First year ups n downs n all arounds!!

My boys first few days seemed like a blur. It went from one spit up to a full on aspiration. He turned blue a few times and we ended up at children's hospital. After many tests and weeks of trial and error it was determined he had GERD (reflux of acid and stomach contents that either comes all the way up or sits eroding tissue or enters lungs) the GERD complicated by a mild tracheomalacia (soft cartilage would collapse wind pipe) was to blame for the aspiration, which caused his blue spells. After this was all discovered it made more sense and we hoped and prayed for the trachea to heal itself to avoid a procedure to fix it.

A few days at home and my baby would just squeak like a lil seal when he ate and breathed to deeply. It was so scary and just different for me. I was on constant worry mode. Sleep was not even a need or want at this point. I would stay up all night just watching him.

By the time he was six wks old he had been weaned from breast milk because I was told he had MSPI (milk soy protein intolerance) I then had three formula changes and ended up sticking with a hypoallergenic one that smelled horrible! At this time we started PPI treatment because the regular GERD stuff was not working. I did some research and found a great pedi gastro dr and he agreed that we needed to try a PPI and combine it with mylanta and Zantac. This combo seemed to work. We stuck with it and increased when needed. He was doing ok but still having major sleep issues. It reminded me of the moments in the womb, he was always in a state of movement!! When he would doze off he would twitch and roll around a lot. I brought this up to the dr and no one seemed to think it was a big deal, but boy was I tired!! My hubby and I pulled shifts trying to get a few hrs of sleep. I tried every thing from special blankets, clothes, and reflux sheets with Velcro straps to hold him in place (dubbed the baby straight jacket by my older kids).

By 6 mo he seemed to be doing so much better. The trachea grew strong and spit up was less. He was still grumpy and not sleeping at night, but I was getting USED to his temperament and I learned his cries like a baby whisperer!

At 8 mo he had an endoscope and allergy testing. Scope showed white spots that indicate scarring from the acid. I was so sad. The allergy test showed Milk as his highest allergey and others were mild enough that I got the ok to try foods. This was hell, he couldnt tolerate much. Most purees caused flare up and gas. We stuck to the few he could handle.

This is when it hit me that how can a baby learn if he is in so much pain? All the crying and fussiness were really warranted. No wonder he was by this time DELAYED on every chart.

By one yr he still wasn't cooing. He didn't wave, smiles were few, he rarely made eye contact, and he didn't like to cuddle at all. That was the hardest, I would hold him close and he would arch away. I avoided his 12 mo check because I knew he was really behind and I just felt like it had to be my fault and I was embarrassed. (terrible I know!!)

He had an awesome party and his second year started, boy does time fly!

One of my favorite pics!!!  A smile and he looked at the camera.

Jojo at his first birthday!!

A checklist changed everything

Before I knew it he was almost 20 mo old and the dreaded visit to the pediatrician was due. I, of course, delayed it for a whole month. Again, I just didn't want to hear "your son is delayed" duhhh I have four kids and I know most babies talk by now and point and clap and they don't constantly flap their ears!

I took him. It was worse than I thought. The first thing I heard was "why isn't he uptodate on his vaccines?" I gave the same answers I usually did, my daughter had a severe reaction that led to convulsions and from that point on my family had been VAX free, he wasn't happy and even though I had been seeing him(and other Dr.s in his office) since my oldest was a baby (14yrs now) he seemed surprised and kinda snippy at my decision. He proceeded to tell me that the whooping cough was rampant and it could kill my child and I felt attacked so guess what I freaking gave in! ONE freaking shot of poison into my baby. I don't know why I did it other than that I was scared of the whooping cough. Well after the shot, the dr came in and read me a check list with yes or no answers, I answered it and he said Hmmmm, "does he always flap His ears like that?" and I was like..yup he sure does. And then the coward left the room. He never came back. He sent his medical asst in with a stack of papers for me to read. I gathered my stuff and got to my car and shuffled through the papers. They were all about Early Intervention and Autism. I did what I do best lately, I cried and cried some more, cleaned my face and headed to the closest store and got me a cookie and jojo a toy.

When I got home it was like a bad dream. I felt like a zombie for a few days. I didn't tell anyone except the hubby and then I started reading.  when I say reading I mean I would get a book and finish it that night.  My first read was Mother Warriors by Jenny McCarthy.  Oh I cried and I hyperventilated and then I rejoiced in the hope she instilled in me.  I then went on to read every book I could, even the weird ones from the early 80s that seemed more kooky than anything.
I quickly figured out after reading a few books that it's going to take some hard work and dedication but there is hope. My jojo eventually will talk and interact. He just requires some special attention right now. And a special diet. I already knew he was milk protein intolerant and had sensitivities to alot of foods but now we would be going gluten/sugar less.  Jojo didn't seem to notice or mind.  My older cuties sure did, ummm where the poptarts mom?  ha, we are a family so it has to be all or none, right?  Ok ok I gave in and they get little treats here and there, mostly homemade so I can limit the sugar and eliminate additives.

On May 15, 2012 the early intervention began, services in home for developmental skills, fine motor, communication, and speech.

Here we go baby, you, and I hand in hand and binky in check!!

This is Jojo and Grampa Joe.  4 weeks into therapy and he is sitting more attentively and interacting, sure he still flaps and hits us at random, but every smile speaks tons to me. 

Early intervention and therapy oh my!

Now, if you asked me in May how I felt I would have said that it was all TOO much! We had so many visits and multiple test done by different evaluators, at one point we had a panel of five all here in the living room to observe and evaluate my sons behaviors and communication skills. This was hard on my boy because he was so overwhelmed by too many strangers all at once. And geez I went crazy cleaning up like a good mommy before each visit ( this is still something I'm working on, cleaning is one thing but freaking out every time they come is exhausting!) but all in all within two weeks of the first time I heard the words early intervention...things were rolling!

So NOW I feel We were very fortunate to have such great services that act fast! *remember the window of time to get the most of therapies is early..

[So if you are just starting out the very first thing to do is self refer to your local early intervention program. Most are free or fee based. Don't be scared of the fees, if any they are minimal. They will call you promptly to start the interview for initial qualifications and go from there. Everyone I spoke to and interacted with we're very personable and professional. My advice is have a note book ready and keep all the hand outs in order and be prepared to take notes as needed]

The testing that Jojo got was done by a developmental specialist and speech therapist. They used the DAYC REEL 3 test. Here are his results:
Area of dev.  Score.  Delay
Cognitive. Ss73. Moderate
Fine motor. Ss70. Moderate
Social/emotional ss60. Significant delay
Adaptive. Ss74. Moderate
Language
Receptive Lang score <55  these are all considered significant delays ):
Expressive Lang score <55
Total language score<46 
Gross motor is age appropriate! He is a runner.

After the test are done and they find you eligible for services, take a deep breathe! For me it was hard to see jojo doing therapy. It was nothing but fun for him but I felt like I should have been doing those things too. I realized he did better if I shadowed and then stepped away to another room. He was more attentive and actually could do what they showed him. It was so amazing to see my lil guy grab a tiny pompom and put it in the bowl.
It's all about the little things each day.
A smile
A sign language use
A beautiful messy painting
A two hour naptime

We are now working on the final stages of setting up the 25hr/week ABA therapy.  This is applied behavior analysis therapy and from what I have read and heard this is the most important to get going!  Its alot of red tape with insurance companies but once you feel empowered you kinda just go into mommy advocate mode and don't accept no for an answer, there is always a way!!

ASA support group, AMAZING!

Tonight I did something I did not think I could do!  I made it through a whole 90 min session at a support group with out crying.  I usually lather on the mascara as a way to divert the crying spells because, hello no one looks pretty with black mascara running down their face, right?  Well after many failed attempts with the mascara tactic I decided to just go and bring tissue!!

The ASA= Autism Society of America

They have a great group of people willing to help anyone with getting your loved one on track and keeping it organized.  Tonight's group was all about coping with the stress of the daily struggle, and believe me I needed that!!  Setting small daily goals to reach a more defined one was discussed and it made sense.
My HUGE goal for my son is to hear him speak "MAMA", well it has to start with the basics.  Eventually he will move up to making words, or possibly sign language but just a communication would be nice.  (he used the sign for MORE today..loved it!!) I will be doing lots of goal setting and hopefully achieving those that i set out for! 

Here is an insert from the ASA website, www.autism-society.org

The Autism Society, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. We do this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy.



Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a "spectrum disorder" that affects individuals differently and to varying degrees. There is no known single cause of autism, but increased awareness and funding can help families today.

In March 2012, the Centers for Disease Control and Prevention issued their ADDM autism prevalence report. The report concluded that the prevalence of autism had risen to 1 in every 88 births in the United States and almost 1 in 54 boys.
 

Know the Signs: Early Identification Can Change Lives

Autism is treatable. Children do not "outgrow" autism, but studies show that early diagnosis and intervention lead to significantly improved outcomes.

Here are some signs to look for in the children in your life:

• Lack of or delay in spoken language
• Repetitive use of language and/or motor mannerisms (e.g., hand-flapping, twirling objects)
• Little or no eye contact
• Lack of interest in peer relationships
• Lack of spontaneous or make-believe play
• Persistent fixation on parts of objects

We recently celebrated his 2nd birthday, it was bittersweet.  Not only did it signify him growing up so fast, it also was the age they tend to get diagnosed.  We kept his celebration sensory friendly and it went perfect.

I Love you soooooo Much!

Sensory Play & Relief

I have been learning So much about the sensory side of things.  Like, I know that when My son is spinning and flapping its because a need in his sensory system is not being "fed".  When he is angry or screaming its the same thing, he need input/output.  So here's a dandy little list of what we now do to help relieve some of that need:

   Bean Bag therapy:  We have a simple medium sized bean bag.  We toss it across the room and jojo runs and "crashes" into it.  we do this about 6 times and its just enough for him to get out that need for input.  Sometimes he will initiate this himself.

Joint decompression:  Hard to put into words but here it goes, I start at his wrist and wrap both hands around it and gently do a pull or tug to release tension at the joints.  I do the wrist, elbow and shoulder.  then the ankle and knee.  He LOVES this, it feels good and relaxes him.

Blanket drag:   Place a blanket on the floor, put my kiddo in the middle and simply drag him around.  We do this for about 15 min or as long as he will allow it.  we have wood floors so this is pretty fun and easy on my back!

Burrito Roll Up:  Roll him up in a blanket, pretty tight BUT DO NOT COVER HIS FACE, and then unroll.  He gets a kick out of this one for sure.

Pushing Heavy Objects:  This one he was already doing and I was stopping him, but its actually a good thing.  So we have an ottoman that is pretty heavy and I flip it upside down and he pushes it back n forth.  This tires him out and stop his need for running obsessively back n forth down the hall. 

Trampoline  This one is outside and its been pretty hot here in AZ. so we haven't given this a whirl yet.  but with the way he bounces around on his tip toes i think he will love it.

Brushing:  I am excited to learn this one this Friday!  Jojo responds so well to firm pressure massage and the joint movement that I think brushing will be awesome too!  Its basically a natural bristled brush, soft one of course and you brush the child's skin.  I think this would really help with the "not wanting to be touched"  showing him that touch is OK.

Just a quick update:  Yesterday during speech we downloaded some pretty cool apps on the IPAD for jojo to work with.  I am amazed at the technology and how he can pick up how to use them.  even though he can not yet, use his pointer finger he has managed to use his knuckles to manipulate the ipad, cool!  here are the apps:

INJINI Lite (full version is 29.99..yikes) great for attention keeping, and color recognition
BABYEGGS Lite  great for animal sounds, colors, counting and basic letter sounds

Bittersweet Moments

My sweet boy has had a few times being sick in the last month or so, and its the most unusual part of this roller coaster BUT, I love it!!!  Here's the deal, when he gets the slightest illness he act so differently.  He is affectionate, he babbles all day and guess what??!! He babbled out his famous three words this past weekend, GooGooGoo, YeaYeaYea, and Drum roll please....MAAAAMAAA!!  Oh my heart melts.  I love these moments and I hold them in a special place in my heart so when the hustle n bustle of a full on "spinning island" day is about I just reach into my reserve and keep going.

 I don't fully understand why he seems so different when he is sick but it was clearly evident at the dr's office.  The Pedi walks in and Jojo burys his head on my chest and says maamaamaa and I jumped up and said, "omg omg, he said mama!" and the pedi looks at me and patted me on the back.  I chose not to disclose the whole autism thing at this visit because for that moment, that day he was JoJo at his bestest! This pedi was not our usual one and I just didn't feel the need to "tell" him.  Here's to a full week of therapy and fun.

This is Jojos bean bag, its the ultimate sensory relief for him!

A baking pity party day!

The last few days have been anything but easy, my sweet boy has been having what I now call "a jojo kinda day" this consists of random screaming, the kind that makes the veins in his neck pulsate. Running back and forth down the hall on his tip toes, Flapping his ears or spinning around. he gets into a kind of daze, calling his name is a sad reminder of what's really going on. I say,"jojo jojo jojo!" and he doesn't even bat an eye or look my way.

When these days happen I drive myself mad. He is very content in this world of his own. It's when I interrupt that world that he gets upset. I try to come up with creative play ideas or simple distraction methods. All of which don't seem to work right now. These are the days that I just cry. I cry for sake of not knowing what to do. I cry for the sadness I feel for my boy, I can't imagine the frustration he feels when he can't communicate to me what he needs or wants. After a good cry I have no choice but to regroup and get it together. I find all of this so tiring lately but I just know that someday (I hope soon) things will be easier. Until then I shall cry, regroup, and then bake!!

Today I baked a cake for my teens birthday tomorrow to relieve some of my stress. A yummy homemade marble cake with chocolate buttercream icing.
Baking is a release for me. I absolutely love it. The smell, the smiles for those who get the "goods" and the feeling of accomplishment when it's just the way it should be.

Here's to a great week ahead!!

Pancakes, Please!

Therapy Painting

This has been a crazy week to say the least. Emotions have been all over the place. I find myself going back n forth with the "why me" and the "smack this shit in the face" attitude. For tonight's sake I feel pretty depleted but I have seen so much progress that my heart is full. How can I feel two totally different emotions at the same time? I have asked myself this a lot over the past 13 weeks. Yup, I am keeping track of the weeks since therapy first started.

In the past weeks I have seen more eye contact, I love the gazes even if they don't last long it always melts my heart. In the last week or so I have heard his VOICE!! My boy is now making the babbling noises. He is gaa gaa and ya ya all day on a good day. And the bestest news yet is he has been consistently saying maamaa. I don't think he relates it to me exactly but I don't care I relish in the moment. It's more of a repetitive sound for him.

This is a day he had to be in the tub!!!

He is still having plenty of stimming issues and I often wonder if its an ISSUE or just him being him? He just really likes to flap his ears and wail a hummed toon that only he knows. It takes him to his own happy place. He has started spinning a little more but if I correct him he is pretty good at stopping. Usually redirecting or distracting him works well.

I have to note that I'm at my local ihop writing this over a short stack of pancakes, pure delight!! The table next to me is occupied by a father and a set of six yr old twins, yup I asked! And it was so awesome to see the interaction and between father and kids. They were definitely going bananas on him but he kept his composure and handled it with a smile. By the time they left his daughter was under the table hiding and his son was in the bathroom screaming he needed to go potty! It was all too cute and made me smile and think, hey typical kids can be a handful too(just a different handful) OK time to head home back to reality and back to where my make believe land (of it all just going away) is nothing more than my glamorized imagination!

Long Term Care? Really???

So I have to admit that all I really knew or thought I knew about Autism was from a movie I saw years ago.  It portrayed a man that had a fascination with numbers and repeating things, nothing too bad I thought back then.  And in all honesty when I look at the whole picture and what I am dealing with I feel the same, Its not too bad.  Sure, I am completely overwhelmed by appointments, therapy sessions, lack of sleep, financial output for it all,  and just the daily routine of having a little guy on the spectrum.  But, It could always be worse.  I am so very thankful for every little "ah" "m" "ga" I hear from my son. 

A few weeks back my sons coordinator mentioned that we needed to apply for Long term coverage.  I just kinda pushed it back into my "think about it later file" and when it came up again I was like huh? What do you mean LONG term coverage??  My plan is to kick this in the ass and be done with it.  I never looked past his toddler years.  I guess the BIG picture is that there is a possibility that the outcome could not be what I imagine (huh, really?) and to safeguard his therapy and coverage we have to apply.  So I did and our app is currently being processed and what not.  This is one thing I just don't want even think about.  I picture Jojo being a typical kid in a few years and you know what?  I'm keeping that picture.

This week has been a HUGE step for us.  We went from one day sessions to three!!  I had all sort of new things thrown out to me.  The notes I took are a mess but I'm glad I took them.  The speech part of things is finally coming more into the front lines now.  I learned that jojos fixation with a binky isn't typical binky love, rather its a need to have his mouth full and busy.  So there is a great Oral motor tool called a DnZVibe, its basically like a plastic wand that had different end tips that he can chew on, suck on, and drool all over and think he is having a grand ole time but really it will be helping to relieve his sensory need and developing some proper use of his tongue to help promote speech.  I just ordered his new tool tonight and I'm super motivated to have him give it a whirl.  She also mentioned getting him a chewy tube, I have been reluctant because it just seems like another thing to suck/chew on and well I have already bought a ton!
We also used the Ipad and got some cool apps to start using during and in between sessions:  here's what we are using
*Fisher price ABC, Animal sounds, Body parts apps
 *Picture AAC app(uses pics and my voice to help jojo correlate sounds to objects)
*Using Hand over Hand to initiate activities that he is working on.  I am really hoping this will help with self feeding. 

A fun fine motor activity we did this week was with dry beans and pompoms (the cute colorful small furry balls for crafting) we put all the beans and poms in a big bowl, gave jojo a spoon to use to fill the smaller bowl.  It took him a awhile to not use his hands but he did it!!  He did three scoops n dumps into the bowl.  I am so proud of him.  We are also working more on the hand-over-hand approach to encourage the touch and feel of me helping him and to help him accomplish a task and getting praise.

Bean Bag play/therapy!  This is so cool to play and watch.  Jojo first speech therapist had a bean bag in her office and jojo loved it.  He laid in that thing and just looked at peace. So for his birthday my mom got one for him and he has been having a ball with it.  Now it is used as a sensory relief for him.  we toss the bean bag and he runs full force and crashes into it.  He loves it!!  We do this five times before they start a session to relax the sensory need and it seems to work.


All in all it was a hard week with lots of small hidden treasures that I sometimes have to look really hard to find.  I am going to give the month of October my all and make the most of the craziness that happens with multiple sessions in a week!  More posts soon and I plan to be detailed on the activities and what we are working on so I can help others.

Team JoJo

Side note: Another very interesting thing I heard during therapy was that one of the therapist had recently attended a seminar discussing ASD and she heard an interesting piece on a possible link between autism and the brains use of mirror neurons, basically lacking the proper mirror neuron system.  I found the article online:  I read It completely and its a lot of scientific jargon but ultimately really made me think...could there be a real link to possible RF usage in our homes and ASD?  I think so, its definitely a possibility!

Out of time: A possible link between

mirror neurons, autism and electromagnetic

radiation

Ian M. Thornton

www.ianthornton

Why do I have to "fix" him?

So today has been such a crazy day. One of my "I don't want to do this anymore" days. That's so terrible to admit. But it's true! It's how I felt all day. like all parents I want the best for my children, but I love my different little wonder. I like how he is so content with his helicopter in one hand and his tag from his blanket in the other. He likes to squish himself between the window and the couch, who cares! He lays down to inspect wheels of all sorts, who cares. He flaps his ears, who cares!!!! He walks mostly on his tiptoes,seriously who cares!!

He is who HE is so why do I have to put him through hours of speech, occupational, behavioral, and now they mention physical therapy. It's all so much. It's by no means painful or in any way harming him physically but he is emotionally all over the place now. He isn't sleeping well either. He used to sleep ok, not perfect but doable. Now I'm lucky if he takes an hour nap. He wakes up throughout the night again. And the worst is he is getting sick so much. Third cold/fever/ear infection combo in the last 8 weeks. The therapist have all agreed to hand washing and sanitizing but it's not helping.

I'm obviously having a bad day. I'm tired and overwhelmed. I know I have to give him the best possible future and all of the above is part of the plan but I'm so afraid of making a wrong decision. Of course I want him to have communication skills and be on track developmentally but am I changing who he is? This is all so hard and Oh my I'm am so glad MY therapist is back from vacation because I need my hour of pure venting.

Lifes about to get a little more crazy, is that even possible?

Speech therapy, Occupational therapy, and a Developmental specialist are the usual team that you start out with in the early stages of diagnosis of Autism Spectrum Disorders.  This is now considered the best way to get "things" going.  It was a difficult thing for me to do.  Just taking the first step was hard.  I am now so very glad I did.  From what I have learned I know that a toddler has better chances of improvements with social cues and brain activity if EI (early intervention) is started as soon as deemed appropriate.

 The next step for us was getting a diagnosis and then starting the road to ABA, applied behavioral analysis therapy.  This is pretty intense, 25-40 hour a week in home or center based learning.  This is where we are at now.  We have been approved and are picking providers and being picky about it.  I have decided on a great team to do the HBM (Habilitation Masters Program) this is the person who has to have a masters degree in behavioral analysis that comes to our home and does a 15 hour assessment of behavior and skill level.  They also become the oversight of the particular program that is designed for my Jojo.  I now have to find/interview HAB workers.  These two people will complete TEAM JOJO for the next two years.  So all together he will have a team of 6 plus mom and dad!  The HAB worker part is hard for me because being a homeschooler I really wish family was here that could be trained and help but we just don't have the family available right now.  So I will do my best to find a good match for our family and Jojo. 

Once all this in place things will be tough for awhile but this is the absolute best chance for my son to get to a place where we can all understand him and he can communicate with us.  Someday I just know I will read his favorite book and he will "Moo" back at me, until then I will keep doing the Mooing for him!

I found some great Info on ABA therapy at www.autismspeaks.org

Patience...whats that?

Here's a short glimpse of my last week:  Oct 15-19

Monday: worst "autism-symptomatic" day EVER.  Jojo literally kicked, slapped and head banged everything he could that day.  I still cant figure it out so my best shot at trying to figure a "trigger" is a slice of cheese pizza.  I even took off nearly all the cheese, but I really think it was gluten overload. Gosh even typing that feels so odd, 10 months ago I was the OMG mom..Like omg who goes all gluten free? who buys all organic, who would keep a food diary..who does that? ME!  I have too.  Its the simple little things that cause his stimming (ear flapping, repetitive sounds) and melt downs.  His belly cant digest certain food correctly so he gets pain, real pain.  The sad thing is that its a hit n miss game.  I tend to just stick to what I know but he is now 25 months, he need more of everything ie..protein, fats, minerals, omega3..all the good stuff and I cant even give my boy a banana.  Ok back to my Rant, Monday down right by all means sucked!!  He was really hurting himself.  I tried it all, bear hugging, swaddling (yup YOU try and swaddle a 30lb toddler with the strength of a sumo wrestler) and water play, he took three baths that day just so I could put him down, the last bath, probably for a long time consisted of him trying to roll over face first and eat the tub, yup he don't care that he scares me because, well he doesn't feel scared himself..  ok I will spare you the rest of Monday.

Tuesday:  Therapy day whooo freaking hooo, more stress for the lil guy so I of course get him all dolled up and have my house perfect and then right before session starts, I get a cancellation text.  Ok I can understand we will do what I have been trained to do thus far.  We did some shape sorting, stickers, played with his sensory beans, fed him lunch, and awaited speech therapy, well she came late, but came ready to work!  I really like her style and dedication to my sons journey.  She spent 90 minutes with him and by the end of session I knew how to properly use a DnZ vibe oral motor tool.  Jojo liked this so it gave me a sense of hope for articulation to start once his stimming and sensory stuff calms down.  He even chanted mamamama a few times.  Now even though he doesn't direct them to me, I know my baby means me when he says it, right?

Wednesday:  My therapy day, my hour away to learn coping skills and just talk and vent and a "feel great when I am done" kinda visit.  This went well, the hubby came with me and that was supercool.  we snuck to lunch and just had a great morning.  Looking back, guess now I could properly refer to it as the calm before the storm!!! After we got home the hubby left for work and it just started.  Pure madness, it didn't matter what we did he got pissed.  At one point he pinched my arm and bit my boob so hard im bruised.  I was shocked and sad to the point of crying and just took him to his safe zone (his crib) and laid him down for a quiet time.  He seemed quiet so I told my 15 yr old to keep an ear out while I ran to grab a quick dinner to prepare (at this point something all ready cooked would have been a better idea).  When I got back it was all quiet and then I hear a squawk (yup like a bird) and I run to the room and holy shit balls, he had busted through his crib railing.  It broke the entire heirloom crib.  The frame was cracked and he was sitting on the corner nightstand looking pretty please with himself.  I screamed and cried in absolute disbelief!  How could just a cute lil boy be to strong willed and downright angry?  The night ended with crib torn apart in the garage and his mattress on the floor.

Thursday:  I had my first major, "I don't think I can do this" type of  breakdown.  The crib, the long term care, the therapy being cancelled all just set me into a frenzy.  I felt defeated and like Autism won, it kicked my ass.  I cried for hours though the day it was awful.. my eyes still hurt.  despite the bad day I feel like it was bound to happen and it needed to happen.  I am pissed and hurt that my son has autism.  I am still learning about what it all means.  I read a ton of books and this has probably overloaded my mind with both the good and bad of autism.  I am hoping and praying always for a better day!!

My brother IS different, who cares!

Having a brother or sister with autism is a really hard thing for kids to understand.  Not only is there a new sibling to get used to but there now is this new thing that mom is worried about.  I had a huge reality check the other day.  I was at my local library with the older kids and I always go to the health section to see if I can find any new reads on Autism, well one caught my eye right away.  Its called, "My Brother Is Different." Its written By Barbara Morvay and I freaking love this book!  I read it the night I got it and was so super excited to share it with the kids.  The book is a three part read.  The first part is directed to parents only.  It explains the basics of the book and a small informative section on Autism its self.  The second part is a story of a big brother and little brother.  The little guy has Autism, the big brother is affected by all of it.  He goes on to explain that he feels left out (HELLO, my kids I am SURE feel the same) he feels like he could catch Autism from his brother(how scary) he feels like his mom is always stressed and his dad looks worried.  Oh this hit home three times over.

  Each one of my awesome kiddos needs me.  My teen is a freshman and that's a tough transition and I have to be there for the ups n downs that it brings.  My sweet 9 yr old son is the quiet one who sometimes tries to be too quiet so I don't have to worry about him.  Then my cutie pie daughter, who is 8, tries so hard to help.  At the end of the day, they all need me and Jojo needs ALL of us to be happy together.  I really learned alot from this book and how I can make sure I am taking in to consideration ALL of my kids and family.  Its hard to not always focus on my lil guy, but now I am learning balance.

FROM: My Brother Is Different
 

On a daily basis, families are trying to cope and are bombarded with information.  Yet, there isn’t much out there about the normal child in the household, the child witnessing the family in crisis.

 

This book is NOT about the Autistic child; it offers no theories or magic pills.  Rather, it is a recipe to help families cope with the overwhelming feelings, fears, and everyday life as experienced by their normal child. It will assist the parent with acknowledging fundamental yet painful truths while assisting their normal child cope with the life he or she lives.

www.mybrotherisdifferent.com

A great week, Who knew!

My Boy was HAPPY this week!
Nov. 9, 2012

This week was a great example of hard work and consistency paying off.  I know that day by day things will change for my lil guy but I relish in these good moments!  He is still having some sleep issues but overall, this week just rocked.  We started our week on Sunday with a successful hour at church and then home to decorate our Christmas tree (I know super early but , its a tradition here).  I was really hesitant to keep with the tradition because I thought for sure he was going to tear it down or it would tumble on him, but he did great.  The day before my daughter and I made him a felt tree we saw on www.pinterest.com and it was a perfect way to give him an alternative to play with.

                                        (cant flip it around, darn!!)

He likes the feel of the felt and of course the colors!  We put in on the way just across the room from the Christmas tree, so when he touches the tree I just redirect him to "his" tree.  So far, so good! 

 Tuesday is his long day of DSI and Speech therapy.  He was kinda just in a mood and gave his therapist a run for her money.  By the end of the first session he gave her about 20 minutes of cooperative play.  I was glad he settled and was able to do some of the activities which included:

*playing with LINKS, the simple toys that plug into each other to form a chain, this is great for fine motor.

*reading a book with flaps, this is Jojo's absolute favorite kind of book.

*worked on signing Our goal words are still:  Milk, More, Apple, Cookie, all done  He has signed milk    and  more but not too consistently.

Then his speech therapy started and he went nuts.  He was really not having it at all.  As soon as she came in he threw his head back and started pounding his ears and screaming.  I knew we were in for it.  So we did a swinging exercise to calm him and is semi-worked.  She decided to update me on some apps for the IPAD, and before we knew it this is what Jojo was doing:

Yup he just fell asleep.  I was actually pretty happy about it. To me it showed personality and a defiance, which I never seen before.  These days I take what I can get and make the most of it!  She spent the rest of our time chatting with me and giving me some great ideas and introducing a IPAD PECS system. We are considering using it but, its "another" thing I will have to be super consistent with so I want to be sure its something I can do.
Here's the ideas and things we did:

*Went over Ipad app;  Picture AAC (photo pec system)
*using vowel sounds for Jojo to mimic"ahhhhh" "oooooo" "eeeeee"
*pointing, touching, and saying everything to him

OT this week was just FUN, He loved it and so did I.  He did a fun art project using tissue gift wrap and a paper plate.  We put glue on the plate all randomly and then gave him pieces of the tissue.  He crumbled it up and LOVED the sound and feel, then he put the pieces on the glue area.  It came out so cute and he even put stickers on it.  We worked on the brushing techniques and he was really receptive to it.  She is ordering me a brush so I can do it through out the week and use it for a calming/sensory relief.  We also talked about swinging to replace the need to spin.  I looked into "swings" and found out that the Graco Silhouette swing holds up to 35 lbs!  I was able to find one tonight and he tried it out, it was nothing but giggles and then he had to try and figure out how it swings, LOVE my lil guy! 

It was just a nice week, so very thankful I am!