A Piece of the Puzzle

autism heartAs many of you know, Ryan was a part of an Early Intervention program since he was about 2 years old. The first initial evaluation, I was told that he had some “red flags” for Autism. We were concerned about speech, but inwardly, I had some suspicions if the was displaying some signs of Autism. His Early Intervention therapy was extremely beneficial. As his parents, we learned new ways of working with Ryan. In addition to a speech therapist coming about 3 times a month, he was also able to attend a Sensory Pre-K Class. By the end of 2012, Ryan was finally beginning to say two word phases. He made huge leaps and bounds in his speech. He also started pointing. I had actually started to convince myself that maybe he was “normal” (for whatever “normal” means) but as 2013 continued on, some of his behavior became increasingly worse. Trying to get him into the Early Intervention program in North Dakota, proved difficult for us. Mostly because he was bordering on turning three and they didn’t seem to think it would be beneficial to enroll him since he wouldn’t qualify for services after three. His speech was improving every month and trying to get settled into our life here in North Dakota things became hectic.. months started to slip by and after seeing some behaviors worsening, I decided I couldn’t put off getting him into some kind of program or getting him evaluated. At this point, I was tired. Tired of the constant battle in my head and wondering if he was autistic-was I making it all up, did I just spoil him too much (I have heard this comment more than once), was it just a “phase” like most people would tell me and he would just grow out of it? I mean after all, he looks “normal.” I’m not sure what most people envision Autistic children as – but for some reason, I can’t help but think that people think Autistic children spend more of their time sitting in corner, flapping their arms, drooling all over them self having no kind of communication with other people. I just didn’t want the constant battle of wondering, so I set out on a mission to get a professional diagnosis done for him. I was also prompted to seek out a diagnosis because it was proving difficult to get services started in rural North Dakota. I knew that once I had the diagnosis, services would start to open up for him. So, I called about every number I could find on google relating to Autism Services in North Dakota. I talked to several different people and left several voice mails. Calling Minot State University proved the most helpful. They were able to get me in contact with Special Ed services in our county and they also told me about the Anne Carlsen Center in Jamestown, North Dakota. This was probably around the end of June, so with summer break, there wasn’t anything the Special Ed Services could do immediately since most were on their summer break. After contemplating whether or not go with public diagnosis services or with a private one (and posting on an autism group which would be preferred-which 100% said private would be the way to go), I decided to have his professional diagnosis done at the Anne Carlsen Center (a privately run center). Fortunately, they offer their Autism Clinic free of charge.

On Monday, we made the almost four hour drive down to Jamestown and spent the night at the hotel. His appointment was at 8 in the morning, and I just couldn’t see making the drive in the wee hours of the morning. We walked in and had to sign in, Ryan immediately went into melt down mode when I wouldn’t let him run up the stairs. He began to scream. I signed him in and then I heard someone say from behind me, “This must be Ryan.” I was a little embarrassed thinking they had known it was him because of the melt down he was having (but in hindsight, I am quite sure they were waiting for us to take us back to the evaluation room). As soon as they opened the door, there were four more people in the room around a table. I was taken a little off guard, because for some reason, I thought we would be given time to settle down and then everyone would come in. They introduced themselves and began the evaluation process and starting observing Ryan. They would ask us questions from time to time and sometimes get us involved with Ryan. I was pretty impressed with Ryan’s behavior. After a while, he warmed up to a lot of the ladies. The first part, they brought out toys and would ask him to complete certain tasks. They had a bubble machine which he loved and did not forget about even after they hid it from him so he could focus on something else 🙂 . Then they took him to a sensory play room. The most notable time spent in there was when Ryan was in the ball pit. He would lay so still and he was just about covered in the colorful, plastic balls. The first time, he just laid there which seemed to be for minutes (I’m sure it wasn’t). Then, I asked him if he was sleeping and he started to snore, and then I prompted him a few times to “Wake Up” and he finally popped up out of the balls. He repeated this several times. At one point, he asked to take his clothes off, which they allowed us to do. So, then he was running around in the play room in only his diaper. It was cute! Then back to the evaluation room for a few more play scenarios. Then, they asked us to leave while they discussed Ryan. About an hour later, they asked us to return.

His diagnosis was done using the DSM-V. With the introduction of DSM-V, they changed some of the criteria and also do not diagnose as PPD-NOS, Autism, or Aspergers.  Now, there is only Autism Spectrum Disorder with three different levels: level 1, requiring support; level 2, requiring substantial support; and level 3, requiring very substantial support. They walked us through the DSM-V and their answers. At the end, it was blatantly obvious that he is Autistic and there was nothing borderline about the diagnosis. His official diagnosis is he has Autism Spectrum Disorder, Level 2. They said with the old standards, he would have been diagnosed with Autism and that as he got older they would have continued to evaluate him with a possible diagnosis of Aspergers. They said, Ryan is extremely bright and full of potential. He definitely is very interested in learning how things work and wouldn’t be surprised if one day he invented something. In all the evaluation they have done, not one kid had shown interest in a chair lift in the play room. Ryan did and he was not satisfied with giving it a once look over. He had to move all the parts on it and see how it worked. Of course, I wasn’t surprised. Ryan is extremely bright, very inquisitive, and ALWAYS trying to figure out how things work.

So what now? Nothing really that I wasn’t already doing or wanting to do. His diagnosis doesn’t really change a thing or who Ryan is. It just helps us know how to better help him and get him the services he needs. I will never let Ryan be defined by Autism – it is simply helps explains why he may do certain things. I don’t expect anything less out of him or out of us as his parents. I’m going to keep being an advocate for my son and bring out the best in him as anyone parent would do for their child – autistic or not.

I’m still sorting out all of my feelings. I did not cry when they told me. I had already known in my heart. However, on the ride home, I did feel like crying sometimes, but no tears fell. I can’t help but wonder what long term this means. Will he be able to have meaningful relationships? Will he learn to be compassionate? I hope so, but I know I need to concentrate on the here and now. I think it will take a few days to fully sort out all of my feelings.

Our next step is following up with an already schedule appointment in early September to set up local services for Ryan. Also, finding a pediatrician for Ryan where so that he can get an official referral for occupational therapy (OT) services. He will also most like continue to speech therapy.

I love my little Ryan and I’m very thankful that I listened to my mommy instincts and continued to seek out help for him. All research shows that early intervention is extremely beneficial it helping with the long term aspects. I’m still excited to see what his future holds and who he will become.


Ryan-16 Weeks

Ryan will be exactly 16 weeks tomorrow and I truly have no idea where the time has gone. So much so that yesterday when I counted the weeks on the calender since his birth and it was 16 weeks – I thought there was no way he could be 16 weeks and after some thought, I decided to pull out a spreadsheet and make sure I was counting correctly. And, I was. Yep. He’s four months. A quarter of his first year of life – gone. His newborn days are truly over – which is very bittersweet. Today, we had his four month check up. He weighed in at 13 lbs 7 oz and is 23 1/2 inches long. He is in the 50th percentile for four months old which is pretty good considering he’s seven weeks premature – so he really would be like nine weeks if he was born on his expected due date. I asked the doctor if he was was more like a two month old baby or a four month old baby and the doctor said he is like a four month old baby. However, I think he’s not fully caught up just yet. He hasn’t rolled over yet, but he’s gotten pretty close one time. He is lifting up his head and can pretty much support the weight of his head. We recently started sitting him in his bumbo chair and he can tolerate sitting in it for short period of times before he can’t hold his head up. He was a champ when it came to getting his shot today. He only cried between the time the nurse stuck in needle in to the time I could pick him up – so less than 30 seconds. He smiles a lot now. He started smiling around 12 weeks for small spurts, but now when you give him attention, he will give you a smile. He coos a lot now too. I tell Ryan, “Love You” and he will respond with “A Goo.” He just melts my hearts – especially with all the smiles and cooing. He now also responds to his big sister Kaylen and will smile at her lovingly. Kaylen is such a good big sister to him as well. She always trying to help him – give him his binky and blanket and try to rock him as well. She gives him several unprompted kisses throughout the day. To my worry though, he seems to be a thumb sucker. We haven’t been able to find a pacifer yet that he seems to like as much as his thumb. I just worry about breaking of him of it later. The pacifer you can take away – you can’t chop off his thumb! However, we are very happy with Ryan’s development and still feel very thankful that he hasn’t presented any other major heatlh concerns given his prematurity. I am in a state of shock that he is 16 weeks old. It just doesn’t seem possible. IT REALLY DOES NOT SEEM POSSIBLE. But, it is. *BIG SIGH* I just love these baby days and I just know it’s all going to be over too soon!