Tuesday, September 30, 2008

Meltdown after Meltdown, After Meltdown...

This was how our day went today. It started bad because last night he slept so poorly!!! Brian got up with him 3 times before he went to bed, then I got up with him 3 or 4 more times after that. This doesn't include the times I thought he wasn't crying enough for me to go check on him. So, we're all tired but when Marshall is tired, he just can't cope with life! Poor guy. He cried over every little thing today and when he wasn't crying, he was angry. I tried to get him to take a nap by swinging him in his Airwalker Swing. It's the ONLY way he will ever take a nap. I thought he was asleep but 10 minutes later, he was calling for me. Strange..

After he had a HUGE fit about not wanting to dress himself, I finally picked him up, put him on my lap, held him very tight, and just rocked him for a bit. That calmed him down. I could feel him relax. I heard him sigh. He was practically ASKING for deep pressure. Yesterday, while waiting for the TRAX train, he actually asked me to do his "tens" on him. He calls deep compressions tens because we do 10 compressions. Cute huh?

I couldn't find anything that made him happy today. He even kicked his brother in the crotch for no reason. It's frustrating when he does that. It's sad to look at his face and see the dark circles under his eyes. He's exhausted but he sleeps so restlessly. I hope tonight goes better for him. So far so good. Cross your fingers for me. Nah, forget the fingers, can you pray for me instead?

Welcome to "Ima Mom"

Make note that the following post is from our newest Tulip blogger: "Ima Mom" be sure to say hello and welcome her to our little corner of Holland! 

Saturday, September 27, 2008

Guilt Free Sweets.....

Have you ever heard of "So Cupcake"?  I heard about it a couple of months ago on the radio.  Having decided that I'd really  like to go there, I promptly forgot about it.  Recently, I was reminded of it again.  Why am I blogging about it you ask?  Well, it's got a great little story behind it.  It's the story of an eight year old girl with Cerebral Palsy.  (click here for the 10 o'clock news version)
Celina got a wish from the make a wish foundation. Her heart's greatest desire was to travel to New York City to see Emeril live.  While there, she enjoyed wonderful cupcakes and was inspired by her  hero Emeril.  Upon returning home to Salt Lake, she and her parents opened a cupcake shop.  From what I've heard, the cupcakes are absolutely delicious!  And of course it is a special needs friendly place.  Thought you'd like to know.  Click here to visit the website.  

Friday, September 26, 2008

The Trouble With School Teachers Is..

They don't see how the child behaves in a "normal" setting.
Marshall's teacher worries me. I say worries, because he has his IEP review next month and I NEED him to be in Pre-school. Here's what happened.

I decided it was about time I fill this teacher in with his quirky behaviors that we get to see at home. I'm not the only one who has seen him out of control, I might add. My downstairs neighbor has had to suffer through him jumping and screaming and crashing into the door because he's so stinking mad. He is SO much better on Risperdal. So, anyway. I told the teacher about his head butting, and the crazy bad day we had the other day which ended in him putting his face in my neighbor's crotch. Embarrassing? Oh yeah. SO VERY embarrassing!

The teacher had the nerve to say maybe his behaviors at home are a result of the medication. Oh, don't even go there lady! She didn't know him before he started on these meds! Just because he is one of her best students at school DOES NOT MEAN he is an angel at home. This makes me SO MAD!! I let my husband have the notebook and he wrote a letter back to her that was 2 1/2 pages long. He told her that I was worried about him still qualifying for Pre-School. He told her that she hasn't seen the wonderful side effects we've seen since he started Risperdal. He has come a long way but he still has some BIG problems. If she doesn't believe us, then we will have to figure out something else for Marshall. I'm glad he's good at school but don't tell me I'm full of it. I'm so sick of people telling me he's normal. He's not. I WISH he was, but he's just not. Oh, he ate cereal and crackers for a snack so we must be making it up that he has problems eating. Oh, he sleeps through the night quite a bit lately so we must be making that up too. GRRR!

THANK YOU!

I just wanted to say THANKS to you all.  I started this blog for selfish reasons; I was lonely and wanted someone to talk to about my special needs child.  5 weeks and a few fistfuls of flyers later, here we are!  I have enjoyed reading all your posts and comments.  They have lifted me, comforted me and strengthened me just knowing that I'm not alone.  Your stories have inspired me and encouraged me to continue in my own 'story' with a lighter step and a brighter heart. Just yesterday, I found myself in a conversation with two 'regular' Moms talking about the ins and outs of potty training.  In my mind, I thought about what I might be able to contribute to the conversation.  I could tell them how a spongebob chair wouldn't work for me because I need one that my little one can't fall off of.  I could tell them that my little one isn't showing the signs of readiness by telling me when she's wet or stinky, because she can't communicate well. I could tell them how terrified I am of potty training her, and ask if they had any good ideas for me...But in my heart, I knew they'd smile and nod politely, and perhaps feel a little awkward.  A funny thing happened:  instead of feeling sad and lonely over it - - I thought to myself:  "I can talk to my TULIP friends!!" and I was happy and comforted.  In this short amount of time, you all have made a difference for me.  Even you lurkers ( I know you're there!).  and I appreciate it.  Even though this was started out of selfishness, I hoped and assumed that by helping myself I would also being helping others. I truly hope and still believe this is the case.  We are here for each other.  Bless you all.   I appreciate you and your friendship. Thank you, thank you, thank you.

Wednesday, September 24, 2008

You Know It's Bad When..

You don't want to go to sleep because you know you'll have to face another day. I felt like that last night but thankfully, Marshall had school today and then we played outside and went for a walk. I just wondered if any of you ever feel that way? I tend to get so stressed out that I "shut off" and just go through the motions of life.

What To Do?

-Deep breath- Does it ever seem to any of you that you just can not catch a break? As I said before I am the mother of four. My oldest, Emma, is four. Jeremy is two, Bree is 18 months and Brooke is almost 6 months. Very young and very busy. I expect difficult days; but my days seem to be getting harder and harder. I am never surprised when kids are kids. They will fall down and hurt themselves; they will have those precious moments of showing love. They will say something in front of someone that they shouldn’t. They will have amazing learning moments that will make me proud and I know they will fight over toys, make messes, cry about who will get mom. They will hit, bite, scratch, kick, throw food and spit.
Today, however, I am asking myself why do my kids have to do all that and times it by a million? Yes, I have a story. I always do.
A few days ago Emma Lee came darting out of her room into the laundry room screaming in the most terrified voice I think I have ever heard. “Mom” Emma screams “Bree has peanut butter and jelly dripping off her head”. Knowing what we all know about my precious little Jeremy I was on the war path, knowing that there was PB&J all over their room. I arrive at the doorway and quickly learn that there is no PB&J, but blood. Everywhere. Bree is crying, Jeremy is crying, Emma Lee is in a panic crying that that she loves Bree Annie and doesn’t want her to die. I got Bree to the bathroom while trying to calm Emma and reassure her that “Bree is going to be okay, I just need you to help Jeremy get his shoes on and then get your shoes on.” Emma acts quickly and is ready to get in the car. We get to the ER and have to wait for 2 hours—while she is bleeding. Yes, I still am mad I ended up using a few choice words with him that I now, of course, regret. He told us that she did not need any stitches just some, for all intents and purposes, Neosporin. I argued with him because I felt it needed at least one because of her “special” circumstance. It makes her a bit clumsy and always bumping into things, I knew that she was going to bust it back open… He refused. I left angry. She had a well baby check-up the next day and her pediatrician said that he agreed with me, but it was too late to put any in… so just watch it. By-the-way it is still bleeding a tiny bit. –sigh-
How this all happened. The three older kids were playing their room while I was busy… I got two stories. The first:
Bree was hitting Jeremy with a dinosaur and Jeremy got mad and tried to take away from her. They were both tugging on it and Bree tripped over Emma’s cash register and hit her head on the bed post. Sounded good to me; but then this other story, that makes a bit more sense to me, immerged. Bree was playing with a dinosaur that she found on the ground. Jeremy picked up the cash register and whacked Bree over the head with it. I am leaning to the second story because of where I found Bree in the room… not by the bed post, and the toy had the most blood on it… a bit of CSI work on part.

Jeremy told me he is angry with Bree. I think it is because he feels like she doesn’t get into trouble. Through his eyes that is probably true. Every child will require different discipline and a different kind of approach to each situation. But I feel like I am just running out of discipline ideas and approaches. I am just feeling very run down, thanks for listening to me vent. If you have any suggestions or ideas on the sibling interaction let me know!

Tuesday, September 23, 2008

BAD Day

This picture was taken last winter but the shirt really says it all. So does his face. He looks like this a lot. He growls and glares at people. Or sometimes he just turns into a kitty. He meows at people.


Marshall has been so difficult lately so I figured I would take him to the library in hopes that keeping him really busy would help. I let him go to the story time for kids ages 3-5. He said he liked it, then he said he didn't like it because they made him sit down. That sounds like it could be very true. I wish I had stayed and watched him on the monitor. Hmm..maybe his school should do that too. That would be GREAT!

After the library, we had to run to the grocery store where he had a HUGE tantrum for more than 15 min. He was screaming, crying, trying to get out of the cart, etc. We finally made it out of there and went home for lunch. I WISH this child took naps! I think a nap would have helped him.

A bit later, I remembered I had to get some large envelopes and get something in the mail today. I dragged him to Staples, then to the Post Office where he had another HUGE meltdown because they didn't have a public bathroom. He kicked the counters, ripped a paper that was taped onto the counter, scowled at me and everyone around him and just cried and cried some more.

I took him home to go potty, then had to run to the music store. He got in trouble for playing with the Xylophone that was sitting out. I didn't care. It was the manager that was upset with him. WELL, if they didn't put it down where little kids could reach it, MAYBE they wouldn't play with it. He laid on the floor and cried and kicked more while I paid for my music. Then when I went next door to the Pharmacy, he ran away.

Tonight, I took him over to the Church parking lot across the street and let him ride his plastic trike. He rode so fast. It probably did him a lot of good. I love to see how fast his little legs go when he's pedaling. :)

His brother helped him cross the street to go home. Our neighbor was outside and holding her 2 yr old daughter. Marshall loves them. I mean, REALLY loves them. He always wants to play with him. He acts like the big brother of their daughter. Hillary (the mom) was standing on the driveway talking to me when out of the blue, Marshall rubbed his face IN HER CROTCH!!!! CAN I SCREAM NOW?! He does that to his brother sometimes too, and he gets in trouble, but this is our NEIGHBOR. Yeah, Marshall thinks she is her best friend but EWW!!

See why this child isn't quite what we'd call normal?!? I've had friends tell me they REALLY think he's got Asperger's Syndrome. This little "stunt" of his tonight fits right in with what my friend's son with Asperger's does. What a lousy day. Thank goodness he goes to school tomorrow.

Oh, I forgot to mention that my husband and I went on a date Saturday night (first one in ages) and the babysitter had to put Marshall to bed. He was really mad when it was bedtime and apparently he hid under his train table. He had a rough time getting into bed and going to sleep. We messed up his routine SO BAD. He was VERY VERY upset on Sunday. It was payback for Saturday I guess. Maybe this is STILL payback. He was either angry or crying about 85% of the day today.

Monday, September 22, 2008

About Us

My name is Erin, I am a stay-at-home mom to four beautiful children. However, the reason I am here posting is because of my 3rd. I am very excited to get to know you and your little ones! I truly look forward to sharing ideas and learning from you as I am sure you have so much to learn from!
Up to delivery I had a very normal pregnancy. I went into labor 3 weeks early; I labored through the night at home but early on a Sunday morning I started to have some serious problems. We rushed to the hospital to find out that her heart rate dropped into the 60’s and mine was well above 100, 45 minutes and an emergency C-section later my little 5.5 pound baby girl was here. I did not hear her cry, and overheard a nurse say that the NICU nurses were working on her…what was I supposed to think?
A few hours later I was holding her and talking with the doctor about how despite her rushed delivery she was fine; she was small because the umbilical cord had been dying for quite sometime and she was not getting the nutrients she needed… she was very hungry! The cord was also wrapped around her neck but did not cause any oxygen problems. We are just glad she did not drop down into the birthing canal because she would have choked. We took Bree home after the three days and all was fine for a few months.
I started noticing she was not rolling, sitting, crawling or walking when she “should” have been. I am not the kind of mom to worry about “late” starts. I believe children will do thing in their own time, but I did feel I needed to talk to her pediatrician about it. He shared my same belief but just to be on the safe side we deiced that x-rays to see the bones would be a good idea. All came back perfect, and I dismissed her delays as just her not being ready. The pediatrician wanted to keep “a close eye on it”.
A month after x-rays we started to see that she was really posturing her toes and hands (meaning curling her toes under and fisting her hand very tight). She was tested for the early intervention program and started working with a few therapists. They suggested a possible stroke at birth could be the cause for her right side weakness. As it would happen we had an appointment the next day for her well-baby. I brought that up with the pediatrician and he thought it would be best to rule it out.
So down to Primary Children’s for easily the worst day of my life; Bree went in for an MRI and they had to sedate her. I had to hold her for the IV and then as soon as she was out they put her in a room where I could see and hear her but not go to her. She is a fighter; she ended up needing and extra dose of medication. They finished that up fairly quickly and then we just waited for her to wake up to take her home. It was very hard for me, and of course all of the “what-ifs” flooded my mind. We waited for a phone call for the next few day, and when we did not hear anything for 3-4 days we thought no news would be good news. So, when I got the call from the doctor saying they found some abnormalities I bawled.
Bree got in to see the neurologist with-in 2 weeks (amazing for a specialist we know) and he explained that she has schizencephaly or schizenocephaly. It is an extremely rare developmental birth defect that occurs somewhere between 18-22 weeks gestation. It is best described as abnormal slits, or clefts, in the cerebral hemispheres of the brain. I have I have scanned a picture I drew (with my limited art ability) to help better explain it…

What does all of this mean? I do not know, I am still a bit overwhelmed by the whole thing. She has been diagnosed for about 3 weeks and I am still learning a lot. I have been told Bree will have developmental delays, delays in speech and language skills, and problems with brain-spinal cord communication. She only has it on one side (unilateral clefts) and that is why she has a weakness on one the right side of the body. We will have to watch for seizures, vision loss and hearing loss, but because those things have not happened in the first year of her life, the chances of them being a problem are much less.
We are hopeful she will be able to be mainstream as far as her schooling goes, but of course we will do whatever is best for her.
She is doing great currently; she has started to take a few steps without her walking and can clearly say 3 words. She is really picking up on sign language, and her social skills. Her mood swings can be abrupt but not too bad… I hope we can keep it that way.
Again, I am looking forward to your thoughts on schooling, sibling interaction, helping her to use her strengths to her advantage … really any advice you might have.
I have an AMAZING family and friend support, but this blog is just different, and I am so relieved to be able have this kind of outlet!

Saturday, September 20, 2008

Utah Parent Center OCTOBER Newsletter

For those of you who do not receive the monthly newsletters from Utah Parent Center, I thought I'd give you a link to the one for October. There are some interesting articles that are worth reading such as:
  • The Importance of Early Intervention
  • A New Wheelchair Baseball Diamond in West Jordan, UT
  • Predictions of Premature Birth (Hunter Trial)
  • Epsom Salt May Cut Cerebral Palsy in Preemies
  • The Presidential Candidates Debate on Autism
  • Parents of Special Needs Kids Divided Over Palin's Plans to Help
http://www.utahparentcenter.org/docs/healthnews/Health-E-Connections200809.pdf

Thursday, September 18, 2008

Halloween on the Spectrum

I get a little bit sad this time of year as all the children are beginning to anticipate Halloween and what costumes they are going to wear. Each year I think, "This will be the year that Mason will be excited about a costume." Well......I don't think this is the year. Don't get me wrong, Mason LOVES Halloween, and he can't wait for it to come, but he doesn't ever want to dress up. It is too different for him, and he is not a fan. He likes watching other kids dressed up, but he doesn't like to do it himself.

So.....yet again....I am looking for simple costume ideas that he can wear that is not too different then something he would normally wear. It can't be big or bulky. Basically the best costume for him is one that he doesn't even know he's wearing. Do you guys have any ideas? At one point he said he wants to be a skeleton this year, but he doesn't want to wear the little jumpsuit. Now whenever I ask him he says, "I just want to be nuffin (nothing)."

Let me know if you have some ideas of something simple I can put together so he won't miss out on what all the other kids are doing. Basically, I guess I am trying to "trick" him into wearing a costume, but I don't want to make him do something he's uncomfortable with. This is just another reminder that he is not a typical 4 1/2 year old. All his "friends" are so excited to dress up as their favorite super hero, but my little dude just wants to be "nuffin".

I appreciate any suggestions. Thanks!

Tuesday, September 16, 2008

Exhausted

Today was such an exhausting day for me. Marshall woke up grumpy and it never got better! He has been head butting more today (just me..aren't I lucky?!) and just angry at the world! He cried a lot too. He wanted a friend to play but nobody could because they were either at school, sick, or taking a nap! When I had finally reached my limit of what I could take from this boy, I decided to drop everything and take him to Carl's Jr. for lunch so he could play. Surely there would be other kids there! He was not at all interested in eating and was very upset when the other children took a break to eat. He got tired of it all finally and decided he wanted to leave. I told him we could go to a park and see if there were any kids there to play with. He wanted to go to the "Scera Park" so, even though it was further away from our house, I took him there. When I pulled in the parking lot, he started screaming at me that this was the wrong park. I calmly told him it was the right one and he did his angry, half grunting, half yelling noise. I about took him home and said forget it but I convinced him that it really was the Scera Park and we would try to play there. He complained it was too hot. He complained that there was noone to play with. He was just SO tired, I could tell!! He decided he wanted to go home so home we went. On the way, I told him we were going to stop at the Scout Shop real quick so I could get something for my 9 yr old son, Nathan's Cub Scout Uniform. It was only about a 5 minute drive (including stop lights) to get to the Scout Shop and when I did, he was asleep. WOOHOO! I thought I was finally going to get some peace. WRONG-O Mary Lou! I decided to drive home and just try to sit him back a little so he could sleep in the car. BAD plan. He woke up. I took him inside and tried laying down in my bed with him. He did NOT go back to sleep. He wiggled and kicked his legs instead. So began the rest of my afternoon with him.

We went to a checkup with the doctor at The Attention Clinic for both boys. Marshall has been given a new medicine to try to calm him. He is SO hyper that the doc is afraid he will hurt himself. I'm exhausted. He's been more hyper lately and been waking up more too. It's a cycle, I know. He always does this. He goes through times where he sleeps great and his behavior is pretty darn good too. Then he cycles to a bad sleeping, grumpy all the time phase, which is where we are now. I'm looking forward to him changing back to the easier phase again.

Monday, September 15, 2008

A Few More Examples of Behavior

Here are a few more things I wanted to show you about Marshall. I've been through the ringer trying to get him diagnosed so I would feel like I wasn't making this up. Some people say I shouldn't push for a diagnosis. Maybe they are right but I'm SO SICK of people telling me there's nothing wrong with my child. I'm grateful that he's good in school but that doesn't make him any easier to deal with at home. He is MUCH better on Risperdal but still difficult. I know I'm taking up a bunch of space with all these videos but they really describe what he's like better than words do. I am including one of him in his Airwalker Swing, which gives a lot of Proprioceptive Input. I am grateful for the good times and I love how he makes us all laugh with his funny things he says. I'm happy he's mine. I'm happy I stayed in Holland. Holland is a beautiful, difficult place to be.
video video video

Saturday, September 13, 2008

My Intro

I'm excited for the opportunity to blog with you and get to swap stories and share encouragement with each other.

In Oct. 2004, my second son (and 2nd child), Marshall was born at 33 weeks gestation. The Emergency C-Section is still a blur to me. I kept wondering when I would hear him cry and when I could hold him. What I didn't know was, he wasn't breathing and was immediately "bagged". I worked as a housekeeper at this hospital several years ago. I cleaned the Labor and Delivery O.R. after surgeries were done. I had cleaned the room between the two O.R. rooms where they work on the babies until the NICU team can get there. I never dreamed that my own child would be there one day. I never thought that they would be calling Code White (labor and delivery emergency) and Code Blue (Respiratory). The NICU wasn't ready for Marshall because the doc messed everything up!

I had been having LOTS of trouble with Placenta Previa and contractions as well as a rapid heart rate. I was on Nifedipine but even that didn't stop my contrations in the end. When I kept contracting through Magnesium Sulfate, I knew we were in trouble. On Friday, I had been over to Parinatology for a vaginal ultrasound to see if the Placenta had moved at all. I noticed that the baby's cord was all bunched up between my cervix and his head. I asked the Parinatologist if this was a problem and he assured me that everything would be fine. On Saturday night, things got progressively worse. I was bleeding so much that there were softball size clots coming out and I was no longer allowed to get up for ANYTHING. Things went from bad to worse when the doctor FINALLY decided to come in and "let me deliver". I really had no choice! This baby was coming whether I liked it or not. I had been in so much pain for so long. The doc kept prescribing pain pills but they weren't helping at all. Finally, he let me get an epidural and then he came in to start the delivery process. He didn't listen to my concerns about the cord and popped my water anyway. The cord came out and then he nonchalantly determined I would need a C-Section. As I was being prepped for a C-Section the nurse decided to check me and noticed that the baby's head was coming down FAST!! I don't remember much after that because I was shaking so bad and was in a total panic. The nurse shoved her hand up as far as she could and held Marshall's head up there while my husband and the other nurse ran the bed down to the O.R. for an Emergency C-Section.

Later I was told why I never heard Marshall cry. He was NOT doing well and the nurses were actually wondering if he was going to be OK. His APGAR was 2. I can't remember what his second Apgar was but it was either 4 or 6. SO, he was rushed to the NICU and immediately put on the ventilator. He steadily improved and after a week in the more severe nursery, he was moved to the transition nursery where he was a "grower and a feeder". He was 4lbs 10 oz at birth. After 3 weeks in the NICU, we finally got to bring our beautiful boy home. We thought it would be so much easier than running to the hospital twice a day. He was on an Apnea Monitor and Caffiene Sulfate when he came home because he had Apnea nad Bradycardia.

We were always exhausted because he never slept well. He hardly stayed asleep very long at all and he was very easily overstimulated. I took him for MANY walks even in the winter because he was always so fussy. I just bundled him up really good and strapped him in the SNUGLI, then put the apnea montior over my shoulder and a blanket over him and away we went. I spent most of my time walking around with him, trying to calm him.

As he grew, he did more strange things. He would bang his head constantly!! If he was in his high chair, he would bang the back of his head repeatedly on the back of his high chair. He also banged it on the hard, metal door, on us, and on any other surface. He even banged it outside on the cement steps! We were very concerned about this but were always told "Dont' let him do it." How do you stop it??! When he learned to crawl, he would crawl on the floor while rubbing his head around on the carpet. He would lay down on the kitchen floor and push his body around in circles while rubbing his head around. If I held him, he would rub his head on my chin. He still bangs his head on us all the time but not on the hard things. He still seems to need a lot of pressure on his head. When he slept in his crib, he would push his head into the corner. Now that he's in a twin bed (bottom bunk of the boys' bunk beds), we still have pillows all around his bed because he still pushes his head into them to go to sleep.

When he learned to crawl, he would crawl over to his changing table that had a cabinet on it and open and close the doors over and over again. I thought it was strange that he never took anything out of the cabinet. He just opened and closed it.

At the same time, he STILL wasn't sleeping through the night and we were EXHAUSTED! We would take him to the Pediatrician and tell him we just couldn't get him to sleep through the night. He told us we weren't ignoring him good enough. What's there to ignore when he's not crying but just playing in his crib all night? Most of the time, Nathan had to sleep on a mat on our floor because Marshall would wake him up. After switching doctors, it was recommended that we get a sleep study. I had been TRYING to get my other doctor to prescribe one but he wouldn't do it. He kept saying it was our fault and that Marshall was just too spoiled. We got the name of a great sleep specialist and I was able to get an appointment within a few days. They had a cancellation and I was SO lucky (blessed) to get that appointment. The doctor immediately knew there was a problem and we started trying medicine. She said there was no point in doing a sleep study if he won't sleep! We got him sleeping enough to do a sleep study. The doctor called with the results in a few days and said his obstructive apnea was so severe that she wanted him to see an ENT as soon as possible for immediate surgery. We were told that doing a tonsillectomy on a 20 month old is dangerous but the risks of him dying of obstructive sleep apnea were even greater. So, we had the surgery done and his sleep has improved but not completely. The doc prescribed a CPAP mask but he totally freaks out and won't wear it.

His behavior is another problem we deal with. We're told he has "sensory issues" but nobody gives us any kind of concrete diagnosis. He has a very limited repertoire of food he will eat. If we try to give him spaghetti noodles, he throws up every time. Eating, sleeping, and anger have been our main concerns with him. He's BRILLIANT and can talk very well but he still can't sleep and his behavior stresses us out!!!

Now Marshall is almost 4 and is such a joy but such a challenge at the same time. We love him to pieces. He takes Risperdal to help with the anger issues. Without it, he was angry 90% of the day. He also pretty much refused to eat EVER. The Risperdal actually makes him feel hungry (even though it doesn't help him eat a bigger selection of foods). He still gets mad and hits a lot but not even CLOSE to as much as it was. We're still struggling every day to deal with the demands placed upon us but we wouldn't have it any other way. We are happy to be in Holland too. It's beautiful here. Different than we planned but beautiful.

Here are two examples of things he still does. The one on the top shows what I was trying to describe about him rubbing his head around on the floor. The one on the bottom shows how he always pushes on his head. He isn't in a crib now but he still tries to stand on his head a lot. I think it has to do with putting more deep pressure on his head.

video video

I Second that!

Welcome to any lurkers or new comers.  We are a brand new blog and are happy that the word is spreading.  Please feel free to visit often, to leave comments, or even to post if you'd like (just send an e-mail to Tiptoemama@gmail.com)   We are happy to have you in any capacity!

I also wanted to thank you for your comments and support on the recent news of my daughter's hearing loss.  I had myself a little cry and now, I feel 100% better.   We have decided that when M.K. gets her hearing aides, we will have a hearing party to celebrate and let all our family and friends bring a sound for her to listen to.  Does anyone know how long it takes to get hearing aides?  I am hoping that she'll be able to get them before our trip to Disneyland next month.  She is SO in love with "Lella" (Cinderella) right now, it will be the trip of her life.  And I want it to be as wonderful as can be.  Speaking of that--Does anyone have any tips on wheelchairs & special needs at Disneyland?    

Friday, September 12, 2008

Welcome!

I just wanted to welcome everyone who is posting and lurking. I'm glad the word is getting out about "Thru the Tulips", and I'm glad there are so many people out there with such inspiring stories that we can connect with. Thanks for making comments and introducing yourselves, and please keep coming back and chatting with us. We're excited to get to know you all!

Thursday, September 11, 2008

The verdict is in.

Thanks everybody for your well wishes.  It turns out, I have really needed them.  Today was the big day of M.K.'s hearing test.  Sedation and all.  I thought I had prepared myself for any outcome.  But as I listened to the audiologist explain to us that M.K. does have moderate hearing loss, my heart sank.  And as I looked at the graph with little cartoon images showing which sounds fall into the various categories, I realized that my little girl has never heard the birds chirping in the morning, or the wind rustling through the leaves in the trees, or rain drops on the window.  I took it all in, and I wanted to break down and cry. 

What is her world like?  

I have not told anyone yet.  I'm not ready to say it out loud. Blogging  is safer that way....strange, since I'm putting all my raw feelings and thoughts on the INTERNET for the whole world to see.  But saying it out loud, somehow makes it so much more real.  And I still want to cry, just take one moment to grieve for the life I thought she had.  Later tonight when I actually get a minute to myself, I will cry.  I'll let it all out.  Once I have,  I'll be able to start adjusting and accepting all the things I told myself before: this really isn't such a big deal.  There's a way to help her.  It will be fun to see her experience a new world for the first time.  It will help her speech.  It may even (stretch) help her balance!  but for now, it's dinner time and homework time, and time to just be strong and do the Mom duties.  

In truth, it really isn't such a big deal.  And as Aprilyn commented -- it's good just to know. It's just a new corner of Holland, and I have to reconcile myself all over again to being here instead of Italy.  Turning the corner to find a windmill instead of a gondola.  But, I can't be strong until I've had a few good moments of weakness to myself. And it sure doesn't hurt to have a place to vent it all. Who knows more about how healthy it is to grieve a little than us moms here in Holland right? 

Thanks for listening.  

Monday, September 8, 2008

Wish Us Luck.

Okay, just a warning.  This might be a really boring post.  with that said: 
M.K. gets most of her therapy (physical, occupational, speech) through preschool.  But all that went away with summer vacation.  She seemed to be gaining momentum with her speech and I didn't want her to lose that.  She still sees a physical therapist at Primary Children's, so we asked about getting speech therapy there just for the summer.  Of course we had to have her evaluated, and get approval from insurance.  Don't you love all the red tape?  Well, part of the evaluation was to have her hearing checked to rule out any speech problems that may be caused by that.  No worries, she has always responded to sounds and seems to hear just fine.  Just another hoop to jump through.  well, yeah- But we had to go back three different times.  She couldn't respond well enough to all the little beeps to be able to tell anything.  They tried a machine that didn't require any feedback from her.  They stick a probe in her ear.  It sends out a sound.  The sound goes through the cochlea where it is amplified and sent to the brain.  The brain then sends it back into the ear where the probe measures the sound that her ears are hearing.  On our third visit, this test said that in both ears there was no response on the 4th level of sound.  That might indicate mild to moderate hearing loss.  The only way to tell for sure would be in the booth test, which she couldn't respond to.  So, this Thursday, September 11, we take her in to Primary Children's for a sedated ABR.  Another hearing test that should be able to tell us for sure what's going on. 
Can I just say that I hate sedated tests? In our previous experience with that, they have me hold her in my arms while they give her a shot of something in her IV.  Within seconds, she goes absolutely limp in my arms.  That's when they take her away from me (!!!) and strap her down to send her through some giant machine.  Even though I know it's just a test, and I know she's okay, every motherly instinct inside me just goes nuts!!!  Maybe it's just me.  Maybe it's because I've experienced one of my children dying before.  But there's just something about it that throws me over the edge.  Has anyone else had this experience?  I hate it. 

If the test shows that there is hearing loss, she may need hearing aides.  At first, I thought "Great.  One more thing that's 'wrong' with her (I hate that word wrong, but you know what I mean) One more thing to have to worry about and deal with."  I called my husband, and he was discouraged too.  His thoughts were:  "One more thing to make her different to other kids, and to keep them away from her."  That didn't help me to feel any better. But I kept thinking about it.  If there is a problem, hearing aids can fix it.  Isn't it a blessing to have a fix?  There are so many other things that can't be fixed.  And if that problem is fixed, isn't there a possibility that it would help her speech too?  Then, I thought some more.  I've heard of people who lose their sense of balance when they take their hearing aids out - balance comes from your inner ear- wouldn't it also be possible then, to imagine that hearing aids might help her walking and movement a little bit too?  
I'm probably getting carried away here. Of course I'd prefer that there is no problem in the first place, but if there is--I'd rather be hopeful than hopeless. 

So in the end, I'm not looking forward to the actual test.  But I'm prepared to be okay with whatever outcome there is.  I think.  Just wish us good luck.
And by the way --we never did get speech therapy over the summer! lol! Don't you just love red tape? 
 


Friday, September 5, 2008

Don't Judge a Book By It's Cover

I know I'm preaching to the choir here, but we all have different disabilities that we are affected by in our homes and families, and maybe this video could prove useful or insightful to some of you.

I stumbled across the video this morning that truly shows how "with it" our disabled kids really are. I think it is relevant to all different disabling conditions, not just autism.

ttp://www.cnn.com/video/#/video/health/2008/02/24/favaro.on.autistic.girl.ctv?iref=videosearch

So.....it gives new meaning to the old saying "Don't judge a book by it's cover."