Addison

After months of ignoring this project, I have finally got myself back here again to write for both myself, Addison and for all of you dealing with similiar situations.

Addison was diagnosed with Autsim in March 2011. To get to that point though, I need to start at the beginning. Addison was baby C, born 5 lbs 10 oz and breech. She was pretty fiesty from the start, but when it came to sleeping and eating, she rocked it. No issues with either. She really enjoyed being held though, so she was definitely one of the three that demanded attention. As milestones went, she was pretty average usually being the 2nd triplet meeting most of them. She did roll over first though, which we were surprised by since Jordan had always taken over most of the other physical milestones first.

When Addison was learning to walk she had such a personality. She'd wiggle when you'd ask her to dance and laugh and make eye contact. Around a year old she was babbling, using small words like "dada" and signing "more". Around 18 months old she was using words like "side" for outside and "sing" for "swing". It was sometime around 18 months that I notice a few quirky ways (later I'd realize these were the starts of stims for her). Addie would sit on her knees and rock while watching her favorite DVDs. Sometimes she'd make small moaning noises or squeal and flap her hands in front of her. We thought it was cute. We had no idea that it was a red flag we needed to pay attention to.

It was also during this same time that Jordan was starting his long road to being diagnosed. Little did we know that we should also be concerned with Addison. So, while Jordan was being examined and tested and started speech therapy with Birth to 3 program, Addison was slowly regressing. It was finally our therapists at Birth to 3 that mentioned Addison to us. They asked us if we'd like them to evaluate her as well for services. I had noticed she wasn't really adding anything to her vocabulary, but it wasn't until Birth to 3 mentioned she had lost her words that I actually took notice.

The next few months Addison continued to regress, not using verbals at all and turning to moaning and whining when she needed or wanted something. She was also fixated on textures and touching/licking any and all objects she could. We joked about her licking tree trunks and wanting to touch puddles. We had no idea that these were again- red flags for Autism.

Finally- after months of waiting and wondering with Jordan- I attended his ADOS (diagnosis) test and it hit me like a ton of bricks. Addison was also going to be on the spectrum. Up until that point, I really thought Addie was just stubborn (lack of eye contact with most people) and shy. I really didn't "get it" until Jordan was diagnosed and I was given real answers. I think this is my one complaint as a parent of children on the spectrum. I felt that so many specialists, therapists, and experts knew my kids were on the spectrum, but couldn't indicate that to me. I know that they all had to wait for the official diagnosis. I know its all political and they need to do things correctly. I just felt like I was let in on a secret way after the fact. I would've preferred to have been told from day one and been hurt then having to go months being so oblivious or niave to it all.

Since Addison's diagnosis, she too has started ABA in-home therapy and works with a handful of wonderful women 6 days a week. She really seems to enjoy her time with them and has made huge strides in talking, eye contact and pretend play. She's learned to not need to moan or whine as much and can use a handful of words to communicate with us. She's even labeling a lot of the letters of the alphabet, too! We (Scott & I) couldn't me more proud of our kids. I can't imagine going to school like they do at 2 1/2 years old!

Jordan's Journey

I think I need to start with the signs we saw with Jordan that had us begin to push for answers. Jordan was a great baby, he slept well and didn't say much. He would cry when he was hungry or needed his diaper changed, but otherwise really enjoyed time looking at his toys and was okay on his own. He was the baby that if one wasn't going to be held (we only have two arms), he would be fine in his buzzy chair. He wasn't stand-offish at all and although he was a rigid kid and still is (strong and stiff physically), he would always let you hold him or cuddle with him without a fight or complaint. Today at age 2 1/2, he is very affectionate and loves being cuddled. I know some children with Autism will not want that affection from others.

At 18 months old, we went in for our routine well visit and all three were screened for Autism. At that time, only Jordan failed the test, but we were told not to worry that he was a preemie and a multiple and will catch up. I left that appointment feeling something wasn't right and decided to ask our early intervention therapists what they thought. It was with their knowledge and a few more calls that I began getting him additional testing. The signs that our therapists said seemed like "red flags" to them included his lack of eye contact, lack of pretend play (not interested in playing on the phone, in the toy kitchen, with babies or stuffed animals) and the start of what they referred to as self stimming. Self stimulating or "stimming" I've learned can vary drastically from child to child. Jordan started his stimming by spinning wheels on toy cars (instead of wanting to play with them) and my Tupperware tops. This started around 12 months and I didn't think much of it. Around 18 months he began a new stim, by laying on his stomach doing what looked like a modified push up or what our therapist refer to as a reverse crunch. He would do this for as long as we'd let him almost going into a trance and not paying attention to you if you tried to stop him. Which leads to another sign for us. Not turning or looking when someone called his name or said "hey look!". Pre-therapy, you could not get his attention by using either his name or a phrase to spark his interest. It was as if he was in his own little world.

At this point, I was concerned that he could have Autism but to be honest with you, I figured he wouldn't be diagnosed and that we'd just start doing more therapy to get him through his delays and quirks. I kept thinking about all of the milestones he hit first before his siblings. He stood first, walked first, and really stood out from the trio in all things physical. The only area he really seemed behind in at this point was his speech.

Our next step was to get him in to see a developmental specialist to get their opinion on the situation. To do this, I contacted our regular pediatrician (who we did the Autism screening with) who told us to hold off until he was 2 years old, because they cannot diagnose before then. I wasn't sure what to think, so after talking to a few friends (some who have experience with Autism) I decided to contact the developmental specialist myself. I did and told the receptionist that my son had failed the initial screening and that I'd like him to be seen by this specialist. She told me there was a wait to get in to see him, but that she'd send me a packet to fill out and get back to her so something could be scheduled. Let me tell you, this was just the beginning of many, many forms I've had to fill out! If you thought signing your mortgage was painful, you'll be having nightmares after a few weeks of this.

After we got the paperwork in, Jordan was scheduled to see the specialist for October. I'm not sure if it was a coincidence or if it was planned but that just happened to be the month he turned the magic age of 2. At the initial evaluation, Jordan was observed while I answered a slew of questions about his behavior and development. When the appointment ended, I was told that Jordan seemed to be making a lot of strides the past few weeks and that he'd like to schedule the official Autism diagnosis test (ADOS) for January both to give him time to continue to develop and because there was that long of a wait for the test.

During those 3 months, I watched Jordan start to talk and begin some pretend play. I was excited for him thinking that it was a phase he had just gone through. I honestly didn't think about him being diagnosed at all up until the week the test was scheduled. At that point, I made myself start to think about him possibly being on the spectrum again, but I really figured he'd fly through the test and we'd be done with it.

Well, that was not the case. In fact- at the exam, Jordan was not interested in anything the specialist was doing. After each section, the doctor would stop to write notes and it would be very obvious that Jordan had done nothing they were looking for. At the end of the exam, the specialist said he would see me the following week to go over the results. I then simply said, "Its pretty obvious that he failed the exam, am I right?" In that moment, the specialist looked me in the eyes and couldn't hide his answer. He just nodded and said we'd talk next week.

There were no surprises at the results appointment. Jordan was diagnosed with an Autism Spectrum disorder. Since the diagnosis, Jordan has started an in-home therapy ABA program and been showing large strides and improvements.

Party of Five

You may know us. You may not. Either way, I decided it was time to give you details about our lives. We are a family of five. A family that only three short years ago was simply a husband and wife. We had tried for three long years (ironic, isn't it?) to get pregnant when we were blessed with triplets.

The road to our triplets was a long one, but the road with our triplets is where is gets interesting. Not a day goes by that I think "wow, now that was a boring day". From the day our triplets entered the world, our lives have been turned upside down. We've learned to live with only 45 minutes of sleep a night (I know what you are thinking, oh I remember when my baby slept only 45 minutes at a time...ummm- no I mean literally we got only 45 minutes of sleep TOTAL in a night!), being able to feed three babies at once with only two hands, changing three diapers within 5 minutes of being awake and learning to make space for three at once on your lap.

I know what some of you with multiples are thinking. Yeah, its tough. I remember how hard those days are. Well, let me throw you another curve ball. Autism. I know, its a scary word. Its a word that parents don't want to hear and hate to say out loud. Its something I need to tell you about though, because if you are even wondering if your child could be on the spectrum then you need to hear what I have to say. My plan with this blog is to get the details of my kids lives with Autism out there. I want other parents to hear exactly what we went through to get diagnosed and what happened after that.

Autism effects 1 in 110 children and 1 in 70 boys. Early detection is key and can make a huge difference in the child's life (and the lives around them) that it effects. I hope that by starting this blog, I can help just one other parent get an early diagnosis for their child.