Autism Diagnosis-How Our World Changes Daily
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.
It's been a while since I've written any updates. We have been busy getting transitioned from Early Intervention Services to Preschool Services through our local school district. Meetings upon meetings, paperwork, and forms that needed filled out and submitted. Evaluations that needed to be done and recommendations for the best way to proceed to ensure Mr. T. gets all the required services and needs for his Individualized Education Plan.
Anyone that has children in school, knows how much goes into registering and enrolling your child in school. When you have a special needs child, it almost triples. Not only do you need immunization records, but you need diagnostic tests and records, lab results, dental and vision screenings, observations from the various specialists that have worked with you and your child and what seems like miles of questions that only you, the parent or caregiver, can answer. Is this necessary? Absolutely. You know your child the best. Of course, you can also be blind to the needs of your student if you are in denial about what you think they need and what they truly need. Don't sugarcoat it. It won't help them. In the long run, any parent I know, including myself, wants only the very best for our child/grandchild. We want them to succeed beyond our wildest imaginations!
Learning terms like the difference between an IEP and a 504 plan. Securing the correct documentation and sharing with each other is the best way to determine the needs of the child. If you find yourself in this situation, make sure, prior to the meeting, that you write a Parent Concern Letter. Through my months of research in understanding how the system works, I had read how important it was to have your concerns written down so they would be addressed.
I kept planning to write the parent concern letter, but then I realized, the night before our scheduled IEP meeting, I had failed to submit that to the school district. I woke up in the middle of the night, or the wee hours of the morning (3:30 a.m.) and sat down to type my concerns up and then, four pages later, I attached this letter to an email and fired it off to the IEP team members. I wasn't sure if they would receive it in time or not, so I printed a copy and placed in Tyson's IEP Binder.
Even though it was last minute, his teacher and speech therapist, took the cues from Parent Concern Letter to write his IEP. We are very fortunate to be in the school district we are in. I urge you to make sure you make your concerns known, in writing. That way you have a record of them.
In our letter, I wrote our concerns for his elopement risks, how he communicates with our family and how he responds to new situations. I wrote down the things he knows and the things we are currently working on with him and what causes him to meltdown or go into panic mode.
I realized that they have no basis to go on for Tyson since this will be his first interaction with outsiders for school purposes. I am his baseline. They were very thankful to have this information. They agreed since they had not had a chance to work with him, this gave them valuable information that they otherwise would not have known.
So, while I am learning all the vocabulary that comes with Special Education and IEPs, 504 plans and what it means to be in an integrated classroom, Tyson seems to be picking up new words each week. Right now, it is easy to keep track of the words he knows and the signs he has learned to communicate with us. Visual supports still play a role, but now he is using his voice too!
A year ago, if someone had told me that he would be sharing his world with voice, signs, and PECS, I would never have believed it! He is the most amazing young child I know. He is determined. He can be very stubborn. He doesn't give up. He is learning there are many ways to accomplish a task. He is also learning that bad behavior, such as hitting and throwing objects will get him in timeout. We do not reward bad behaviors, but we also work with him to help him understand that breaking things and hitting people are not nice. This is a typical behavior or most children this age and with everything, it is a learning process.
The next project I will be working on with Tyson is learning that the school bus is his friend. Our City Recreation Center will be having an event in June where children can "touch a truck". There will be standard EMS/Fire vehicles, school buses and other trucks used in the community available for children to climb in and on so they understand not to be afraid of these larger than life vehicles. Right now, he has an affinity for school buses. The world inside the house comes to a halt when a school bus is on our street, he runs to the door when he hears the bus brakes and looks out with such glee and claps. I hope that joy remains with him when it's time for him to board his first bus in the fall.
If you want to find a better way to keep track of all your forms, parent notices, drafts and final IEP, go to www.understood.org and once there you can download templates and forms to set up your own IEP binder. This was a lifesaver for me. I took the Binder to the meeting and had everything I needed, totally organized. If the school needed information from me, it was easily accessible.
Thank you for following alongside us on this journey. This is just the beginning of a new adventure!
Blessings from me and Mr. T!
I am so excited for Mr. T. He recently had preschool screenings and evaluations done and has been approved for Special Education Preschool Services. I look forward to seeing how well he will do with other children as he learns new things. His biggest challenges are communication and social skills, while his cognitive skills are average with neurotypical children his age. This is no surprise as this is very common with children on the Spectrum. In two weeks, his mother and I will meet with the Preschool Team to write up his IEP and this is where I am looking for advice
With Tyson being a flight risk, I know that we will want to make sure he has a 1:1 aide, but beyond that, I am not sure exactly what things we should ask for to support his goals. He isn't potty trained and so the school agrees they will work on that with us and him. He is a sensory seeker and avoider depending on what it is.
I have never been involved in an IEP so I know it is very detailed. I just want to make sure we ask for everything and don't leave something out that is of importance. I am hoping if you read this, you will have suggestions for us or if you know of a website that we can visit to show us sample IEP's. Tyson and I are reaching out to all of you that have walked this road before us.
His word count is up to 26 words, 8 signs and of course, the PECS are still part of his communication tools. He is still considered non-verbal. He has so much to learn, but we have every confidence in our school system and the educators and staff and most of all our special guy!
Please feel free to comment. Thanks! Blessings to you!