My Boy: The Story Continues..

Meeting with the social worker today went well.

Jorge has been displaying odd behaviors of hissing, sucking his arm, putting hand sin his mouth and other oral fixations; so this was a great opportunity to have a chat and ask questions.
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I have my undergrad degree in Child Studies, it can be difficult to come up with solutions that may help my son. I do not know what it is. I think that happens with a lot of us. I can remember at times it was easier for me to deal with 22 4 and 5 year olds than to handle the meltdowns of my son while dropping him off at pre kindergrten. (He was in the classroom upstairs and the classroom where I taught was directly under his at that time.)The meeting was something that happens before a child turns 6 years old. It is to see if the child would still be available for the services at school. This is different from an IEP meeting. Our IEP meeting with his teachers, therapists etc is coming up in 2 weeks. Today it was just with the social worker to discus all aspects of Jorge’s life from birth until now and focusing on his diagnosis of Autism. It was also a family history for me and my husband. The two of us were at the meeting.It went really well. I enjoy having the opportunity to speak about our son – his achievements and progressions but more so what it took to get to where he is today. It is about the journey. I am fascinated with my son’s journey, essentially it is our family’s journey but he owns it. We are all in this together. The time flew by while we were at the school. It was enjoyable. We are very happy and blessed that our son is in a great school that provides services that benefit him. This is what happened because we did not give up. We did not settle on his education. We kept pushing and going forward, stopping at nothing to ensure our son would thrive instead of dive. We took matters into our own hands and were lead by faith. It paid off as it always does. It inspires me to help other families and give them hope; to let them know that autism is not a life sentence. I want to reach out to parents with children on the spectrum, to share stories, give advice and to lend a hand on an ongoing journey. As much as I love writing about my son’s journey, I have the passion to instill peace and hope into others that may be all new to this autism thing among others who may have lost hope along the way. never, ever give up. Always give everything, but up.

As you are here for me, I am here for you.

UBUNTU

Dany Loor BSCS, M.Ed.

Martial arts basics
Never stop learning:Never stop teaching. That is my motto.

My Boy: Part 68

Long weekend for Jorge Juan, I repeat, long weekend for Jorge Juan. In all ways, it sure was a long weekend for my boy from having Friday and Monday off from school for a total of a four day weekend…he was a little off of schedule. Today he woke up for school just a little crabby but yesterday he had a huge meltdown. He could not wait at all for anything and did not have any patience. He was overly sensitized. He was grumpy. When I looked at him, he was not “here” with me but in his own world. It was super hard but I tried to comprehend. I had to ignore him yelling and screaming. I told him to wait while I finish eating to take him outside. He was in pure meltdown mode. I eventually took him in the bathroom and wet his face with cold water and told him to take deep breaths. It was way much. He was red from sweating and screaming. He calmed down just a bit but I was not caving in. I saw in his eyes he was hurting but I did not know how or what would really help him. I finished eating then took him outside. I really wanted to send him to his room but it was so hot and by that time I wanted fresh air myself. Once he got outside he was running and feeling better but I told him that I would not be playing with him at that point. Later on he gotten better. He was feeling okay. The running in the fresh air soothed him a bit. We had watermelon and his smile was back. At dinner time earlier, he was being Mr. Crabs also. After playing in the sun, I gave him a nice bath. He fell asleep shortly after only to come running to our room about 2 am because he said he did not want to be alone. At that time I caved in because he hugged us very tight and said he loves us. Earlier Saturday, at Grandma’s house, he had a meltdown over a ball of yarn. He wanted it as if it was the best toy ever. He became attached. For some odd reason that I am unsure of. Anyhow when we got home, i threw the yarn away. He cried for a bit because he wanted it so much. It was in the trash and that is the premise of how he got to go outside. Actually , he there it in the trash, unwillingly but his desire to go outside was greater. Sunday, we stayed home all day. He was OK. a little crabby here and there. On Saturday, we had a community day at karate school. He was a little off at first. Getting impatient waiting in line to get his face painted. He started licking, spitting etc. I kept my cool. After a while he was OK and was able to enjoy the rest of the carnival day which was good. At first a lot of playing with saliva, it was annoying. This behavior is gross and i am not sure where it came from or how it developed but I did not want to leave and take him home. He needed to be around other kids and enjoy himself despite being grumpy. Going back to Friday, a day off from school, from what I can remember, Jorge Juan had a swell day. Nothing major to report. Nothing unusual of the day from the perspective of a child on the spectrum. Wooo. I am glad that he is back in school. I need the breather but as well he needs to be in his school environment where he must adhere to rules and be on his schedule.

 

Oh yeah, there was flapping too. As he told my husband and me, the other night, that he can not stop his flapping and he really does not know when he is doing it. He just does it because he is excited. I did get teary eyed when he told us. It was so sincere. At that time I just wanted to put him in a bubble to protect him from the world.
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My Boy: Part 67

Some Fun Facts about JJ…

He likes small and tiny toys and figures.

He likes to put those toys and figures inside plastic bags, socks, ziplocs, bookbags, pouches or whatever else can hold something.

He always has to have and hold something small inside of one of his hands. Whichever hand he is holding something in, he will use the other to write if he needs / has to do so.

He is very sensitive to loud noises and bright lights / sun. He will cover his ears and eyes when exposed to either one.

He flaps out of excitement.

He lines up his toys.

He loves to read.

He is a morning person for the most part and can be sometimes crabby after school for the first few minutes.

He has many little obsessions at a time such as Angry Birds, Star Wars and Mario Brothers.

So..what do you want to know about JJ? Ask away..we look forward to your questions and will reply to you.
Thank you!!
P.S. The questions and answers will help in brainstorming and preparing for a part of the book I plan on putting together for Jorge’s Autism Journey. The above fun facts were just something quick that I could think of from the top of my head. Let me know what you would like to know. I appreciate your time and interest.

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An Autism Journey…

Hello everyone!!! I have been writing about my son and his autism journey from last September. My blog posts have sparked a fire in my heart to write a book on it all- from the very beginning until now. I would love to get it published. I would love to share our story in hopes to inspire others as well as educate.I want to let others out there know that autism in not a life sentence or a disability. I want to let others know that there is hope. Autism is a spectrum and no two on it are the same. I want to let others know to believe and keep the faith when things are tough. I want to let others know that our children need us and we must be their biggest fan, supporter and advocate. I am gathering information, researching and beginning to take off with this plan. Let me know if I have your support. It is very much needed and appreciated. Thank you all for reading. I appreciate comments/suggestions.
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Dany Loor  BSCS, M.Ed

My Boy: Part 66

We had to talk to Jorge Juan again about kissing girls at school. His teacher sent another note home about him chasing girls at recess. He was said to be running after them trying to get some kisses. He was in timeout but once that was over he would go back and do it all over again. he told us the girls asked him to marry them so he said yes and when he wanted a kiss, they ran from him. Second time this year this has happened. We talked to him. He understands. He is a lovable, affectionate child. We had to be careful with our words as we did not want to discourage him being able to express himself and show care towards others especially since he is sensitive and takes things literally. And so “they” say children with autism lack empathy and so on. I say BLAH BLAH BLAH. One does not know autism unless and until you live with it everyday. 

He said I am his best mommy in the world. He writes love notes to me and my husband. He is sweet and thoughtful. He is kind and generous. He is on the spectrum, that is his autism. Unique, but still part of the puzzle. He has been busy planting seeds, taking care of his pets, reading and homework. Lately he has been putting his small toys into plastic baggies. He has put them in socks and other places before. I find little things hidden in strange places but i see ore often now little plastic figures in Ziploc bags, zippered pouches etc. He likes to carry his stuff sometimes in a plastic shopping bag, collecting items along the way.Lining things up. Very eclectic. The obsessions vary from time to time. He woke up this morning and I found him on his bedroom floor reading Transformers. then he became fixated and wanted to have his transformer toy and searched for it in his room emptying his toy box and probably moving his bed , again. Yes he does that. He has a million and went seven toys but when a specific “thing” enters his mind, there is no stopping him.

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My Boy: Part 65

Meltdowns are not the same as tantrums. It is hard to explain to someone who does not have a child on the spectrum. Meltdowns come form sensory overloads among other things. For example, Jorge Juan had a meltdown on Mother’s Day because he wanted, he just needed to have, to be in etc. an old plastic Fisher Price Police car. He just became instantly obsessed when he saw it at my sister’s house in the garage. He was in it but when he went to do something else and wanted it back, his cousin was already in it. that did not matter to him. He cried, screamed, lost his breath, hiccups and all. I was calm throughout but others who may have seen him must have thought he is a brat or spoiled and that is not the case. He was very stimulated. He needed that car for some reason, to make him feel better. I can not really explain it but as his mother I know the difference between him being “fresh” and him not being able to control his emotions due to a sensory overload. There were lots of kids around him. New people, sights and smells. He could not deal. I had him trying to deep breathe and catch his breath. I told him that he had to share. at this point it did not mean much to him because he was already over it. After things calmed down, he was able to get back in the police car and he played. He was calm and very thankful but in the midst of all of the commotion I tried to understand and protect him fully. It was a meltdown because he was not looking for my reaction and he was not mindful of his own safety. He was not in control of his behavior. It was like it was not “him” but something else pushing him to have that reaction. He was not trying to communicate his needs, it was like a takeover of sorts. A tantrum is different. After all of that was over, he did not calm down right away. It took a bit for him to get his body and emotions regulated. That was autism on that day. Each day is different. Many times, something new and improved and other days, a different story.

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My Boy: Part 64

What a great weekend. Friday was Jorge Juan’s ceremony for the student of the month. He was very happy and excited. He was equally super happy for the other children in different grades as well. He was clapping, woo hoo-ing and all that jazz. It was cool. He picked the name out of the hat for a raffle and was interacting with the other children and teachers as my husband and I sat back and watched him. The principal cut his sausage and pancakes for breakfast and we noticed that he was using his left hand to eat. He still is using both hands a lot but that is fine as long as he is able to do his day to day tasks and function. He is such a blessing because he was excited, to say the least about my graduation the next day, (this past Saturday) and Mother’s Day too. He behaved super well. He had a good time and was happy to take pictures. The noise of the music did not bother him that mush this year at it did at my Bachelor ceremony.

Jorge Juan is becoming more independent each day. He is getting himself dressed, almost in completion now. He mostly puts on his shoes and washes his body when he is in the bath. He brushes his teeth by himself and requires help sometimes. He is learning how to independently wash his face. It is amazing to see the things he does now when years ago he did not speak, let alone do half of these things that many people may take for granted. From a young age, he always worked an iPad or iPhone with ease but something as simple as picking a spoon up to eat was very difficult for Jorge Juan. He could read before he was potty trained fully. He could recite the alphabet and count backwards from 10 to 1 before he could put on his shoes. Never once, losing hope. Always, forever gaining strength. He is stronger than autism.

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My Boy: Part 63

Jorge Juan was chosen for the student of the month. He is very excited and we are very proud of him. It makes a mommy feel good to know that her son is student of the month despite being on the autism spectrum. It is really great and we are thankful to his teacher that nominated him for the title Kindergarten student of the Month.The awards ceremony will be held on this Friday.He has been doing very well the past two days in school which is especially grand because he missed last Thursday and Friday and went only an hour or so on Wednesday due to having a fever. He shot back up to being himself in no time. Now he has been back to flapping more often. At church on Sunday, he was stimulated. As we were in line going fro communion, he was standing in the center of two lines pacing back and forth and flapping happily. I gently put my hand on his shoulder to come back in line in front of us. He repeated the behavior a few more times. I do not know if people were judging him not knowing his situation or what but what I can say is that I would never stop my son for being himself and doing what makes him comfortable and happy even if no one understands it at all. Who knows or cares if they thought he was a small child acting out..not me. God knows my son. That is all we need there.He did well at karate the past two times except for the hand in mouth thing which now seems to be dwindling away. It will get better. He has done his homework. He has been reading and overall well. He wakes up without a problem but once he gets to brushing his teeth or getting dressed at times there is stomping, grunting, No but it gets done. He brings his lunch bag and is happy about that, it gives him yet another thing to look forward to. Cherry tomatoes, raw baby carrots, snap peas,crackers and yogurt, it is what he loves to take with him to school. He plays for  a few minutes outside before he gets on the bus . This morning he discovered my noise canceling head phones and wanted to wear them to school. I told him after school he can because they can get lost. He was OK, only a little upset but better than the meltdown any ole day. He is happy, today is occupational therapy at the rehab center and he love sit. He enjoys going early to play with the kids in the waiting room. Oh yeah and he told me and my husband that he fell in love with two girls at school yesterday while having recess at the playground. He kissed them, yes he did . The teacher sent a note home to me about that. It was cute and funny. This goes to show people that children on the spectrum can be empathetic, sympathetic and show their feelings.Image

My Boy: Part 62

3 places we went today and 3 meltdowns. Yes, it was sensory overload to the fullest. One being because he became attached to a plastic sting ray toy in the dollar store and I told him he could not have it. After that, it was major break down. He just had to have that toy, for some reason. I will admit, sometimes I do get him a small toy or something that he becomes attached to in a store if he in that enthusiast about it, but definitely not today. This was the second meltdown of the day. Teh one earlier being on the way back from Walmart in the car on I95 driving. He was already upset because i would not get him something at the store, I al;ready forgot what it was anyhow…He was screaming in the car, yelling and shouted that he was going to fire all of the people in Walmart and fire all of the people in the world. Then, Then..just then, he said he was going to fire me, yes he did. He said if I did not get him everything he wanted, he was going to fire me. Then he even added, “Do you understand me, Mommy..Do you hear me, Mommy?” I just totally ignored him while driving. He keep going on for a bit an I kept ignoring . It worked cause he got tired and stopped an did did not lose my breath yelling at him or getting angry. It was an overwhelming day for him, well at least a portion of it was because he started the day off great by painting and doing crafts. He had a good time at karate and then Boom. I am grateful that this does not happen quite as often as it used to.Boy, I do not miss it but I thank God that he was able to calm down at home where he then ate and relaxed.He did apologize to me for being a naughty boy and said sorry for hurting my feelings. Today was a day that I remembered he has autism where many days I can tend to almost forget, ya know. He was flapping and doing this thing with the mouth. Lately he has been having an oral fixation- fingers and things in his mouth. For the remainder of the day he watched TV and played. He went to bed with a cool night light he found in the garage. His own bed, alone and he did not even need a story. He just told me to check on him and of course I will, I always do. Everyday, especially the meltdown segment in today, I try to gain more patience and get a deeper understanding of autism and what it actually does to my child. My son is a happy child and he deserves the world. I just could not give it to him today. I did not punish him because it may get confusing trying to understand the whole autism side of things. But he is getting it, hopefully. I just talked to him, then I ignored him. That worked today at least. What a difference from yesterday’s outing at Barnes and Noble where he was calm and cool. He played with toys and put them away with no problem. Whatever it is, I pray that he does not feel anxiety or pain.I want him to experience peace and overcome autism.

I am going to have to make him a calming sensory bottle. I have seen several of those projects on Pinterest, if you know of any, let me know.Thank you. I am thinking putting his little animals and the tiny things that he really loves inside the bottle so he can see them float all around when he shakes it.

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