How autism looks for us

 I've been wanting to write this post for awhile, but have become very busy. This happens when we move, and I get pregnant, and do more at work. I just checked and realized I haven't posted for a few months, so some updates on us.\

Flynn got diagnosed with autism about 1 month ago. We weren't really surprised, and we are happy to have the diagnosis. It actually helps put a lot of his behaviors and actions into perspective.

If Flynn is left alone in his room, he head bangs. What that means is that he goes onto his hands and knees, rocks, and hits his head on the door repeatedly. We believe he does this because he does not like to be left alone. This happens about three times a day. First thing in the morning, once he wakes up, before Tim is ready for the boys to be out of their rooms. Secondly, when he is put down for a nap in the afternoon. Lastly is when he is put down for bed at night. If Preston is awake, he goes to play with Flynn in the morning. During the other two times, he has to be alone, otherwise he won't rest. We have tried stopping him in various ways, disciplining him, but none of that works. We are currently in the process of making a mat to cover his door. This will be a combination of yoga mats and straps. Hopefully, it will cushion the impact. We are also having him work with therapists at Pediaplex for this.

He likes to play, but prefers to play alone, but within site of others. He tends to either find a toy to attach on one of his fingers, or shoves the toy into his mouth. He really likes to bite and chew. Thankfully, he doesn't often try to bite others, unless he gets really excited or angry.

We are starting to get some improvement with conversation, and this is due to sign language. He is able to sign, "more", "food", "water", "want" and "all done". I know it's not much, but it's something. We, and his therapists, are still working with him to give us "yes" and "no" in the form of head movements.

He also does attempt to make noises more frequently than before. He tends to do this with jumping, especially when he's excited. He never seems to tire from jumping.

He enjoys being hugged or held, but only for as long as he wants it to be. This is the same with reading. If you catch him in the right mood, he will allow you to read.

Flynn should be starting ABA therapy in a couple of months. This will be a half day therapy, every day during the week. They will be working with him on speech, eating, sitting, and other useful skills. Preston has been learning how to better understand his brother, and how to play the way Flynn wants to play. I am thankful that we have more answers and plans for the future.

Sensory Processing Disorder

 We still have yet to get a formal diagnosis for Flynnie. However, we are working off of a possible disorder, that Flynn seems to match pretty well.

First, some terms that need to be understood:

Sensory Integration: is the neurological process that refers to the organization and interpretation of sensory stimulation from the environment. Sensory integration occurs in the central nervous system (brain, spinal cord, and nerves). The process occurs automatically as the body gathers information through the skin, muscles, joints, inner ear, eyes, nose, and mouth.

Sensory Processing Disorder: Problems in the way the brain takes in and responds to information from the environment and one's own senses. This results in problems in processing information and behavior appropriately for the task at hand. Children with this disorder often have a brain that experiences difficulty with adjusting to or regulating responses to sensory inputs. The child either does not react strongly enough or reacts too strongly to sensory input from the environment.

Sensory Seeker: craves excessive stimulation from one or more of the sensory systems (touch, visual, auditory, movement and balance, body awareness, taste, and smell). The child seeks out more stimulation than other children. These children are viewed by others as risk takers and are often in constant motion.

Characteristics of a sensory seeker:

• Spinning
• Climbing too high-no fear
• Climbing on everything
• Crashing into things (people, furniture, walls)
• Mouthing/licking objects (furniture, toys, body)
• Chewing on non-food objects (toys, clothing)
• Eating excessively - craving oral stimulation
• Constantly wrestling or rough housing with siblings and peers
• Touches everything
• Playing with food
• Messy eater
• Over-stuffing their mouth when eating
• Craves spicy and hot foods
• Under-responding to pain (shakes it off quickly)
• Makes a big mess when playing - dumps out toy bins to look at everything
• Engaging in excessive sensory play - seeks it out (mud, water, soap, etc)
• Constantly jumping around
• Frequently pushing others - has difficulty standing in line
• Running barefoot
• Difficulty sitting still
• Falls out of their chair for no apparent reason
• Seeks out loud noises - turns up TV/radio, places battery operated toys against ears, etc
• May have difficulty regulating their volume level - talk loudly
• May hum or talk out loud to self

This explains a bunch of Flynnie's behaviors: how he screams, jumps, bites everything, puts all things in his mouth, does his exercising, and over eats a lot. 

We have been learning how to work with Flynn to help him with his need for excessive stimulation. We give him a toy to help him focus. We read to him, and give him bear hugs. We also have him roll on a ball to help him focus and give a bunch of stimulation to his body. We also try calming music at night to help him relax. We know that this is a work in progress, but at least now, we understand a bit more of why he acts the way he does. We are better learning to enter his world. 

Fatherhood

Today, I reflect one three fathers: Terry Harbison, Ray Brown, and Tim Harbison.

Terry and Kathi started dating 40 years ago. Kathi kept in contact with Terry during his mission, and got married shortly after he returned from serving in Spain. They were married in 1984, and had their first son, Eric, in 1985. Four years later, they had Tim, the man I married. They later had two other boys, Kenny and Chris, all of which are now married with children of their own. Terry was active in his church callings, through The Church of Jesus Christ of Latter Day Saints. His various callings included: a member of the Bishopric, High Priest group leader, and primary teacher. His true passion was teaching, and he taught for about 6 years. He taught government and economics, and history. Terry would take Kathi to summer musicals, and they frequently would go to the Arboretum for walks. He was diagnosed with frontal temporal dementia in 2015. He retired from teaching, and spent a couple of years at home with Kathi after his diagnosis. He later got moved to Golden Acres Nursing Home. Terry enjoyed visitors, and was able to see his children, siblings, and mother frequently. He loved his grandchildren, and tried to play with Preston and Flynn whenever he was capable of doing that. On Sunday, the family got the call that he was not doing well, so many of us visited him to say our good-byes. On Tuesday, he was diagnosed with COVID-19. Today, on Thursday, he went home to return to live with his savior, Jesus Christ.

Raymond Brown was born on July 23. Today, he turns 63 years old. He has been an amazing father to me, and has taught me so much about being an amazing parent. He has always, and will always, be a great cheerleader for me. He has gone to all of my track meets, concerts, and even traveled to Rwanda to enjoy a new land with me. I have loved traveling with my family to many locations through the years. My dad worked for a long time as an electrical and systems engineer for BAE Systems. Since leaving his job as an engineer, he is now working more on hiking, running, and volunteering. He does an amazing job with Preston and Flynn.

Tim is the third father I would like to mention. He learned how to be a father early on in our marriage. He was meant to be a father; it is truly something that he excels at, that he was made to be. He has patience, more so than I have, and is a great teacher to our boys. He is very kind and sincere. I can see all of the love in him.

Updates on Flynn

Let me start off this one by saying that we do not have a diagnosis, other than your generic "developmental delay". We had Flynn evaluated by a pediatric neurologist, who checked his growth, his reflexes, and then said, "it's probably autism", and wanted to order an EEG and an MRI. He didn't actually do any testing on him. We then looked into getting Flynn tested for autism, and learned that the majority of places that do autism testing do not perform the tests until the children are at least 3 years old. Flynn is 2 years and 4 months. We did find one location that does testing prior to age 3, however the reviews and what they were telling us did not sound good, so we have decided to wait.

Here are some of the new things that Flynn has been doing:

• Pointing more (with books, toys, and once at an animal at the zoo)
• Chatting more (B, D, M)
• Focusing longer (he is really good at getting your attention, and holding your face in place while he investigates)
• Interested in books
• Improvement climbing stairs
• He is responding to commands more. He responds to, "come here", "stop", or if you call his name, he will more likely look at you.

We even got a progress note from his occupational therapist this week:

"Today we practiced: bilateral integration, visual motor, motor planning, hand/upper extremity strength, manual dexterity, upper extremity coordination, and vestibular/proprioceptive input.

Today I: participated and finished my work, used good listening skills.

Flynn was able to tolerate sitting on the platform swing for ~5 minutes during the motor activities for vestibular input. He was able to independently pull apart large pop beads 3 times and able to push them together 1 time, and required physical assist for the other trials. Flynn required physical assistance to imitate vertical lines to improve pre-writing skills. He was able to roll a ball back and forth with a partner with some physical assistance required to improve joint attention and bilateral coordination. Good job, Flynn!"

We are very proud for the progress that Flynn continues to show.

Second Wave of COVID-19

So, what we thought was going to happen in the winter is now happening in the summer. The second wave of COVID has started to hit. We are starting to see more and more cases of COVID. This is a mixture of a few things. We now have the capability of testing more individuals, both those who are symptomatic and asymptomatic. We are starting to have more folks in the hospital. However, there are still some positives. We are seeing fewer and fewer deaths.

What does this mean for Texas? We are now having mandated mask wearing in the public sphere. We are bringing down the capacity of businesses from 75% to 50%. But what if we don't like wearing masks? Folks may find them uncomfortable, itchy, difficulty breathing, etc. Would you want surgeons to not wear masks when they are operating on you? No, you want them to do all the extra precautions so you do not get sick. Okay, but I have asthma, and I cannot breathe with the masks on. Alright, well, this physician as well has asthma, and I have become adjusted to it over the past 3 months. Everyone can get used to wearing things that are uncomfortable. Technically, underwear, shoes, are all uncomfortable, but we have become socialized to follow this. We can still not shame folks that do not agree with us. For me, I will wear a mask in public, but I will not yell at those who do not wear masks. If I am concerned about someone who isn't wearing a mask, I will kindly ask them to socially distance. I will not shun or yell at them.

I am still spending time with friends and family. I am actually really excited to go to church this week. My church has divided the church body into 6 groups and has only some of us together at once. We will be wearing masks, sitting in separate pews, not singing, no handshakes or hugs. But, it is worthwhile. Being a part of a group again, spending time together, even if it is small. It is like being a part of the body of Christ. Even though it is every 6 weeks, I am so glad to be back at church, and to see my friends again.

We will make through this, together.

Week 3 of Therapy and Overcoming Depression

Flynnie has both made progress and had issues over this past week.

In therapy, they have recommended that he works on imitation. For example, if we are playing with cars, and roll it, we should make noise, and have him try to roll the cars with us. They also recommended that we sing songs with him, especially ones with hand motions. The ones that Flynn prefers are "Baby Shark" and "The Wheels on the Bus". We also need to work on getting him to focus, to have him watch us and work directly with us for extended periods of time. This is very difficult, especially given that Flynn loves to be mobile and always be on the move. They recommend that we do more story time, more drawing, and get him to sit with us. They say that he has improved with pointing and that he has become very good at puzzles, and that he figures them out quickly.

This week, we took Flynn and Preston out to the splash pad. We believe that a day or so prior to that, Flynn must have gotten into some poison ivy. He has had a worsening, spreading rash over his body. We have been applying hydrocortisone cream, benadryl cream, and calamine lotion. We were able to get him some oral prednisolone, which will also help with his rash. Flynn has been doing well with the rash, it only bothers him every once in a while.

On overcoming depression, it has been a hard time. I have had many good moments and many bad moments as well. I learned more about myself over this time. I have learned more about the importance of medication. How medication can be useful for stabilizing people. How depression is a real thing, feeling numb, feeling all the emotions at once, they can all occur. But, I was able to keep moving forward. I had the support of my wonderful husband, of my amazing family. I kept trying, knowing that each day could possibly get better. And eventually, it did. I have been able to smile, been able to laugh, been able to enjoying my time again. This does not mean that I'll be good forever. What this does mean, is that I know what to do the next time I struggle. I know that struggling is important. It allows me to overcome, to become stronger, and keep on moving. Moving towards the future, with God leading the way.

Week 2 of Therapy

We have been working with Flynn for just over a week now. Tim was able to go in during the therapy session with him today, thanks to having someone watch Preston. 

Occupational Therapy:

Flynn is working on his pincer grasp, which is the motion of having one's thumb and index finger go together. This is the position that your hand goes to hold a pen or a pencil. He has also been working on putting toys that can be attached together and pulling them apart. He has shown a lot of improvement on jumping. He also needs to work on pointing at objects with one finger as opposed to his entire hand. 

Speech Therapy:

Currently, they are not concerned with a possible tongue tie. Tongue movements are significantly used for producing the L&T sounds. Those sounds are not commonly used at his age. However, today I did notice that Flynn was "ta-ta"ing at me. Flynn also needs to work on improving his length of focusing. He, like most children, can only pay attention for a short period of time before losing interest. He started working on identifying objects and items on flashcards, which he is getting right about half of the time. This is where his lack of focus is really playing a part. Flynn is also working on colors, especially ones that start with "B", like blue, brown, and black, because that is one of the sounds that he is working on.

We are going to try to have one of us, either me or Tim, visit the therapy appointments about every other week. That will allow us to learn from the therapists, and to allow Flynnie to have one-on-one time as well.