Autism, Sensory Processing Disorder and a Therapy Swing

I am about to share with you something that has always made me nervous. Of all the things that i have discovered along my autism journey and discovering my son, Sensory Processing disorder was the one i have been the most skeptical of, and the hardest to accept. I, to be honest do not know why. Looking back now, its obviously a medical issue.But at the time of living in the craziness and honestly the emotional and physical strain this dis order can have on a family, i guess its hard to step out side of the situation. I want to include this in our learning about Autism month because allot of autistic's have this dis order..you can also have this order and not be autistic. I am not a doctor, but i will try to explain this to you in the best way i can, but please if you do have any questions or anything, please ask, or talk to a professional. My experiences is with my Autistic son, Elijah mostly and with the many Moms i have talked to whose children have this dis order. And i say many many times...Every Child is different, because we all process differently. So if you have a child or know a child with this, and not agree with something i say, that would not surprise me, we are all created differently.

   I did not know Elijah was having sensory issues originally. At the time of Elijah's very first evaluation, it was recommended to me to have an Occupational Therapist evaluate Elijah, because they saw the obvious signs. I just knew Elijah could never eat anything hot, hated baths, hair cuts, wearing clothes, he would freak out if he got dirty and freak out if i tried to clean him, he could not sit on a toilet, he couldn't be held up side down, he ate super sharp cheddar cheese, loved holding ice, and swinging on swings , didnt feel pain typically... long list so i will stop there. But in the craziness of just trying to survive the every day, i never stepped back and said wait, this is wrong. So when Elijah had the evaluation and flew through with flying colors in needing the therapy i was a little surprised. Until the first week he started, and i saw an immediate change in him. He became calmer more relaxed and more productive. 

  What exactly is this disorder? Well as humans we all have senses, touch, taste, feel, seeing, hearing. Elijah's sensory system is over developed in some areas and under developed in others. He isn't balanced like a person with a typical system is. Sure we all have sensory things we react to. I hate the feel of wool, the sounds of screaming chalk on the chalk board, and the taste of fish. But Elijah's sensory system dysfunctions to the point that he feels thing we don't, and his body will have un controllable reactions to sensory input. Sounds hurt his ears, Lights blind him, touch hurts him, being held up side down..he forgets to breath,  he has uncontrollable eye movements in certain situations, he tantrums and gets extreamly aggressive as an out put. All of these reactions are his body's way of dealing with the stress his sensory system is feeling at that moment. Try functioning a normal life in labor, that's kinda how a dysfunctional sensory system is like..your in pain and cant control it. 

  I want to show you how we help Elijah cope with this. It has taken us a year in some situations to help him regulate things...but allot of times you can de sensitize the system and have him get used to the feeling his body produces. He may never feel things like a typical person, but he can get used to what he feels and learn to control himself. Its allot to ask of a 4 year old. But he is getting there. This is called de sensitization. This will be a series, this is the first of it. 

Meet Elijah's therapy swing! He is not pictured here because he is, oddly enough in occupational therapy right now..lol. My typical kids love this too! Because we all have sensory systems, allot of Elijah's therapy stuff we do my non sensory kids love too! Its allot of fun! In therapy we are discovering what calms Elijah and what excites him, we stay far away from the exciters and cling to the calmers. The swing is a calmer. He could fall asleep in this. When he is having a hard time with dealing, we send him to the swing and make him swing away...and then, sometimes, its a pirate ship..and He and Julia are sailing through crocodile infested waters! LOL, its win win ;) And what kid wouldn't love a swing in their room? See therapy can be fun!

Our therapy Swing

Autism therapy sing

Baby's Hospital Bag/Diaper Bag List

I have created this post mostly for me, I lose this list every baby..so i am creating this list and then Pinteresting it..haha. Hopefully that means I will be able to find it again. Un like the 4 previous time's I have made it!

What I Pack in The Baby's Hospital Bag/Diaper Bag: *For a Nursing Mommy*

1. Obviously you need a good size diaper bag
2. Baby clothes for the hospital (i usually bring 2 outfits suitable for the season)
3. Baby Hats (make sure they are cute..you will be taking lots of pics)
4. Blankets
5. Burp cloths
6. Bibs
7. Onsies
8. Diapers
9. Wipes
10. Rash Cream, just a side note, i take off all of the safety seals so i am not fussing with those at the hospital
11. Bottles
12. Sterilized Nipples for bottles that are the correct "flow" hole...ideally you don't need bottles , but having a baby unexspectadlly end up in the NICU for a night, i always bring them now
13. Pacifiers, sterilized and checked for any loose parts
14. Disposable Breast Pads, i have had my milk come in a day post delivery and then 3 days post delivery, you never know when you need them...i use washable at home
15. Freezer storage bags For Breast Milk
16. Lanolin Nipple Cream, buy some trust me..i only need one bottle per kid until i don't need it any more but it helps so  much
17. Breast Pump..this is a separate Bag
18. Baby travel Package, Baby wash, lotion, and shampoo in travel sizes
19. Plastic Baggies for soiled diapers, the dollar store sells them in the baby section, 75 for $1 and when you sweet child has a blow out in the car, you will thank me!
20. Socks
21. A&D Ointment..for a circ if your having a boy
22. Hair Bands if your having a girl, gotta look pretty for those pics
23. Nursing Cover, you have no privacy if you are in a hospital, i think the cleaning guys always time this just right ;)
24. Take Home outfit, pack 2, one for cooler weather and one for warmer weather...I always have a favorite but have a back up just in case

Dont forget the Car Seat! I will have a post on what i pack for my hospital Bag soon too. But I am currently packing the diaper bag so this is pertinent. Hope that you find this interesting too :)

Prayers Answered

We just got back from Elijah's meeting, and it went wonderful! Better than expected actually. We were asked what we wanted and got it. Its days like today when all the sacrifice makes it so worth it!!! We only were reduced 1 hour of speech a week in the summer, and 3 hours of SEIT so instead of 24 hours he gets 20 and then 1 1/2 hours of OT. Thats really really good, most kids get their summer hours taken away! I started off the meeting thanking the school board, and got all teary eyed, man having kids has turned me into a sap! lol.. I thanked them for the amazing support they have been and told them how proud of Elijah i am. I printed up a few pics of him and showed them his beautiful face :) And we got down to business and it all went so incredibly well, i was on cloud 9!! Big smiles leaving the place, We also were    approved a PT eval, we have some issues with Elijah i wont discuss yet, but we will be doing a PT eval like i said and he will need some medical testing, it could be nothing it could be serious. I don't now what it is yet, but just a some prayers would be great. Thank you so much for the prayers, they mean so much. I feel like i won a million bucks right now :) We are gonna order pizza for lunch to celebrate and then daddy has to go to work :/ But for now we will celebrate our victory! YAY!

Prayers Please

Tomorrow we have a CPSE meeting..this is the technical definition of a CPSE meeting...


CPSE (Committee on Preschool Special Education) - The team that is ultimately responsible for conducting evaluations and recommending placement of children (3-5 years of age) in special education programs is the CPSE. The members of the CPSE should include under law the child’s parent, a parent member, a district representative, a general education teacher, a special education teacher, someone who can read and expound upon each of the social, psychological, and academic reports submitted, if transitioning from early intervention programs, an appropriate professional designated by the agency responsible, and a county representative at the discretion of the municipality should also be a part of CPSE meetings.


Basically I will be joining Elijah's therapy team and petitioning the school district. I will be asking for summer hours for Elijah (which are only provided if he shows regression during breaks) and asking for his therapy to continue next year as well. There are parents who walk away losing most services from these meetings, that has never been the case with us. The school district has always been wonderful. But we all know in the back of our minds it is possible. Can you just pray? That Elijah gets what he needs? I believe that summer hours are necessary this year. He has made great strides, but i am afraid if he months off of therapy we would be starting at a lower level in the fall. Elijah does show regression during breaks, but he has an amazing memory, so the regression isn't significant as they may require. But he is having a hard time right now, he cant distinguish between the question "what is your name?" and "how old are you?" he answers "Whyjah" to both...every thing he masters is allot of work, i would hate to stop that. The thought of having summers off does have an appeal to my selfish side, i have to admit. But my gut knows what my boy needs and its not the same for what i want. Especially with the new baby on the way. I always get so nervous, because I know what I am asking, Elijah's therapy is expensive. In other states, parents second mortgage their home to get the top notch therapy we get for Elijah, it even goes down to what county you live in. And even the school district. Its really a shame, because 50% of kids receiving ABA therapy are main streamed. It make cost allot for a few years. But in the long run, if Elijah can be an independent Adult (at this time we do not see a reason why he wouldn't be.. Elijah is very much a typical boy stuck in a body who doesn't understand how to communicate) It will be so much cheaper for the state. So just pray please, allot rest on this. Including my sons progress. I will let you all know how it goes! I appreciate all the prayers and support. It always seems when we are having a rough day, some one has something encouraging to say..that give me enough of a boost to go on and keep fighting. I appreciate you all more than you will ever know, you will just have to take my word for it ;)

How is Elijah doing?

Great!...and some times not so great. We have really good days, and some not so good days. But isnt that parenting?

Since becoming verbal (meaning using words) since June/July he has come so far. By leaps and bounds! We chose ABA as his therapy route. Its just amazing. I was worried if i was gonna be able to find a therapy who lined up with my thoughts and parenting style. ABA is such a gift. It goes after the behaviors while teaching the child. So i know when Elijah is in therapy he gets away with nothing. And his therapists are amazing. They respect my parenting style, and continue it in therapy. This consistency is key with Elijah, he needs the black and white rules and expectations.

Elijah can count to 10 pretty well, sing parts of songs, knows his shapes and colors. Can build amazing structures out of blocks, legos etc. Is #1 trained, and recently requested to use the bathroom for the first time (he will run and use it himself but never verbally request) He recently learned when asked for his name to say "Elijah" (or as he says whyjah) He says excuse me when interrupting, thank you when receiving and please when asking. Elijah loves to play pretend (no easy task for an autistic) often plays dress up, love to play with imaginex, dinosaurs, toy story dolls, and loves puzzles! He also loves trains, the play ground (green ground as he says) is starting to enjoy being read to and will sit to listen for a couple pages, although receptively he still is delayed enough that reading to  him is over his head. Elijah has an insanely amazing memory, the kid forgets nothing. seriously. He is a great color er, and loves to play in water. His best friends are his siblings who see he as an equal and they all get along so well! Its funny how they don't even notice anything.

Elijah still has a way to go, he just turned 4 and still isn't #2 trained. The toilet scares him, daddy is gonna build him something so he can brace himself better. We have allot of sensory issues there and this will take time, but we are forming a new plan, after seeking advice from other moms who kids have the same issues. He needs to be de sensitized and we will be starting that soon! He does really well for hair cuts now, only gets antsy at the end, but not anything unusual. He still hates to have water pored on his head at bath time, he freaks out and covers his ears but i have some sensory ideas i have been using and its gotten much better. Elijah wearing clothes is also gotten better...we have de sensitized him to those also. Getting dressed for him has become so much easier..he still prefers his comfy jammies but so do i ;) Elijah's eating habits have greatly improved, his pallet is broading and i am thrilled. We have his diet mostly under control and therefore his diapers are no longer toxic..yay!

Goals we have? #2 trained, cant wait for that. I will be starting some pre school with him. He still has some ways to go behavior wise, but has come so far i am not worried he wont get there. He still doesn't understand when to be quiet and why and those type of things. But with repetition he learns. Elijah is learning to apologize and "make it right" as we call it in our family, he still doesn't understand the concept though and often if one of us gets hurt or if one of the kids is being disciplined he will apologize..its kinda funny. He also doesn't like when we have to discipline his siblings..he feels like their protector. And often chastises us for chastising his siblings.

Elijah is a really happy kid, he has an awesome smile. He also is very smart. He retains all he has learned well. But getting him to understand what he is learning is difficult. Often we still revert to visual cues as he is a visual learner. Elijah loves to cuddle, and wipe kisses away so i have to re kiss him. He loves to play with other kids.

I will have to post a video of him talking some time soon, it is hard because he doesnt converse but he does express need!

My Bubby is a great kid. He is a favorite with the therapist because he has such a huge heart..he feels all emotion to the extream. I am so proud of how far he has come...every 2 weeks i have a meeting with his therapists (all 4 ABA therapists) and we set new goals for him to work on. Often they are speech related, his intelligibility right now is poor because he had a language burst. He continues to struggle with compliance and understand allot. But honestly he is catching up so quick, the more he understands the easier it gets!

What a bright future Elijah has! I believe there is nothing he cant do, he excels at all we ask of him and amazes us! But don't be fooled. All Elijah has learned so far has taken so much work. It is so well worth it. Good Job Bubby!

Parenting a Child on the Autism Spectrum

Man, this topic honestly could be a whole series. Parenting a child on the spectrum is no easy task. I mean, parenting a typical child is not an easy task..and then you throw autism on top of it..oh boy! There are so many layers to this subject...I will try to briefly touch on them all..i want to respect my readers time, and i really do not want to over post.

When Elijah was diagnosed, i was not in shock, i went in knowing, so when we walked out of the doctors office that day, digesting what Elijah was diagnosed with wasn't to hard for me. But dealing with what I needed to be for Elijah was over whelming for me. I don't have a special education degree, or at that point really knew nothing at all about what Autism is. What a long road i had ahead of me.

I wish i could say that road was smooth and paved for me. That i had allot of help along the way. But this was something Kristofer and i had to travel on our own. Autism has effected every aspect of our lives, no part has gone untouched by it. its a 24/7 often time exhausting job. We have plowed through sleep disorder issues, diet issues, behavior issues, privacy issues, not being able to shop like normal family, financial strains because of medical bills and testing Elijah had to have. Its just been insane this past year when i look back at what we have gone through. Holy Cow! If i dissected every hill, mountain we have had to climb..its just exhausting to think about. At least once or twice a week i have to sit down to dedicate time for phone and paper work. The list goes on and on you get the idea.

My goal when i started out as a parent was simple, just be a good steward with what God has given me. When Elijah was diagnosed, i prayed this would continue. And the research began, late nights, tuning into early morning at the computer.. researching every thing, learning every thing i could. Trying to weed through the extremist and coming up with logical conclusions. So much is up in the air about autism, and every one thinks they know all the answers, annoying frankly. How many studies have they come up with claiming to know "the cause" every one thinking they know all the answers. I really don't care at this point as to what causes it, that isn't my driving force. All I care is, how do i make myself what i need to be for Elijah? And so my journey began...

Every child on the spectrum is so different, if you think about it, every person on the spectrum or not communicates so differently. Raising Elijah is no different. I have had to learn how to think "Autism" when we have a situation with Elijah, i have to forget how a typical person thinks and reasons and go into "autism zone". I stop, and look and see what sensory triggers there could be, if its a communication thing or not and if he is just being plain old naughty. Its normally a mixture of the 3. This has taken much time, and i am getting there. Its almost like having a person live in your home who is from another country, who doesn't speak your language and has a compleatly different culture than yours. How do you communicate with them? How do you explain your culture to some one who can not understand a lick of what you say and tries to judge you by every action he can visually see? Its not easy. It takes time, often months and months dedicated to one behavior or action. As Elijah is becoming more verbal, it gets so much easier.

There are days I get worn out. Of course his worst days are when he is up for 2 or 3 hours a night, I cant just sleep through it. He needs to be watched at all times. Elijah would just wander out in the street stark naked if i let him. I couldn't trust him to know not to do that. So I often run off of 4 hours of sleep. We are slowly getting control of this..i refuse to put him on medication if we can figure this out with out it. if the days comes that we cant, we will cross that bridge when we get there. For now, we are making it. These days are hard, i home school Julia and being pregnant and having a 18 month old...well..some days are just days we survive. I really try so hard to have a good attitude with the kids those days. Ignore what i want to say and do and say and do the things that keep my testimony with my kids. What a test of self will and control!

I have learned so much parenting Elijah, it truly has strengthened me. I feel as though i have been stripped of all things that once i saw as important, like money, schedule's, privacy, church, food, home, and every thing has been affected and changed. When you are left with almost nothing, you begin to build up in a new way. Was the process pleasant? No. Necessary? Yes.

I was determined not to become bitter, very often parents on the spectrum become hard bitter people. The challenges they face every day wear them down slowly. Its sad..and lonely. Kris and I made the choice to excel. We have many many discussions, and we work as an team. We look at this as a positive experience. God gave us Elijah to teach us lessons and how to love in a very pure form. And through these lessons we have become stronger. We stopped holding things and ideals as important and truly held onto the things that God sees as important. If something makes our life more complicated with Elijah, we let it go. No "thing" is as important as my children. This wasn't an easy task. But battling to make our life "normal" became impossible. Our new normal is great. Yes it still has it challenges, what life doesn't? It still has its hard ships..what person doesn't? Instead we have focused on the every day miracles we see in Elijah's life, and how God is working through him. Its nothing short of amazing. Just stop and rejoice over the very small things...delight in the small milestones and cry tears of joy. Because of all this trial, I have been able to stand in awe at the blessings. I have so many many thing to be thankful for. My blessing truly outnumber my trials.

God has blessed me with a child with Autism.

Asher's Diaper Bag is here!

If you know me, or even if you don't and are a reader..you probably know i love organization! Love. A while back i asked a friend of mine to sew me a diaper bag, she had sewn my sister one, and i wanted it..i had diaper bag envy, lol...i am such a mom! But being that i will have 2 in diapers and 1 in pull ups i need it a little bigger. She so graciously agreed to attempt to up size the bag for me, and i could pick my own fabric :) I was so excited!! I was hoping i i could find something Vera Wangish..but not totally boy (i had to carry it, and i wanted it to be some what feminine) Well it came!! And i love it..although it is much bigger than the pictures portray. It Holds it shape so well, even though there is nothing in it yet. And by yet i mean..i can officially pack Ashers hospital bag now! I will be compiling the contents for it over the next couple weeks and should be all set for that soon! So excited! Can Ya tell?

 
  interested in a diaper bag?Contact me and i will hook you up with Sarah, she is super sweet and a joy to work with! Now i am off to nest! Hehe

Happy Birthday Elijah!

Robin Good from Veggie tales from
grandpa and grandma 

I may be the only mother who gives her son pre school books
 for his birthday

A T Ball Set! 

Opening Legos from Aunt Hollie and KAka

Happy Birthday to you

Our Special guests

First Day of Spring Break

Elijah is in an Intensive Therapy ABA program, that basically means he has an average of 25 hours of in home therapy a week.  Often its more, because Elijah had a therapist out on FMLA leave and for a little over a month we fell behind until they could find a new therapist. So Elijah can pull a 27 to 30 hour week easily. The school district funds this therapy, it can cost upwards of $10, 000 a month (although i do believe that the district get a deal and its only 30 to 40,000 a year). My husband and i could never afford this. Most school districts would never ever pay the hours and the price for it, God is good and my husband and i have found a district willing to flip the bill, so we have sacrificed allot, and we live in that school district. So far they have granted us everything we have asked for. On the 20th, we have a meeting, with the Chairperson, to talk about our plan of action for Elijah for the next year and petition for summer therapy. I am nervous, it is not unheard of that parents can lose everything in these meetings, but so far as i said the district has been wonderful. Please pray for us as i have to be Elijah's advocate. I know they are gonna want to send him to pre school, and i have to reveal i have absolutely no intention of doing so. I know he is not ready yet.
Because Elijah goes through the school district, we have breaks along with their schedule. Today was the first day of spring break. So excited to have my kids all to my self, no interruptions for a whole week!  This was our morning...

My little man was allowed to sleep in, no being up and fed and dressed and ready for therapy at 8 am for him today!

 We made scrambled eggs and toast, we didn't have a chefs hat that fit him, so we improvised...a fuzzy pimp hat instead..lol! He was super proud!

And then i gave him permission to go wake up his sister, who was sleeping in herself. This is the look of pure joy a little brother has, when he is told he can be annoying as he wants..haha..poor Julia!

What a great start to break!

"New" Study

Interesting News Report, click to veiw

Its been in the news lately, 1 in 88 children have Autism. Crazy Scary number! You know whats even crazier? These are numbers from 2008..yes, our newest info is already 4 years old..how crazy is that? An epidemic that is taking over our children, at lightning speed and the best we can do is have our latest info 4 years old..they are currently working on 2010s numbers... Elijah was diagnosed in 2011. He wont show in stats until 2015.  I just thought you may find this interesting. I did.

Its Autism Awareness Month!

Thats right! April is Autism awareness month. I like to set this month aside to educate my sweet readers a little more on autism. I have come so far in understanding this diagnosis since Elijah was diagnosed a year ago.

Having your child diagnosed is very overwhelming. My biggest concern was his future..it scared me. And also if i was good enough for Elijah. Could i really give him all he needed? What a journey this year has been! Honestly, i am happy its behind us...because Elijah growth has been nothing short of a gift from God. Looking back, diagnosis was such a wonderful thing. Yes, it hurts to hear your child has "something wrong with them" but if you can move past that, its the beginning of great achievements. Therapy has done nothing short of empowered our family, when our day to day life was getting tough just to function. I have watched my little boy become the person i have always known was there. At 3 1/2 my son said mommy for the first time, it took 2 months for me to stop tearing up every time he said it. I still have many many moments where i tear up. Riding in the car, He is singing along to his veggie tales CD..and the moment hits me, even writing this i tear up, just thinking where we have come from, i am amazed. I had hoped that Elijah would make these leaps and bounds. But there was a part of me that was so scared he wouldn't. A part of me that was so afraid i would never know my sons favorite food, or DVD or color or toy (pizza, monsters inc, orange and legos btw).  This past year i have watched Elijah unfold, slowly, some times so slow that i dont even notice...and then sometimes, it hits me all at once, like the last week i was in a meeting about him, he comes up and blurts out a sentence..and i just stare at him, speechless, because i know i am supposed to respond to him, but i am in shock because i cant believe he just spoke an entire sentence  to me! I still have many of those moments, he still astounds me. I am so proud of him, there isn't a little boy who doesn't work harder than him. He works more therapy hours a week than allot of adults work. He has a long way to go still, but Elijah will get there. I have no doubt. This little boy of mine, he is amazing, tenacious, and my hero.

So welcome to my month of autism awareness, i hope at the end of this month you will understand a little more about it.