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.

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Ten Things

This has been sort of rough weekend. Even though I knew Ryan had some developmental delays and I had suspicions since December that he was exhibiting some autistic behavior, it’s still hard to process. It’s hard for me to wrap my brain around everything. No longer is the battle waging if  I’m just that paranoid.  This weekend, I have come to realize that I am control freak. I like to be in control. When something is wrong, I want to fix it. I consider myself to be solution oriented. I don’t like to dwell on problems, I just want to figure how the best solution to fix it. It’s been sobering to realize that this is probably not going to be in my control to fix. I consider myself a “mature” Christian, but even still, God is reminding me that He is in control and not I. I fear that is something that I will always struggle with in my Christian walk. I can do nothing but leave Ryan is God’s hand and to parent Ryan the best way I can. Since Ryan’s conception I always prayed these verses:

Psalm 139

13 For it was You who created my inward parts;
You knit me together in my mother’s womb.
14 I will praise You
because I have been remarkably and wonderfully made.
Your works are wonderful,
and I know this very well.
15 My bones were not hidden from You
when I was made in secret,
when I was formed in the depths of the earth.
16 Your eyes saw me when I was formless;
all my days were written in Your book and planned
before a single one of them began.

After having Kaylen early, I struggled with enjoying each moment of pregnancy knowing full well that pregnancy doesn’t always turn out how you expect. Again, I couldn’t control my pregnancy, but these verses gave me a sense of peace that God had planned each of Ryan’s days before they had begun. It has/always will be His plan. As I work through my emotions this weekend, my mind keeps going back these verses. For as many times as I have to, I’m going to keep giving Ryan over to God.

I have spent a part of this weekend spending researching autism. I had research it briefly before, but I didn’t want to spend much time researching because I didn’t want to be analyzing Ryan’s every behavior and trying to draw a connection to autism. Now knowing that he has some red flags, I want to know more so that I can prepare myself for what to expect, things to look out for, and what we can do for Ryan to help him thrive. I keep noticing this weekend how much Ryan licks objects-like he is constantly licking our TV, tables, toys, etc.   It was interesting to find that can be a sign of autism. My first concerns with Ryan happened when I was told on a few separate occasions by different people that Ryan doesn’t really interact with other kids – that he tends to always be by himself and play alone. Couple that with the fact that his speech is delayed, he doesn’t point, he is extremely fascinated with wheels (objects that will spin), and he stares off into space quite frequently, there are some legitimate concerns for autism. As a side note, I’m still not 100% convinced or going to label Ryan as autistic, but I don’t think it is going to help Ryan if I bury my head in the sand and pretend like this might not be a very real reality for him. I am so glad that I did trust my instincts because everything that I have been reading says Early Invention is extremely helpful. Ryan’s next appointment is this Friday. I came across this powerful article and I just felt compelled to share. The one article alone gave me so much insight more that a lot of other articles I was reading.

Keep praying for Ryan and for us as we begin this journey-whether it ultimately leads us to the fact that it is Autism or that we truly just have a stubborn child on our hands that just needs more time-we do need the prayers! On a positive note, Ryan finally FINALLY, said and signed more! It brought tears to my eyes!

Ten Things Every Child with Autism Wishes You Knew

http://www.autismspeaks.org/family-services/tool-kits/100-day-kit/ten-things-every-child-autism-wishes-you-knew

Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute – the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult. Autism was once thought an “incurable” disorder, but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood. Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly – every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.

Here are ten things every child with autism wishes you knew:

I am first and foremost a child. I have autism. I am not primarily “autistic.” My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about. As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?

My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me: My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Music whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously nauseated. Because I am visually oriented (see more on this below), this may be my first sense to become over-stimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing — the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.

Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “Jamie really burned up the track,” I see a kid playing with matches. Please just tell me “Jamie ran very fast.” Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong. Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

Because language is so difficult for me, I am very visually oriented. Please show m how to do something rather than just tell me. And please be prepared to show me many times. Lots of consistent repetition helps me learn. A visual schedule is extre helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, and helps me manage my time and meet your expectations. I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.

Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to do most things.

Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included. I do best in structured play activities that have a clear beginning and end. I don’t know how to “read” facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?”

Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums, or whatever you want to call them, are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log, noting times, settings, people, activities. A pattern may emerge. Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment. Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders, and gastrointestinal problems can all have profound effects on behavior.

Love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t she…..” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it. And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh. They had autism too. The answer to Alzheimer’s, the enigma of extraterrestrial life — what future achievements from today’s children with autism, children like me, lie ahead? All that I might become won’t happen without you as my foundation. Be my advocate, be my friend, and we’ll see just how far I can go.

©2005 Ellen Notbohm