It's not the terrible two's

We get this a lot "it's just a phase, he'll get over it" or "it's a case of the terrible two's." No, it's not a phase, no it's not a case of the terrible two's. My son's have Autism. My youngest son needs routine, he needs his daily life to be the same, and to be comfortable for him. H has a mild form of Aspergers, his is more just ticks, quirks, and the constant need for facts and information. X on the other hand having PDD-NOS has what the doctor described as a "moderate to severe" form of Autism. Each month, it progresses, the sensory issues heighten, the need for routine gets more set in stone. His limited vocabulary forces him to get frustrated often, scream, cry, melt down.

We can't just plan out to a T our day (except for therapy sessions). We can't plan out a trip and it happen the way we'd hope for it to. A lot of factors go into planning for a trip away from home, away from X's element. Pack his dinosaurs, his pillow, his lights, his radio, medication, milk, the foods he's currently okay with eating, pedisure for the days he refuses to eat, his iPad, tagless shirts, etc. The list goes on and on. I swear we pack everything but his bed. 

One thing that family and friends are having trouble realizing and understanding is that we can't just up and travel all over the state like you could with neurotypical children. When we get to where we're going, whether it be my parents house or my husband's mother's house, or even a friends house; we don't go out all over the place visiting every single person we know. It is more of a "if you want to see us, come see us." One huge challenge we've dealt with is the understanding we need people to have about this issue. We've made it a point to rotate houses of who we see, and even that seems to be a challenge and more like a stress fest. 

People who have not educated themselves about Autism, and what it entails don't understand the sensory issues. Lights are brighter, sounds are louder, crowded places become very overwhelming. All (or most) of their senses are heightened. A glitch in his daily routine is the end of the world for him. For my son, it's harder to process, becomes too much, and then a melt down begins. Do we enjoy hearing him scream and melt down? No. We try to create scenarios where he's comfortable and saves everyone's ears from ringing. We can't please everyone, we've tried, and it's exhausting, and at this point, we're done.

Now that we're moving farther away from family, trips back to Texas will be once a  year, if that. It's time for people to come see us if they really want to. It's time for the once or twice a month trips to Texas to end and be done with. 

For a better understanding to the routine that Xavier needs in his days, refer to this post. I hope then it sheds more light on this issue. We are in the process of moving from the south to the north, a car ride that will take about 3 to 4 days to complete. In this move, we're preparing ourselves for a massive amount of melt downs, but I don't think anyone can fully prepare for them. 

Halloween

As I sit for hours on end waiting for X's therapy sessions to end, I keep thinking "I need to blog about..." I decide to blog, get home, and life gets hectic. 

Yesterday at therapy the kids were able to wear their Halloween costumes. At first, X didn't want to wear his at all. We are still trying to get him to transition smoothly from the car, to therapy. It's still a battle, but I'm confident we will get there one day. As we were waiting for him to go back, a set of twins came in wearing their costumes. At that point, X looked at me and pointed to himself, I asked if he wanted to finally put his costume on and he nodded yes. We ran to the car, suited him up, and he came into the building roaring at everyone. He was the cutest dinosaur I've ever laid eyes on! 

During his sessions, the therapists took each child door to door of the other therapists to help them understand trick or treating. The center he goes do deals with special needs children, and doing this helps the children grasp a concept of what they'll be doing on Halloween night. I thought it was really neat and he seemed to have enjoyed it. 

H came home from school complaining of a sore throat and he felt pretty warm, but he sure was okay to go trick or treating! ;) For dinner we had sandwiches, fresh fruit, veggies, and hummus. Might as well start off the night with a healthy dinner before the candy raid begins. 

We got the children dressed and ready to go, we decided we'd check out the base chapel who held a trunk or treat. It turned out being a bust, so we opted to stay on the main part of base housing and trick or treat. After realizing that only 5 houses on one block was participating, we hurried back to the other side of base to let the kids trick or treat in our neighborhood where there were tons of houses participating. 

H and N had a blast going door to door. H is more reserved and with him not feeling well, he wasn't as talkative; wait I take that back... he told us everything he knew about each piece of candy he received. X on the other hand wanted nothing to do with trick or treating, not one bit. He decided to run the streets roaring as loud as his little voice would let him, not paying any mind to anyone near him. 

Usually we let the kids pick out about 15 pieces of candy, and then my husband takes the rest of it to work (we don't keep candy in our house). Since we kind of ate up time trying to get to a decent place for them to trick or treat, they each got around 20 pieces in their so we decided to just let them keep it. I also heard about a candy called UNREAL where it's all natural, no preservatives, no dyes, etc. so I figured after I get done at H's psychologist appointment I'd run by CVS and grab a few for X since he didn't get any. 

It's been a few weeks... I know

I realize I'm about to come up on a month of not posting. I know, I'm sorry. Life in our house never slows down, with constant therapy appointments for X, school events for H & N, gym time, and family days. Sometimes I wonder if I'm getting any sleep at all, I go to sleep and then wake up in what feels like 1 hour later.

Right now, our family is in the process of requesting an EFMP move out of where we currently live. EFMP stands for Exceptional Family Member Program in the military, where family members who need special care outside a general family doctor, is placed in the program. It helps when you're getting ready to PCS to another duty station for the gaining duty station to be able to know what services you're needing, and if they can accommodate them. If they can't, you'll be assigned to a base that can accommodate you. The base we are currently at does not have adequate services for our sons, which is why we requested to move before our time here is up. We've gone through the entire process, now we're just waiting for orders. I was not born with a patience gene, so this is driving me nuts.

Any who, X just started ABA therapy for the first time yesterday and the therapist said he had a blast. He was at the center for 4 hours yesterday and after he was done, we were both just beat! The good thing is, ever since he started up his OT, he's progressed from flipping out when he had to go back into the room, to walking with his therapist with a smile on his face. It takes just one less stressor off of me, when he goes back happy as a lark.

H is currently doing social therapy until all of his medical referrals are in and sent to us. I'm starting to wonder if they're waiting to do those until we move. It's been a while and we have yet to hear anything. H goes to a psychologist who has a group of boys his age who all have Aspergers and they gain help and knowledge on how to interact with other kids socially without it being awkward. I'm not too sure on how well it's going, since H seems to still be soft spoken, so bad that half the time I can't hear him. When we ask him to speak up, he yells, gets frustrated, and stops. I'll have to write a post on when we learned of H having Aspergers and how we suspected it.

For now though, I need to end this post, as I have a dinosaur (*ahem* X) shaking his tail at me and roaring at me. Have a wonderful week!

Typical dinosaur days

X needs routine, he needs his mornings to be Dinosaur Train mornings, he needs his afternoons to be Dinosaur Train days, and he needs his evenings tucked into his dinosaur bed, with his dinosaur stuffed animal, in his dinosaur pajamas. 

I can't remember how long ago it was that we introduced Dinosaur Train into X's life, but I guarantee you if he could talk like kids his age, he'd recite every episode. I'm getting to the point where I can recite them. X's days start off with sending his brother and sister to school on the bus. We then walk home and he either eats cereal (which is really just a joke, because he's stopped eating cereal, but I make it for him because if I don't then he's mad) or he will eat some pancakes. He has his sippy cup of milk clutched in his hand just drinking away and fully absorbed into Dinosaur Train. Buddy from DT sings a song about being a Tyrannosaurus Rex, and at the end, he roars as loud as he can; perfect timing every time, X tilts his head back and closes his eyes, as if for one moment he's Buddy, and says "ROOOOOOAAAAARRRRRRRR." Then he sits and breathes in every second of his beloved Dinosaur Train. 

Tuesday through Wednesday, we'll go to Occupational and Speech Therapy (we haven't started ABA yet, still waiting on that) so his dino time is interrupted, and then we come home. I make him lunch and he either opts not to eat, or will nibble here and there. X no longer takes naps, instead he runs circles in the house, or will fight with his toys, or give extra lovin's to the cat. Bless our cat, she's SO sweet and just lets X hug her till his heart is warm. I think she secretly loves it. ;) Come dinner time, it's a hit and miss with X. He will either eat or will have nothing to do with dinner and run circles around the table. Bath time is another ordeal, he use to LOVE bath time but here lately he doesn't want his hair washed/touched in bath time and screams and cries every time. 

Bed time, oh bed time, why must you be so difficult. It takes about an hour to two hours to put X down. He'll go down, then get up and come peek into the living room, give us a little shit eating grin, and then laugh at us. Then you know the drill.... wash, rinse, repeat. He has to sleep with his iPod (well it was my husband's, but it's now in X's room so it's his), his iPod plays Rock A Bye Baby and then he has a turtle that projects stars into the wall/ceiling. This is the only way X will go to sleep. If one of these factors are not on, he's not sleeping.

X really has a huge obsession with dinosaurs, and it's so cute. He has these dinosaur nose masks that he likes to wear on his face. The other day I went to the BX to mail off a package and he was wearing his dino mask and we kept getting strange looks. I'm use to it now, either we get strange looks for his melt downs, or him wearing rain boots in the middle of summer without it raining that day, headphones on his head in the store, or his dino mask. I should gather up his dinos and take a picture and just add it to this post later. Today I went to change his diaper, and he finally realized that mickey is on his diaper. He was not happy about this at all. He started roaring at me pointing to Mickey, and then ran into the hall closet, shut the door, cried and roared. I got up, held him in my arms while he roared and cried and bit me, until he passed out on my shoulder. 

At the end of the day, we all go to bed exhausted, only to wake up and do it all over again. It's our life, and it's how it was meant to be.

Tests, tests, and more tests...

After going to X's 18 month check up (which was actually his 20 month), we were told that he was fine, but because he was non verbal, we could go to Early Intervention Services that is offered by the state if we wanted. Typically when they do their check ups as a kid, you fill out a form to state milestones to make sure your child is on track developmentally. This was not the case, there was a form to fill out, but I was not asked the questions, the doctor took it upon herself to fill out for me.

After his appointment in March 2012, I called Early Intervention Services to set up an appointment to apply for speech therapy services. About a week later they came out and did an evaluation to see if we qualified for services at all. At this point I'm wondering why they're even doing the evaluation, when it's quite obvious, but it's the rules, and we all have to follow them. After just the speech evaluation she stated that he qualified and that in two weeks we would have an appointment with the speech therapist. I had asked if the speech therapist could do an Autism evaluation on him, just to rule that out. Luckily she had the screener test on her and said that at 18mo they are actually required to offer it to the parents. Some parents don't want it done, they don't want to know if their child is Autistic or not, it's too much for them to deal with and they'd rather just not test. For us, it was a more of wanting to know "okay if he is, this is how we can handle him, this is the route we need to take with his care." After taking the test, he scored high risk and she then stated we could self refer ourselves to a child psychologist for further testing. We also started with speech therapy, which to this day is still a slow process. There is hope at the end of the tunnel, but it's going to be a long tunnel to get through.

Come April 2012, we finally got into a child psychologist and began the testing phase. From the initial meeting, she stated she could already see traits. We then scheduled a testing date which was a week later. The testing process took several hours, and I felt as if it would never end. Test after test, question after question, many which were repetitive, it finally ended; only to be told we had 6 more tests to take home and have filled out by outside sources, so that the answers were not just from us, we had others who had been around X to give input.

The day after X turned 2 in July 2012, we finally had our meeting. In this meeting only my husband and I were allowed to go in, this was to keep any distractions from the kids, so that we could focus solely on what this report had to offer. The report is 18 pages long, it started from history of birth, family members, what they did on the tests, results from each test, and so on. For those that know me, I was never blessed with a patience gene. For some reason my DNA felt as if I did not need patience in my genetic make-up. On page 10, read the words "Autism diagnosis". I sat there staring at the words, not really shocked because after all the research we've done on our own we actually expected it. I teared up, but not out of sadness or anger, but out of relief of everything I've held in for so long since this process started. She kept asking us over and over if we were okay, if we were upset, and each time we'd tell her "we're okay and we're not upset. We're relieved and we now understand and can now move forward with treatment, therapies, and ways to better his life that is suited to him." Lets face it, would we be sad or upset if he had Downs Syndrome? No. Would we be sad or upset if he was blind, deaf, missing limbs, etc.? No. Why? Because this is who HE is, this is what makes X the funny little boy that he is. He doesn't need to be like everyone else, he doesn't need to be the "norm" of society. Everyone is different, and everyone has, for a lack of better word, flaws.

After having the meeting when we found out his diagnosis, we then set up meetings to get him enrolled in the Exceptional Family Member Program that the military has to offer. We had a meeting with his pediatrician, you know, the one who said he was just fine. Well as she's filling out the forms, she looks at me and says "Autism is a phase, he'll be over this in a year." At that point I'm seeing red, because I'd like to know where she got her training from and where Autism is a phase and not a medical issue. Since then we've changed doctors and things are going smoothly now. X is now going to speech therapy 3 times a week, Occupational Therapy 2 times a week, and is about to start up ABA therapy that I was told is several hours a week. Add in our son who just received an Aspergers diagnosis, and that'll make for a TON of doctor visits.

I wouldn't have our life any other way.

And so we begin

I've started this blog as a therapeutic release of my daily dealings with Autism, but also as a way for our family and friends to have an insight as to what we deal with daily.

Maybe I should take things back to day one, or maybe I should just give a brief summary of how our lives ended up here, and then make the day one post a separate post??? I think for now, I'll begin with how we got here, and go from there, that way I don't divulge in everything right now, and be left with nothing to post for a while, ha!

I would have never had my children tested for Autism, had my dad not mentioned to me back in January 2012 if I had ever considered having my youngest, X (who is 2), tested for Autism. I say that, because in the 29 years I've been around, I've only seen and known my dad to take an aspirin twice. He fights out a cold, toughs out pain, and moves on his day; he's not one to mention something if he didn't find any reason to. I took X to his 18 month check up, more like a 20 month check up since I was late in getting him in; we were referred to Early Intervention for his lack of speech but was told everything else was fine (that's a whole other blog post, because everything was not fine). After months of testing he received an Autism diagnosis of moderate PDD-NOS. Among the testing we noticed several of the questions/red flags also pertained to my oldest son, H (who is 8). The psychologist said she would want to test H just to rule it out. Sure enough, this past Wednesday he too received an Autism diagnosis of Aspergers.

So here we are, a family of 5, my husband is currently in the Air Force and I stay at home tending to the multiple therapy appointments that X currently receives and that H will soon begin receiving as well. We also have a daughter who also starts with H, so I'll use another initial so it doesn't get confusing. N is 6 and the biggest girlie girl I know, she and I are out numbered by the men in the house, but that just means more mommy/daughter dates. Feel free to save our blog site, as I'll be writing daily posts (or as daily as it can get in this busy house) about how things are going, more on the testing processes, therapy, and day to day living.

Just know, we do not see this as a prison sentence for our children. We fully embrace it, it is who they are and we wouldn't have it any other way.