Thursday, February 17, 2011

INFORMATIONAL:AUTISM and OUR WADE

This post doesn't include any pictures but rather a re-cap of our cute little man Wade. I am OFTEN asked about Wade by friends and strangers of either "whats wrong with him", "why doesn't he talk", "has he been to doctors", "what was it that made you notice that something could be wrong with him", and the list goes on, which I don't mind at all that people ask me, it just gives me an opportunity to share my experience or knowledge about Autism. But I was thinking this morning about all of these questions and what could I do to try to help others understand and I decided that a blog post could be a start. This is going to be an informational/hopefully question-answering post to all of those who wonder about our Wade with his Autism. First I think people need to understand what Autism is.

There is a HUGE spectrum for Autism Disorders and different types such as Autistic Disorder, Asperger syndrome and Pervasive Developmental Disorder and all of these can be at varying degrees.
Autism Spectrum Disorders are a group of brain based disorders that affect a childs behavior, social and communication skills. there are differences in each of these 3 ares. Some of those differences may be

Social:
doesn't snuggle when picked up, arches back
doesn't keep eye contact or makes very little eye contact
doesn't respond to parents smile or facial expressions
doesn't look at objects or events to get parents to look at them
doesn't bring objects to show to parents just to share his interest
doesn't often have appropriate facial expressions
unable to perceive what others might be thinking or feeling by looking at their facial expressions
doesn't show concern for others
unable to make friends

Communication:
doesn't say single words by 15 months or 2 word phrases by 24 months
repeats exactly what others say without understanding its meaning
doesn't respond to name being called, but does respond to other sounds
often doesn't seem to want to communicate
doesn't start or can't continue a conversation
refers to self as "you" and others as "I"
doesn't use toys or other objects to represent people or real life in pretend play
may have a good rote memory for numbers, songs etc...
loses language milestones usually between 15 and 24 months in a few children (regression)

Behavioral:
Rocks, spins, sways, twirls fingers, flaps hands (stereotypic behavior)
likes routines, order and rituals
obsessed with a few activities, doing them repeatedly during the day
plays with parts of toys instead of the whole toy (example spinning the wheels on a truck)
may have splinter skills, such as the ability to read at an early age but often without understanding what it means
doesn't cry if in pain or seem to have ANY FEAR
may be very sensitive at all to smells, sounds, lights, texture and touch
unusual use of vision or gaze-looks at objects from unusual angles
may have unusual or intense by narrow interests.

Now some of these things can be normal for a typical child, but together all of them make up concerns for Autism. Wade never seemed typical from the time he was born, he has never slept through the night since the time he came out of my womb and I know a lot of parents don't get sleep period with having babies, but Wade literally would not sleep at all and would cry most hours of the night despite everything we were trying to calm him. Even as a newborn he would cry nonstop and just got worse and worse as he got older. Wade was either a very smiley or cried nonstop, he had numerous eating problems, unexplained high fevers as a newbie, allergies, he would smile, but was never a verbal/interactive baby with us or others etc...we still never got too concerned, we just thought maybe it was his personality and he was just one of those hard baby's. When Wade turned 1, the sleeping got worse, he regressed with being vocal (which he would barely make sounds as it was but now it all stopped), would just scream at random times, didn't want us to physically hold him and would arch his back, he would have staring spells, he would not respond to his name at all no matter how loud we yelled it (we actually thought he was maybe deaf) he would repeatedly shake his head back and forth vigorously and flap his arms constantly like a bird, jumped nonstop vigorously, has NO sense of danger whatsoever, he couldn't understand us/words, could not repeat or mimic things, he would not look at us in the face, did not want us kissing or hugging him, did not want to be around other people, large groups or actually play with anyone else and would not sit down to play with toys appropriately, he has huge sensory issues oral and deep pressure. It was like he was in his own little world. We have a few children that we know at church and school that have different forms of Autism and I think some people get confused because when they see Wade for short periods of time they think he does not seem as bad as those few other kids, or he doesn't have any physical impairment so he must be fine. Some of those other kids have other medical problems along with the Autism or have a different type of Autism which is why I think they may seem worse and again there is a huge spectrum. Wade has been seen regularly by his pediatrician, neurologist, developmental pediatrician, Intervention Specialist Evaluation team, and he has been tested for everything under the sun, literally $10,000.00 dollars worth of blood work (thank goodness we had insurance), EEG, Sedated MRI, ADOS test, Speech and hearing, etc...we have been going through all of this for the last year and they have not found anything medically wrong with him but under the DIAGNOSTIC AND STATISTICAL MANUAL OF MENTAL DISORDERS, Wade does or has done all of those things on that list but 2, so therefore medical professionals have diagnosed him with Autistic Disorder. At first I didn't want to accept it, I didn't want there to be anything wrong with my child, he is just a normal 2 year old going through some phase, and wanted a second opinion, which we got and it was again confirmed. Deep down Josh and I knew he was different from the other kids and had to just accept the fact and start therapy early. Children and Adults who have an Autistic Disorder are often times labeled as high functioning, which is why it is so very important to realize it early and start interventions early so it may help improve the quality of their life sooner. We can already tell with getting him outside help, being diligent and persistently working with him at home in combination with medicine we can already see areas of improvement. I did not know anything about Autism, this is a whole new ball game for me and has lead me to doing tons of research so I can educate myself on this disorder and know how to better help my child. He is on a new medicine now for sleep that at first helped him then his body got used to the med's so they just upped the dose this last week so it seems to be working at the moment and even helps calm him some in the mornings, if this wears off then they will have to try a new one but we are hoping we are good for a while. He has also started his therapies with his own Intervention Specialist at the Family Child Learning Center and will go there once a week. They will teach him self help skills, speech, ot, and physical therapy, and they will also help him with the behavioral and social problems, we are super excited about this program! It has been very hard especially with having 4 other kids and there are days where I often want to break down and just crawl into a hole and cry because I am sleep deprived, or he has thrown tantrums all day, screamed for long periods of time (this is worse later on in the day) or I just want him to be able to give mommy a kiss and say just one word to me, but this is the path the lord as put in our lives and I am grateful everyday that he sent Wade to our family. I really needed him in our life, he has helped our family grow closer, made us more understanding, aware, more patient and kind, and has made Josh and I better parents. Autism is still not understood by many people and I think that some often think its just another made up thing, but it is real, the good thing is there is so much help and support out there in the community. I hope this post can answer any questions that you may have or just help to better inform you of the disorder. There is really so much more information I want to share but this is long enough already, but if any of you have questions please feel free to contact me any time! Here are a few websites that are very helpful:
http://www.autismspeaks.org/
www.nationwidechildrens.org/autism
http://www.templegrandin.com/ (this is an excellent new release movie based on a true story and is currently at redbox to rent if anyone is interested)

We will continue to do the best we can to help Wade through out his life and we just want him to know how much we love him and we will never give up!

Sunday, February 13, 2011

BE MY VALENTINE!


We decided to celebrate Valentines day on Sunday instead of Monday, mainly because I wanted Delaney to wear her dress that she got for Church :) My sweet mother and father in law sent a very cute Valentines package that had some candy in it, cards for everyone with a little bit of money and a little treat. We went to the store and picked something out for each kid with their money, we found this dress for 12 dollars from Gabriel Brothers and I just fell in love with it, there was only 1 dress like this and it happened to be her size (18 months) so I couldn't resist that is what she got for her present. Doesn't she look so cute ??!!




Justin got a shirt and this little handheld game that came with a bonus watch. Justin LOVES games and he loves to wear things on his wrist ever since Natilie got him hooked on silly bands..and this game/watch set was on clearence for $1 :)



Wade got a handsome church shirt with tie and anyone who knows Wade, he LOVES to throw things and balls, this mini football changes color with body heat and was on clearence too for a buck :)






Delaney loved chewing on her Valentine teddy bear..


Daniel and Natilie LOVE clothes from Aeropostle but with our financial situation and having 5 kids, we are never able to buy clothes from there (everything has to come from Gabriel Brothers) but oneday when I was walking at the mall for exercise I saw they were having and 80% off sale, so needless to say I got these shirts for 3.99 each and was super excited and so were they when they opened them :)



Josh and I made their Valentines cards and set everything out on Sat. night so they would wake up to them in the morning.. Not too bad for homemade cards, and josh even helped :)


On Friday Josh got the boys ready for bed for me, the next morning when Justin woke up I went to change his clothes and diapers and this is what I found. Justins pull up was duct taped onto him, I died laughing, evidently the side ripped and instead of wasting it, daddy improvised. See duct tape can fix anything!


I think this picture is so funny, Justin loves to randomly dress up is everyones clothes, shoes or hats...Here he is wearing my hat and Natilies pink jacket and Josh's snow boots (although its hard to see the boots) he loves to be silly...
I am so thankful to celebrate Valentines day and to spend it with the ones we love. I LOVE my wonderful husband, 5 amazing cute kiddo's, and all of my fabulous friends and family!! I am a very blessed and lucky woman!!

Wednesday, February 9, 2011

Let the good times roll....

So I had originally posted a way funny (and what I thought was cute) picture of Delaney, I was changing her diaper and clothes and ran out of diapers in the living room so I ran back to our bedroom to get some and came back and Delaney had rolled across the living room floor naked to get to a toy that she had wanted, it was the funniest thing. It didn't even cross my mind that our blog isn't private and that there are some sicko's out in the real world that can view our blog until Josh saw it and brought it to my attention, so that thought disturbed me a ton which lead me to deleting the picture until I edit it. Just in case some of you were wondering...But here is the picture above of what Delaney likes to do in her pastime (besides roll everywhere) is chewing on shoes :)


Natilie was playing photographer


then captured herself



Our good friends the Tora's came to watch the kids while I had a really long appointment to go to and came back and found this sweet picture on the camera. I think Ursala and Patrick really need a baby girl next time, don't you??!! :)




Wednesday, February 2, 2011

2 MORE "ICE DAYS" OFF FROM SCHOOL

I know I have mentioned before I need to be better about taking pictures especially for our Utah family who doesn't get to see us much, so I have decided I am going to carry the camera around with me and snap tons of pictures :)
Justin and Natilie were watching Toy Story 3 and pretending they were buzz lightyear
After chores, this is where you can find Daniel, in his room with his butt glued to his futon playing ps3

This last Fri. Natilie had gotten really really sick with bad kidney infection (3 different types of bacteria was found) and the bacteria was resistant to a handful of antibiotics so she got the good stuff. She tends to get these once in a while because she has a kidney reflux, my poor girl looked like she was going to die on Fri. but as you can see in this picture she is feeling much better this week :)


Natilie loves her brother



Everytime I take a picture of Wade he just wants to get right up in the lens because he is fascinated by the little flash light, such a funny kid...

Wade doesn't really play with toys, but for some reason, the only thing he has started carrying around lately and "kind of" plays with is this woody doll, we are glad that he has made some kind of attachment to this.

My attempt to try the Pebbles hair-do on Delaney, hey its starting to grow a little :)





Love this outfit and love this girl! I am beginning to wonder if she will be walking before crawling, she loves to try and walk around the house when we are holding her hands and she rolls EVERYWHERE in such little time, she is fast...she has done an army crawl thing too a few times, but I think its too much work for her to do....

Justin adores his baby sister, he is SUCH a good big brother, he loves to hold her

kiss her....


smooching her more....

I love the look on Justins face

Delaney after the butter puff was put in her mouth and she LOVES them


Justin loves to feed her butter puffs





Justin, Wade and now Miss Delaney's absolute favorite snack is butter puffs, my dad always goes to amish country and buys the bulk bag for only a few bucks and they pound them away...


My cute chubby girl, love her little rolls and her chubby cheeks, I can't believe how fast she is growing, she will be overtaking wade before long...



I LOVE this photo of her, she is just perfect in every way!