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.