Monday, March 25, 2013

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Reach for a Difference:



West Texas Rehab & ECI

West Texas Rehab, King Davids Kids, & Reach for a Difference

Reach for a Difference- May 2013 Newsletter

Hi! My name is Alyssa, I am the proud mother of two wonderful little boys! Destin, 1 ½ years old and Malakai, 2 ½ years old. I am originally from Pennsylvania, but the military brought my family to Texas. I am a proud military wife, stay at home mom, dabbler in the arts, and a special needs advocate. Why? Because I was blessed with some very special children.
            Destin is currently receiving services from ECI (Early Childhood Intervention) for a possible sensory processing disorder and some attachment issues. Kai receives a lot more. We were told when he was 1 ½ that he was moderately autistic and had a sensory processing disorder.
            Kai has always been a little behind, even at birth. He hit 9lbs, was a week over due, and wasn’t budging. This being my first child, I worried to no end every time something went wrong. He was jaundice and had to be retested. He failed his first hearing test and had to be retested. However, everything turned out just fine, …for about a year.
            Around the time of Kai’s 1 year check up, we started noticing that he wasn’t hitting any of the milestones his doctor was expecting of him. This paired with the fact that he’d yet to be on the growth chart since birth, we became alarmed. We took him everywhere we could think of, from pediatricians, genetics, gastroenterologists, labs, nutritionists and an autism specialist. When we received the news of his sensory processing disorder and autism, we got him enrolled at West Texas Rehab for physical therapy, occupational therapy, and speech therapy.
            Since then, he has had an mri of his corpus callosum with no problems found. He has seen a knee specialist, where we learned he has joint laxity. He has received ankle braces, called SMO’s, for major rolling of the ankles. He also got enrolled with ECI and started riding horses, and started feeding therapy, for hyposensitivity of the mouth. In the very near future he will be receiving a final diagnosis from the Child Studies Center, as well as a neuropsychology exam. He will also be seeing genetics for more testing. So far we have, sensory processing disorder/ tactile defensive, moderately autistic/ nonverbal, possible auditory processing disorder, joint laxity/ ankle braces, and hyposensitivity of the mouth. We will continue to work very hard at West Texas Rehab and ECI and at equine therapy, and then he will start school in August with the PPCD program!
            I worked as an assistant teacher for 3 years when I lived in Pa. I had worked with multiple special needs children and I often questioned how the parents did it, how they managed day to day, and how they got through it all. I never could have imagined, I’d be one of those parents. Seeing my children go through such hard battles was so hard. As we had no family around, we got through it on our own. I did well for a while, but the long days and long nights, constant running from appointment to appointment, hours and hours of research and calls to doctors looking for answers and advice, it truly takes a toll on a person. For this reason, a few people who knew each other, or knew of each other, including myself, decided to create our own support group. This is how The Spectrum Connection came to be. But I wanted more. I needed to get as much information as I could. I started attending every meeting and seminar I knew of in the Abilene area. That is how I found Reach for a Difference.
            When I walked into my first Reach meeting, I was nervous. I sat, looking around at all the faces, not knowing a single one, and felt just as alone as always. That’s when, what I later learned was the president of this organization, came up and introduced himself. He was so nice and welcoming, I felt right at home. It was such a meaningful meeting, packed with so much information, and love! I knew I had found my calling. I couldn’t be happier and there aren’t enough words to show my true gratitude to the members of this Reach team, but I am thankful. Blessed and oh so thankful. I look forward to taking on a position here at Reach for a Difference, where I know, I too, can make a difference.

Our intro on The Spectrum Connection

My name is Alyssa, I am the proud mother of 2 wonderful boys. Malakai, 2 years, has been diagnosed with sensory processing disorder, is nonverbal, and is thought to be moderately autistic. (More testing to come.) Destin, my 1 year old, is also thought to have a sensory processing disorder.

Malakai has always been behind, even at birth. My due date came and went and this little guy wasn't budging. I decided to go for a 5 mile walk and went into labor the next morning, but again he decided it wasn't happening so I had to be induced. After 15 hours of labor, I gave birth to a 9lb bundle of joy. I thought that this was the end of our struggles, but I was mistaken. He appeared slightly jaundice and had to be retested, then he failed his first hearing test and had to be retested. Everything came together and was fine. 

I worked as an assistant teacher for 3 years and often had special needs children with me, and I often questioned how the parents did it, how they got through. I never imagined I'd be one of those parents. A year passed before we started to notice Kai wasn't hitting a lot of the milestones his doctor thought he should be. We started making multiple trips to pediatricians, labs, genetics, gastroenterologists, and an autism specialist getting everything we could think of checked. He went on to fail a handful more hearing tests until we had him put under for testing. Turns out his hearing is just fine! 

Kai currently receives occupational therapy twice a week, physical therapy once a week, and speech therapy twice a week, all at West Texas Rehab. He also receives eating help in occupational therapy. West Texas Rehab also gives Kai orthodics. He is in ankle braces, also known as SMO's. We have looked into braces that go below the knee due to some knee issues, but think we are going to stick with ankle braces until we can be seen by a pediatric leg specialist.
Malakai was also just accepted into ECI(Early Childhood Intervention) .  According to their scores, Kai is close to 50% behind in most categories and his communication is at a 7 month level. We are very happy that we will now be receiving close to 10 therapy sessions a week. The more the merrier=] One of Kai's favorite therapies is equine therapy. He has such a love for horses and has learned how to be gentle with animals (and brother) since working with them. 

We are currently working on finishing intake for ECI so we can start services. We are trying to get a neuropsych exam and a final autism check to obtain that final diagnosis. Once we have a final diagnosis we can look into receiving aba therapy. We have appointments in the near future for fittings for new braces, a leg specialist for knee problems, genetics checkup and possible testing for sickle cell, and his pediatrician is working on referrals to have his eyes checked and an MRI for issues regarding his corpus callosum. 

A look into Kai's life: 
*Kai would much rather play alone, than with others. This is hard when Destin really looks up to him and wants to play with him, but kai doesn't quite understand or feel comfortable. 
*Kai likes to run. We have tried so hard to always hold hands or teach him to wait, but he has still run into a street and ran off during a fair. 
*He constantly flaps and tip toes. We couldn't get him flat foot if we put bricks on his shoulders. We keep a close eye on this and his braces have helped a ton! His flapping is something he has done since a year old. He hasn't really used his fingers correctly and it was easier to use his whole hand for everything. He doesn't play with toys in their correct manner but instead will flick cars away from him, put anything in his mouth and flap it around, and spin wheels.  He has such an obsession with spinning wheels that he will find them anywhere! He will even flip our high chair over on a daily basis just to get access to its wheels.
*Along with not being able to play with toys in their true manner, he constantly throws his toys. This is probably out of frustration, but it's still a habit that causes mommies head to hurt a lot. Literally. 
*Toys aren't the only thing he throws. Food is a big one. It is really hard for us to get Kai to eat. 90% of it hits the floor every time. There are days all he will eat is fruit, some days all he wants is to run around and snack on something and there are days he won't eat a darn thing. For this reason he is on a special form of pediasure. It is a special form because he is also lactose intolerant. 
*Along with throwing toys (usually at people), he also has had a lot of trouble with hitting. He would hit anything and everyone. We have already been at a doctors office and he squirmed out of my lap and ran to hit a stranger before I could get to him. Why? Who knows. Maybe the guy looked at him wrong=] 
*Wires. Another huge obsession of Kai's. He absolutely loves wires and outlets. This is a huge concern for us due to the danger involved. We have protectors in every outlet possible and keep furniture in front of outlets where things are plugged in. This makes for an ugly living room when everything is pushed to the walls but, hey, you've got to do what you've got to do. 
*Safety. Like most parents, we take safety seriously. Along with covers on every outlet, furniture near every wire, we keep all doors closed at all times, some with door knob protectors, and have so many baby gates, our adult friends need help getting in and out of some of our rooms. 
*Diaper changes. Kai can not handle this process and we have yet to figure out why. We thought it was part of his sensory processing and that he couldnt handle laying backwards. We are starting to think this is not the issue, because he will throw himself backwards when sitting on a ball=] We now think it has something to do with the temperature or texture of the wipes and his fear of this. He also has the habit of getting yeast infections which are horrible diaper rashes. He gets so raw he bleeds and requires medications, and we fear that this has contributed to his fear of diaper changes. 
*Doctors. They scare every child right? Kai is so terrified of them, it usually requires a lot of force (and heart break and tears from mommy) for things as little as a well check up. He screams if a light is shone in his eyes and has to be pinned down by two people to have his ears checked. We believe he is sensitive to lights and this causes some of the problem. He also has an over growth of ear wax that has to be scraped out on occasion, and we believe this has cause a fear of doctors and them touching him. 
*Falling. He has gotten much better about this, but he still has an occasional melt down if he falls. He could just trip and land safely but the fear of falling is something this poor little boy just hates. My husband believes he gets mad at himself or just plain frustrated at falling, but we know that he has a lot of falling in his future, being a boy and all;) 
*The W sit. This is when a person sits on their knees and their legs slide outwards to their sides instead of staying underneath them. This is Kai's favorite position to sit (and jump, ouch) which may be causing, or making his ligament issues in his knees worse. Telling a child, who doesn't understand, to not do something he loves, is not a fun task as a parent. 
*Chewing. Kai has to have something in his mouth about 80% of the day. Whether he is flapping it or chewing it, it has to be there. We bounce between random toys, binkys, chew tubes, and teeshirts. This child will go through 4 t-shirts a day because they get so soaked from chewing. The excess saliva (that he doesn't know to wipe away) causes rashes on his face also. So we constantly wipe, change, and clean him up throughout the day to try and avoid this. 
*He doesn't sleep. He is the child that we put in his crib, but he'd rather play, jump, kick, yell, etc. Our youngest will be able to sleep through anything! 
* We have done so much at home to try and help Kai through and to get him extra at home therapy. I've made sensory bins, let them explore different things, done brush therapy, bought a zvibe and every attachment possible, bought an indoor trampoline and swing set and and outdoor jungle gym and sand/water table. We will continue to do absolutely everything we can to keep up with Kai and his crazy, ever changing schedule and tastes, because he continues to try so hard and he brings so much joy to us.

  He is such a little champ and will continue to be awesome through all of this. I am so blessed to be a part of such a great support group. These people have truly been a blessing and I couldn't be more proud to have them in my life. I am going to school, majoring in multiple things, but the one that hits home for me is my Bachelor of Arts in Psychology. I really hope I have the opportunity to use this to help as many children and parents as possible! I also hope to use my education in general to write a book. I have a drive to turn this story into a book and some of the people in the group seems pretty on board. I hope you enjoy this ride, as much as we do! =]

Feel free to follow Kai's day to day personal achievements on Facebook:

Our intro on Facebook

Malakai is a happy, go- lucky, intuitive, and independent 2 year old with a long road ahead of him.

Also find us on:
At about 1 year of age, we started noticing that Malakai wasn't doing things that the doctors thought he should be able to do. That's when it all started. We were out to Dallas for a gastroenterologist, we were in Dallas for a genetics doctor, we were in Lubbock for an Autism screening, we got him enrolled in speech therapy, occupational therapy, and physical therapy. All of his genetics and gastro came back normal. His autism screening showed he was moderately autistic. His therapy showed he was at a 9 month old level developmentally when he was 15 months old. It also showed he had a sensory processing disorder. After a lot of brushing, therapy, sensory projects, etc. we seem to have his sensory issues handled to an extent. After he received ankle braces because his legs were knocking and ankles were rolling in, he started walking!!! He had just turned 2 and this was a huge step for us! Because of this his physical therapy dropped down to 1 day a week while the others stayed at 2 days a week.

As of November 6, 2012-

He does PT 1x a week, OT 2x a week, ST 2x a week. I am working to go see a different autism specialist in Denton, get another follow up with the gastro, get him ABA therapy, get him equine therapy, get him an autism specialist, get him enrolled in ECI and early head start. We also just learned that he will start school in August!! He still can not talk, although we have an appointment tuesday to get his ears flushed and inquire about tubes!=] He still has a lot of issues eating, and doesn't communicate much at all. He doesn't point or play with much correctly. He has just learned how to dance (wiggle), and stack blocks!! He just let me brush his teeth and cut his nails last week, which is HUGE!!! Our goals are to improve fine motor skills, eating skills, and lessen the amount of hitting others.

As of March 25, 2012-

He visits West Texas Rehab for: PT 1x a week, OT 2x a week, ST 2x a week. He also gets OT, ST, and SST from ECI. He still rides horses when we get the chance. We are getting new braces, and seeing neuropsych, genetics, and child study center in April. His ears are well, MRI was normal, and eyes are great! We did learn that he has joint laxity and oral hyposensitivity. So he also receives feeding therapy. He still has issues with eating, chewing, and playing correctly. He signs more, please, and all done, and SPEAKS all done!!! Thats right, he has a word!!!