Autism Diagnosis-How Our World Changes Daily
It's late here, and I really should be heading to dreamland, but before I do, I wanted to give everyone an update.
Preschool has been so great for Tyson. He loves it so much, that on days when he doesn't have school, you will see him wearing his backpack and looking out the front door, waiting on his bus. It's extremely difficult for him to understand why other buses pass the house on Friday as he waits for a bus that never comes. He only attends M-TH, but I know if he could he would go on Friday's as well. Even on mornings, which are rare and few, and he is still a little groggy, all we have to do is mention the school bus and he jumps up and his ready to start his day!
His vocabulary has taken off, and now he is even putting two words, and sometimes three together to get his point across. I love, love, love this! Earlier this evening, as he was requesting something, he signed, please and want, and as I scooped him up in my lap, I said, "can you use your voice to ask me please?" I said the word several times and then as I placed my forefinger on my lip to show him how our mouth opens and lowers, for that ending S sound, he mimicked me and tried it. After a few attempts, he was able to say it, not the pl but it comes out sounding like prees. I'll take it. Out of the blue last week, I gave him something he asked for and he responded 'ank you."
This grandma is thanking Jesus for the words that are spilling out of him. Most words are not phonetically correct, but for a boy that was diagnosed nonverbal a little over a year ago, these words are magic to our ears.
Tyson is a sensory seeker more than an avoider. And
now his new sensory thing is sliding down the stairs and saying woah woah and laughing. I am not fond of this activity because he could tumble down and get hurt, but he is fast and if we can't get a hold of him, he is already headed down and back up again.
Going down on his bottom is much better than going down feet first on his belly. For him, it's that vestibular input he needs and it calms his spirit, it freaks mine out!
Every day, after school, I ask a series of questions, because I want to hear about his day, but the questions have to be yes or no questions. It usually takes a
while but he is worth it! I have learned that he loves to paint and I have multiple paintings hanging in my office, proudly displayed. He is learning that playdoh and moonsand won't hurt him and sitting for "circle time" isn't so bad. His teacher sees
improvement every day. In a few weeks, they will be going on their very first field trip to Young's Jersey Dairy Farm. A great local place to see animals, have some delicious food and learn all at the same time. They will be going to a pumpkin patch and having
ice cream. I know his mom is excited to be going with him as they both love this place already!
Prior to school starting, he developed a seizure disorder. He has gone through a battery of medical testing, EEG and MRI and when we left the hospital last week, he had his medical armband on, and it is still on. He will not let us remove it. I am not sure how long he will wear it, but it's his "bracelet" and if we even ask him about taking it off, he cries, says no repeatedly and runs and hides. So for now, he wins. Having a meltdown because we are going to take away his "bracelet" is not worth it. All of us learn to pick our battles with every child, special needs or not.
We won't know any definitive results of the EEG/MRI until his followup appointment, but we do have a seizure plan in place and emergency meds that can be given to stop the seizure if it progresses for over three minutes. I am thankful that when the seizure started, he was asleep and doesn't have any recollection of it, that we are aware.
He is so expressive and loving. He is such a joy in our lives and a blessing. I am learning there are many ways to communicate without saying a word!
If anyone you know suffers from seizure disorders and you need more information, or simply want to educate yourself, head on over to www.epilepsy.com and get the facts. Everyone should be aware of what are myths and facts. You never know when you will encounter someone in life that has this problem. The first way to understand and be compassionate, it to be educated.
If you want to know more about vestibular and proprioceptive input and how it relates to someone with a sensory processing disorder, follow this link which is a great resource. www.saensorylife.com
Thanks for stopping by! Blessings from me and Mr. T.
Earlier this week, Tyson started Preschool. When he was first diagnosed in July of 2016, I wasn't sure he would be able to attend preschool with other children in a public school setting. As many of you may remember when we received the diagnosis, it really wasn't a surprise to us, we had thought for many months that he did have Autism Spectrum Disorder, but getting his pediatrician to believe that or getting a referral for services was extremely difficult. Thankfully, we did find a pediatrician that shared our concerns and referrals were given and we were finally able to start helping him receive services that would get him to where he is today.
He only had two words that he spoke. Ma and Da. He couldn't keep eye contact for more than a few seconds and he didn't fare well around strangers or too many people in one space. He trusted very few people, including aunts and uncles, simply because they weren't part of his everyday routine.
If our friends visited the house, he would run and hide or bury his head in my shoulder and cling on for dear life. He still tends to hide when people come over to the house until he realizes they are friends and then he is okay with interacting with them.
He has come so far in the last year. We have seen so much growth in his tiny personality and thanks to early intervention specialists in our area, he has learned how to communicate with spoken words, sign language and PECS (picture exchange communication system). He now interacts and engages with others and for the most part, he is a very happy toddler. He doesn't speak in sentences, but he is talking and that is a huge win for him!
He has been doing speech therapy at our local Children's hospital for 13 months, having speech therapists and developmental specialist through PACE (Parent and Child Enrichment program) and The Play Project (www.playproject.org) come into our home in an environment that is familiar and safe to him. He has learned to communicate what he wants by asking for it with signing the words please, want, more and showing us a picture, pointing to whatever it may be or using a word along with the sign. There are still times that we have to guess what he wants, his words aren't all clear or he may use part of a word. For example, when he says how we know he isn't asking a question, we know he is saying house. And I know because I spend the majority of time with him, I understand when he will say "B", he isn't referring to a letter of the alphabet, he is referring to something being the color blue.
Over the last year, I have learned how important it is for all of us to know what Autism is and what it is not. There are so many people that think if a person on the spectrum is not flapping their hands or having an uncontrollable outburst or being overly aggressive, then it can't possibly be autism. People tried to tell us, he will talk, some children are just slower than others, that doesn't mean he is autistic. And I am not disagreeing, there are many neurotypical children that develop speech later in life than their peers. However, it does upset me, when people say, "he doesn't look like he has autism". My thoughts are usually unspoken, but I think to myself "what does that mean?" or "what does a person with autism look like?". Autism doesn't define Tyson, it's just a part of who he is, much like someone that suffers from a hidden illness, such as depression or anxiety. Labels are good for diagnosis and getting treatments, but labeling someone because they are different is wrong.
For over the last year we have been preparing Tyson for going to school and ultimately preparing him to have a successful life, however, he chooses. For Tyson, routine and structure are so very important. If we deviate from his normal routine, it can throw him into a tailspin. In order for him to be ready to go to school, he would have to go to bed a lot earlier than he was used to and get up super early for him. It would require planning and prayers that he would be able to continue to function without a meltdown. Every day, I would tell him, pretty soon you are going to be going to school and riding the bus. He knew what a school bus was because we had taken him to explore one. We would drive by the school and say, "look, there's your school, that's where the bus will bring you so you can play and learn" and make new friends! And he would get excited having no idea what school was.
On a wall, in our "gated community" (the family room of our home), he has pictures of objects he likes, the alphabet and numbers one through ten, drawings and scribbles he has made. I call this his learning wall. We are always incorporating learning into everything we do with him. Repetition is key, in my opinion. When he is learning a new word or sign, it is repeated at least three times each time we use it and there is so much that can be done with simple objects. He loves building things with his blocks. We count with the blocks, we talk about colors, we group the colors together, we match blocks and work on sequences, he learns to take turns and the list goes on.
A week prior to preschool starting, we visited the school to see his classroom and meet his teacher. At first, he was very reluctant to go into the building, he stopped dead in his tracks and dropped to the ground, requiring my daughter to pick him up and carry him in the building. Once we were in the hallway, she put him down and said let's go see your classroom, encouraging him to walk alongside with her. As we passed windows, that led to the playground area, he wanted to go play. He LOVES swinging and sliding. When we arrived at his classroom, he peered inside, but again, there were several people gathered at the door and he retreated behind his mom. As we coaxed him in the room, with his supplies in hand for the year, his teacher got down on his level and with a smile and a tone in her voice that says "I've missed you, it's so great to see you" she talked to him, he was at ease right away and then he spotted a wall of books and toys and anything you can imagine would be in a preschool classroom. His eyes couldn't scan the room fast enough and then his teacher told him to go on, he could go play. That was all it took. He let go of his mom and he was off and running. By him equating school and bus to this location, that helped him better than any picture we could have used. Because Tyson is a very visual person, this would be something he would remember.
As last Monday approached, every day, we would talk about school starting and then the school district decided to postpone preschool and start on Tuesday due to the Solar Eclipse of 2017. All day Monday, he walked around the house with his backpack on and kept saying "ool" (which is his word for school), he would see school buses dropping older children off in the neighborhood and become excited as he looked through the glass on the door. Telling him he was going to school tomorrow, he would walk away from the door head hanging low.
He woke up with enthusiasm and we started our new routine. As he was getting dressed and having breakfast, he kept saying ool, ool and we smiled. Children are so innocent and tend not to worry if everything will be okay. I had worried a year ago that school would not be something he would be able to do and I am so glad I was wrong. He loves it. His teacher reported on the second day that he is a very social individual in their tiny class of 6 students. And hearing he is very social is great to hear. He likes riding the bus, but not getting on the bus. I think it's because those steps leading onto the bus seem so huge to his small frame. But that's ok, the bus driver gets out of his seat, carries Tyson up the steps to his seat and the bus aide makes sure he is strapped in and ready to go.And there were no tears the first day, I was so excited and overjoyed, watching his reaction, that I knew he was ready. He will go four days a week in the mornings and the day he is not in school, he will continue to do his speech therapy and in home play therapy.
A year ago a diagnosis that overwhelmed us, concerned us, worried us and yes, even in some ways grieved us. We weren't sure what to expect or how well he would learn or understand or if he would ever speak. He now is armed with a vocabulary of 40 words, 10 signs and each day, there are new sounds coming from him that will turn into words. He is still considered non-verbal because he isn't able to communicate with everyone, but a year ago he only had two words. Someday, that nonverbal label will fall off, but until it does, we will continue to love him regardless and we will continue to teach him daily in our home and at school and church.
If you are reading this right now and you know someone or you yourself have received an Autism diagnosis please know there is hope.Go to www.autismspeaks.org and request their 100 Day Kit. It was the most valuable tool in a list of many that helped me wade through all the aspects of autism and what to expect. Hard copies of this book are available to families of newly diagnosed individuals and can be purchased by others. You also have the option to download the book, in its entirety to your device. Visit www.nationalautismassociation.org and they can connect you with resources or lead you to resources in your area.
Autism does not define a person. It is a part of who they are. They are still the same people that you loved before the diagnosis. #differentnotless
Blessings until next time,
Me and Mr. T
It has been a year and two days since Tyson was diagnosed with Autism Spectrum Disorder. In the last year, we have been through many appointments, home visits and several different therapies.
Every week, for 30 minutes, once a week, he spends time with his wonderful speech therapist and he has went from having little to no eye contact to holding his gaze and learning how to take turns and has gained 32 words. This is so amazing to me, because at the beginning of our journey, after the diagnosis, he only had 2 words.
He has learned a routine, each week with his therapy and as we wait in the waiting room, he is starting to finally not be afraid of other people in the wait area. As soon as his therapist comes out to get him, he crawls under a chair or table and she has to coax him out to go to "work". We used to go back with him and observe his time with the therapist, but about a few months back, we decided along with this wonderful lady, that he was ready to go it alone. By using this approach, he is learning to trust others and not rely soley on me or his other family members that accompany him to his appointments.
It is my hope by doing this, when it comes time for him to starrt preschool next month, he will be independent enough to know we wouldn't let him go with just anyone. If we do go back to observe now, there is a routine. He leads us back to the therapy room and we wait in the hall, while he sits down in his chair and then we proceed to go in the room. If he refuses to sit in his chair, we return to the waiting area. I am so proud of him.
He has learned to follow directions. Most of the time. As with any three-year-old, he has his own moments of selective hearing. When he is asked to put his toys away at home, we use a five count method. We have him look at us and as we tell him what to do, we count to five, slowly. If he is still reluctant to pick up the toys, we count to five one more time. If he still refuses, we pick up the items and they are taken away for one day. Usually, as we start to count to five the second time, he is rushing to pick the items up and put them away.
When he starts school, he will have to follow directions, so we try to use simple tools to help him learn.
When he is upset or mad, because he doesn't get his way or throws himself on the floor, we acknowledge that Tyson is mad. And we tell him it's okay to be mad, but we don't throw things and when he is done being mad, we will try again.
He still jumps and loves anything and everything that spins, including himself. The problem with allowing him to play with fidget spinners is he can get stuck on that, so he is allowed to play with them for limited time frames.
There are still times we have to remind him that if he wants to jump, he needs to use his trampoline and not the furniture, but he has gotten better at gaining control of sensory overloading. He will cover his ears, crawl up on my lap and as we shut down the lights, tv, we will play soothing music.
Some days we still have no idea what he is requesting, but thanks to the combination of signs, visual supports and words, and gestures we can usually figure it out.
A year ago, I had no idea what we were in for. There is so much that is still unknown about autistic behavior and every person is different.
Every day there is something new. Every day we thank God that he blessed our family with this joyous little guy. He loves to laugh and giggle and only usually cries when he doesn't feel well or doesn't get his way and when he is really tired.
He just stopped what he was doing to wave to me and say "Hi!"
If you are new to facing diagnosis or have been walking this path for quite some time, please know you are not alone. Join online groups where you can get support, advice and love.
It does and can wear you out taking care of any child, but taking care of a special needs child can change your life dramatically. When people offer to help, take it. In order to be the best parent, grandparent, caregiver to anyone on the spectrum, you have to care for yourself too.
Our next step for Tyson, will be working on Potty Training and continuing to help him communicate better and better each day. He lets us know when his pull up needs changed, but he doesn't understand the concept of using the Potty Chair. So if you have any tips or tricks, please let me know.
As always, thanks for stopping by and may God Bless You and yours!
Last Saturday, we took Tyson to an event at one of our local schools, called "Touch A Truck". There were fire trucks, police cars, K-9 vehicles, swat vans, an ambulance, dump trucks, farm vehicles, bucket trucks, food trucks and several school buses. Each year the City of Kettering (Ohio) holds this event twice a year, so parents and children can climb in or on these vehicles and be familiar with them, as well as learn about them and their purposes.
I was so excited to hear about this event because Tyson loves school buses. Every time he sees one on our street, he runs to the door, jumping up and down and clapping, saying "Yay or wow!"
Since he will be starting preschool this fall, he will be riding a school bus to and from school and we wanted to make sure he would even step on the bus, much less ride it. Because he is a preschooler, he will have a five point harness on while he is on the bus, much like a car seat.
When we arrived at the event, he was so excited, he pointed to the fire truck, so we walked over and stood in line, waiting our turn, but when it came time to get in the truck, he would have no part of that. We took him to the rear of the truck and he was willing to stand on the back where the fire hoses are stored. He loved it!
He did not care for the sirens being blasted from the police cars, and I had to agree with him, I didn't care for the noises either. We continued on looking at all the vehicles.
His most favorite were no surprise-the school bus. My husband took him on the bus and they sat in seats and he even opened a window so Tyson could wave to me! He wanted to go up and down the stairs multiple times and it was hard to get him away from it! I only hope his enthusiasm continues when he realizes he will be getting on the bus by himself and we will not be riding with him.
His word list grows every week and he's learning numbers slowly, He is definitely a very visual person and loves watching learning videos on the YouTube Kids app, plus his favorite show, Paw Patrol!
The one thing I have learned since starting this journey is keeping track of documentation about Tyson's care is so very important. No matter how detail oriented you are, without a Care Binder or I've heard it referred to as a Medical Care Notebook, there is no better way to keep track of all tests, physicians, specialists, therapies, and treatments.
As with anything, setting up the binder depends on your special needs person and what their medical care or early intervention looks like.
I am constantly adding tabbed dividers to simplify it more than I originally had set it up.
The supplies I have used consisted of a three-ring binder with a clear plastic cover over the front of the binder, for insertion of a picture of Tyson and 5 tabbed dividers with pockets. I need to get a few more because new categories need to be added. Invest in a good three hole punch and a stapler, you won't be sorry.
The tabbed dividers need to be labeled efficiently so you can find what you need when asked by providers.
At the front of the binder, before using the tabs, there is an All About Me Child's Page with fill in blanks.
My name is:______________
I was born on:_________________
I have ____brothers and ____sisters.
My nickname is:__________________
With a current picture on this page. I try to update it every 6 months.
Directly after that page is an appointment log and a blank calendar template that can be copied and filled in as needed.
The first tabbed divider says Medical and then there are blank sheets between the tabs that are labeled with Diagnosis, Evaluations, Therapists and Physicians, Tests/Lab Work, Procedures, Medication List for OTC (over the counter) and prescriptions. At some point, I may purchase more dividers and do away with the paper dividers, but for now, this is working for us.
The second tabbed divider has a place for Important Information: Phone Communication Logs, handouts received from a physician, therapy appointments, Health Insurance info, Official documents (copies only) of Child's Birth Certificate, Social Security Card, Guardianship/Probate/ Court/Custody Records. If a Power of Attorney is used, make sure you have that as well. There is also a family information sheet that lists information for a quick glance with his info, his parent/guardian info, and an emergency contact.
The third tabbed divider is dedicated to PACE (which is an Early Intervention Program he was involved in) PACE stands for Parent and Child Enrichment Program. This program was for newborns to age three. All documentation from home visits are recorded and copies are kept in the notebook.
The fourth tabbed divider is dedicated to HMGBF (another Early Intervention program he was involved in) HMGBF stands for Help Me Grow Brighter Futures. All documentations and IFSP, Individual Family Service Plans are located in this section.
The fifth tabbed divider is for PLAY PROJECT documentation. This organization also does home visits and records and goals are noted and kept.
As you can imagine, his Care Binder is quite full, but I will not remove the documents to make space. I will make Care Binder #2 and as many as we need. Having the documentation and after visit summaries from appointments shows me how much progress he is making as well as all contact information I might need. I need to break down the tabbed dividers some more, but as you are well aware when you have a special needs person in the home, finding time to do everything that is needed is sometimes quite difficult. It is still a learning process Make no mistake, though, having this care binder, is the best advice I was ever given.
I have had to refer to the binder at appointments when a physician asks about tests that an outside organization might have done. It was so nice for me to locate the report and allow them to make a photocopy, instead of going through the process of signing a medical release, contacting the other provider and asking for records to be sent or faxed.
You can set this up however you like, but I wanted to give you an idea how I did it. I also have used sheet protectors for documentation that needs to stand the test of time, such as diagnosis and evaluations. It is entirely up to you and your preferences.
Keep track of your communication with providers by keeping a log of who you spoke with, brief details of the conversation, date and time and any changes that have occurred. This really helps if a conflict arises, because then you have the documentation you need, instead of guessing who you spoke with and about the details.
Last but not least, keep a zippered pouch at the front of your binder with markers, pens, highlighters, and paper clips, sticky notes. You never know when you might need to jot down a note or highlight something you are given.
As I said before, Care Notebooks are just as special
as the person they are about. Each person has different special needs, therefore tabbed dividers will vary.
You may be the type of person that keeps track of everything online, and that is fine, but keep your paper records in a file box or somewhere safe, you might need them.
A new binder has been initiated for Tyson. Now he has his Care Notebook and his IEP Binder. Keeping the IEP in the Care Notebook wasn't working for me; I am aware that some people keep that in there too.
Record keeping should be a priority for all of us, regardless of our needs, but I am learning how important record keeping is when you have a child in the home with Autism Spectrum Disorder.
Thanks for stopping by. Until next time, blessings from me and Mr. T.