Monday, March 25, 2013

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:

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