Thursday, October 30, 2008
Monday, October 27, 2008
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
Saturday, October 25, 2008
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
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
Only the Brokenhearted
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)
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.
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
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.
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.
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.
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
Thursday, October 16, 2008
Wednesday, October 15, 2008
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
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: www.dafo.com
Registered Orthotic Assistant
Thursday, October 9, 2008
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 www.reflux.org. 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.
Wednesday, October 8, 2008
Tuesday, October 7, 2008
Monday, October 6, 2008
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
Wednesday, October 1, 2008
Oh, and I was gonna post a comment for Ima Mom's post but I really gotta get to bed.
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.