read some stuff on it today and Marshall definitely has some of the symptoms. The therapist said he has a severe feeding disorder. She wrote that he has trouble with pureed foods, such as pudding. He didn't like the lemon pudding but he likes chocolate and vanilla pudding...sometimes. His sensory preferences include highly flavored and low textured foods.

Child/Caregiver Desired Outcomes
1. Marshall will tolerate a variety of foods consistently in order to improve solid food nutrition- Anticipate goal to be achieved within 4 months

2. Marshall will tolerate a) 3 new proteins, b) 3 new starches, and c) 3 new fruits and vegetables- anticipate goal to be achieved within 4 months.

3. Marshall will gain weight properly- Anticipate goal to be achieved within 4 months.

The recommended Model of Therapy for the episode of care associated with these priorities is: frequent
Duration- 4 months
Frequency- 2-4 times monthly

The therapist goals for the episode of care associated with these priorities are:
1. Marshall will accept 10 spoonfulls of textured foods
2. Marshall will tolerate a) 3 new proteins, b) 3 new starches, and c) 3 new fruits or vegetables
3. Marshall will gain weight appropriately
All goals are anticipated to be completed in 4 months.

So there you have it. I'm not crazy after all!! Marshall really does have a feeding disorder. Now, will I share this on my public blog that my family reads? Probably not because they will just tell me, "Well, he eats fine for me!" Yeah, right. Define fine. He eats? He takes a few bites? I post on here because I get support. Non-judgmental support. My Dad is very judgmental and just downright rude. I don't need that.

Top Ten Things to Say to Mean People.

Perhaps this post is inappropriate. I try not to be too negative about things. I have to stay positive or I'm shooting myself in the foot. anyway, take this for what it's worth.

My M.K. has a wheelchair. And along with a wheelchair, comes a little tag to hang in your car that allows you to park in disabled parking stalls. I try to be very careful about parking there though. M.K. is still small, and is usually carried into stores and placed in a shopping cart. I think there are probably other people who need those spaces more than we do. Really, any hardship of parking far away would be on me, and I'm not disabled. I admit that I occasionally park there if I really need to, but I hate it. Whenever I do it, I get the stink eye. Dirty Looks and shaking heads.

A few weeks ago, my husband parked NEXT to the disabled spots at the grocery store. He watched an older couple looking at him and talking angrily to each other. As they got out of their car and walked past him the woman said "You sure don't look handicapped." My husband has better people skills than I do. He calmly pointed out he wasn't actually even parked in a handicap spot, and that he doesn't park there unless he's with his daughter who IS handicapped.

When he came home and told me the story, I was really irritated by it. I hate getting evil eye, but for someone to say something really upset me. If it had been me, I probably would not have said anything back to them. I'm that kind of girl. I have no spine, and even if I did, I can't think of anything good to say till later. I go over it again and again in my head trying to think of that perfect thing to just...put them in their place. You know. Usually I just end up imagining so hard that I catch myself saying something clever and smug to the mirror. Never have I been so brave or witty in real life. This time however, it's a situation I'm sure I will face in the future, and I'd like to be prepared. I've had several weeks to think about it, and I've come up with a few ideas.

idea #1
meanie: "You sure don't look handicapped."
me: "Oh, and what are you suggesting that 'handicapped' people look like?"
It doesn't seem that anyone supposedly sticking up for the rights of the disabled would have a proper or politically correct answer to that question.

idea #2 (given to me by another Mom)
meanie: "You sure don't look handicapped."
me: "I would GLADLY give up this spot if my daughter could walk!"
Perhaps an approach of humbling them with the reality of the situation.

idea #3 (This is my FAVORITE!)
meanie: "You sure don't look handicapped."
me: "Thanks, neither do you."

I would love some more ideas. I thought that with your help maybe we could find some comedy and lightheartedness in the situation and perhaps come up with a top ten list of things to say.....So, what are your ideas?

Monday, October 20, 2008

Where Has My Son Gone?

The last few days I have been punched and kicked more than ever before. This morning I am feeling sad about where my cute, affectionate little boy has gone. My four year old is really struggling with his temper lately. It all started at pre-school where another classmate was bullying him every day. My husband told our son next time to punch him in the nose. Mom's solutions was to tell his teacher and use his words. Well, now my son and this bully are best friends. We are tyring to transition my son from the Children's Center to our local elementary school, but it has been rough for him. He loves it up there. I have had to hold his arms and legs gently as possible to avoid injury to me or one of my other children. Any ideas moms? How do you curb and prevent the violence? I am feeling much more calm since I have already been through this once before with my oldest. It's no longer an embarrassment or a trigger for me to get frustrated. I just want it to stop.

Wednesday, October 15, 2008

Play With Me, Mommy!!!

"Normal" kids are demanding, right? "Normal" kids want you to play with them EVERY second of EVERY day, right? I'm completely exhausted! Yesterday, Marshall was EXTREMELY demanding and I didn't get anything done at all!!! I tried to do laundry and dishes but it was impossible when he was asking me to play with him all the time. I do play with him, even if it isn't fun. Oh, he's a funny boy but he's very particular about what he likes to play. Right now the big thing is Marbleworks. He wants me to watch as the marbles go down the ramp. Then I have to pick them up and give him the ones he wants so he can put them down again. Not my idea of fun. Then, he wants you to build him a new ramp. He's the same way with trains. You can't actually play WITH him, you're just there for moral support and to fix the track when he decides he doesn't like the way it is. I don't know what will make this boy happy. It seems nothing will. He is only happy if he has a friend at his beckon call 24/7.

Today, he had school and I thought that meant he would be better. The first thing he said to me when he got home was, "Can the baby go to sleep now so we can play Marbleworks?" I had told him that the baby could swallow marbles so he couldn't play with it while the baby was awake. I babysit an 8 mo. old baby girl, a 4 yr old boy, and then I pick up their 8 yr old brother after school. The baby was CRANKY and only wanted to crawl around and get into stuff she wanted!!! She's a darling little girl but I did not enjoy her today. Is it OK to say that? I finally had to put her in the crib and let her cry because I couldn't do anything that would make her happy. I think she's teething.

I'm so worn out!! I don't get time to recharge. I just dread going to sleep. That means tomorrow will come, and with it, more stress! I feel like I'm at a breaking point. I'm not sure how much longer I can handle the stress. Sometimes Marshall seems like just a typical kid but he's not. I've got a 9 yr old boy so I know there is a huge difference between two. Yes, every child is different but not THAT different. I'm going to bed now..

Friday, October 10, 2008

Hello everyone. I got this e-mail today and thought I'd just go ahead and post it for all of you. Let me just say that with all the medical equipment we have had to purchase, Cascade DAFO has been one of the best companies we've worked with. I think this personal little e-mail from them is just further proof that they actually care about their customers.


My name is Loretta and I work at Cascade Dafo. We have a search for the word Dafo on the internet and it turned up your blog. Dafo stands for Dynamic Ankle Foot Orthotic. We specialize in pediatrics and make it our mission to help children and families with the most comfortable, effective and inexpensive braces possible. I'd be happy to answer any questions you or your readers might have. I can post a comment or you or your readers can call me at 1-800-848-7332. We also have a web site:


Loretta Sheldon
Registered Orthotic Assistant
Cascade Dafo

Thursday, October 9, 2008

Feeding Eval

So today Marshall had a feeding eval. This is the first time we've seen a feeding therapist. We've worked with an Occupational Therapist for about 2 yrs now and they have worked a bit on feeding but not much. It's hard to make progress on eating when he's so inconsistent. We talked for nearly 2 hrs. She wanted lots of information. She was surprised at how many things I could remember. I knew all the meds we've tried for sleep and how they effected Marshall. She was stunned that his feeding issues have gone on this long and we have never had any therapy. That's because we had a Pediatrician who thought we were just bad parents and that if we just forced him to eat, he would eat. Or, if we made him not bang his head, he would stop. Another great one was, if we ignore him enough at night, he will sleep through the night. That was a dangerous one because, as we found out after his 1st sleep study, he had severe obstructive sleep apnea and his sats were dropping dangerously low while he was sleeping. THAT is why the child never slept. It was NOT because of bad parenting.

After we talked for a bit, she got some gloves for Marshall and some for her. She had him do everything to her first that she planned to do to him. She told him he was the doctor and so he should look in her mouth. She modeled how you open wide and say "ahh". Then she got a pink sponge on a stick (ya know, the thing they use to wet your mouth when you can't have water or food), and had him rub it on her tongue and cheeks. Then she told him to tell her to bite down. He thought it was really funny that he was the doctor. When it was her turn to look in his mouth, he wasn't scared at all. She also had him look in her mouth with a flashlight, then looked in his mouth. She said she was looking for his tonsils and he said he doesn't have any (he doesn't). He giggled when she said she couldn't see tonsils in there. He thought she was funny.

Then we went to the kitchen. She told him that he needed to pick a drink from the fridge (he picked strawberry milk in a drink box), a soft thing (he picked lemon pudding), and a crunchy (he picked salt and vinegar Pringles). He drank some of the milk, gobbled up the Pringles, even the tiny crumbs, and tried a lick of the pudding.

Next, she got out two spoons and modeled the behavior she wanted to see. She let him put the spoon in her mouth. She showed him how she had to open wide. They tried this several times. He had her open wide, then he puts the spoon in her mouth and brings it out as it scrapes her upper lip. Then it was his turn. He opened up only a little bit, with puckered lips. He acted unsure, like she was going to trick him and put some food in there when he said he was done. She put the dry spoon in his mouth over and over, making sure he would open up big each time.

When he got comfortable with that, she got out a few foods and just dipped the spoon in them, and placed it in his mouth, rubbing it on his tongue even. We have never used this technique before. I had never even thought of it. She got him to taste applesauce with this "dipping" procedure, and a stage 3 baby food (Oatmeal with apples or something like that). He tried Peanut Butter, and Nutella but he was getting really tired of all of it and didn't really want anything to do with either of those.

So, we will get her write up in a few weeks I guess. Until then, she said she thinks we're dealing with 3 things at once here.
  • One, she said it seems like he's having bowel problems. Nathan has always had trouble too. It's genetic, she said. She was very intrigued to find out how much Nathan has been through with his bowel problems. He's been my "medical" child, while Marshall has been my "behavior" child. Totally different boys! Anyway, so her feeling is, he's not emptying his bowels enough. He complains all the time about his bum hurting. He doesn't always get all his poop out because his bum hurts. So, I started him on Miralax again. Both kids need it but I get busy and forget to give it to them! I need a timer and a schedule!! (10am, do an obstacle course with Marshall, 10:30am, give him Miralax, Pediasure, try to get him to eat, did he jump enough? Did he run enough? Did he swing enough?!)
  • Two, she think she might have reflux. She suggested I read, The Reflux Book. She also had me look up "hyperalgesia". I did and it means an extreme sensitivity to pain. Hmm. I'm not sure on that one. I'll keep thinking. I'm also supposed to look up I did go to that website but haven't had a chance to read anything. I know, you're thinking, "Why not? Don't you have tons of free time?" ;) Haa haa. That's funny isn't it? Just kidding. I know you understand how crazy busy my days are.
  • Third, she agrees there is some sensory and behavior component to all of this too. He has trained us in his feeding habits. He has for a long, long time.
So, what next? We wait. We try to get him having regular, painless BMs and read about reflux. She said she doesn't want us to jump into getting invasive tests. Rather, let's see if getting him regular will help. We'll take it one step at a time. Until then, keep giving him Pediasure. He needs the calories, the vitamins, and the nutrients that are in it. So, that's what we did today.

Wednesday, October 8, 2008


I had to delete my old posts and comments toget this new name to work...thanks so much for your comments. Now I can post with the name ima mom. This morning I thought you might enjoy this video someone sent to me entitled, "my miracles are five today" ...

Tuesday, October 7, 2008

Anyone used a Pediatric Dentist?

After multiple tries taking Mason to the dentist, we actually succeeded with some kind of an exam today. My SIL is our hygienist, so she was able to do a "play appointment" then check his teeth as much as he would allow. For anyone that knows me, I'm a worrier over my kids teeth because I feel like it is my fault if they get cavities. Well......she said it looks like Mason has two cavities and we need to go to a pediatric dentist to have them taken care of. This is one of my fears because I am totally afraid of having my kids sedated, but I know there is no way at all that a dentist could actually work in his mouth with him awake and kicking. So......I guess I need some moral support. Have any of you been to a pediatric dentist? If so, what is it like and who did you go to? Do they use IVs to sedate them? How do they keep the kids from pulling it out, cuz Mason will definately pull it out. He can't even handle a sticker on his hand so I know there is no way he'll do an IV. Even if you haven't been to a pediatric dentist, I know some of you have had your kids sedated before. So...what was it like? How did they do it? What can you tell me to prepare myself for this? I am just so afraid of something going wrong with a sedation. I'm all yours---impart your words of wisdom! Thanks!

I have good news too!

M.K. got her hearing aids yesterday!  She chose purple--it is her favorite color.  When we first put them in at the audiologists office, she got very excited and nearly jumped out of her wheelchair. (good thing there's a seat belt in it!)  When the audiologist left the room for a moment, she kept saying over and over "da doo" which interpreted is "Thank you"  I don't know if she said it because he gave her the box to play with, or if she was grateful for the gift of hearing.  I like to think it's the latter.  On our way home we stopped at Target and walked through the toy isles pushing the buttons on every noisy toy we could find.  She seemed to think that was a lot of fun.  Later at home, Daddy played the collection of music boxes he has given her for Christmases and Birthdays.  Big Brother "A" brought her all his noisy star wars toys.  I have been listening to things much differently and thinking of what it might be like for her.  It is a fun and amazing experience to listen to the world around you for the first time.
I have not noticed a HUGE difference in her yet.  Mostly just that she seems to respond more quickly to sound.  But, she also likes to pull her hearing aids out frequently.  I'm glad they included lots of little gadgets with the hearing aids.  One of them is a strap that clips on to the back of her shirt, and attaches to each hearing aid as well.  If they fall out, or she pulls them out, they won't get lost.  Which is very good considering how much each one cost. $$$$  
I'm sure it will take a little time for all of us to get used to them.  I'm looking forward to seeing what effects will come as time goes on.  

This is another adventure in Holland.  The good thing about those is that they help you to slow down and instead of taking time to smell the roses, or tulips, it's giving me time to slow down and listen to the birds chirping, the buzz of a bee, the distant chatter of children playing on the playground.....What a wonderful world. 

Monday, October 6, 2008

Good News

Bree Anne got her first DAFO last Thursday. She took to it so well, and is walking all over the place. Our only problem is going to be teaching her that she has to take it slow or she is gonna be sore!
My former high school caught wind of Bree's condition and has decided to do a fund raiser on her behalf. It is very touching! Now we can get her into some really neat sign language classes, (we have just been using the Singing Time DVDs) and possibly find a preschool that can work with her special needs. Please send me any and all information you have on preschools or classes that could possibly benefit her!

Thursday, October 2, 2008

What do you think?

Happy in Holland has suggested posting our e-mail addresses above our pictures on the sidebar.  You know, for those conversations you don't want posted for the whole world to see.  For she and I it is no big deal because we've set up separate e-mail accounts just for this blog.  But for the rest of you, we'll leave it up to you if you want yours posted or not.  If you do, leave a comment here and I'll make the change.  Or, if you decide to set up a separate e-mail to do that, just e-mail me with the new address and let me know you want it posted.

Also, For "Ima Mom"  How did the rest of you get your name to post as your pseudo name?

Anybody wanting "Thru the Tulips" flyers to post or pass around the places you go, let me know, and I'll e-mail you the file to print either in color or black and white.  I've been taking them with me to all our appointments and leaving them on Bulletin boards.  I figure we've got a pretty good thing going here and the more the merrier!  also, the more people we get here, the more information and experience we have to help each other. 

Thanks Everyone! 

Wednesday, October 1, 2008

Who Are You and What Have You Done With Marshall?

Tonight, Marshall ate 4 1/2 chicken nuggets, a fruit cup, and more than 8 oz of Pediasure with Fiber! WOOHOO! I love it when he eats! Now if he would only be consistent on that, we'd be in a better place with his eating issues. I'm just so excited that he ate that much. He's been starving himself lately. Baby steps.

Oh, and I was gonna post a comment for Ima Mom's post but I really gotta get to bed.

Just Trucking Along!

Hey everyone! I haven't been posting much lately for a very good reason. Nothing much has been going on. Crazy, isn't it. Life is good and seems to be smooth sailing for the moment. Aside from illnesses, the kiddos have been good--nothing really "blog-worthy". Things have been going so great I am bracing myself for an ultimate bad day. I'm sure you'll hear about it when it comes. But as for now.......I'm celebrating the bliss of smooth-sailing.

A Bit of Good News

We got a letter back from Marshall's teacher today. I don't know if I wrote this on here or not, but my husband was upset with her for telling us she thought his behavior was a side effect of his medicines. He wrote a letter to her explaining why we chose the medicine we did and how it has helped him. He told her what he was like before and what he's like now. She wrote back a long reply and basically said she will have an IEP meeting with us in a few weeks (his bday is coming up) and she will keep him in for the rest of the school year. Later in the year, she will be doing some testing and if at that point he doesn't qualify for Special Ed Preschool, she will invite him back next year as a model student. That's good and bad. If he can't ride te bus but goes to the same school next year he'll be mad. I just think we'll finish out this year and see what kind of program we can get him into for next. His teacher from last year wanted him to go to a different school this year but then she forgot he was only 3. This school offers him an opportunity to be in a regular pre-school . He would still have his IEP but he wouldn't have Special Ed. I think that might be great for him. He does fine at Church with the kids in his class. He's just a mess at home! :) We have Parent/Teacher conferences next week so we'll talk to her about it then.

Oh, and we got a free-standing porch swing for free today. Marshall and I had a great time swining for a long time. He would get down and play in the yard for a bit, then come sit and swing some more wtih me. I am so excited that I got this for free!! Now I just need to get a cushion for it. Although, that might have to wait. Marshall and I were playing on the floor together and he crawled on my head (as he loves to do). When he slid down my face, my glasses snapped in two. YIKES! So please forgive any mispells or typos. I can't see the screen very well.