So why have I been off the grid, so to speak. We went through the whole Covid thing. First my sons father got it, and because our son spent time with him, we were all made to quarantine. We were all vaccinated but he still got it. Ugh! Gotta love Covid.
During the quarantine, I had had to do Google Classroom with Jacob. Jacob does not do well with the online learning, so the fight was on, to get him to do it.
I, myself have not been feeling well. I had a much needed procedure that had to put off until the quarantine is over. I had to reschedule twice. I finally had the procedure and now I am recovering nicely. With other stuff such as taking care of my brother(who is sick with liver disease and now type 2 diabietes), time just got away. But I am now back and have so many awesome ideas.
I am looking into doing a few videos with my first born,Jayden. Jayden is a sign language interpreter. So in my interview we will be discussing the difference between ASL sign and Special Needs Sign. Yes there is a difference. All signs are not alike and Jayden will be sharing the differences and how it can impact a classroom and a child.
I also plan on doing a video with Jayden about acceptance and why being different is OK. This will be a 3 part series. After we finish taping the sign language video we will get started with the acceptance video. I feel this is important to talk about.
I plan on interviewing Jacob's father (which we are not together). But he has challenges himself with bipolar. How he feels with Jacob's diagnoses. What he finds difficult raising an autistic son. Where does he see his son going in the next 5 to 10 years. His opinion on being a special needs father. His advice to all fathers.
I also plan on interviewing Jacob. Jacob is 20 and autistic mod-severe. I will see how it goes. I will ask him basic questions, such as what he likes to do, what is does he want to do after school. What is his dream job. What he wants to do after school, since he is in his last year.
I will also be doing other videos and interviews as we go along. Videos may include easy to make sensory items. Some of favorite inexpensive items for special needs. Stay tuned.
So I will be updating the blog more often now that we are out of quarantine and I am starting to feel better.
I will be starting a facebook page also very soon. Super excited!
Note- I will be talking about sensory issues in an upcoming blog..

My name is Saundra and the writer of this blog. Since I became an adult, I have been very passionate about being in the Special Needs Field. It all started with my struggles. I struggled in school since I was a young child. My mom was always fighting the school system to get me the help I needed. Back in the 1970s they did not know what I had. I could read, but could not absorb or comprehend what I was reading. I had difficulty with grammar and writing. I was always confusing my left from my right. I became confused with some of my letters, such as p and q and b and d. I remember we moved and I went to a new school, they put me in the lowest reading group. I was embarrased by this. As years went on I struggled through High School. I was placed in reading, english and writing remediation. This was emabarassing as well. I remember getting A's and B's in Math, Business and Science and getting D's in English and Social Studies. I remember getting papers back and peaking at my score and lying to friends how well I didn't do. I would go to my counselor and she could not figure out what was going on. I was glad that that they did not look at me, as lazy, because I wasn't and I tried very hard. Some things I just could not figure out how to do, such as comprehend reading. In 1984, the end of my senior year, I remember the district brought in a psychologist to test me to try and figure out what was going on.
I remember sitting there petrified with my counselor and the psychologist. I already felt dumb and stupid academically in school. I remember doing a bunch of testing and one test stood out. It was a card test that I had to put like 8 cards in order. These cards were event cards. For example... Looking at rain, Opening an unmbrella, Walking in the rain with the open umbrella etc. There was a bunch different topics that I had to try and sequence. After I was done testing, they called my mom and dad in and told them, we know why your child is struggling. She has Dyslexia. I remember my mom being grateful for knowing. But in 1984 . Dyslexia was very new, they had no stategies. I ended up graduating with a non-regents diploma. When my friends graduated witwh regents.
I tried going to our community college right out of school and failed out. I worked as a cashier and assistant manager of a store. I loved it. I was excellent with computers and numbers and I did not have to write much. I got married and had 2 kids. My first child was born with a 90 degree rotation in their hips. They did not walk or talk until they were 3. My first child was getting early intervention like 3 times a week. When my first child was 8 months old, I became pregnant with my son. My husband decided to an affair when I was 8 months pregnant with my son. I don't think he wanted a disabled child. Let alone, my being pregnant with his second.
My parents took us in and finished off a room in the basement for my little family. My son was born with floppy layrnx and severe upper low tone. He began early intervention. So I had 2 kids with disabilities and early intervention. I started to really love how amazing these service providers were working with my kids. I was starting to feel inspired by it all.
After being really determined to regain my life, I went back to college. I learned to compensate a lot over my dyslexia the past years. I bought a tape recorder and recorded my classes. I read my books into a tape recorder. I remember having my first child in my lap and my son laying down next to me and me reading into and listening to my tape recorder. There were classes I definitely struggled in. I would drop classes because it was too much. I Graduated with an AAS. Which for me was a huge accomplishment. It took me 1 1/2 years, taking intersession classes also. I did not marticulate. It was all I could do to get my AAS in Liberal Arts and raise 2 babies.
I started working at Boces as a TA and 1-1. I loved working with special needs children. After a few years I married a man who I thought would be a good father to my kids. We had our son Jacob, who has mod-severe autism. As our marriage went on, he became more argumentive and violent at times. The kids and I left the house for good and Jacob's father was diagnosed with bipolar and depression. We are much better apart and work very well together as Jacob's parents.
The kids and I got our own apartment for a year. My father had passed a few years prior and my mom and I decided to buy a house together. So we bought 6 bedroom older home. I went to work at out local district as a 1-1 aide/TA. I worked for our local district for 6 years. I also was my mom's caregiver until she passed.
I still live in the same house. Two years ago, I had some major health issues and I became disabled. I have Occular Myastenia Gravis, Hyperparathryroidism, Nerve Damage to name a few. It doesn't stop me to want to help the the special needs community.
Having Dyslexia and having kids with disabilities taught me a lot. I could easily relate to the kids I worked with. Having dyslexia taught me to Think Outside The Box. I would teach my students to think outside of the box. Sometimes traditional ways are more difficult to process.
I have a lot of strategies tha I learned over the years and taught to my students. I think I will blog of various stategies I use personally, with my own kids and the kids I work with.
I love writing this blog. I have gained so much knowledge through my journey. I know my blog may not be grammatically perfect. That is part of my Dyslexia and it is OK not to have the perfect blog and to be to be different. Doing this blog, I taught myself HTML coding and I like it. I am pretty proud of that. Where for a long time I was embarrassed by my my Dyslexia, now I embace it. It makes me, Me! Kinda different and quirky at times. LOL And That is OK. I still do dyslexic things all the time. Nothing wrong with that. :) I hope you enjoyed learning more about me
At the age of 2 we set up Jacob with service coodination. What is service coodinator you might ask? A service coodinator is advocate for your special needs child. They assist with services such as respite, early intervention and community supports. They are advisors and referral agents to various supports youe child may need, from early years to adulthood. This includes setting you up for respite. Respite is where a qualified trained person will come and watch your child so you can get a break. They will also take your child out if requested. For example, Your child and their respite person can go bowling. A few other things a service coordinator might do, is go to your childs school meetings and advocate for your child. A service coodinator may apply to reimburse you for certain activites your child has done. They can be very beneficial to your child. Now in order to get these services your child will need to be on Medicaid or apply for Medicaid Waiver.
You will have to research your states programs. Most agencies should walk you through the process. If you would like to drop a link and a comment about your experiences in your state with service coordintation. That will be beneficial for others.
Note: The whole process is long and may seem complicated, but I suggest that every parent who has a child with special needs goes through it. Service coordination will walk you through everything your child may need through adulthood.
These are General Informative Websites (Not Based on any one state)
| Types of Service Coodination By The Depart of Health |
The Role of Service Coordination Care Autism Road Map |
What is Service Coordinaton and Why Does it matter? |
Guardianship is the legal relationship between a competatant adult and a person with a disability or someone who can no longer take care of their own affairs. The guardian can is legally authorized to make legal, financial, medical and healthcare decisions for the "ward" or the disabled person. This is for NY State. There may be othe rules to the guardianship in other states. You need to research these rules. There may be factors placed in the guardianship that may alllow the ward to make some decisions and but not all decisions. This is limited guardianship.
In most states, anyone who has the ward's Well-being can request a guardianship. Jacob's service coodinator set us up the an agency called Future Care. Future Care met with us 3 times and once with Jacob. This was to go over our rights for Jacob and share information with us. Since Jacob has two siblings as guardians, We had to list a first and second guardian. We chose our first guadian and they had to attend these meetings with us. Our second guardian is on standby if our first guardian can't fulfill that duty for some reason. Life is short and you don't know what will happen. That is why we we chose 2 guardians. Plus Jacob's siblings love him and want to help him as much as possible.
| What is Guardianship? By Guardianship.org | Does my Child Need a Guardianship? By Special Needs Alliance |
Guardianship for Young Adults. By The Simple Dollar |
You will discuss also money and trusts. I am all about protecting Jacobs money, so medicaid does not take it. So we are currently looking into an "ABLE" account or possible other accounts.
| Spotlight on Acheiving a Better Life Experience (ABLE) Accounts |
ABLE Accounts National Disability Association |
Pros and Cons of an ABLE Acount |
Future Care set us up with an attorney. At the attorneys office we discussed our wishes for Jacob. Jacob attended this meeting, though he did not understand what was going on. Because this was during covid, the attorney wrote a statement to the judge stating Jacob is autistic mod-severe and his parents want to be grant guardianship to their other children if something. should happen to his parents. We did not have to go to court and we were granted guardianship. This in New York State. In the end it was a long compiicated process.
Jacob service coordinatior has apply for this programs for Jacob. For NYS it is based on a budget. So his Service Coordinator will be setting us with an appointment with a broker.
| Self Directed Services by Medicaid.org | Self Direction-What it is and What it is not. | Self-Direction.. How it Benefits You or Your Love One |
That is where we are in Jacobs Process. I know it is a lot. I can barely process it all myself. I am not an expert on this topic. I just know what we are currently going through. We live in NY, so some of this based on our states program.
Jacob was diagnose with autism at 2 and half years old. I always thought something was different with Jacob since the day he was born. He would constantly scream and cry as a baby. Doctors passed it off as colic and gas the first year. But I sensed something wasn't right. The only thing that calmed him down was the sound of running bath water. So for hours the first year I sat on the toilet, holding Jacob. Sometimes I was crying myself. Jacob would stim and get excited when he heard the water. It was difficult to have a normal life. I had to leave my job, because I could not get anyone to watch him, because Jacob would constantly scream. Jacob would became over sensitve to lights and people in the stores and resturaunts. He was always screaming. I would become embarrassed and sometimes cry. I advocated for my son, to my doctor. I would say to his doctor, look I worked at Boces. I know the signs. My son is always screaming. He is now bolting and not even looking at me when I am talking to him. I fought so hard for a referral to a Developmental Center in our city. I was determined to get Jacob tested. I finally got it. Jacob was tested and was diagnosed with Autism-Mild to Severe.
I knew some of the things I needed to do. Thank goodness for my Boces training. I made a pecs book and started working with Jacob. We took advantage of early intervention, which included Boces Playgroup and home services until age 3 and he transitioned into Boces Preschool. We had a great team who didn't only support Jacob, but us as well. They had a parenting class for children with special needs, while the kids were doing Preschool. We took advantage of it. They would have speakers and taught us about programs to help out kids. They taught us so much about Service Coordination, Advocacy, Disablilty and more. The would go through the application processes with us for these programs. Without Boces, I would be so lost. When Jacob left Boces, they cancelled the parent program, do to not enough funding. This is sad, because I feel a lot of parents with special needs children can use this kind of help and support.
I really wanted Jacob to stay at Boces but he was pulled into the school district we lived in, which did not have a good special education program, though my 2 typical children did fine there. Saying that, we moved into the neighboring town and watched Jacob flourish. The school district is very attentive to Jacobs needs and very supportive of us.
We also got involved in ABA study through the Developmental Center. Jacob did this study from ages 5-16. This was a cool program where the doctor would come out and work with Jacob and I for 1 hour a week for the first 5 years and after that, it was twice a year. We would always get updated reports and testing. Jacob loved it and it was a very positive experience. It was paid study but the paperwork and testing was more important and Jacob's behaviors were improving. Both Jacob and I grew and learned from the experience.
This was a hard journey. But I would change a thing. :) It made me stronger as a person.
This is a video we made when Jacob was 7. Back then I found a program to work on Jacob vocabulary and speech. In the video, Jacob does some stimming when he is excited. But he has come so far. It takes a lot of work and patience.
Working 6 years at Boces and 6 years at our local school district, I have learned a lot about people. Teacher's Aides and 1-1 aides do not make a lot of money. Sometimes it will reflect how well they do their jobs. There are really a lot great aides. Make sure you have a communication notebook with your teacher and the aide. Do surprise check in's. If your child is acting out at home regarding school, Check out why. Where most classrooms are wonderful, I have been in classrooms where the teacher would swear and the aides did not get along. Make sure you keep the communication open.
Most special needs classrooms are labeled 12-1-1, 8-1-1 or 6-1-1. The first number is based on the maximum number of students in the class. The second number is for the classroom teacher. The third number is the number of para-professionals in the classroom. Para-proffessionals are teacher aides or assistants. Teacher aides are full classroom support. Teacher Aides need certification to hold this postion in most districts. There may be other support in classroom. These are 1-1 Aides, who directly work with a single student. Students need to have it written in there IEP in order to have a 1-1 aide.
The classroom is set up in a way that your child will quickly understand. Teachers normally use picture charts and picture schedules to show what the day will look like. Teachers realize the impotance of routines and schedules. The only way the schedule would be different is for specials (art, gym and music), class lunch time, or an assembly. Though every schedule is different.
An example of a schedule may look like this:
Services: Speech, Occupations Therapy, Physical Therapy are known as services. Providers will schedule your child for their service during the school day. Once scheduled, the students with have their services the same time and same days every week. Providers have at a lot of students to provide for in any school and sometimes they may work in multiple schools in a district. Some of these service can be be done individually or in a group. If every student in a class has the same service, they may do a class service. This is called, Pushed in. Most of the time they stick to their small groups. But sometimes they will Push in to the classroom. These are normally for fun activities. The Special Education Classroom - Part 2 .. I will be discussing...
Hi, my name is Saundra and I have a 20 year old special needs son with moderate to severe autism. I have so much valuable information to share with you. I have worked at Boces for 6 years as a classroom aide and my local district as a 1-1 aide for 6 years. I mostly worked in a elementary classroom setting. I hope you visit my blog often as I will be updating it weekly and adding new content. All links are checked and working.Thanks.
Scripted Social Stories By Vanderbuilt Edu.Social Stories include: I go to Preschool (on the bus), I go to Preschool (in the car), What Do We Do In Circle? I Can Be a Super Friend, I Can Stay Safe, I Can Use My Words, Tucker Turtle Takes Time to Tuck and Think |
Carole Gray Social Story SamplerSocial Stories include: Safety-Where ever I go (2 stories boy and girl version), What is a tragedy? Watching a tragedy on TV, What autism mean and what it doesn't mead, The peanut and jelly survey, Everyone is diagnosed frequently, The difference beween Emma and everyone else, The difference between Tyler and everyone else, Learning about skunks and stereotypes |
Social Stories by My Asperger ChildSocial stories include: Its circle time, Around town, Being Polite, Emotions, Figures of speech, Hygiene, Magor events, A story about death. |
Autism-Help Social Stories |
Conversation Starters 1What's your favorite TV Show? What do you like to do at recess? Have you seen any good movies lately? What did you do last night? |
Conversation Starters 2include How are you doing today? What are going to do after school? What is your favorite subject? What did you do this weekend? What did you do last night? |
Conversation Starters 3include What is your favorite movie? What is your favorite sport? What is your favorite animal? Do you have any brothers or sisters? |
Conversation Starters 4include What is your favorite restaurant? Where do your like to go on field trips? What was your favorite vacation? Where would you like to go on vacation? |
Conversation Starters 5include What kind of music do you like? What is your favorite song? What kind of games do you like? What job you want when you grow up? |
APPs
| Check out this App On Google Play- SPED Goals App by Ortega Gustavo
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Raising and co-parenting Jacob. This is where I ask Jacobs father questions about raising Jacob. I don't know how he will answer. Jac...