Honeybunches' teacher wrote a long note in his Communication Book today. It said:
"I think today was the day he realized that Mr. N was really not coming back. He started out okay at morning meeting but then refused to come over and join the group. We worked threw that but he did lose sharing his animal. He was okay during snack, Math and most of Reading. After we took our spelling test he became very silly. When we ignored that he upped the anti. He began making silly noises and really disruptive. He was given a choice to stop or lose Pokemon. He replied that he didn't care. Ultimately he ended up being escorted by Mrs. P (Class aide who is restraint trained) and myself to the time out space. At first he wanted nothing to do with telling me what was wrong. Eventually he admitted he was sad that Mr. N is not here. I told him that was okay. We went for a walk and when he came back to the class he was okay. He had a rough afternoon. He became very disruptive in class again. Only this time I moved the children out of the room. I stayed with him in the classroom. I had a hard time getting him to express how he was feeling. So I started drawing circles with different facts on them. This at least got him to pay attention to me. Once I got his attention I asked him to tell me if he was angry. He said yes but didn't know why. I asked if he was mad at me. He said no. I asked if he was mad at Mrs T. He said No. I asked if he was mad at Mrs P. He said no. Then I asked if he was mad at Mr. N. He said no. He could not tell me he was angry. He just kept stabbing his paper with his pencil. He got himself in the finger. We washed it and put a band aid on his cut. While he was stabbing the paper he told me that the paper was telling him to stab it. That was actually when I asked him if he was angry. He also said the people were dead while he was stabbing the paper. Once he admitted he was angry he began to de-escalate. He did lose free time and we talked about that too. We also talked about bringing back the circle chart. He thought that might help him next week. I will work on that this weekend. Despite everything that has happened. I think overall he had a great week. It breaks my heart when I think about how he must feel without Mr. N. by his side, but I am sure he will build a good relationship with Mrs. T. She has been great with him...."
It sounds like he might have been going through emotions and testing today. This morning he was fine. Yesterday afternoon he was a bit irritable, but didn't have any major issues.
I heard from the SPED director today. He contacted somebody from an alternative school in our area to schedule restraint training for Honeybunches' 1:1 aide. His teacher is interested in taking it too. The SPED director also apologized for the way things happened with Mr. N.
We have his IEP Meeting scheduled for the 24th of this month where I plan on going over how he is transitioning to the new aide, any concerns regarding that, possible placements for next year (5th grade supposed to be a different school), transportation for next year (The 5th grade school is close enough so he is supposed to walk because we live .9 miles and 1 mile gets a bus), and updates on progress from his teacher and providers at school.
This is the journey of Honeybunches. He is a 13 y.o who has Autism, Bipolar Disorder and NASH (A liver disease). I'll share our challenges, inspirations, hopes and dreams of raising a child with special needs. I hope to inspire others through sharing my experiences, writing, poetry, tips and resources I've found beneficial.
Friday, October 12, 2012
Tuesday, October 9, 2012
Day 1 with new aide
The 1st day with Honeybunches' new aide went well. Mrs T came to the bus stop early which was good. Honeybunches did remember her from his class last year once he seen who she was. He did a great job helping her learn his schedule. I like how they let him do that, so he still felt in control a bit.
My stomach was in knots this morning. I have a habit of worrying too much. With his old aide I didn't worry after he was with him for a few months. Then I had almost 3 years of much less worries lol. I trusted him fully with Honeybunches' care. Maybe after a few months I'll trust her too. (If she lasts that long because Honeybunches went through 5 aides in K before finding Mr N at the beginning of 1st, but was also a different child back then.) I hope she likes a challenge~!
I expect him to get a feel for her before the testing begins. He always has a "Honeymoon period" 1st to study people before testing them. The question is not if he will test her but when, how, how intense the testing will be and how she will react to him. (The reactions he gets from people is what either fuels the fire or puts it out...) Either good reactions or bad ones both work for him. He just loves reactions from people and has always looked like he studied them from infancy. The more intense the better lol. Hopefully she'll know to remain calm and pass his test.
His teacher Mrs Understanding sent me an email saying "I just want to reassure you that everything will be fine and (Honeybunches) will continue to thrive in our classroom". I found out today that while neither the teacher or his new aide have restraint training another aide in the classroom does. His teacher is going to ask the SPED Director if she can receive that training.
This afternoon at his outside counseling appointment, I gave the counselor a letter to let her know about the cat dying and Mr N being laid off. She talked to him a bit about both. He made Mr N a card that says "Dear Mr N... I hope you come back soon. Love ----". That was so sweet. By the way Honeybunches was talking about it, he thinks Mrs T is just with him "Until Mr N comes back". IDK when he thinks he is coming back, but he thinks he is. IDK how to explain this one to him. I told him he might not come back. He doesn't understand "Might". I don't want to tell him he is not coming back because then if he does come back I would have lied to him. I can't tell him he is because then I'd be lying too and he'd also get his hopes up. This is a horrible predicament with us left picking up the pieces from the school district's mess.
I can see why he gets frustrated with his counselor sometimes. I went in with him and had to play translator. She could not understand him very good today. He was talking fast and mumbling a bit, but I knew exactly what he said. That kind of reminded me of the old days when I used to have to translate for everyone. Mommy just knew 95% of the time, when his words were incomprehensible to others. His speech is so much better than it used to be, but when he gets nervous he talks fast and quiet which does make it harder to understand.
My stomach was in knots this morning. I have a habit of worrying too much. With his old aide I didn't worry after he was with him for a few months. Then I had almost 3 years of much less worries lol. I trusted him fully with Honeybunches' care. Maybe after a few months I'll trust her too. (If she lasts that long because Honeybunches went through 5 aides in K before finding Mr N at the beginning of 1st, but was also a different child back then.) I hope she likes a challenge~!
I expect him to get a feel for her before the testing begins. He always has a "Honeymoon period" 1st to study people before testing them. The question is not if he will test her but when, how, how intense the testing will be and how she will react to him. (The reactions he gets from people is what either fuels the fire or puts it out...) Either good reactions or bad ones both work for him. He just loves reactions from people and has always looked like he studied them from infancy. The more intense the better lol. Hopefully she'll know to remain calm and pass his test.
His teacher Mrs Understanding sent me an email saying "I just want to reassure you that everything will be fine and (Honeybunches) will continue to thrive in our classroom". I found out today that while neither the teacher or his new aide have restraint training another aide in the classroom does. His teacher is going to ask the SPED Director if she can receive that training.
This afternoon at his outside counseling appointment, I gave the counselor a letter to let her know about the cat dying and Mr N being laid off. She talked to him a bit about both. He made Mr N a card that says "Dear Mr N... I hope you come back soon. Love ----". That was so sweet. By the way Honeybunches was talking about it, he thinks Mrs T is just with him "Until Mr N comes back". IDK when he thinks he is coming back, but he thinks he is. IDK how to explain this one to him. I told him he might not come back. He doesn't understand "Might". I don't want to tell him he is not coming back because then if he does come back I would have lied to him. I can't tell him he is because then I'd be lying too and he'd also get his hopes up. This is a horrible predicament with us left picking up the pieces from the school district's mess.
I can see why he gets frustrated with his counselor sometimes. I went in with him and had to play translator. She could not understand him very good today. He was talking fast and mumbling a bit, but I knew exactly what he said. That kind of reminded me of the old days when I used to have to translate for everyone. Mommy just knew 95% of the time, when his words were incomprehensible to others. His speech is so much better than it used to be, but when he gets nervous he talks fast and quiet which does make it harder to understand.
Sunday, October 7, 2012
Honeybunches 1:1 Aide of 3 Years Laid Off
Thursday Honeybunches came home from school early. The school said he had a headache, wasn't eating, kept his head laid down on his desk and refused to go to the nurse. Once home besides not having as big an appetite as usual and being a little less hyper he was fine. Friday he had diarrhea twice in the morning so I kept him home. Good thing I did because I would not have wanted him to be at school with the chaos that happened.
Friday the SPED Director called me. Honeybunches 1:1 aide who has been with him since the beginning of 1st grade, so for the past 3+ years got laid off. :( :( :( </3 </3
He explained it as last school year the district did some lay-offs. They chose to lay off the wrong way. They kept the ones with special training, like Honeybunches' 1:1 who had restraint training and other training related to his diagnoses. They laid off others. The aides who got laid off contacted the union. The union got their lawyers. The lawyers demanded the school district re-hire those people and lay-off based on seniority only. I guess Honeybunches' aide has not been there as long as others, so he had to be one of those who got laid off. Although he was with Honeybunches for 3+ years, he was down on the totem pole I guess. Honeybunches struggles with changes and transitions. They didn't even give this a transition. It was basically he got laid off Friday, was all done Friday, and the new aide will begin Tuesday. (There is no school here on Monday cause it's a holiday.) No prior notice. Just done. That's what frustrates me the most about this whole situation. No transition. No letting his aide who he was very close with a chance to say "Good-bye" and explain the situation. Just done. It sounded like these lay-offs happened in the middle of the school day, as the SPED director called me about noontime sounding like things just happened. I'm glad he stayed home that day! The SPED Director said his aide is "Distraught" because he bonded so well with Honeybunches. I know he loved Honeybunches. I think I might request that they don't leave the same aide with him for that long again. The change might just be too much for him. We shall see how this goes.
When I told him the news about his aide on Friday he said in the saddest voice "Please lock my door and leave me alone". Then DH asked him if a dollar would make him feel better. Honeybunches said while crying "No but maybe two dollars will". LOL Little con!
In all seriousness again, I wonder how these changes will affect him.
The aide was a crossing guard. When the SPED Director called me there was some mix up about how she'd ride the bus with Honeybunches because of that. The new aide called me herself to discuss Honeybunches. She said that she resigned from her position as the crossing guard so she can be "All (Honeybunches)". She only lives a half mile from us so she said she'd walk over to take the bus with him in the mornings. Then she'll ride home with him in the afternoons (But stay on the bus to proceed to another school where she does an afterschool program). I told the SPED Director that I expect the new aide to stay in close proximity to him. His old aide gave him some space at recess, but with these changes that would not be a good idea right now. Honeybunches is having a really hard time understanding what "Laid Off" means and why his previous aide won't be working with him anymore. I told him the school district can't pay him anymore. Even that was too hard and confusing for him to grasp.
Friday the SPED Director called me. Honeybunches 1:1 aide who has been with him since the beginning of 1st grade, so for the past 3+ years got laid off. :( :( :( </3 </3
He explained it as last school year the district did some lay-offs. They chose to lay off the wrong way. They kept the ones with special training, like Honeybunches' 1:1 who had restraint training and other training related to his diagnoses. They laid off others. The aides who got laid off contacted the union. The union got their lawyers. The lawyers demanded the school district re-hire those people and lay-off based on seniority only. I guess Honeybunches' aide has not been there as long as others, so he had to be one of those who got laid off. Although he was with Honeybunches for 3+ years, he was down on the totem pole I guess. Honeybunches struggles with changes and transitions. They didn't even give this a transition. It was basically he got laid off Friday, was all done Friday, and the new aide will begin Tuesday. (There is no school here on Monday cause it's a holiday.) No prior notice. Just done. That's what frustrates me the most about this whole situation. No transition. No letting his aide who he was very close with a chance to say "Good-bye" and explain the situation. Just done. It sounded like these lay-offs happened in the middle of the school day, as the SPED director called me about noontime sounding like things just happened. I'm glad he stayed home that day! The SPED Director said his aide is "Distraught" because he bonded so well with Honeybunches. I know he loved Honeybunches. I think I might request that they don't leave the same aide with him for that long again. The change might just be too much for him. We shall see how this goes.
When I told him the news about his aide on Friday he said in the saddest voice "Please lock my door and leave me alone". Then DH asked him if a dollar would make him feel better. Honeybunches said while crying "No but maybe two dollars will". LOL Little con!
In all seriousness again, I wonder how these changes will affect him.
The aide was a crossing guard. When the SPED Director called me there was some mix up about how she'd ride the bus with Honeybunches because of that. The new aide called me herself to discuss Honeybunches. She said that she resigned from her position as the crossing guard so she can be "All (Honeybunches)". She only lives a half mile from us so she said she'd walk over to take the bus with him in the mornings. Then she'll ride home with him in the afternoons (But stay on the bus to proceed to another school where she does an afterschool program). I told the SPED Director that I expect the new aide to stay in close proximity to him. His old aide gave him some space at recess, but with these changes that would not be a good idea right now. Honeybunches is having a really hard time understanding what "Laid Off" means and why his previous aide won't be working with him anymore. I told him the school district can't pay him anymore. Even that was too hard and confusing for him to grasp.
I wrote the Superintendent about my concerns regarding this situation. He wrote me back and said:
"I
am very sorry about what has taken place, and a bit disgruntled too.
This was outside of my control, as (SPED Director) explained. I know that Mr. N
worked very hard and very well with (Honeybunches), and if funding comes
available in the future I will do all that I can to get him back. Do
not hesitate to call
me if there are any issues with the change. I will overlook what is
happening with (Honeybunches) myself!"
All this after I wrote the Superintendent a lovely email Thursday
saying how impressed I am with everything he's done for the school
district, how wonderful everyone has been with Honeybunches, how lucky I am that he
gets his needs taken care of right here, how proud I was of Angel
getting "Advanced" and "Proficient" on her 10th grade MCAS etc.
I wrote
another letter Friday telling him I'm not so happy anymore, how he struggles with no men around, how transitions are hard for him, how these changes can throw him into a depression and cause him to have major issues. I also told him how wonderful his last aide was, how he not only knew his needs, could read his body language so he could prevent things from happening before they did and he was also an excellent advocate for him.
I typed up the new aide a 3 page "Intro to Honeybunches". I really hope she takes the time to read it as I made the time to write it. Chances are Honeybunches will test this new aide to see how she'll react and what he can get away with. DH and I are both concerned about how Honeybunches will do without a man in the room. When DH goes away he has a hard time controlling his body. Even in counseling sometimes when he struggles, his counselor will call a man counselor to the room and he'll change up real quick. For whatever reason he just needs that male figure around him.
Then I wrote another (Yup the 3rd) letter to the SPED Director and Superintendent requesting that the new aide receive training about Honeybunches' Autism and Bipolar diagnoses as well as undergo Restraint Training. I made it clear that nobody is to touch my son without the proper training unless it's an emergency situation.
I wrote both his aide and teacher about expecting him to test the
new aide to see how she'll react and what he can get away with.
Yesterday while Honeybunches was outside riding his scooter up and down the sidewalk he came into the house screaming that he thinks "Jinn got hit by a car." Yup the cat was lifeless lying in the middle of our busy street. Jinn was our outside cat. He was Angel's favorite. With Honeybunches being the one to find him, I know it affected him. We were in the store later that day getting cat food for our other cats Mystery and Sunny. Honeybunches said "Draco likes this kind". Draco was another cat of ours who got hit a few years ago. I think Jinn getting hit by a car reminded him of Draco, whom he was pretty close with. We've lost a few cats to this street. The speed limit is 45 but cars go more like 60 past our house. Hopefully our other two cats who we've had since they were 6-8 weeks old and that have never gone outside will be safe.
So between losing Mr N and him finding our dead cat, I know this weekend must have been harder on him then it seems to have been. He is like me in some ways. He does a good job hiding his emotions sometimes. I believe it is affecting him though, because yesterday he woke up at 4:30 and stayed up until 8:30 without any naps. That's a very long day. Lately for the past year or so he has been getting up at 6-6:30 so 4:30 is not normal for him. His mood seemed okay today though.
We have some new neighbors. This couple with a six-year-old girl H moved next door. Honeybunches and Princess have been having a lot of fun playing with her. Yesterday I guess he yelled at H for riding his scooter, but she came back today to play with him so I guess she is forgiving.
I
also miss my father who passed away on May 1st a lot today. My b-day
is coming up on the 15th and it will be the 1st one without him. He has
sung to me every year. It just won't be the same without him. This has been a hard weekend for me.
I am worried how not having Mr N with him will affect Honeybunches. I worry how his days will go without him there. Like the SPED Director voiced in his worries while telling me the news "I don't want him to go backwards".
I was planning on sending in the $$ and application to take testing for my CNA license again. I chose to hold off on that for a few months now because of these changes at school. I want to see how the next 3-6 months will go for Honeybunches, before I decide to go back to work. I figure it would be better to wait until I'm sure it would work out.
Momma bear has come out of hiding. I have not been sleeping well. I've been thinking of everything we can do for him to make these changes go okay. That includes writing letters, making demands, paying close attention to his transition, seeing how it affects him, and all that fun Mommy/Advocate stuff. I think I'll keep a log of how his days go, any incidents since the change, etc.
Thankfully we're due for his Annual IEP Review at the end of the month. I sent a letter requesting that too. I asked to hold it as close as possible to the IEP expiration date so that way we'd have a chance to see how he is adjusting to his new aide.
Thursday, October 4, 2012
Emotional Supports For Children Workshop
Yesterday I was sponsored by somebody in our school district to go to a workshop on "Emotional Supports for Children". It was actually three workshops:
"Beyond Bossing, Begging and Bribing"
"Emotions Coaching"
"Movement Makes Sense"
This was run by the wonderful, funny, inspiring ladies of The Fitzgerald Institute. I learned a lot and wanted to share what I learned here in case others might find it beneficial too.
"Beyond Bossing, Begging and Bribing"
"Emotions Coaching"
"Movement Makes Sense"
This was run by the wonderful, funny, inspiring ladies of The Fitzgerald Institute. I learned a lot and wanted to share what I learned here in case others might find it beneficial too.
Movement Makes Sense:
This was an overview of Brain Gym. The hand-out I received about this states how "Brain gym empowers individuals to utilize their own brain power more effectively. It balances and integrates your whole brain through simple movements and exercises. As a result you are relieved of stress, especially stress related to learning and performance. You are also able to be more focused, organized, and centered in achieving any goal. This program was originally developed for children with learning difficulties...." We learned about something called PACE:
Positive
Active
Clear
Energetic
The steps to PACE are drinking water, doing "Brain Buttons", "Cross Crawl" and "Hook Ups".
Cross Crawl was standing up, lifting your right knee up to hip level, touching it with your left hand and switching back and forth. Cross Crawl is an exercise that is said to be a "Mid-line Movement" which is good for children who are tense or who have been through trauma. Doing the cross crawl is said to help with transitions, which is something I know most children who have diagnoses like Elijah does, struggle with. Other mid-line movements we learned were doing "Lazy 8s". Take a piece of paper. Draw a dot in the center. Using your dominant hand make a sideways 8 beginning on the dot and going up to the left. Then repeat with your non-dominant hand. Again with both hands. Neck Rolls is another option, as is belly breathing.
Hook Ups was putting your hands straight out in front of you, thumbs up, thumbs down, criss cross hands, intermingle fingers together, fold in upside down to the chest and hold it there for a couple minutes. At the same time place the tongue on the roof of the mouth. That is an important piece, because it releases endorphines which tell the body things are okay. Hook Ups is said to be good for "Deepening Attitudes". At the same time hold legs out or up and crossed.
There are also Lengthening Activities. One we learned which children will most likely like is called Owl. Make the lobster claw again. Message the shoulder opposite to that hand. Squeeze the muscle gently. Breathe in. Breathe out. Turn head. Repeat again, while breathing out go "Whooooo".
Energy exercises work with the mid-brain. They are said to be good for emotional well being and brain calming. Things such as Brain Buttons. Place one hand on the stomach and your other hand on the chest. Use the fingers and thumb on the chest hand to make a lobster claw. Message the area of your chest bone gently. Drinking water was also an energy exercise. Energy Yawn is another one which increases blood flow to the brain. Go underneath the ear on those bones with the index and middle fingers. Rub up and down trying to make yourself yawn. The "Thinking Cap" is one that works well for balance and auditory. Rub the ear lobes towards the ear going all the way down.
Beyond Bossing, Begging and Bribing:
Jeanine is so very funny and knowledgeable. If anyone has a chance to see one of her presentations I highly suggest it. It was awesome! I learned a ton in this workshop.
- All positive discipline begins with adult behavior.
- Only two things bring happiness. Those are character and having a life of purpose.
- All children are perfectly designed.
- There are no helpless children.
- Nagging is the fastest way to rebellion at any age.
- Although adults are taught to get to eye level with children, that actually doesn't work with some children because to them face to face equals a challenge. While important in speech and language, with behaviors eye contact is not important. Intermittent eye contact with eyes to shoulders is said to be best. Standing side to side is best because it's less intimidating.
- When people are given a direction they have a decision to make to follow it or not. If they do then it's all good. If not then typically parents repeat the direction an average of 3-7x. If children don't follow through with direction, parents often become angry. Once angry they usually either say something, do something or give in. Parents are said to give in 75% of the time because it is easier.
- When dealing with children we need to think of the proximity we are to them. Everyone in life has their own comfort zone.
- An "Effective Command" either gives 2 choices or says "It is time to" without options.
- It's important to deliver instructions about what we want children to do from a distance of 3-5 feet to teach personal space. We should have very little affect (Limit hand movement, keep hands below waist and neutral).
- Once instruction is delivered wait 10 seconds before repeating. This actually seems to be a lot longer than it sounds to be. Try it. You'll see! Then move to action giving consequences.
- We learned about the different parenting styles which you can learn more about here and here. The three types we learned about were Authoritarian, Permissive and Authoritative. Authoritative is said to be the best.
- There are 3 things we need to feel secure in life: 1. Rules that mean something... 2. Consequences... 3. Consistent Follow Through with those rules.
- "Few rules followed are better than many not."
- We should only have 3-5 rules such as "Ask before touching" instead of "Keep hands to self" because sometimes in life we might need to touch others such as to help them.
- If you can't figure an effective consequence to a behavior, that behavior doesn't call for a consequence. It calls for teaching.
- It's far more important to use positive consequences that begin with "I notice that....."
- Anticipate and prevent; Communicate, Set limits, Acknowledge and Validate Emotions (I hear what you are saying..."), Teach new skills.
- "If you don't listen to the whispers you force them to shout". This is talking about behaviors and how small things can escalate into huge ones.
- Discipline has two goals: To teach self discipline and to teach self control.
- We learned about "Logical Consequences". Examples of these are: When the child throws a ball in the house remove the ball; When a child spills milk he/she cleans it up; When a child refuses to go to school he must stay in bed all day with no television or entertainment.
- We need to teach children that "Your behavior is not acceptable, but I always love you".
- When put on the spot, use the STAR method: S=Breathe, Take 10, Say to the child "I need a minute to think; T= Think about what is really happening, what does the child need, and use positive intent; A=Use Active listening to understand the child's point-of-view; R=Respond by applying logical consequences.
- The best consequences are "Teaching consequences". For example if a child bites, have them help the person they bit feel better by getting an ice pack and holding it on the boo-boo.
- Stickers and Time Outs both teach children to think the wrong way.
- It's important to establish a parenting vision. When your child is 20 years old what traits and characteristics do you want them to have? Write a list of 10 and compare with your partner (If you have one).
- Parents need to stop fighting about differences and look for solutions.
- When children say "Leave me alone" it is important to do that if it is safe to do so. Often times parents nag children wanting to know what is wrong, but it is important to give them space and time when they say they need it.
Emotions Coaching:
- Impulse control is the most important skill we can teach children.
- Emotions Modulation: Intensity (Little vs Big), Feelings Thermometers, and using words children can relate to.
- Teach children effective, constructive ways to express emotions (Such as walking away, talking, exercising, alone time...)
- When children act up think if they lack social language, self regulation skills or if they have unmet needs (Hungry? Tired? Hot?).
- Children need quantity time with quantity interactions.
- Don't try to fix children. Adjust to them.
- The Dimensions of Attachment: Sensitivity (Reading cues accurately and responding accurately), Acceptance (Approval), Accessibility (Am I available?), and Cooperation (Work with who the child is not who you expect them to be).
- Emotional Regulation Sequence: Trigger (Internal or External) leads to Thoughts ("Not safe") which lead to Emotions, which lead to Actions, which lead to the Outcome.
- Handling Our Own Emotions: Engulfed (Totally overwhelmed, don't know feelings), Accepting (Understanding what the emotion is), Self Awareness (Knowing what emotion is and what the trigger is, then doing what we can to change the outcome).
- Handling The Emotions of Others: Dismissing and Disapproving (For example "Big boys don't cry" is disciplining a child for their emotions. This teaches the child "I will trivialize what you express"). Laissez-Faire: "Boys will be boys" letting kids express emotions however no boundaries). Coaching: Helping children label their emotions, acknowledging and validating feelings, teaching modulation (The intensity of emotions and how to calm self).
- We need to teach children the 4 basic emotions: Mad, Glad, Sad, and Afraid. It is not until age 12 that children can begin recognizing mixed feelings such as jealousy. In adolescence children begin understanding subtler feelings like love and hate. (Hey that explains why teens like to say "I hate you".
- Teaching Points: Everyone has feelings which are neither right nor wrong; Feelings come from somewhere and have triggers (Some examples of triggers are unstructured times, transitions, loss of power/autonomy, sensory overstimulation or understimulation which leads to frustration or boredom, rejection, or restriction of movement); It's not always easy to know what we feel; The body has an alarm system.
This workshop was very informative. The lady running it reminded me of a grown-up, female Honeybunches. She talked about her childhood. Some of the things she said sound just like him lol.
Thursday, September 20, 2012
Lots of Appointments....
Honeybunches' had lots of appointments lately.
Last Friday he went for his 10 year physical. That went very well. The nurse practitioner in the office whom we prefer to see cause she's E's favorite person was the one who did it. She was impressed how well he's doing and how good he looks. She said "Keep doing whatever you are doing with him cause he looks great". :) She was also impressed by how much his speech has improved too. He did awesome for me at his appointment and even waited patiently for the bus to come back to pick us up. I love how easy life is when we are at our magic # with his magic pill. If only it could stay like this lol. I always appreciate the good days and am very thankful for them. Honeybunches has gotten taller by a couple inches, but actually lost two pounds in the past year according to her...
On Monday this week Honeybunches seen his GI doc aka Gastroenterologist and the Nutritionist that works with him in the same office. The Nutritionist seemed happy because Honeybunches BMI went down a bit. The GI doc gave me heck because according to their scale Honeybunches gained 2 lbs in the past year and according to him weight gain is never good. According to his scale he weighs 117. According to the scale at the pdoc office he weighs 115. IDK. I am thinking last time they might have taken a few pounds off for clothing and this time they didn't. Whatever... He said for me to work harder at getting him to lose weight. Although he's on the Vegan diet, his cholesterol is still high as are his triglycerides. The Cardiologist he sent us too in the past said those were most likely genetic and from the Abilify he's on. The GI doc ordered another liver ultrasound in six months and a follow-up in six-and-a-half months. It was odd being at that hospital. That's where my father passed away back on May 1st. Amazingly I handled it much better than I expected. I thought for sure I'd either cry or have a panic attack while there. A couple lonely tear drops did fill up my eyes but didn't fall out as I expected them too. Sitting in the plant filled atrium hearing the waterfall brought back the most memories of the nights we spent there getting a break from my father's room. That hospital sure is beautiful.
Yesterday we seen Honeybunches pdoc. We got his fasting blood work done on Saturday, but she didn't get the results so while we were in his appointment she called the lab. His most recent Lithium level was 1.3. Because he's doing so well she chose to leave his dose alone. She wrote a medication order for the school to give him 1 cup of water every hour-and-a-half. I think his levels went up because the school doesn't push him to drink as much as he was during the Summer. I sent that "Medication Order" along with a paper about symptoms of Lithium Toxicity to the school nurse. The pdoc asked if she should write a script for water but I told her the medication form should be good enough lol. She was very impressed by how well he's doing. She said he is one of the few children that she's seen Lithium work on. Her boss hasn't agreed with him being on it, but she fought to keep him on it cause it is obviously working. She spent a half hour with us yesterday. We were talking about his future too and how I worry about him becoming unstable when he gets to the teenage years. She promised not to retire before he turns 13 lol.
At the lab last Saturday Honeybunches amazed me. Although his usual lab tech was not there, he cooperated just fine and did an awesome job. He also did well for me all the way on the 1 hour ride to his appointment with the GI doc in a stranger's vehicle. (Medicaid transportation is not the little bus I thought it would be. It seems they contract with people who use their own vehicles. At least this one said a company name on it lol.)
Yesterday for his pdoc appointment he did much better than I thought he would without Daddy (Who stayed home cause he was not feeling well). He was calm on the bus, quiet and attentive at the library and playful but respectful at the pdoc appointment. On the way to the bus, I told him we should stop at the store to buy a drink. He asked for ice cream, which I refused telling him "We should find something more healthy". Then he began with the threats. "Well I am going to act up then. I will run across the street. I'm not going in the store." I dealt with that well and in a way I'll try again. I walked a bit in front of him, didn't look back and stayed quiet. When we got near the store, I kept on walking past it towards the crosswalk where I waited for him. "Fine. Let's go. I'll pick something healthy." lol. He changed his mind... until we get in the store and he sees the ice cream. We ended up leaving the store empty handed after a few minutes of negotiations were not going any where. Then we went outside for a couple minutes. He then asked me to go in and get him a drink. At 1st he was refusing to come in with me, but then he agreed to stand near the inside of the door (It's a tiny corner store so I could see him). I got him and myself drinks, paid for them and we went to the bus stop. He asked if he could still go on the computer. I told him yes and that I was proud of him for "Turning it around as Mrs ___ (Mrs Understanding) would say". I told him that he made the right choices. Back a few years ago that situation would not have had such a happy ending. He really has come so far. Not to sound conceited, but I think I've come a ways in learning how to prevent some situations from escalating too. I've learned he hates to be rushed, pushed into doing things, or feel like he's threatened. Yesterday was another lesson on things to do that have worked...
Last Friday he went for his 10 year physical. That went very well. The nurse practitioner in the office whom we prefer to see cause she's E's favorite person was the one who did it. She was impressed how well he's doing and how good he looks. She said "Keep doing whatever you are doing with him cause he looks great". :) She was also impressed by how much his speech has improved too. He did awesome for me at his appointment and even waited patiently for the bus to come back to pick us up. I love how easy life is when we are at our magic # with his magic pill. If only it could stay like this lol. I always appreciate the good days and am very thankful for them. Honeybunches has gotten taller by a couple inches, but actually lost two pounds in the past year according to her...
On Monday this week Honeybunches seen his GI doc aka Gastroenterologist and the Nutritionist that works with him in the same office. The Nutritionist seemed happy because Honeybunches BMI went down a bit. The GI doc gave me heck because according to their scale Honeybunches gained 2 lbs in the past year and according to him weight gain is never good. According to his scale he weighs 117. According to the scale at the pdoc office he weighs 115. IDK. I am thinking last time they might have taken a few pounds off for clothing and this time they didn't. Whatever... He said for me to work harder at getting him to lose weight. Although he's on the Vegan diet, his cholesterol is still high as are his triglycerides. The Cardiologist he sent us too in the past said those were most likely genetic and from the Abilify he's on. The GI doc ordered another liver ultrasound in six months and a follow-up in six-and-a-half months. It was odd being at that hospital. That's where my father passed away back on May 1st. Amazingly I handled it much better than I expected. I thought for sure I'd either cry or have a panic attack while there. A couple lonely tear drops did fill up my eyes but didn't fall out as I expected them too. Sitting in the plant filled atrium hearing the waterfall brought back the most memories of the nights we spent there getting a break from my father's room. That hospital sure is beautiful.
Yesterday we seen Honeybunches pdoc. We got his fasting blood work done on Saturday, but she didn't get the results so while we were in his appointment she called the lab. His most recent Lithium level was 1.3. Because he's doing so well she chose to leave his dose alone. She wrote a medication order for the school to give him 1 cup of water every hour-and-a-half. I think his levels went up because the school doesn't push him to drink as much as he was during the Summer. I sent that "Medication Order" along with a paper about symptoms of Lithium Toxicity to the school nurse. The pdoc asked if she should write a script for water but I told her the medication form should be good enough lol. She was very impressed by how well he's doing. She said he is one of the few children that she's seen Lithium work on. Her boss hasn't agreed with him being on it, but she fought to keep him on it cause it is obviously working. She spent a half hour with us yesterday. We were talking about his future too and how I worry about him becoming unstable when he gets to the teenage years. She promised not to retire before he turns 13 lol.
At the lab last Saturday Honeybunches amazed me. Although his usual lab tech was not there, he cooperated just fine and did an awesome job. He also did well for me all the way on the 1 hour ride to his appointment with the GI doc in a stranger's vehicle. (Medicaid transportation is not the little bus I thought it would be. It seems they contract with people who use their own vehicles. At least this one said a company name on it lol.)
Yesterday for his pdoc appointment he did much better than I thought he would without Daddy (Who stayed home cause he was not feeling well). He was calm on the bus, quiet and attentive at the library and playful but respectful at the pdoc appointment. On the way to the bus, I told him we should stop at the store to buy a drink. He asked for ice cream, which I refused telling him "We should find something more healthy". Then he began with the threats. "Well I am going to act up then. I will run across the street. I'm not going in the store." I dealt with that well and in a way I'll try again. I walked a bit in front of him, didn't look back and stayed quiet. When we got near the store, I kept on walking past it towards the crosswalk where I waited for him. "Fine. Let's go. I'll pick something healthy." lol. He changed his mind... until we get in the store and he sees the ice cream. We ended up leaving the store empty handed after a few minutes of negotiations were not going any where. Then we went outside for a couple minutes. He then asked me to go in and get him a drink. At 1st he was refusing to come in with me, but then he agreed to stand near the inside of the door (It's a tiny corner store so I could see him). I got him and myself drinks, paid for them and we went to the bus stop. He asked if he could still go on the computer. I told him yes and that I was proud of him for "Turning it around as Mrs ___ (Mrs Understanding) would say". I told him that he made the right choices. Back a few years ago that situation would not have had such a happy ending. He really has come so far. Not to sound conceited, but I think I've come a ways in learning how to prevent some situations from escalating too. I've learned he hates to be rushed, pushed into doing things, or feel like he's threatened. Yesterday was another lesson on things to do that have worked...
Thursday, September 13, 2012
EEE Worries...
God bless the little girl in the town next to mine. Look over her. Let her parents have strength to get through this. Hold her in your arms. Comfort her and bring her back into good health. Amen....
There is a little girl in the town next to mine that has "Triple E" as we call it. It's otherwise known as "Eastern Equine Encephalitis". Our town is "Critical" which is the highest risk category set by the Department of Public Health. The Superintendent of Schools under the advisement of the town Board of Health, declared that children at Honeybunches' school are to have indoor gym and recess. That sucks because his teacher even gives them extra recess for doing a good job most of the day. God bless those teachers and give them extra patience! (Especially the Honeybunches' teacher/aides and the teachers/aides in the "Behavioral Classroom" too because I think they need recess the most and might not deal with the changes as well as "Neurotypical" children might...) It must be as hard for them to be stuck inside all day as it is for the children. The town has also mandated the towns parks closed at 6 pm. They say if anyone has to be out between 6 pm and 6 am for them to wear long sleeves, pants and bug spray containing DEET. DH and I took that to also mean if you don't have to be out then don't. We've been mean parents making Honeybunches come in at 6 pm. I was just going to put bug spray on him and let him play out, but DH doesn't want to take any chances. All after school games and activities after 5:30 have been cancelled. The middle/high school in town where my girls go is being pretty strict too, except they are letting the children do gym outside on the "Artificial turf only". Princess was talking to me about that saying that there is not enough room for everyone to have gym when they have it scheduled, cause there are only 2 gyms, the turf and 4 classes usually going on at once. Some people might say that the town is over-reacting to the EEE situation. What they don't realize is that my town is basically on wetlands. There is a ton of swamp land here. There is a swamp literally right behind Honeybunches' school (You can see it out the windows of his classroom and others on that side of the building). Princess and Angel's school has a small pond, which also makes mosquitoes more prevalent there too.
Anyways, all this having to stay inside has been affecting Honeybunches. He hates his routine and schedule changed. This has been a big one. He has limited time outside now. Right when I picked him up on Tuesday for his appointment he told me "Mr ____ called the school. He told (The secretary) that we have to have indoor recess cause of the mosquitoes." So I know it bothered him. Those were his 1st words to me that afternoon. This morning he told me his aide said it was up to me if he went outside. I passed the blame to the Superintendent saying that he "Said No". That's the truth. Last night Honeybunches seemed to be a bit depressed. He just looked down. There were no major issues though. I know this is going to begin affecting him. His life revolves around being outside catching butterflies, frogs and other creatures. Only being out there 2 hours per day compared to spending the whole Summer out there from morning until the sun set is a huge change. I hope it doesn't throw him off too much...
There is a little girl in the town next to mine that has "Triple E" as we call it. It's otherwise known as "Eastern Equine Encephalitis". Our town is "Critical" which is the highest risk category set by the Department of Public Health. The Superintendent of Schools under the advisement of the town Board of Health, declared that children at Honeybunches' school are to have indoor gym and recess. That sucks because his teacher even gives them extra recess for doing a good job most of the day. God bless those teachers and give them extra patience! (Especially the Honeybunches' teacher/aides and the teachers/aides in the "Behavioral Classroom" too because I think they need recess the most and might not deal with the changes as well as "Neurotypical" children might...) It must be as hard for them to be stuck inside all day as it is for the children. The town has also mandated the towns parks closed at 6 pm. They say if anyone has to be out between 6 pm and 6 am for them to wear long sleeves, pants and bug spray containing DEET. DH and I took that to also mean if you don't have to be out then don't. We've been mean parents making Honeybunches come in at 6 pm. I was just going to put bug spray on him and let him play out, but DH doesn't want to take any chances. All after school games and activities after 5:30 have been cancelled. The middle/high school in town where my girls go is being pretty strict too, except they are letting the children do gym outside on the "Artificial turf only". Princess was talking to me about that saying that there is not enough room for everyone to have gym when they have it scheduled, cause there are only 2 gyms, the turf and 4 classes usually going on at once. Some people might say that the town is over-reacting to the EEE situation. What they don't realize is that my town is basically on wetlands. There is a ton of swamp land here. There is a swamp literally right behind Honeybunches' school (You can see it out the windows of his classroom and others on that side of the building). Princess and Angel's school has a small pond, which also makes mosquitoes more prevalent there too.
Anyways, all this having to stay inside has been affecting Honeybunches. He hates his routine and schedule changed. This has been a big one. He has limited time outside now. Right when I picked him up on Tuesday for his appointment he told me "Mr ____ called the school. He told (The secretary) that we have to have indoor recess cause of the mosquitoes." So I know it bothered him. Those were his 1st words to me that afternoon. This morning he told me his aide said it was up to me if he went outside. I passed the blame to the Superintendent saying that he "Said No". That's the truth. Last night Honeybunches seemed to be a bit depressed. He just looked down. There were no major issues though. I know this is going to begin affecting him. His life revolves around being outside catching butterflies, frogs and other creatures. Only being out there 2 hours per day compared to spending the whole Summer out there from morning until the sun set is a huge change. I hope it doesn't throw him off too much...
Friday, September 7, 2012
And so the "Concerns" begin......
And so the concerns begin! Honeybunches' teacher called this morning with their "Concerns". Honeybunches was running around the building killing spiders. Then he had a "Meltdown" (IDK what that exactly consisted of, but that's what she said). They have an empty room where the preschool used to be (That got moved to another school this year). She set it up with a bean bag for him and turned the lights off thinking if he was overstimulated that might help him get more regulated. She called to ask me what I thought happened and mentioned twice about if he had his medications this morning. YES he did have them. I seen him put them in his mouth and swallow them. I said maybe he was testing. They also believe he was overstimulated. His teacher also mentioned how this morning he seen a frog kill another frog so maybe that traumatized him. He does love frogs. When he got off the bus I asked him why he was killing spiders. He said "Cause I was angry". I asked him why he was angry. Of course his answer was "I don't know". He has a very hard time expressing his thoughts sometimes, especially the why's about anything. His teacher wrote in his communication book:
"His day was not the greatest. It pretty much continued like it started. Very silly, a little noncompliant. He was not aggressive towards people, only spiders. Very silly after lunch, a couple refusals at language time. After (His aide) removed him to the room text to ours which is very quiet he settled down and did all his work....."
Just as I thought it sounds like he was overstimulated. He mentioned the other day how there are all new children in his class except one child from last year. Anxiety could be part of his problem too. When I was cleaning out his lunch box tonight I realized he ate NOTHING at school today. He didn't even take a bite of anything. He loves cucumbers and dip. I thought he would have at least ate a few bites of that. That is definitely not like him. He loves to eat and usually eats a lot. IDK if he didn't eat cause he was angry or was angry cause he didn't eat. He did eat a good breakfast. I wonder if he was mad I packed PB&J? IDK sometimes...
Oh yeah... yesterday while I was bringing my mother on some errands in another town I seen Shnooks. We made eye contact for a few minutes. Then as I was driving down the street with him behind me, I could see out the side mirror him giving me the middle finger. Whatever...
"His day was not the greatest. It pretty much continued like it started. Very silly, a little noncompliant. He was not aggressive towards people, only spiders. Very silly after lunch, a couple refusals at language time. After (His aide) removed him to the room text to ours which is very quiet he settled down and did all his work....."
Just as I thought it sounds like he was overstimulated. He mentioned the other day how there are all new children in his class except one child from last year. Anxiety could be part of his problem too. When I was cleaning out his lunch box tonight I realized he ate NOTHING at school today. He didn't even take a bite of anything. He loves cucumbers and dip. I thought he would have at least ate a few bites of that. That is definitely not like him. He loves to eat and usually eats a lot. IDK if he didn't eat cause he was angry or was angry cause he didn't eat. He did eat a good breakfast. I wonder if he was mad I packed PB&J? IDK sometimes...
Oh yeah... yesterday while I was bringing my mother on some errands in another town I seen Shnooks. We made eye contact for a few minutes. Then as I was driving down the street with him behind me, I could see out the side mirror him giving me the middle finger. Whatever...
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