Missing Pieces-Living with Autism
All the stories on this page are from a site I had @ op2mystic1.simplesite.com. I wanted to merge both sites and was not able to do so. Therefore, I have transferred all blog posts from that page to here. Any future posts about Autism Spectrum Disorder will be found on my Home Page. August 7, 2016, to October 5, 2017.
So Much to Digest (written August 7, 2016)
The day Mr. T. (nickname for our grandson) was diagnosed with Autism Spectrum Disorder was a day I will never forget. July 13, 2016. As my daughter, I and Mr. T. sat in the room with the developmental pediatricians and psychologist for several hours, I really wasn’t surprised at what he could do and couldn’t do.
My husband and I had suspected for some time that he fell somewhere on the spectrum, but because his pediatrician had waved it off as him just being busy and learning other things well before children his age, we chose to trust her. She had over 30+ years in practice and never considered that she might not be the best advocate for his care.
It took multiple times pushing for language and hearing evaluations and the doctor retiring before we were taken seriously. Our daughter is a single parent, and as such, because she and Mr. T. live with us, we all share in taking care of him since birth. I or my husband has gone to every appointment with our daughter and grandson; to make sure questions that needed to be asked, were asked and to be a support system to her and T.
When I look back at his 12 months and 18 mo checkups, I repeatedly asked the doctor if she thought he might have Autism. She laughed and assured us that he would talk when he was ready. He was healthy and fine. Early intervention home care therapists were also pushing for evaluations.
It took Mr. T. being assigned a new primary care provider and being seen at his 2-year checkup before the ball started rolling. Right away, this pediatrician was telling us she would be making referrals for him to be seen by specially trained Developmental Neurologist and Psychologists to determine what delays, if any he had. Finally, we had found someone that was on the same page as we were.
Mr. T. has maybe 3 concrete words. The rest is pointing and what I would call grunting to get what he wants. When I realized and found out that a child of 2 years old, should have a vocabulary of at least 25 words and be able to start to form those words into sentences, I was disheartened. But my love for Mr. T. is just as strong as the first moment I laid eyes on him when he was brought into this world. That will never diminish.
Evaluations were done in several visits and the diagnosis was clear. He has ASD and will require much support to help him learn. I must admit, I was relieved to have the diagnosis. Now we knew what we were facing and we could begin learning how to best help him be the best he can be. His normal.
I never really have liked the label “normal”. Who decides what is normal and what is not? God created all of us.
We left the office that day with informational handouts/a spiral bound book explaining Autism written by other parents and professionals that have been through what we were just going through and a sense of being very overwhelmed and maybe even a little sad.
But I vowed to myself and to Mr. T. that we would walk this journey out together, no matter what it looked like or how difficult it seemed. One of my basic beliefs is Giving up is NOT an option. If we can’t walk on the path due to difficulties, we will find a way to climb over it, under it or make our own.
And so it begins…..
Sensory Overload (Written on August 9, 2016)
I am learning that while most people that do not have Autism or other processing disorders can function quite well with traffic going by, dogs barking, kids laughing and playing, music blaring from cars and a million other noises and lights that we can focus on the task at hand. However, people with Autism Spectrum Disorder can have a sensory overload and if they can’t get to a quiet place, where they can calm themselves or become calm, meltdowns can occur.
When Mr. T. has a meltdown, it usually consists of having a tantrum that no soothing stops-usually has to wear himself totally out- or he throws things. Sometimes just holding him tight and talking softly to him, or singing a song and ssh ssh sshing him works. At times it fails.
Before the diagnosis of Autism, I just thought that he needed to dry it up and stop acting that way because he wasn’t getting his way or it wasn’t necessary. I now realize that he can’t help when the meltdown occurs, no matter how much he wants to control those emotions, in his brain, there is so much chaos that the only way he knows to release all of the chaos is to act the way he does.
While I have been on the verge of having my own meltdown as I work with him, at every opportunity for him to understand he will be ok.
The other great tool we use when he’s frustrated is we let him get in the bathtub and play. The water seems to soothe him in many ways. The only problem with this tool is once he is in, getting him out can almost cause another, because I know if he could, he would live in the water every day.
As we continue on this journey, I know I will learn new ways to help him cope when he is so overloaded that all he wants to do is cry.
Challenges Are Opportunities in Disguise (Written on August 17, 2016)
I am learning that every challenge Mr. T. and I face together becomes an opportunity for learning. For both of us. I am currently working with him to teach him simple signs so he can tell me what he wants. He knows the sign language for Please and More and thinks that every time he says please, he gets what he wants.
We have been working on two more signs. Eat/Food and Drink/Juice. As long as he attempts the sign, even if it’s not 100%, he is given a treat. Such as a few cheerios or fruit loops or grapes.
It is definitely a challenge since his focus is very limited. My mother raised our sister who was deaf in a hearing world and I know without a doubt she had her struggles, but we never knew it.
Distractions must be kept to a minimum when we are working and we are still learning the best way to accomplish this. Pray that God will lead us in the best way to work together. I know he becomes frustrated when he wants something, but I have no idea what it is. Every time we go out is an opportunity. It’s knowing and remembering that he can learn if I am willing to teach.
Small Steps-Big Win (Written on August 20, 2016)
Several months ago, Susan, Mr. T’s Early Intervention Specialist introduced playdough to him. He had no desire to touch it, much less work with it. She indicated that children with ASD, have sensory processing disorders that create difficulties for them to touch and feel different textures. In her play with him, and teaching him the words push, pull, in and out, she placed “poker” chips inside the rolled up playdough and asked him to find the chips and take them out. He was very hesitant about doing this because he didn’t like it at all.
I have been working with him to get him used to the playdough. Some days, he doesn’t even want a flake of dough on his fingers, other days he presses it down. I will hold it in my hand and squeeze it so it comes out through my fingers and then says, oooh, look at this or wow, that’s cool. As I am using positive terms and acting silly, he has started to grasp the dough and press his hands down into it and play with it.
In a world, where many children, can’t wait to get their hands on playdough and mold and create, just seeing him make a handprint in the dough and not meltdown is a big win!
Any win with him, I celebrate! As he learns new skills, I learn that given time and the right environment, he can bloom and allow me to see how the simple things in life can create such joy.
Many blessings to you from me and Mr. T.
I Am Maw (Written on 8/29/2016)
Last week Mr. T (Tyson) started saying maw-not ma, but mawwwwww and then he would pat me on the arm or hand. That was music to my ears, now I have a name. A name he gave me. It’s the kind of music that you long to hear, but aren’t sure when that will happen. This little guy has been a part of my life, daily for the last 28 months, barring two weeks when I was away for family business.
He has no idea how great it was for me to hear him call me that. He calls his papaw “DA” and his mommy mama.
And little did I know that although he can’t tell me verbally, he knows his colors. We were working with his fish tank toy and there are plastic fish he puts in and the tank says the name of the colors. So, I decided to see if he was getting anything out of it and held the tank and laid the fish on the table and asked for each color one by one. He got them all right and is attempting to say blue, although it comes out like boo. Bravo Tyson, bravo!
There has never been any doubt about his intelligence. He has always been able to figure things out if given enough time. He is using his PECS on a regular basis now and it is helping him to share what he wants, or how he is feeling and what a great tool they are for all of us instead of wondering or trying for 20 or 30 minutes to understand what he is asking. Blessings to the inventor of this system.
His stims have increased somewhat, and for the most part, are safe. However, he has also increased in climbing and jumping, with no care if there will be a safe or soft landing. That is what worries me the most. I’ve noticed working with him and watching Wheel of Fortune with him that he loves things that spin. He will put his hand on the television as the contestants are spinning the wheel and tries to help spin the wheel and then gets all excited and covers his mouth as if he is embarrassed.
He is very strong. There are many times, when we are trying to change his diaper or rocking him to sleep, he wants to flip and twist and turn and I am amazed at that strength he has. I have heard that many children on the Spectrum have great physical strength. I do not know if this is a fact or a myth. But I do know that it takes every ounce of strength I have to hold him tight and keep him still when bedtime draws close. He has to be held and sometimes rocked or we sway back and forth. The rocking motion seems to calm him down and then there is music. Sometimes it’s an old hymn or calming sounds of rain, waterfalls and nature sounds. Other times he wants to hear a good ole country tune. When he starts pulling on my hair, rubbing his eyes, then I know slumber is near. Some nights are easier than others. If he plays hard during the day, within 20 minutes he can be out. Other nights, it’s a long drawn out process-2 or more hours. And he loves to cuddle, so I hold on tight and we wait until he realizes, there’s no more playtime, just sitting with maw. He runs his hands over my face, points to my eyes, nose, ears, and mouth and we play quiet games in my chair. Those are some of my most favorite times. The TV is off, lights are dimmed and it’s just him and me.
Being given a name from Tyson is like winning the lottery! I love him so much.
One day at a time, one step at a time, one minute at a time. I am Maw!
Many blessings to you!
Keeping Busy (Written on September 2, 2016)
The one thing I have found with Tyson is he is always busy. Busy stacking his wooden blocks and then knocking them over. This activity can hold his attention for about 5 minutes. And then it’s on to playing with his lego big blocks and creating art. And then onto drawing on paper, himself and anything else he can. And then he wants to play with his car (Cozy Coupe) and drive around and get in your way. He is constantly going. When I try to sit him down to “work” on his speech, he doesn’t like that because it’s structured and he has to wait and try to do the task.
I am working on creating structure, not just with his communication therapy but in the home in general; this is not an easy task when no one else works with you.
Trying to keep all of his blocks and puzzles organized with all the pieces has become very overwhelming to me in the last few days. I suppose part of it is we’ve been inside a lot and maybe the reason I am struggling so much is I want to be out in the sunshine. I love taking him to the park and he loves going, but he bolts and with my limited mobility, I cannot take him on my own. He is faster than a locomotive when he takes off and he just doesn’t comprehend the street is not a play area. It’s so very frustrating. I know how much he loves going down the slide and swinging until you don’t think you can push him anymore.
We have a swingset in our yard, but it’s still hard to control him in a large yard with no fence and a creek behind the house. I know I will figure it out, just right now I am not sure what we will do. It is not fair for this 28-month-old to be inside every day, but it is safe. I don’t know what I would do if something were ever to happen to him.
We have a harness that we use when we go out. Some people stare and make comments under their breath, but if he is not strapped into a cart or stroller, he has his harness on. It gives him the freedom to walk on his own, but not too far. Without it, even holding his hand, he wants to run and explore.
He loves to go to our local Meijer store because he knows he will get to see his fish buddies. We walk him back to the fish tanks at the back of the store and he ooh’s and aahs and waves to them. ‘We take time for him to look and point to each and every one. Maybe someday he will have his own; right now our cat would love that more than anything, so no fish buddies at home right now.
He is starting to understand what the PECS are for. A friend gave me some PECS and strips/wallet/boards to put them on and when we go to the store, I place several food pictures in the wallet and ask him what he wants. He points to the item and we get it. It’s a small step, but still a step.
He absolutely loves watching children videos on YouTube of kids playing at the park, climbing on slides and playground equipment and riding in their motorized cars. He also tends to watch a lot of learning colors videos. There are days I wish he didn’t know how to use my phone to access those videos because when it’s time to do some work with him, he has a meltdown. But by him watching these color learning videos, he is learning to say the color blue. He has also learned the other colors, even though he can’t speak them.
He amazes me daily. I try to put myself in his tiny shoes and understand how he feels. I can’t. No matter how hard I try, I have never been limited by communicating with others. He seems to understand that I struggle with this when I become frustrated, he hops up on my lap, hugs me and pats me on the shoulder, as if to say, it’s ok maw-you’ll get it.
Sometimes I am reminded that as much as I want to teach and empower him, he does this for me on a daily basis. Oh, how I love him!
Lessons (Written on 10/03/2016)
Every day we are learning. Tyson is learning how to ask for things he wants, by using pictures to communicate And I am learning that sometimes pictures are not enough to convey what he is trying to tell me.
We-a collection of friends and family- are working to help Tyson recognize words by using our voices, pictures, and sounds and praying daily he catches on.
He recently got this Alphabet carrier (Elmo’s Alphabet To Go) and he loves it. He knows some of the letters and says them without any difficulty, but I do not know if this is because he has watched several videos on YouTube with other kids learning the letters and is only repeating them or if he truly understands what each letter is.
He is learning the word NO and he does not like it. His throwing objects at people and across the room or table have become more frequent. He thinks it’s funny, as he laughs and then claps his hands (and wants a “high five”-which he does not get). When he throws an object, then the lesson becomes: we don’t throw things in the house; we don’t throw objects at people; be nice; say sorry; no rewards for unacceptable behavior. One particular incident the other day was quite unexpected. He had a large Lego block in his hand and threw it at a friend sitting across the table from it. Nearly missed her face. The look on her face was a look of shock and being stunned and I was frustrated. I looked at Tyson and said, NO! You do not throw blocks! You hurt Maggie. The first reaction was to cover his face; the second reaction reached out his arms asking for a hug. He received a hug from Maggie.
Later that evening, same situations, throwing objects not meant for throwing. I realize this is something that we will continue to work on; because he is 2 and because he has Autism.
Sometimes it is hard to figure out if the problems he is having is because it is normal for his age or if the ASD plays a role.
We have learned that when he first touched dry rice, he did not like it, but as he searched in the rice for his dinosaur figures, it wasn’t so bad. Now he can pick up the rice and hold it in his hands and let it run through his hands without trying to get it off in a panic. I take for granted daily the taste, touch and smell of items have different sensory effects on people with sensory processing disorders. As a child, I loved playdough and fingerpaints; Tyson is working with playdough better than previously, but it is still not his favorite to touch and he doesn’t like the fingerpaints at all because he doesn’t like it on his hands.
We have also learned that due to the sensory processing and wanting to be naked all the time, we have to be creative with his diapers. So, when he is in the mood to throw off anything that hinders him, one diaper is put on correctly and another one put on backward so he can’t reach the tabs. If he doesn’t want clothing on at home, that’s fine, but since he is not potty trained, we cannot go without diapers.
The speech therapist and I have started using a visual schedule with him in his sessions and doing visual schedules at homes as well. I can see where the structure and routine make it so much better for him. It’s getting everyone on the same page that is a struggle right now. In a home, where the structure has been lax for so long, trying to regain structure and have routines in place are harder than it looks. Slowly and methodically, structure will happen. I just have to remember to not give up.
Tyson is teaching me what patience looks like. He reminds me daily that I need to be patient and congratulate him on everything he does do. Affirm and reinforce what he is learning and that doing something over and over isn’t because he is stuck on just one thing, but because it helps to do the same thing over and over so he will remember it. It helps to grow his brain and create memories.
I thank Jesus every day that he blessed us with Tyson, a bundle of joy from the moment he was born.
C-D-E-F-M-O (Written on 10/10/2016)
Tyson recently got an Elmo on the Go Alphabet Carrying case and can say the letters:C,D,E,F,M, and O.
He loves watching YouTube videos of kids playing, nursery songs with videos, etc. One day, he came across a young girl of 3/4 using the Elmo on the Go Alphabet with another adult and as the adult would ask the name of each letter and where it went in the case, the girl would respond and he would get excited and clap! For all 26 letters! Prior to him seeing this video and this type of alphabet set up, he didn’t want to have anything to do with learning the ABC’s. He already had a puzzle and knew where the letters went but showed no signs of knowing what each letter was.
To my amazement, I decided to see if he could match these plastic letters with alphabet cards/pictures and as he did this and I would say the letter, he would match it with the right card! And then one day, he started with the letter E and F.
Everywhere we go now, when he sees letters in the store, in a book, where-ever a letter may be, he will point to it and if it is one he knows, he will say the letter. No phonetics, just the name of the letter.
I know that may not seem like much-every child learns these letters, right? When you are considered non-verbal and only have said 3/4 words by age 29 months; seeing the connections made and his eyes light up and he smiles and claps and gives you a high five-what a blessing to be a part of.
Tyson is also using PECS as part of his communication diet. He knows some sign language, uses PECS to ask for things he needs and wants and sometimes there is a point or gesture. The best part of all is he is finally communicating with us and we are starting to understand.
Today, as we worked on cutting his hair that had gotten way too long and out of control, he communicated by screaming and crying. Every other time before now, he has always liked getting his haircut, but today was definitely not that day. What normally takes 5 – 10 minutes took almost an hour, and if it would have taken longer, than it would have been longer. The fear he had when he saw the clippers and then they were turned on, was so hard to watch. Once the cutting started-with all the squirming, moving the head, putting hands in hair, etc. his hair had become very scary. The decision was made to cut it as short as possible, pretty much like peach fuzz on a newborn so it would grow back in even.
One minute, a full thick head of hair that is unruly and the next hour, almost bald. Crazy!
After that devastating haircutting experience, he played in the bathtub and forgot all about the hum of the trimmers.
I’ve heard for most people with ASD, loud noises and bright lights are too much. It seems to me that for Tyson, he loves loud noises to an extent and bright lights only bother him occasionally-although they may bother him and I just don’t realize it.
We have found he loves school buses. Hopefully, when it is time for him to ride a bus, he will still have this love. He watches the bus pick children up and drop them off daily on our street and jumps for joy, runs back and forth and squeals with delight. The same can be said for fire engines and ambulances.
His stims have increased and some days it is hard to keep him safe during the process.
He loves to jump and jump and jump-sometimes on the floor or a piece of furniture, and sometimes from one object to another. The jumping on the floor or even on the bed is okay. It’s when he decides to jump off of the bed and there is no one to catch him or he wants to jump from a footstool to a chair and miscalculates how far away he is.
And his spinning makes me so dizzy, I have to close my eyes, but he loves it. God makes each one of us unique in our own ways. I love seeing pure joy comes from Tyson when he jumps and spins. Pure joy.
Every now and then, a word will pop out and we ask, did you hear that? And then we never hear it again. He used to try and say this, but it would sound like “dis” and he would point to everything he could and say “dis”? We would answer his questions and tell him the names of objects and things. Now he no longer asks.
We will never give up hope on him being able to use his words to share his needs and wants. I will admit I would love for his words to come through in a spoken voice, but my biggest dream for him is to just be able to share in his life with others his dreams, his fears, his needs, his everything.
So, if all he can say right now is 5 simple letters of the alphabet and 3 loving terms of endearment for his mother, me and his grandpa……we will take that and call it a victory!
One day at a time….one day at a time.
May each of you that read this and have a special needs child or adult in your life know how much they love you. No matter how difficult something is for us in caring for them, just know how much you care for them means to them. That’s called pure love.
Blessings to each and everyone this week!
Our 7 Senses (Written on 10/16/2016)
When I was growing up, I only thought we had 5 senses. Turns out there are actually 7.
There is sight, taste, touch, smell, hearing, vestibular and proprioceptive.
We see with our eyes, taste with our mouth, touch with our body, smell with our nose, hear with our ears, but did you know the sensations your muscles, joints, and connective tissues get from lifting, pushing and pulling heavy objects are called proprioception and vestibular input is what coordinates balance and movement of our eyes, head, and body.
Tyson’s Sensory Motor Processing was recently evaluated and I am not surprised that he has dysfunction on several levels. He is considered to be a Vestibular Seeker and as such doesn’t think about any type of danger he may place himself in when playing/jumping/running. He loves to spin around to the point it would make a neurotypical person dizzy, but because he has SPD (sensory processing disorder), it actually makes him feel good. The spinning and jumping that he does help to calm down the overload in his brain and makes him feel better.
He is also considered hypersensitive or overresponsive to many things. Too many lights, too much noise, too many toys to choose from, etc. can cause him to go into overload.
I heard a child talking on YouTube about SPD and he described it in the simplest terms possible. Our senses have input to our brain, but sometimes our brain doesn’t function correctly and the sensory input gets all jumbled and if a person can’t do what they need to relieve the pressure of the overload, a meltdown most likely will occur. For Tyson, his meltdowns mostly occur when he is in a panic over something or when he is extremely tired and just can’t handle thinking anymore.
I wish I could say that every time he has a meltdown, I know exactly what to do; unfortunately what works once, may not work the next time.
I have found that YLEO (Young Living Essential Oils) Lavender and Frankincense oils rubbed on the souls of his feet do seem to help somewhat in calming him down. I usually rub this on his feet and pray for him. If I had not seen this for myself, I would have never believed the oils could be so beneficial to him.
He also loves to swing. I’ve been considering asking my husband to build a support bar that we could attach his outside swing to a door frame for winter time. Any type of movement seems to help.
I am glad he likes to be hugged and squeezed and loved. I can only imagine how difficult it is for people on the autism spectrum that do not like to be touched or for their families. Of course, I am a hugger so I would think like that.
The Occupational Therapist that evaluated him said, when a person has sensory processing disorder, it is usually trial and error before you find what works best for them and then expand on it. Since we are already involved in the Play Project and have a developmental specialist coming to the home, we are going to hold off on one to one therapy and if we see a need to that, we will do that then.
It’s good to know where he stands and what he struggles with so we can help him figure it all out. He loves visiting the wind chimes on the front porch. He loves soothing music and the chimes have a beautiful sound to them. We go out on the porch and I lift him up so he can push the chimes back and forth when it is not windy out so he can hear them.
So, as I learn about two sensory inputs that I had no idea about, and Tyson learns too, we would just like to thank you for stopping by.
We hope you have a blessed day!
Costumes & Candy (Written on 11/02/2016)
Tyson went trick or treating this year. He wasn’t too sure about putting his ninja costume on, and I wasn’t sure he would; but after letting him hold it and feel the material and realize that he was going to wear it and it wasn’t going to hurt him, he was okay with wearing it. Thank goodness, because quite frankly when we were shopping for his costume, I didn’t take into consideration that his Sensory processing disorder might affect him wearing it.
I am still learning about his sensory processing disorder and what bothers him and what doesn’t. From what I have gleaned by living with him and being his daily buddy, just when you think you have it figured out what bothers him and what doesn’t, there are always more things. I imagine this will be an ongoing thing in his life. I am not sure, but whatever it takes to help him get past some of the sensory issues, I will help him along the way.
Last year, when he was just 1, he wore a Superman cape and went to three or four houses and was done. This year, a few more for the city trick or treat night. And like most children, there were some homes he was scared and others didn’t bother him. I was truly impressed that he was able to go with his mom and my future niece and not have a meltdown.
Near the end of his adventure, the last place they visited, was ready to be done with passing out candy; they offered him to grab another handful from their bowl and apparently, he did that several times and laughed and they didn’t mind. He likes MM’s and KitKat bars And Sweetarts. He also likes the tootsie roll pops/suckers but doesn’t understand you can’t just lay the sucker down where ever and then pick it back up and eat it. He is only two.
He amazes me because they are many days, he seems so much older because he is so smart. Not that I am biased…well maybe I am, but he is a big boy for his age. He has been since birth. 9.875 (nine pounds almost 9 ounces), 22″ newborn. At two, he is 36 1/5″ tall and weighs 32 pounds!!! Big Boy!!
His on the go Elmo alphabet with carrying case is helping him to learn the Alphabet. Today he became so animated and excited because he could say A! It was a moment that I wish I could have recorded. One of the many moments when he has figured something out for the very first time and he is so proud of himself. He will clap and then high five your hand.
The picture in this post was taken at a Trunk or Treat event at a local church, with his mom in front of the firetruck. He allowed me to put him in the front seat of the cab and he was so curious about everything he could see and touch! He loves firetrucks. The noise of the sirens doesn’t seem to bother him, but other loud noises such as a vacuum cleaner do.
I am hoping next year, I will be able to walk with Tyson as he explores and becomes more comfortable with our neighbors. He did not try to bolt this time, held his mommy’s hand and when he started to putter out, in the stroller he went.
Any opportunity that we can give him to be around others, as long as we are supervising, is a good way for him to get used to being around people.
It’s hard to believe that in 6 months, this precious child will be three. The best three years of my life so far.
Tyson and I pray that you will have a fabulous day!
Watch Out! (Written on 11/17/2016)
Tyson is fast. So fast that he trips over his own feet and falls. Yesterday, he became excited and was running in the living room and tripped and fell smack dab onto the side table next to my chair. His poor little face hit the edge of the table hard and I don’t think I have moved so fast in a long time. As I scooped him up off the floor, tears streaming down his face in sobs of pain, I wondered if he would require a trip to the doctor or not.
As Katlyn and I examined the area near his right eye and cheekbone area; attempting to place an icepack (this two-year-old wouldn’t go for it) on his cheek, we realized he was ok. There might be a bruise, but he wanted down so he could play….as if to say, stop fussing over me, I’m a boy, I’m tough, I got this.
And he is all boy. He climbs and runs and jumps and plows through the house as if he is fueled by rocket fuel. We really have to keep hold of him when we go outdoors. He loves being outside, but he also loves to run and running into the street. When he sees a school bus he makes O sounds and wants to get as close as possible to see it.
The word danger is not part of his vocabulary. If anything, catches his eye, he runs after it. It doesn’t matter if it is in the street or not. Just as he knows the word HOT, but doesn’t really grasp the concept that when something is HOT, we don’t touch it. When we use the oven/stove to cook, we have to make sure he is in his highchair, secured with straps or in another room with a family member. As inquisitive as he is, he always is investigating and wanting to open the oven door. We are in the process of getting appliance locks for all the appliances. Right now, only the refrigerator has one.
We’ve learned that when we go shopping if he is not secured in the shopping cart; he is secured by his harness. He is too quick for us to only hold his hands. There have been stares and probably comments made, but we do everything we can to keep him safe. Until people have had a child that bolts and doesn’t “hear” you when you say stop or no, there is no way to describe the feelings of fear that overcome you as you see a vehicle coming toward your child and you pray you reach your child in time.
He is a very bright boy. And he seems to understand a lot of direction when it is one on one and in a structured, calm environment. When we are out in public, he becomes so overstimulated, that he doesn’t “hear” anything. Too many lights, too much noise or color or activity around him and he’s in his own world. Each day is an adventure for us and for him. When he starts to withdraw and not really listen, I have to remind myself, that he is retreating in an effort to not go into meltdown mode.
His meltdowns are usually lots of crying and tears, sometimes kicking his feet and flailing his arms, it just depends on how he is feeling at the moment.
Today his trampoline arrived and papaw put it together for him. Now when he becomes overloaded he has a way to release it. Safely. The coolest part of the whole endeavor was he knew exactly what the trampoline was for~no one had to show him how to use it. He climbed up on it, held onto the handles and jumped until he didn’t want to anymore. And he smiled and laughed and giggled. The best sounds in the world!
Structure & Routines (Written on 11/27/2016)
Anyone that lives with someone who has autism, knows how very important routines are and when we deviate from those routines, how difficult it can be for them.
Tyson is 2 1/2 and I never thought it was possible to set a routine for him, let alone that he would know it and remember it. And when we change his routine, especially without warning, it creates havoc for him.
We are still working with him to understand structure, and how important it is for when we are working together. Working is when therapy is in session. Even though it is a form of play, it is still working and sitting still and listening during the task. He isn’t one for sitting still very often unless he is sleeping or eating. More often than not, he will stiffen up, or cry and reach out his arms, as if to say, help me and I have to be the bad cop and say NOPE-we have to work.
It is tremendously difficult to see those tears well up and know, he doesn’t want to be strapped in his chair, he wants to be held. He doesn’t want to be restrained, he wants the freedom to run and jump and climb, and play.
His routine in the morning is very structured. He gets up, his diaper changed, he eats breakfast, brushes his teeth, gets dressed and watches Paw Patrol and plays indoors. One day a week he goes to speech therapy. Another day, Play Project comes to our home to teach us ways we can help him learn to interact with others.
Our mid-morning and afternoon routines are less structured as different appointments and therapy sessions make it difficult to have a rigid structure. Either before for after therapy, we eat lunch. While I work on doing dishes or throwing a load of laundry in the wash, he plays with blocks or puzzles and/or watches videos on my phone.
He loves things that spin. He searches for “Wheel of Fortune” and “Price is Right” videos just to see the wheel being spun. And he can replay the same video all day. By the third or fourth time of hearing the commotion of the wheel(s) spinning, I have learned to tune it out.
He learned his colors and his alphabet by watching videos. This is the one thing that will and does hold his attention. I have and do work with him in the “normal” way to teach him shapes, colors, numbers, letters. I have realized that the normal ways of teaching a child new things do not work for him and why should it; every child is unique in how they learn and for a child on the spectrum it is usually much more difficult.
I hear from many professionals that I should limit his time with videos and electronic devices. Fries the brain, or so they say. But what if, what if for an autistic child, this feeds their brain. I am not saying that this is the only way for him to learn, nor should it be, but he has learned so many things and retains them from watching the videos, where he does not retain them from being told. Does this make me a lazy grandparent/teacher for him? I hope not.
Our evening routine begins at dinner time. We have dinner. We act silly with each other. He plays and then it’s onto the bath and getting ready for bed. He loves taking a bath. He doesn’t care for the bubbles too much. He loves bubbles that we blow in the air for him to “pop”. He does not like the bubbles that touch his skin. I do not know why. I do know it has to do with his sensory processing disorder and each time we add a little bit to his bath water to see if he will allow them.
I wish I could say putting Tyson to sleep was easy. Put him in his bed, turn off the lights and voila – he’s out. Never has happened, at least not yet. Maybe someday. I can say that once he has gone to sleep, after wriggling and tossing and turning in your arms when he finally gives up the struggle to lay his head down, he usually does sleep through the night. It’s getting him to sleep that is daunting. I feel lucky, though because I know most parents and caregivers of Autistic children do not get much sleep because either does their children.
I never looked at what I do with him as a routine to put him to sleep, but I have come to realize it really is. I have tried to share this routine with his mother and other family members as a way to prepare them for when they must rock him into slumberland.
I rock my body in sync with his, we do not use a rocking chair. We always play music or I sing to him. Sometimes I sing real songs and other times they are made up songs that only he and I know. He does the spin and twist, I’m going to try and get down from this chair routine, and I hold on tightly. I rub his back and massage his feet. He rubs my face and tugs at my eyebrows and lips and constantly holds on and pulls gently on my hair. And we hug and cuddle. I whisper, “I love you, Tyson.” He hugs me back and gives me kisses on my forehead and nose and pokes at my eyes. Eventually, all the pulling and patting and tugging, turn into yawns and rubbing his eyes and he starts to relax. He still flips and flops from his belly to his back, but it’s much more subdued than when we first started on the bedtime journey. As he fidgets and gets settled, I finally can relax my grip on him. My muscles in my shoulders can relax. No matter how hot or cold it is, he always requires a blanket wrapped around him. Keeping him secure. He always did enjoy the snug blankets wrapped around him as an infant. As his eyelids flutter closed for the final time of the day, I am reminded how blessed I am to be in his life. I hold him close and I thank God for sending Tyson to our family. Two hours later and he is finally ready to put down in his bed for the night. Another day in the books.
Before we knew how important routines were, all of us struggled. We couldn’t possibly realize how important it is for him. Every day we learn how important routines are for all of us.
Happy New Year from Me & Mr. T (Written on 01/04/2017)
Hey, everybody! Tyson and I would like to wish all of you a very Happy New Year! We’ve been away for a while because I determined that we needed to spend less time on the computer and more time working with one another in learning and playtime. Tyson has been working with the Play Project (http://www.playproject.org/) and as we teach Tyson how to engage with others, we are learning new ways to look at how he sees things.
He’s 2 1/2 and most children this age love to play. He is learning how to do pretend play so that he learns how to engage and interact with others. His mom got him a refrigerator/stove playset and he has started bringing me “cups” of water from his refrigerator water and ice dispenser as well as making eggs and chicken on his stove and having me “taste test” them.
The hardest part we are having so far is getting his attention and keeping his attention for tasks. When he is engaged and listening, he follows instructions fairly well. He can do the same activity over and over again if it is something he likes doing. If we are working on a new task or he has too many distractions, it’s hard for him to stay focused. But not entirely.
The reason I say no entirely is because when he is watching videos on YouTube or my local cable app on my phone, he can sit and watch those for almost 15-20 minutes. I use that as a reward. First, you do your work, then you can watch a video. I don’t want him to become addicted to the smartphone and the YouTube app, but I do know that he is very wise when he is on this app. For all I know, he may be able to read very well, even at 2. He knows how to search for videos he wants to watch, even if I clear the search history. Since he doesn’t talk to us, I do not know if he can read or not.
His memory is impeccable. I wish I had his memory. If he has been anywhere just one time and we return there but use a different route, he will fuss at us and point; as if to say, we are going the wrong way.
He has random words that pop out every now and then. The good thing about this is they are used in the correct context. The newest words I have heard within the last several weeks are Woah (as in slow down) and WOW (as in wow that is really cool). I am working with him as well as his speech therapist to teach him new signs to incorporate into his communication skills.
The sign language he knows and uses correctly are more, please, want and hat. We’ve been working with him to say go and stop/wait. The hardest thing for him to understand is even if he asks for something and does every sign correctly or shows me the picture symbol, he doesn’t necessarily get it. It may be close to dinner, so that means no sweets or frozen treats. He might ask to go swing outside, but it may be 20 degrees out. Telling him no so that he understands and gets it, that is the hardest for me.
He will soon be transitioning from Early Intervention Services to Preschool Services through the school district. I am nervous about this simply because it will be a change in his routine and he doesn’t do well with that at all and because I have never had to have an IEP (Individual Education Plan) written for a child, so I am not sure exactly what I need to ask for.
I have been reading about IEP’s in the State of Ohio and how it all works. Reading something and actually being part of it, are two different things. I want to make sure that I ask for all he needs and not sell him short.
I am hoping when we see his Developmental Pediatrician near the end of the month, he can give me some tips or point me in the right direction. I am thankful for all the support I have received from friends that have been down this road before concerning IEP’s and advocating for a disabled child.
Tyson’s waiting to watch his Paw Patrol DVD he got for Christmas. We have seen the five episodes at least three times a day since Christmas. He loves all the pups from Paw Patrol and that is the other thing that can usually hold his attention for a few minutes.
Does anyone have any suggestions on what I should be asking for concerning his IEP’s for Preschool? He is Autistic with Sensory Seeking Behaviors and non-verbal. Any advice from those that have gone before or are currently going through this would be much appreciated.
Blessings to you and your families. Thank you for stopping by.
Feeling Isolated & Alone (Written on 01/22/2017
Taking care of Tyson and taking care of myself leaves both of us feeling isolated many days. It’s not that people haven’t offered to help; it’s that our home is his safe haven. When we travel to any other place, we have to be ever vigilant of what dangers surround us. He loves electrical outlets and any plugs or cords. He loves pushing the buttons on stereo equipment and televisions if he can reach them.
He likes to climb up on the furniture and jump off. He loves light switches, Turning them off and on and off again. He finds joy in handling and “fingering” objects of decorations that may be sitting out and about. He likes to throw his toys and sometimes we aren’t fast enough to get the object out of his tiny hands before they are flying through the air.
He must be secured in a room with locks at the top of the doors or gates across door openings so that he cannot escape into danger areas. All appliances must have a lock on them, so he doesn’t climb the shelves in the refrigerator trying to grab something out of reach, or open the oven door when it is baking a cake. The microwave is constantly under investigation. He knows the glass plate inside spins and he LOVES anything that spins. And when I say anything, I mean anything. He will sit and watch videos of ceiling fans on YouTube for long periods of time. So pressing the buttons on the microwave achieve the same action and it has nice little beeps that make him clap and jump up and down.
He loves to play outside, but it’s hard to take him outside with only one person unless you are carrying him; he is in a harness or in his stroller strapped in. He loves to swing and go down the slide multiple times and I know he would do this for hours, weather permitting.
Unfortunately, he is very fast. Reminds me of the roadrunner from cartoons gone by. The roadrunner was FAST!!!! Tyson can be gone within seconds. It happened yesterday and we were at home. My husband was taking the dog out and before he could grab Ty’s hand, he slipped out between him and the door frame and was off and running. He caught him and brought him back in, but he doesn’t respond to being told to STOP! He has no idea what stop means or slow down. And to Tyson the road is just another place to play, he doesn’t understand he cannot go on the road for any reason.
When we go out to eat, he must be secured in a high chair. Unfortunately, there are some restaurants that do not have the correct size high chair. He will not sit on your lap peacefully. He wants to get down and explore. So if he must be held, it is not a relaxing dinner for anyone else either. And if the noise levels are fairly loud, due to many conversations going on at once – his senses become overloaded and fear sets in. He buries his head, he covers his ears and sometimes he whimpers or cries.
I never knew how much isolation anyone could feel being on the spectrum and caring for someone on the spectrum. There are many online resources to find support and connect with others that are going through the same processes you are.
I am thankful for the online friends that I have met since his diagnosis. They help keep me grounded and not feeling so overwhelmed.
I want to take him on walks. Hook his harness up and go, but I haven’t figured out how to accomplish this. I know it would do both of us a world of good to get out of this house. If I walk more than 10-15 feet, I use a rolling walker with a seat so I can sit when I need to. I also use a cane when the walker isn’t needed. The harness and walker haven’t worked so well in the past. I don’t know, I’ll just have to think about it and figure something out. He needs to be out in the fresh air more than in this house.
His early intervention team and the school district team are working with us to transition him to the preschool setting and I feel like a fish out of water because I want to make sure that he gets every service/aide that he needs or requires but I don’t even know where, to begin with, all this. We have a packet. We have to finish it and submit to the school system so testing and placements can begin. When asked what our concerns were, I wasn’t quite sure how to answer. He’s slowing picking up words and sounds. Communication is a big concern, but we want him to learn and not be hindered by his disability. How do you explain that to anyone when you don’t even know how to explain it to yourself?
I am going to dive deep into reading about IEP’s Individual Education Plans and exactly how they work and why they are necessary, etc. Maybe once I understand the purpose and how they are executed and work, I won’t feel so overwhelmed.
No matter how dark seems may seem, Tyson is the one light that never stops shining. Oh, how I love him.
Blessings to you and thanks for stopping by!
Me and Mr. T
Ever Changing Behaviors (Written on 02/13/2017)
It seems like Tyson’s behavior is changing for the worse. It’s hard for me to watch because he has always been a happy go lucky child, and never seemed so agitated or angered. Lately, he has been throwing objects at everyone. Most of the objects are his toys/blocks. However, at the dinner table is has thrown his cups and silverware at the people sitting with him.
He doesn’t seem to hear any of us when we tell him no. We go to him, pick him up and tell him no, this is unacceptable, no throwing. If he does it a second time, he is picked up and held in timeout. He will not sit in timeout on his own and we cannot leave him in a room by himself because he will tear it up.
Yesterday afternoon, it took 4 “timeouts” before he stopped throwing things. But at least it stopped.
He has also started head banging into you if you are holding him and he doesn’t get what he wants.
It is my hope that this is just a two-year-old testing his boundaries and since he can’t talk, he acts out in this manner. He does well listening and following directions when he is first awake during the day. As the day progresses, his moods change. He definitely does better if he can nap during the day, but he wants to nap around 3 or 4 pm in the afternoon and that is way too late in the day for him to nap. I think we are going to have to change our waking habits and get up earlier in the day than we are now.
I need to get him into a better routine of waking up and going to bed since he will be starting preschool in the fall. Right now we are looking at preschool and headstart 1/2 day each for full days. This will give him more structure and help with the hyperactivity.
It breaks my heart that he throws things and hurts other people. He is one of the most lovable children I have ever known. He is always “kissing boo-boos” on others and if he knew what he was doing, he wouldn’t do it. That’s not in his nature.
New Beginnings (Written on 03/07/2017)
Today we charted a course for one of many new beginnings for Tyson. He was observed in our home by the school psychologist and speech-language pathologist in the ongoing process of determining where he will be placed in the preschool program and what type of services he will be in need of. So many questions, that you can answer without even thinking, and then other’s I really had to stop and pause and think about. I thought he only had 10 words maybe, turns out he has about 15-I am so excited for him!
He showed that he has moments he can focus and listen and do tasks asked of him and other times, he doesn’t ‘even acknowledge hearing you. They learned that he does have a problem with throwing objects, at any given time. If it was only when he was angry, it might be easier to understand, but right now, it just appears to be some type of input he is needing and that is definitely not good input or safe input.
I worked with him on his throwing items this afternoon. Each time that he threw something, I would get up and take it from him. I would tell him no in a firm voice and I would direct him to his trampoline and tell him to jump. He would jump and when he was done jumping, he would go play with blocks or another toy. It’s being consistent that is the most difficult for me. Doing my best to make sure other family members are doing the same thing when he throws objects. He doesn’t listen or responds to being told no. However, I do think that he does know what it means. We witnessed a tantrum while the school officials were here; after he was told no.
Pride swells in your heart when you see the child you love complete tasks they are asked to complete. And when they aren’t sure, you know it’s only a matter of time before they understand.
So, next week will be more intensive testing at the school in the school setting. He will be evaluated for autism in the school. It’s been a while since his official diagnosis and in order to understand exactly where he is at, now that he is older, the ADOS will be done again.
I am excited for him and nervous too. But I know that more than anything, he will succeed. I have complete confidence in him. Because I love him and he is perfect in every way. God doesn’t make mistakes.
Thanks for following us on the journey and encouraging us along the way. Much love and blessings to all~Me & Mr. T
Mr. T = The Destroyer (Written on 03/31/2017)
Tyson has been quite the destroyer lately. His newest skill is not anything anyone would be proud of, but I know it has to do with sensory seeking, so we are trying to find new ways to teach him to get input he needs.
As much as I would love to place him in a time-out chair or corner, getting him to sit still is next to impossible. The only time he sits still at all is when he is asleep or in his high chair for eating. We don’t want to use the high chair for punishment or he will not want to sit in it at all.
Last night he had a battery operated light that you can push to get it to come on, but the batteries were dead. So he took a book of his and beat the life out of the light before I realized what he was doing and small plastic pieces were all over the living room floor. The only recourse I have found that works are to take the objects away from him and do my best to restrain him in my arms for several minutes until he realizes that he is in timeout.
Speaking with his Developmental Specialist today from Play Project, she said it is definitely a sensory issue and it more than likely has to do with proprioceptive input (body awareness).
So, my question to all of you that deal with children on the spectrum who continually hit, kick and break things, what methods do you use or have found helpful? Any input would be greatly appreciated. He was always so happy- go- lucky until most recently. It’s so hard to watch. Due to Tyson being nonverbal, it’s really hard to figure out if he is trying to tell us something with that type of behavior.
On a more positive note, his problem-solving skills are comparable with other children his age. He loves to turn the light switches on and off and if he cannot reach them, he finds something to use to reach them or climbs on something to turn them off and on. He loves working with puzzles and figuring out which piece goes where, etc.
I found a great website http://www.teacherspayteachers.com where you can find many different activities to do with children of all ages and needs. You may want to check it out and you do not have to be an educator to use this site.
Until next time, many blessings from me and Mr. T!
Preschool in the Fall (Written on 04/09/2017)
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!
Building Vocabulary (Written on 05/12/2017)
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 about 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 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 http://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!
Keeping Track (Written on 05/30/2017)
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 documentation 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.
The Big Yellow Bus (Written on 06/07/2017)
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 was 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!
A Year Later (Written on 07/15/2017)
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 gone 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 waiting 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 solely 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 start 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 to be 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!
Time For School (Written on 08/26/17)
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 with 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 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 http://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 http://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
9 Weeks Already (Written on 10/05/2017)
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! Shocked
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 http://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 is 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. http://www.saensorylife.com
Thanks for stopping by! Blessings from me and Mr. T.
To read more about Autism Spectrum Disorder, Attention Deficit Hyperactivity Disorder, Epilepsy, Sensory Processing Disorder, and Mixed Expressive-Receptive Language Disorders, please go to the main page of this blog. When Tyson was diagnosed in July of 2016, it never occurred to me that he would have other Neurological Disorder diagnoses. While he faces many challenges, we face them head-on. We love the Lord and trust He is always in control and guides us in our lives. He places people in our lives to help us on this journey.
May you know that Jesus Loves You! He can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith