Thursday, April 30, 2009

Some good news, some hard news

This past couple weeks have been full of ups and downs at our house.

My oldest son Trevor, who has autism, has been steadily going downhill in his behavior for awhile. After much thought, stressful days and exasperation, I made an appt with his pediatrician yesterday. We are now going to begin some meds to help with the anger and aggression we are seeing. Up until this past school year we have always been able to handle his behavior problems with different rewards, structure, ect. I am not opposed to medication, I just thought we might not ever have to go down this road. I am new at having to deal with this, so it just seems a little overwhelming.

And also this past week we had our meeting with the school district to determine his placement for 2nd grade. He is currently in a Language Enhanced special education class and doing OK. Not wonderful, not horrible, just OK. But I knew this was only a 1st grade program so this next school year would be full of changes. He is going to be placed in a regular 2nd grade class with 'support'. He will be pulled out for some help throughout the day, but basically will be in a classroom with 25 students and one teacher. Currently he is in a class with 10 students and two teachers. So you can see how concerned we are. We knew this was going to be a fight this year, but we are very hesitant no matter what they say. They say we can re-evaluate him this fall and we can make changes. But I really don't want it to take half the school year to get him to where he needs to be. So if anyone had any experience, or maybe even knows of some specific programs, please let me know. We are in Weber County.

But on the flip side, we had Josh re-evaluated for his speech/language today. We are going to the neurologist next month for an appt to get some specific diagnoses on paper. I asked each of his therapist to write a little letter on where he is and what they see or don't see. So since his speech therapist is pretty sure he has Apraxia of Speech, she wanted an update on where he is. He has made some progress!!! He is now at a solid 12m for everything! That is huge!! He is going to be 2 on June 1st, so he is still basically a year behind, but it was worse. He has made good improvements on everything except speech. His language is coming along and we are so happy! So we did get a good report on something this week!!

So anyway, if you have any suggestions on my oldest son, please let me know!

Sunday, April 26, 2009

Reading Again

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

Read more information about the book by clicking the picture!

Saturday, April 25, 2009


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

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

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

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

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

Wednesday, April 22, 2009

Earth Day!

I had such a good day.  This past month has been so hard.  Just when I was about to break down, well I suppose I had already broken down, more like just as I didn't think I could take anymore, things start falling into place.  The best thing about today is that JT got reevaluated and for the first time in his little life he is closing the gap.  

Six months ago we were told he was understanding language at a 10-12 month old level.  We have worked like crazy and he has been doing so well I knew I would be happy with his numbers today but even I was blown away.  He is now understanding at a 24 month level.  12 months in 6 months!  I have been waiting for this day for so long!  That is still 8 months behind but we have never been that close to "normal".  It's only a matter of time that his expressive language comes along.

The day already seemed like such a blessing.  The sun was shining, the grass is green and we were enjoying it all when JT did something altogether unexpected.  He sidestepped his way up to a tree, almost like he didn't want it to know he was coming, and put his little arm around it in a half hug.  Then ever so slowly and carefully he kissed the tree!  Then he kissed it again, and again.  Then the next tree and the next tree.  It was adorable and so appropriate it being Earth Day and all.  So tree after tree he hugged and kissed and then he even bent down to kiss our water spigot.  At this point I figured I better stop the kissing frenzy because who knows what he'll kiss next.  It was so sweet and I am so happy I thought I would just share with you all.  Life may not be easy, perfect or anything like I expected but it is still wonderful and beautiful and worth it.

Qualifying Diagnoses

Back in Feb, my life (my daughter's) was turned upside down. At the beginning of the school year, she was evaluated for a behavior interventionist aide at school and was found to be eligible. In February, a new boy was enrolled in class and his aide was struggling with his behaviors.

Without any warning, Kanani's aide was reassigned to the new boy and she was left without assistance. I asked the special ed director about it and was told that she was 'better' and didn't need an aide anymore. After much fishing for information, questioning staff at the school, I sought the advice of a professional. We wrote a letter to the school and I hand delivered it to the principal and the special educaton director. It was a nice letter. As a result, Kanani's aide was reassigned and the school assured us that our aide would continue to work with her through the end of the year.

Since then, our IBI aide's supervisor asked us to have Kanani evaluated by a neuropsych to see if she could qualify for IBI over the summer. My first thought was- this agency is trying to fill their summer programs and I can see the dollar signs in their eyes. Ironic since just a number of weeks before, they tried to tell me that Kanani didn't need behavior intervention.

So last week, I reluctantly accompanied Kanani to her appointment where she was given an IQ test. The doctor asked why I was having it done and I told him that we were seeing if she would qualify for behavior intervention over the summer. He made a comment to me about how he thought that her diagnosis of DiGeorge syndrome automatically qualified her. I told him I didn't know...

Ok so NOW, THIS WEEK, we are scrambling a bit because Kanani's aide has given notice. It seems that the school AND the contract agency (who provides the staff to work with the special needs kids) don't want to change her services and they want Kanani to continue with behavior intervention.

This morning, I called one of the supervisors to discuss what the plan was. After a long conversation, I had to ask him and repeat back to him what he had just finished telling me. hhmmmm. As it turns out, Kanani's diagnosis of DiGeorge syndrome is a "qualifying diagnosis" which basically means she is automatically eligible for behavior intervention. The neuropsych knows his stuff.

Apparently, everyone knew this (except me) and over the past year, used it to THEIR advantage in trying to accommodate other more demanding families, staffing limitations, and unhappy employees. I find it a litte bit irritating to think that 1) I wouldn't know this information; 2) they didn't tell me before; and 3) the notion of "qualifying diagnosis" is used only when advantageous. Whatever.

I still don't know what is going to happen... if she is going to be in a behavior intervention program over the summer. More to come soon...

Monday, April 20, 2009

Autism x 6

I took my daughter to the park while dinner was in the oven (gotta love casserols!) and I sat down in the shade to watch morgan play with the other kids. There was a woman sitting at the tables behind me as I was on the grass playing with Jonah. I was watching all the children play and recognized one of the kids. I have taught preschool and directed a school for years so it's not uncommon for me to run into past families. But that wasn't how I knew her. No, I just couldn't place her. It bothered me then I heard her brothers name and it all clicked. It was a family here in Murray who werefilming a documentary on Discovery Health. Their story is amazing and fortunetly I had seen the program at least 3 times. There story is called: Autism x 6
I turned around and asked if her family is on TV and she laughed and said yes. It was nice talking with her and shareing frustrations. She was just so nice. She gave me her web site and I checked it out, the fist page has funny little sayings on it.

Saturday, April 18, 2009


My son and I went to the local elementary school today for kindergarten registration. He started attending the Children's Center therapeutic pre-school two years ago. After graduating from there he continued on to a local school on an IEP. He has experience with three different teachers and classrooms as well as riding the bus. I was interested to see how he would do.

When we first got there he had a piece of theraband to chew on and he sat through the little slide show. I took his hand and we went on a tour of the classrooms. The first is his sister's current teacher and room so I pointed to the pictures of her on the walls. I introduced him to the teacher and she was animated/ excited to meet him. He buried his head in my chest and wouldn't look at her. He didn't respond to any of her questions. So we moved on and I squeezed his hand a couple time to see if he would squeeze back. Sometimes I learn more from my children non-verbally.

He gave me two tight squeezes and then after a sea of faces we knew from our neighborhood he said "home." He just kept repeating it a couple of time"home..." We left out the side door away from the crowd. I hope he will not fall through the cracks next year in a bigger class. A part of me was a little sad. He has an IEP in place so here's to hoping he opens up once he feels more comfortable.

We handed in our registration forms and I had the immunizations in hand. this is the first time we are marking "exempt" on the form. He has been on a regular immunization schedule up to this point but now that we know he is on the autism spectrum I am not continuing on. This is a new adventure for us. I expect we will get some nasty letters in the mail from the health department.

Does anyone out there have experience with this? I hope he will have good friends and will work past the anxiety.

Wednesday, April 15, 2009

Walking Wings

Our PT found this awesome new adaptation device for Reagan.  It's called "Walking Wings" and you can buy them at Babies R Us for $25.  Reagan is about 50% on her walker, she's interested some of the time but the other time she isn't.  Our PT wants us to get Reagan up on her feet as much as possible and this new little diddy can do that without forcing the walker on her.  Plus it's saving my back like crazy.  I know these aren't great shots, they were taken during PT but you get the idea of what it can do.
  (we have to constantly try and explain to Reagan she can't push the walker like that! haha i'm sure it's so much easier for her to lean on it and push it that way...)
I was so nervous about today.
Yesterday I got a phone call from Jonah's insurance company telling me that they were going to foot the plane ticket for our trip to denver Children's Hosp. I was so happy and relieved! The case manager also said that he and the social worker wanted to come by for a home visit. I was so nervous. Did they think I was an unfit parent? Could I be doing something wrong? Is my house child proofed enough? Is it clean enough... I mean really I have two toddlers! All these things were running through my head. Being the slacker that I can be, Instead of cleaning the house I picked up a mountain of medical paperwork to file & ploped in front of the T.V. to watch the Biggest Looser, which is convienently a 2 hour program. This morning Jonah had PT then durring that brief break of him napping and Morgan having a snack I ran around like a mad women throwing shoes in drawers, picking up crayons, sprayed some lavender scent and fluffed couch pillows. A big thank you to the husband for vaccuming the night before then swiffering the hard wood floor! So Today at 1:30 the 2 case workers arrived. I had called in moral support from a good friend who was their with me as well. Afterall who knows what was going to happen. What happened? Well, They told me that pretty much everything will be paid by them I just needed to save all recipts and turn them in when we get back. This is a huge blessing for us. I am so geatful! The case worker was wonderful too. I had a chance to ask a billion questions and although she did not have all the answers she wrote the questions down and said she would get back to me. I cannot tell you how much that meant to me. She also made a comment on how sometimes medical personel can be unfair to some of us parents, just because we seem to handle things well, they don't put so much into our kids. This is something that I have been dealing with a lot these days.
I feel like things are finally looking up.
One more thought, If you do not have a case maneger then get one! I could have saved myself a lot of grief and dissapointment, also I could have gained knowledge in a shorter amount of time. Thank you for reading my ramblings. Enjoy the rest of your day!

A Find

Hello everyone! I know there were a ton of questions about DAFO's not to long ago and I just wanted to post that I found some socks at Walmart that are working great for us. They fit perfect and are tall enough to just fold a little over the top of the DAFO. They are a dollar a pair. Also, I finally got around to checking into the socks I heard about at Old Navy. They are the same style just fifty cents more.

They are called tri-fold and come in every color! I was excited about it anyway. I was wondering what we were going to do when the weather got a little warmer. We had been using cotton tights-way too hot for summer. So, YAY for small things that just make my day!

I hope you all had a fabulous Easter!

Sunday, April 12, 2009

A fun topic! (school)

I'm wondering how many of us have school-aged children? How many are in high school or junior high school? Any?? How about elementary? And what grade is your child in? Are there any preschoolers about?

I'll go first... my daughter is 7 and she is in the first grade...! She is in a mainstream class full-time with a full-time 1:1 aide.

Thursday, April 9, 2009


Ty had a follow up with the ENT yesterday. I am very glad we don't see him often cause it was HELL. The kid can't handle people touching his head so going into an ENT appointment when I know the hearing test is gonna happen is just ... well FUN!!

My hubby had to go this time as well so it was 2 birds with one stone. His hearing test didn't go so well. He wouldn't let them put those things in his ears. So of course he wouldn't let them talk to him with out the crying, gagging, coughing and wretching.

I took him out of the booth and his dad went in for his hearing test. Ty loved watching his dad do the test and sat there saying "Yeah" And pointing and smiling and knocking on the sound proof door.

I kept telling him we were gonna play tickle in his ear when Daddy was done. We went back in and tried again.


The ENT suggested that we put him under general to do an ABR and see if there is hearing loss in any of his ears. If there is fluid ( which he has NEVER had a ear infection ... knock on wood) then they will tube him and then see what we can see as far as hearing.

I was actually ok with it. I hate the idea of him going under anesthia again.

Today was the bad day. It was hard to think I "might" have to add something else to the mix. It isn't like it wouldn't have been NEW.

It sucks that there can't be just ONE thing that is easy...

On the up side. I got these to photos today...

It will be ok.... It will be ok......

Tuesday, April 7, 2009

opportunities for social skills development

When Kanani turned 3 years old and was transitioning from our state's early intervention program, my husband and I struggled with whether or not we needed to continue on with the developmental preschool program our local district offered. Initially, we decided that she was too young to be away from home for so long. We wanted her to have the opportunity to have the same experience as typical kids do- which often involves staying at home with mom or daycare.

However, after one trip to the local pool, we quickly changed paths. A little girl was trying to interact and play with Kanani and was pulling her by the arm to come with the girl. Kanani had no idea what was happening or why this little girl was pulling her. She was terrified, but did not cry, scream, or pull away. She offered a little resistance, looked in my direction, and called for her younger brother to save her. At this point, it was apparent that she needed to learn some social skills.

When she entered our developmental preschool program, she was not eligible for services because the testing for SLP, OT, and PT put her at age appropriate performance. Since she had a diagnosis, though, they accepted her based on her "at-risk" status.

Over the course of the three years she spent in the preschool, I developed a strong dislike for her teacher. Miss Pam treated me as if I were a dumb parent who did not know any better. I insisted that Kanani knew her ABC's, rote counting, numbers, and shapes. But because Kanani did not share this information at school, they did not think she could do it. We tried to advocate her moving into a less restrictive class where there were more typically developing kids, but Miss Pam insisted that she was too small and too sickly to be in a class with healthy kids.

At her kindergarten transition meeting, all of the intial testing was repeated to check her progress since her last school evaluation. Her scores from her performance ranked her functioning at the level of a three-year-old level. I was devastated to think that for three years, no progress had been made.

As I have gotten to know my child better over her kindergarten and first grade years, I have come to the realization that on some levels, I failed her. Failed to advocate strongly for her when it came to her IEPs. I did not realize how much power we, as parents, do have (not planning to repeat this mistake again). I also learned how she thinks as an individual. While she doesn't always understand what other kids are doing and why, she is motivated to be doing what other kids are doing. So for the three years in developmental preschool, she constantly copied her peer who could not speak and only said "dee!" when asked a question.

So with this in mind, I have been struggling a lot this year with her developing peer relationships. Her younger brother often gets invited to play at friends' houses. She rarely is invited and she has noticed.

I've relinquished some and bought tickets to special events so that we could do mommy-daughter outings with other girls who have special needs. I've gotten brave a few times and let her visit her cousins house where there is a foster child the same age as Kanani. Heck, about a month ago, out of necessity I set up a play date with my home teacher's daughter (which turned out to be a not so great experience).

So recently, I was listening to an expert talk about child development and peer/social interactions. Now, I find myself at a crossroads. The gist of the lesson I learned was this:

Typically developing kids learn social skills beginning at birth. As toddlers (and older kids), they need to have play interactions where they 'fight' and learn to share with other kids. THIS is where they learn how to negotiate and interact with other kids. THIS is where friendships are born. THIS is where the basics are learned.

I also learned that video and computer gaming are detrimental to social skills development... (naturally, I am in trouble for this one as well) but that is a different story for a different day...

So following the presentation of this lesson, I had some pretty specific questions in my mind. First, what is the optimal placement for our children with special needs? Is it better for them to be in a resource room with kids with similar abilities- or is it better for them to be with typically developing kids where they would notice and struggle with the disparity between academic performances??

The answer I got was interesting; the only children who benefit from being with other children with similar abilities/disabilities are children of the Deaf culture. All others, including the blind and visually impaired, are benefited more by being with typical kids. Hmmm. Ok, I seriously did not know that.

My second question was, is Kanani better off having play-dates and social opportunities with kids who also have special needs? In my mind, I wanted to be told that yes, this was a good thing for her! I wanted to be told that she needed to have friends who didn't exclude her because of her differences... who would accept her as she is... who would have same experiences with being excluded... I thought that this commonality would help them to be more sensitive and kind to one another.

Unfortunately, I did not get the validation I so desparately wanted. Instead, I was told that the best case situation for social skills development occurred through adult-mediated activities with typically developing kids. I guess its a crucial thing for social interactions to be mediated because without the adult supervision, then my (our) child is at-risk for being isolated, excluded, etc. even more and then typical developing kids are at-risk for behaving in a less-acceptable manner and bullying, exclusion games, etc. are more likely to occur without that adult presence. After requesting clarification two or three times, I came away feeling overwhelmed and defeated.

Defeated because honestly, I can't think of very many typical kids whom I feel have the capacity to be nice to Kanani in a way that I think she deserves. Defeated because I don't know that I could NICELY stick up for my little girl without resorting to mean words myself.

Overwhelmed because this means that I can't just send her along with typically developing kids (not that I would to begin with). Instead, I feel as though I have yet one more therapy appointment to add to my week; one more obligation. Overwhelmed because this sounds like a whole lotta work to me.

Now, with her birthday approaching this summer, I'm at a loss of what to do. I feel like I would be ruining her birthday if I invited typical kids who exclude her or are unkind... I would rather make for a small gathering with a few girls who are a little delayed as well.

Tell me; what would you do?

Sunday, April 5, 2009

a few random thoughts

A few weeks ago, I was listening to an Early Childhood Special Education (ECSE) guru lecture on a few different topics. I love listening to Dr. A. because he knows things. Lots of things pertaining to kids in general and to kids with special needs. Not only do I appreciate his vast knowledge base, but I feel as though we are very near kindred spirits because he has raised a child with special needs as well.

Anyway, as I said, a few weeks ago Dr. A. was lecturing on this thing called Anti-Bias Curriculum. At first, I thought 'what a drag' it was going to be. But then he and another gal opened their mouths and started to talk about Anti-Bias Curriculum (ABC) and I found myself hooked. Rivited. Amazed. and Motivated.

At first mention, Anti-bias curriculum sounds very clinical to me. Something that perhaps schools implement to teach kids how to not be biased toward other kids in regards to their race, religion, ethnicity, social status, etc. Ha. Not so. SOOO not so. Boy was I off base.

What I learned was that this anti-bias curriculum is NOT a curriculum program, but is an attitude that we can take on for ourselves. People who adopt the anti-bias curriculum (attitude) basically strive to minimize all types of biases in everyday activities no matter what the subject matter is. ABC addresses biases for all the typical basics- race, religion, etc.- and it also includes things such as gender biases (ex. "pink is for girls." or "only boys play with trucks") family dynamic differences, and individual differences such as kids with special needs. (This part was the main meat of the discussion).

The amazing thing I learned about ABC is that kids as young as two years old (TWO YEARS OLD!) begin to recognize individual differences between themselves and other kids, and can recognize a difference in a child with special needs. The manner in which they treat the child with the 'difference' comes from our (adults) reaction and treatment of the same individual.

Anyway, my "few random thoughts" pertaining to anti-bias curriculum:

1. We were driving to see Grandpa today and I noticed that my 2 1/2 year old boy would not share candy with Kanani. He was more than happy to give it to his older brother, but he REFUSED to share with her. Oh my goodness, he is already recognizing the differences between himself and Kanani. How the heck do I handle this? He's flippin' TWO!!!

2. While I do my best to enforce a no-tolerance policy for excluding and being mean to Kanani at our house, I find myself unable to coax my 6 year old son to go further and stick up for her when she is singled out.

3. I hate the fact that my own family- my folks and siblings- are unwilling to join my cause and help her to feel accepted. I hate the fact that my in-laws are reluctant to celebrate the differences as well and champion the underdog when its needed. I feel sad that the people whom I trust with my daughter's feelings are people who work with her- her school aide, respiratory therapist, SLP, OT, etc.

4. In relation to this whole ABC thing, I learned of some research that reported that kids who have a visible difference (facial features such as Down syndrome or wheel-chair bound) are more accepted and kids who look NORMAL but have special needs (translate: act differently) are tolerated less. This disparity in treatment is true for both children and adults with whom our kids interact with. How unfair is this?

5. I was doing even more research and came across an article that talked about READING DEVELOPMENT in kids with special needs. The researcher basically said that in general, reading skills are learned differently in kids with special needs because their parent-child interactions are different from typical kids... the article basically said that I, as a parent, am so preoccupied with getting medical issues taken care of, therapy appointments, etc. that I fail to do normal activities such as playing, reading, and whatnot with my special needs kiddo. I guess I don't play very many games with her. And I know that she has less toys than the other kids in my house... I feel like a jerk. So much for trying to be ABC in my own house.

Thank goodness tomorrow is a new day.


A fun easter project for the family

Saturday, April 4, 2009

Doing some research...

I have been reading some books I ordered on Amazon about Sensory Integration Disorder the last few nights. I have come across a condition that I feel is pretty darn accurate about Josh. It is called Dyspraxia. Have any of you heard of it? Or have little ones diagnosed with it? From what I can gather it isn't a condition widely known. The more I read about it, the more I am floored that ALL of Josh's problems/symptoms are explained with Dypraxia. So I just wondered if anyone knows about it.

Friday, April 3, 2009


I am just so thrilled to be a part of this wonderful blog. I love coming here and reading about your experiences and frustrations the triumphs and victories. Why? Because it is here, that I am reminded that I am not alone in my own journey through the streets of Holland. And because just based on what I've read on this blog, I know that you will get me, too. :)

So that you may know me, too, I guess I had better introduce myself. I am hayngrl- as in hawaiian girl. I am a mother of four children; one girl (7 1/2) and three boys (6, 2 1/2, 15 mos). My daughter is Kanani and she will be turning eight this year. She has DiGeorge Syndrome, or 22q11.2 Deletion Syndrome. I am learning to love this disorder. Or so I tell myself frequently!

My pregnancy with Kanani was unremarkable except that she showed some kidney reflux in utero and I was H-U-G-E. People often commented on my large size and asked if I was sure there was just one baby. At thirty-five weeks, I went in for an ultrasound to measure her and see how big she was. The tech indicated that she was six pounds and some-odd ounces. Two days later, I went into labor and she was born at four pounds 14 ounces. I had excess amniotic fluid (polyhydramnios) of more than a gallon. A few hours after her birth, her O2 began to drop, so the nurses took her into the NICU for observation and to suction her out.

What they discovered was that her esophagus was not connected to her stomach and there was a hole in her trachea. As she swallowed her saliva, there was no where for it to go, so it would leak into her lungs. At 24 hours old, she had her first surgery.

Since her birth, Kanani has had countless surgeries and hospitalizations. She was diagnosed with DiGeorge syndrome following her open heart surgery at nine months old. She has an oral aversion, was G-tube fed for most of her life, and is immunodeficient. A few of the hallmark features of her syndrome is that she is language delayed, has learning disabilities, and is at high risk for mental illness.

I am learning how to advocate for children with special needs in the schools. I am learning how to be assertive on her behalf, and am learning how to deal with LIFE in general on a day-to-day basis. And I'm excited to share this journey with all of you!


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

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

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

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

Thursday, April 2, 2009

Glimpse ~ Life with Clay

Just to allow you a glimpse into our life with Clay - we are still being molded in God's Hands.

hung over Clay's bed the entire time he was in NICU; it has been kept in the book of JOB with locks of his hair for 23 years & counting

visiting his grandparents in the nursing home

happy to be on the road again and going in our van

hanging out with his PT Sharon, in his ceiling lift sling, on the move to the living room to his love seat where he does his computer surfing and augmentative speaking

typical time ~ place ~ expression stretched out in his water bed

Clay's first 'real wheelchair'.........he normally had/has arms strapped down as they flail due to the CP; but I think I was given a God moment and a huge blessing that the camera caught him waving to me and in my heart I received it as "Hi, MOM!"

Wednesday, April 1, 2009

A Prayer ~ A Hope ~ An Almighty God

I suppose moms that this is my coping method tonight to let go of some worries and frustrations of nearly 24 years of constant is rewarding, it is blessing, it is delightful..........much if not most of the time; however, mama's like making things better and our hearts combined could be the heartbeat of a hurting world growing stronger because of the immense love shared and given. These are some of the times I dig deeper to calm myself, listen to whispers, search for resolutions. I'm very tired. Clay deserves so much more as a young adult male who is highly cognitive yet trapped in a physical body that denies him freedom of coordinated movement and a verbal, understandable ability to converse. He deserves the healing that will bring any movement he desires to undertake on his own ability and freedoms. He deserves dignity and respect. He deserves a life outside of parents' constant care and provisions. He deserves a miracle and I still believe in miracles. I still believe in answered prayers. I greatly believe in an all knowing, all loving, unconditional Papa God......I pray for my sisters and your children and your circumstances and needs......I love you all and you bring me joy and support that other's find difficult to comprehend. For these things I thank God.......may you find quiet moments, peaceful moments, and renewed spirits this Easter. May your precious children be given careful provisions by the Master..................

A Prayer ~ A Hope ~ The Answers Are Almighty God

Dear Lord, Father of all creation I praise you for the special encouraging moments you bring in our everyday lives. I praise you for stories of good when there is much dismay. I praise you for mercy shown by families, friends, and other Christians through your direction and plan.
Lord, what a beautiful time this is. The trees are growing new leaves of green. The flowering shrubs and trees are bursting in color. The bulbs of beautiful, varied flowers are vibrant and strong. The pansies and violas as other spring varieties are spectacular just now and will soon be replaced with other varieties of annual flowers and greenery.
The skies are blue and the clouds are billowing white. The birds and other animals are courting as you direct them to do so under your supervision. Deer stand so beautiful in my yard against the woods edge and in open fields in numerous groupings. Cotton tail bunnies are hopping around nibbling sweet clover growing. A number of kittens and puppies are making their appearances. The songbirds are singing beautiful melodies and choosing mates, courting, and building nests. The spectacular cardinal feeds his female tenderly. The mourning doves show up in pairs, so gently cooing, so greatly easing away my tension as I capture the love songs. The chickadees, Carolina Wrens and other small birds are busy as can be and are richly blessing my family with a magnified experience just through the picture glass patio door…….courting, building their nest, settling in, as I was realizing and photographing this morning five delicate brown speckled eggs in the tunneled nest chosen to be placed in my hanging ivy basket just outside the glass……hopefully mama and papa wren will allow me to photo ~ document the process of nest sitting, hatchlings, feedings and the gentle coaxing of the babies to try their wings. I observed this exact event a couple of years ago, from the same window and a hanging plant………..oh the joys of watching your immense feathered creation so intently. Hearing their songs are often the best medicine in rough days ~ weeks. So I thank you for gracing my yard with the songs and the beauty, the courting and the comic relief they often have about them also.
As this new season of Spring gets underway I ask that you bless our families, our friends, our neighbors and our country. As we approach Holy Week and Easter morning, may we be greatly reminded of sacrifice and saving grace. May we more fully comprehend each year that your will includes for us, the story of Jesus and the cross. The opportunity to be new again, washed by his blood, sweat and tears for our salvation and forgiveness of sins. May we be reminded that you love us so much you willingly let your own son pay our debts…….all our debts completely, because of your infinite love and desire for us, your children of your design, of your creative hands that we may have deep connection and relationship with you.
Father, I would ask that you hear our prayers and petitions and intercessions. So many are hurting and afraid. So many are alone and bitter. So many are facing terrible challenges ~ health ~ financial crisis. Please help our nation return to you and prioritize our relationship with you. Please help us turn from evil, idolizing, cruel, unethical, irresponsible, arrogant excesses. Help open eyes to your love, your will, your presence to give us hope and a future. You are an all knowing God. You are an all loving God. You formed us from your love first so that we could know what love truly is. You watch over us and keep us in your care. You have a plan and a will of action ~ service for our lives. Help us to clearly discern our purposes and have the courage to live fully the challenges and the joys and the in betweens.
Father you know well before I ever put words to them the varying concerns in my individual heart……concerns for my sons, for my faithful husband, for my aging parents, for family members, for friends and for communities. The magnitude and intensities grow and we all need words shared with you over concerns for our country, for our planet, for our universe. Over every bit of your creation.
Please Father help us understand things that are difficult to understand. Help us with things we simply don’t want to or are afraid to understand.
Help us do more good, show more mercy, grace and love and forgiveness to all around us; close and distant proximity. Help us learn greater compassion, greater empathy, greater tolerance of those who are different somehow than we want them ~ expect them to be. Help us see challenged individuals in more positive light of possibility and contribution. Help us provide new avenues of independence, nurture and care in appropriate ways. Help parents continue to find the necessary strength to keep running the race you destined us to endure to the finish line, whatever that line may be and whenever that line becomes visible.
Father I ask that you renew this creation in all manner that it bows down to you and hears your voice, be it nature or human form. Help us learn to love more completely, more Christ like with servant hearts. More unconditionally and willingly. More positively and humbly and effectively that love replaces hate, commonalities replace discriminations, poor become wealthy, sick become healed, Christians unite and pray together.
These things and all the other things left unexpressed by inadequate words living in my heart, I bring to you on my knees and my face to the Heavens that you will answer lovingly and according to your plan and will as we ask these things in Jesus Christ. We thank you for sending him to save us so that we will have all things new in proper order.
Annette Monts Falls ~ April 1, 2009

April is Autism Awareness Month

In honor of Autism Awareness Month and Autism Awareness Day (April 2nd), I thought I'd share my story of how autism has affected my life and my family.

So Frustrated

Things are not going well right now. I haven't posted because I hardly have time. Marshall has been grouchy and mean lately and his cycle just continues to go down. I have an appt with his Pediatrician on Friday. Hopefully they scheduled enough time that we can actually TALK and figure out what to do! My boy has serious anger issues. He has a meltdown at the drop of a hat. He's been hitting, kicking, and licking more than ever. I don't know what to do for him. He already takes a pretty high dose of Risperidone.

I went to observe Marshall at school today. No wonder they never see any negative behaviors!!! They don't challenge him AT ALL!!! Snack was fruit snacks and goldfish crackers with water to drink. When he didn't want to finish his fruit snacks, the teacher said, "Oh, it's OK. At least he tried them." Come on!!! He had a handful of goldfish crackers and like 4 or MAYBE 5 pieces of fruit snacks. You can't tell me that he is full!

Since it's cold and snowing today, they stayed inside for recess. First Marshall and I went to do file folder games at a table. The first game he did was count the dots on the snowmen and match the written number with the number of dots. That was not very hard for him. Next I picked the game where he is supposed to match the upper case letter with the lower case one. He didn't want to do this because it's too hard. So, he decided to wait for time to run out. If he has to do something that is hard, he finds a way to get out of it. Next it was time to trace and cut out a kite. When I held his hand to steady it, he could trace perfectly fine. When it was time to cut, he couldn't do it with one hand. Finally he had to use two hands but still couldn't cut it. Finally, I did part of it for him and helped him do the rest. Again, not really challenging to him, is it? Why would he get angry at school? He gets to play with toys, play with friends, and not do anything that is hard for him. Great, way to push my child to try new things.

His OT tested his fine motor skills and I'm going to get that result tomorrow but the school district's OT said if it's not the same test they use, he will have to be tested again. OH lovely. That will mean no services still most likely. How pathetic is it that if your child is in the 9th percentile, he/she doesn't qualify for services. Really?! The 9th?! That means 91% of kids who are about the same age as him, are better at fine motor skills and other areas than he is. Doesn't that inspire?! (Insert sarcasm here) This is sad. I worry he will have a rough time with Kindergarten but we'll just worry about that road when we get there.

I'm so tired. He isn't sleeping well and over the last couple weeks, has wet the bed at LEAST once a week. It's been getting more and more frequent. He's also flapping his hands a lot more. He jumps around shaking his hands all the time. His teacher said now that I mentioned it to her, she has noticed that he does that a lot. I'm so tired of this. I'm tired of his teacher never noticing any "problems" with him. I mean, I'm glad he's good in school but they have to challenge him! Sometimes I feel like I'm going crazy when I tell people he has problems. I'm not making this stuff up!!! It is NOT normal for a 4 yr old to scream, cry, get angry, and hit just because we told him he has to get himself dressed. We're tired of getting him dressed. He's four years old and we know he can do it. I'm burned out. Good thing we get to visit Grandma this weekend. I need a break. Not that it will be much of a break but usually he will play with her for a little while.

Right now he's at the kitchen table refusing to eat his cheese tortilla. He says it's too much but it's not. He just doesn't want to eat it. I'm giving myself a break from him for a minute.

Amazing Witness

An amazing witness, I still have much to read at this site, but this is an exceptional story, dedicated mother and miracle baby girl.