Recognize this look?

Saturday, May 7, 2011

A year

Wow! I have not been on here in a year almost! I think when I started this I wanted to reach out and connect with others who knew my struggle and felt my pain, but I became too overwhelmed with life's responsibilities after Danny spent the summer in and out of the hospital.

So, here we are a year later almost! Well, life has afforded us many changes. Danny is in a much better place. He was able to get very specialized IEP services. Moved to a new school where there are 8 kids in the class and 4 teachers, and he is finally reading and writing! He has seen most of the specialist at OHSU Children's Hospital I think. I am told by doctors he has quite an extensive medical record for such a little guy. And he is growing healthy and breathing well these days.

Danny still attends occupational therapy bi-weekly, behavioral therapy bi-weekly, as well as art therapy bi-weekly. He is also doing sound therapy and oral therapy. And in the summer he will begin swim lessons with a children's physical therapist who specializes in working with sensory sensitive children. And he has asked to take piano lessons! He has been able to make (and keep) a friend the entire school year. Because he has such poor social skills this is very hard, but he has connected with another little boy and we are so happy for him.

The daily throwing up has stopped and he only throws up when he is very overstimulated, just a few times a month (instead of 3+ times a day). The meltdowns are less frequent and much less intense. Maybe just a few a week and recovery happens within 10 - 20 minutes (instead of 5 times a day and sometimes the intense ones lasting up to an hour). The acid reflux is much more controlled as well.  We have switched to everything organic and local. We cut out the preservatives and foods with dye in them and have minimized his sugar intake as well as anything with high fructose corn syrup.

In the past 3 months he has washed his hair twice on his own (these are the 1st hair washings he has had since he was a baby). He has also tried artichokes, sweet potatoes, salsa, granola, nuts, and red bell pepper thanks to oral therapy! He can now tolerate the grocery store and will help me put each item from the produce section in the basket (touching everything individually), where he used to cry and scream at the sight of the produce section.

With the help of sound therapy he is longer scared at the sound of sirens and can ride in the car without wearing his noise blocking headphones. He even is participating in music class!

His tactile defensiveness has not diminished, but it is okay because I have better learned how to deal with this. And with all the progress, I relish in his abilities at this point than sadden over the challenges. He has made amazing life altering progress in the past 8 months and I look forward to the opportunities he will have in the future. His challenge areas will still continue to be the hardest work for all of us (behavior, social skills, emotional) but I realize as I read back through last years posts, that a year can be like a lifetime in the world of special needs!

Wednesday, July 21, 2010

Reactive Airway Disease

Oh what a week! And it is only Wednesday. My mind is running a million miles an hour, my world even faster, and yet here I sit. Last week Danny bgan having trouble breathing. At first we thought it was an allergic reaction to medicine, then allergies, but on Sunday when we landed ourselves in the ER, we were told he has Reactive Airway Disease and asthma. From there he was given a steroid to help him breathe and strengthen his lungs and an anti nausea med because he had been throwing up for 3 days straight whenever he went into one of his coughing/wheezing fits that were lasting upwards of an hour every few hours. We were told he would get better immidiatley and sent home. The next morning, same thing, so off we went to the pediatricians office and he got an inhalerand said today it will be better. Monday night I ended up sleeping in his bed with him sleeping sitting up in front of me so every time he began to wheezde cough and chooke I could wake him up and prop him into the trow up bowl now attached to his hip. Tuesday morning, was worse, not better. I called and got a nurse on the phone and let her listen to what was happening. Danny could not even get his breathe enough to speak into the phone and then I demanded that there had to be something else we could do for him. We took him in and they seen him right away vs. the loong waiting room which a child like him has no patience for. Still nothing was coming up on the chest xray and his airways were slear and he had no other symptoms. We were given a nebulizer (a breathing machine that administers medicine into the lungs) and 2 other meds and told if this does not work then we have 48 before they are checking him into the children's hospital  because they are stumped. While we are not better after 24 hours he is breathing and when he goes into one of his choking wheezing things I can get it to stop with the nebulizer. I hope tomorow is a little better. The poor kid has had more than a few meltdowns because he has spent the past 3 days being poked and proded at the hospital and he is so irritated by everything, more than usual. I am told it is the steroid they gave him. And his anxiety level is much higher given that he gets scared and upset from the attacks and from having to use the nebulizer. But, we are working through this, as we do everything else.
The pressure has changed from getting him to function, just to getting him to breathe......

Wednesday, July 14, 2010


Do you like the color blue? Most ppl like the color. Well, Danny loves the color blue. So much so that most his shirts are blue, any time he is in a room with chairs or toys or anything that has the color blue he insists on touching or using the "blue one". Once when he was 3 he colored our entire kichen and dining room floors blue with a single blue crayon, and last year in class he painted the kindergaten classroom floor blue when the teacher was out of the room speaking to another teacher. And this morning he reminded me again how much he loves blue. As I contended with bill collectors on the phone, I turned to see that he had gotten into the paints and painted his hands and arms blue and then his favorite toy blue and the table and his chew tube blue as well much to my surprise and not to his of course! But, this is after all why I only by washable non toxic paint for him. So after I cleaned my blue kitchen and child up and restored them back to their normal colors he was off to check his strawberry plants for fresh red delicious treats that he enjoys so very much. After finding only one new ripe treat he was quickly rerouted to barking at his sister. As I explained to him that only mean dogs bark, growl and bite, and that this mom does not tolerate mean dogs in her house he decided he would rather be a bee and buzzed downstairs with his shovel to dig in the dirt and collect pollen as he calls it by picking all the leaves and flower petals off the neighbors plants outside. You should see what the poor bush looks like! But she is the sweetest litle lady who I explained my sons needs to after I felt bad for the big dirt mounds he left all over her sidewalk a few weeks ago, and she informed me that she could care less and we do not all come in a pregift wrapped box with a big red bow. I love old ppl's analogies sometimes! Appearantley she lost her son when he was 23 to a drunk driver and since he was her only child, she has a soft spot for pretty blue eyed boys, so lucky Danny. Even though I hate going down and refilling his holes once he goes inside in the evenings with, of course, a blue shovel.

Tuesday, July 13, 2010

At the end of the day.....

UUUGH...... it is 10:10 pm and I am just now sitting down. Where do I begin? Well working backwords seems like as good a place as any. Danny has been on his new acid reflux med for 6 days now and after day 2 we noticed what appeared to be a slight side effect of coughing. Well it as now progressed and every night he goes into these coughing bouts that cause him to throw up and and sweat profusely and have trouble breathing and he says make him dizzy and make his head hurt. Tonight is the worst I have seen it. So tomorrow, no med and I am calling the doctor. There has to be something different we can try. The problem is with our insurance litle is covered and we have to take wat we can get because we are paying out of pocket fr therapy, and I barely have enough money to buy groceries and am looking at a shut off notice for the power on my desk right now. God! I remember when I was a child I was in such a hurry to grow up, and now I think why didn't anyone tell me this is what it was going to be like. I surely would have taken full advantage of my childhood had I known! :)
All jokes aside, I love my children, and while life is often complicated with my son's needs taking center stage, I cherish what I have and am hankful for every moment. I even tear up as I write these words. I think there are some things in life that can only be achieved with struggle, and appriciation and understanding for family and love are one of those things.
So, besides tonight's delimna what have I done this week? Well... chased down doctors and resources and insurance coverage questions, all in my spare time. We have finally been referred to Doernbechers Childrens Hospital at OHSU here in Portland. I am thankful because they have a bounty of resources available that we are in need of and I can not be any happier that we are heading in this direction, after being turned away from so many places because of our insurance and not having the money to pay for the care out of pocket.
And, when we get to Doernbechers I expect it to get worse than now with Danny. He will begin to recieve services for area's we have not began to address with him medically, and I know this will be a battle, but I am willing to try what I can. As his therapist said today, she can not imagine seeing him anymore disregulated. He is an extreme case, and we just have to keep trying. I hope once at the Childrens Hospital they will be able to give me a more diffinative answer to what is going on with him as well. Right now I have 3 different diagnosis's with his therapist telling me that there is something else there that is not being addressed, so sometimes I do not even know what to think.
The school diagnosed him as autism spectrum disorder. The pediatrician as unspecified nuerological disorder, and the therapist as sensory processing disorder, plus she says he needs to be evaluated again once at OHSU to find the missing diagnosis. I just want to help him. Some days at moments I feel like I am and some days I feel like we are not. I imagine many parents feel like this with their special needs children.
Today in therapy we addressed his feqar of the grocery store through imaginative story play. We came up with the plan to create an emeergency backpack for him. It will have all of his coping tools in it.  Such as his earphones for noise, sunglasses for lights, sweater for temperature sensativity, chew bar for his need to chew in order to help regulate himself, snack for when e is hungry because he misreads hungry as extremem pain, sensory ball for anxiety. Those kinds of things. And since I had planned on getting a leash backpack for him this will actually be a good time for this. The leash backpack is hopefully my idea to help him when we are out and he tries to run away, and because he often cries and screams that me holding his hand is hurting and painful to him, I imagine if I eliminate that pressure touch of my hand then it will help him as well. And our goal is to not support avoiding public areas of anxiety bcause then he will refuse to leave the house, so gradual acceptance instead by taking him to the grocery store only for a few minutes, like to buy a gallon of milk or one item. In and out. Exposure without over exposure, only what he can handle. And letting him help pay and those kinds of "jobs" as well. I hope this lends to a posative experience for the most part.
The other new thing we will begin next is music therapy. Some special headphones and music that is made with a machine that makes the music waves corelate with the brain waves and can help organize, calm and regulate his behavior better, possably. The other adverse is that it will irritate and overstimulate because he is not ready and go into one of his shut down modes. So... we will see what happenes. I think he may like it though, he seemed to enjoy it in therapy today and he always likes music. His therapist said that the effect is instant one way or the other.
And I managed to get my garage cleaned in the middle of the afternoon as well. I filled Danny's wagon with sand and gave him the hose and he was busy for 2 hours in that mess! But it allowed me to get the garage all cleaned out and carpet layed in there. I am turning it into a therapy room for him. So first the clean out, then I have ordered a trampoline and a multi colored curvy balance beam and a teeter totter and the special huge life size building blocks and a gymnastic pad and I have a tent and I am going to make a crash pad and then get a slide and hammock in there and  step ladder and then he can slide down to the crash pad or use the step ladder to jump off of safely onto the crash pad instead of throwing himself off his bunk bed onto the floor below. We will hang soft lights from the ceiling and I am thinking of putting in a table and chairs for activity crafts time as well and taking up oragomy if he will and then we can hang all of our creations from the ceiling. This will allow him to take advantage of his repeptative knot tying in a healthy way. I also want to get big body pillows in there so we can create a quite space to read and be mellow in those few days that he will allow it. This all is a process that will take tie, especially on my limited budget, but a little at a time is my plan. Eventually it will be a refuge he will really enjoy I think. And his sister too. Being a normal sibling in this situation is hard. I was in her shoes my entire childhood and I often felt neglected by my mother. So I am trying to find ways to incorporate things to allow her to be a part of it all. And what child will not be happy to be a part of a therapy room, even without special needs.
The other thing that he is enjoying is the garden. Helping water and looking for ripe produce is proving good for him. This is a plus! So, while the days are hard. Sometimes filled full of melt downs with a child who can scream with the most intense anger and other times clutching you as you rock him while he poors out this screaming cry of fear and pain. While the days often consist of me having to watch his every move to make sure he is not terrorizing his sister or paiting the bathroom purple or flushing things down the toilet or chewing up the toothpaste tube or throwing up in random places like under the bed or stealing shoe laces to compulsively tie knots durring nap time or hiding in the closet to cut paper into the tiniest pieces my vacuum can not conquer...  while these days are my daily routine which often leave me exhausted by the time I turn on my computer are 10pm and attempt to do my 16 credits worth of college homework before having to be up at 6am. I can say those minutes that are so very normal and precious that I wait to see, those minutes like at night when he is willing to hug me so very tight and offer up the tiniest kiss, and those minutes like today when I broke down in therapy explaining the week to his therapist and could not hold back my tears of frustration and concern, and he reaches up and hold my face in his hands and touches my eyes and asks why I am sad, I wait for the moments of normalcy that I know are locked away inside of my baby, being held hostage by something inside the mind somewhere, and I wait........
At the end of the day, that is what I realize I have done, aside from everyting else that I thought I did, I realize that I waited yet again. And as many a mother of a child like mine will do, I will try and exhaust any and everything that might help him, and I will wait as long as it takes.

Thursday, July 8, 2010

The train keeps chuggin'!

The 4th of July came and past. Always accomanied by such feelings as anxiety, stress, emotional overload.. and that is just me, not even Danny! So, holidays aside, we had a good therapy session today. We also are starting therapy with a child psych as recomended by the occupational therapist. Danny is exhibiting early signs of OCD, and if we can get him into a psychologist then we can hopefully get it under control before it becomes an out of control disease. Appearantley it is nuerological, seperate from the behaviral and socio-emotional that he already contends with. Therapy and/or meds I was told today is how they will help him. I am trying to avoid meds if at all possable. He is already on 1 for acid reflux, and I hope we can keep it that way.
On another more poosative note today was a productive day. I have found an outpatient program for him, an art therapy program and a school outreach program, all of which we can really use the servces of. I have calls into other organizations and am waiting to see what next weeks holds.
I remain commited to the fact that I am his advcate. I do all the leg work and folow it through for services. Without that effort, where would he be? I can not help but think, a mom works hard, but a mom of a special needs childs busts her ass!

Wednesday, June 30, 2010

It is a new day, Wednesday

First post! I am not a new blogger, but new on here. So here goes:

We are just 2 weeks into summer vacation and I find myself loking at the calendar. Anxious much? While I mean it as a joke I have to say, it is complicated juggling it all some days.
Background note here.. I am a full time student, mother of a 3 yr old daughter, Naomi and 5 yr old son, Danny. I had a miscarriage with our third addition almost a month ago. I am 27, and engaged to Sean, my fiance and he works nights while I go to schol durring the day. Danny has Autism Spectrum Disorder and Sensory Processing Disorder and we have found he does not do well at daycare. So, you do what you have to to make it work. We joke that we are single parents durring te week! It s a full time job, and one that often is very stressful. Hence the miscarriage. So, to help myself, I am taking yoga and meditation 3x a week. And am attempting to walk an hour on each of the other 4 days. Because of stress and emotional eating and not taking care of myself I have put on a hundred pounds in the past few years. Nothing to be proud of, but at some point we have to re-organize our ownselves as adults, just like I have to help my son do. So, my days start at 6am and are filled with school, my afternoons and evenings as a single mom, and my nights are long and loaded with homework because I am a Special Education major. I try to get to bed by 1am and suceed most nights!

Now back to summer. Well, Danny goes to occupational therapy once a week, which he highly enjoys. I have found a sensory storytime through the local library once a month for children with Sensory Integration Disorders. Fridays are nature hikes at the local parks because it seems to help calm him. I try and take the kids to the park at least 5x a week. We have the pool set up, a sandbox, trampoline, swing, ball pit, tunnel and I am working on a crash pad. I am slowly turning my garage into his therapy type playroom. This  offers him many activities to help regulate his nervous system better. We have been given a computer program by his speech pathologist to use over the summer because Danny is unable to write because of his poor motor skills. But keeping him interested and focused proves to be a major challenge. The doctor has started him on a acid reflux medicine this past week. His therapist recommended it because everytime he has a meltdown he throws up. I am hoping to see an improvement in this area. Especially because it causes him so much discomfort. And of course the constant never ending fghting and sibling rivalry between him and his sister. It  has gotten worse oer the years  because I think she is beginning to see the difference in them and in how his behavior is dealt with. I am trying to find ways to re-instill in her the "why" that she often seeks. And the therapist has also suggested that Danny needs to begin counceling but not until he is further along in therapy because his disorder went undiagnosed for 5 years that it has caused some emotional distress. My goal is to give Danny as much as possable with as many options as possable.

So on days like today where he has been very too rough in his play and pushing and hitting, where he has spent most the day mocking and repeating what is said, where he has had a few screaming melt downs, where he and his sister have spent most the day fighting, where none of his food was the right color or temperature, where he has cried and screamed because of doorbells and construction trucks, and sirens, and the gardeners leaf blower, and where he has left the reminents of Hurriane Katrina relived through the house because he is having a very disorganized day, on days like this, yes, I admit I look at the calendar guestimating how long until bedtime, and until school starts again.

Right now as I type I hope for tomorrow to be a better day. One that he willing follows the hourly schedule and sticker chart. Because posative incentive often gives me an extra arm in this house I will offer up a trip to the park before lunch in return for a happy morning. I keep my fingers crossed for something semi close! We have a play date with a new neighbor down the street. He is a few years older tan Danny but the kids played with him this past weekend and as I talked with his mom, found that she works at the preschol I am enrolling my daughter in and that her son also has Sensory Integration Disorder and Emotional Distress Disorder. You would be amazed at how many "disorders" there are, but each is unique to the child and helps those around them to better understand their disability and ability's better. It is nice to talk with another mom that has experience in this area I do have to admit. Often we are let feeling alienated from the world around us.

For all that comes with the terratory I know this is my place. Not easy, but it takes a certain kind of person to walk in my shoes. I love my son and on the good days where he allows me to hug him I hug extra long. Everynight when he is asleep I sneak in and kiss him on the forhead. Because he is so sensative to touch he often rejects affection that most children embrace, so you have to patiently wait and hold onto it when the chance comes. Just like as a parent, we need to hold onto each and every day. They grow up fast and I can not think how soon it will before he starts hitting more and more milestones.

I close today with this quote: "You don't really understand human nature unless you know why a child on a merry-go-round will wave at his parents every time around - and why his parents will always wave back." ~William D. Tammeus