Exhausted from parenting/ASD children/Welcome to Schmolland!

[toodycat]

Lovethattink---I have epilepy and DS has autism and I always wonder exactly what the link is, if there is one. It seems to me that kids on the spectrum have epilepsy a lot more than others. Of course, I also wonder if I was on the spectrum as a child in a mild way. I loved my coin collecting and staying indoors to read. I was definitely the "little professor" type. I didn't pick up social cues very well until college.

Niks's Mom--Congrats on the play. That is great news. You must have been beaming.

Not much new here. DS got his report card. He has an 83 average and it would be a lot higher if it weren't for the 65 in math. The trig thing is still challenging, but from what I hear, DS isn't exceptional in that way. Lots of kids in the class are on the brink! DS seems quite happy with his teachers and the school experience overall. His special ed. teacher's IEP special ed. report said he is progressing "gradually" as opposed to "satisfactorily" socially, but I don't think she is realistic. True, he doesn't know anyone in his lunch period and therefore, goes outside during that time to feel the wind blow in his hair , but if he were in lunch with the guys he knows, it would be a totally different story. DS goes to his two after school clubs (anime and tech) plus fencing on Saturdays and has started going to the teen group at our synagogue. On Thursday, I couldn't pick him up from anime club because I had a hair appointment, so he took a cab home. HUGE STEP! After fencing the other day, DH picked him up and found him talking to a new girl. DH asked the coach her name, saying DS would probably forget to ask, but my boy knew her name without prompting. HUGE STEP.

DS told me today that when I retire and move to Florida, he will stay in New York because he likes the cold and visit me with his wife to take his kids to Walt Disney World. I said, "But, I'll miss you." He said, "I'll call you every day so you won't be lonely."

Have a good week and a Happy Thanksgiving, everyone.

 

[Dancind]

What was that Bill Murray movie where he kept saying "baby steps"? I'm reminded of that when I read this thread.

All these baby steps lead up to great things. Wonderful to hear good news.

 

[toodycat]

I think it was "What about Bob?"

 

[lovethattink]

Ouch! Sorry about the wedding ring.

I have a proud mom moment! The school music teacher gave my 8 year old ds a speaking part in a play. It was a one liner, but he was so proud of himself. They had another student walk ds up to the microphone and get him to speak his line. Then, his face just lit up because he was so proud of himself! DH and I were very proud parents. Several teachers told us how happy and proud they were that our son had a speaking part. They know how hard his journey has been.

I just cannot believe Thanksgiving is next week! This year has just flown by.

Congratulations to your ds!! Definately reason for parents and ds to be proud!

Lovethattink---I have epilepy and DS has autism and I always wonder exactly what the link is, if there is one. It seems to me that kids on the spectrum have epilepsy a lot more than others. Of course, I also wonder if I was on the spectrum as a child in a mild way. I loved my coin collecting and staying indoors to read. I was definitely the "little professor" type. I didn't pick up social cues very well until college.

It sure seems like there is some link between seizures and autism. I've started reading books about Autism and Aspergers and they all mention seizures at some point in the book. I have been diagnosed for years with hemiplegic migraines, but they have alot of the same characteristics of my son's focal seizures. I wonder the same thing too. Up until 8th grade, people thought I either had permanent larangitis or was stuck up. An 8th grade drama teacher brought me "out of my shell, and over my shyness".

Not much new here. DS got his report card. He has an 83 average and it would be a lot higher if it weren't for the 65 in math. The trig thing is still challenging, but from what I hear, DS isn't exceptional in that way. Lots of kids in the class are on the brink! DS seems quite happy with his teachers and the school experience overall. His special ed. teacher's IEP special ed. report said he is progressing "gradually" as opposed to "satisfactorily" socially, but I don't think she is realistic. True, he doesn't know anyone in his lunch period and therefore, goes outside during that time to feel the wind blow in his hair , but if he were in lunch with the guys he knows, it would be a totally different story. DS goes to his two after school clubs (anime and tech) plus fencing on Saturdays and has started going to the teen group at our synagogue. On Thursday, I couldn't pick him up from anime club because I had a hair appointment, so he took a cab home. HUGE STEP! After fencing the other day, DH picked him up and found him talking to a new girl. DH asked the coach her name, saying DS would probably forget to ask, but my boy knew her name without prompting. HUGE STEP.

DS told me today that when I retire and move to Florida, he will stay in New York because he likes the cold and visit me with his wife to take his kids to Walt Disney World. I said, "But, I'll miss you." He said, "I'll call you every day so you won't be lonely."

Have a good week and a Happy Thanksgiving, everyone.

Girls can have that effect on boys Trig is tough. Barren's (?spelling) make EZ guides to math. I bought the pre-calc one for my 16 year old to use in adjunct to his text book, and his understanding is really improving! Purplemath is also a great website for math help!

What was that Bill Murray movie where he kept saying "baby steps"? I'm reminded of that when I read this thread.

All these baby steps lead up to great things. Wonderful to hear good news.

Being new to all my sons recent diagnosis', I keep hearing 2 steps forward one step back from each clinician. But that still puts us ahead!!

Last night ds had focal seizures during the night. We will be taking it easy today and I am letting him sleep in as long as he needs. I can't think of any triggers from yesterday except that we stopped at a gas station and dh bought him a small coke icee. He is not use to caffeine or sugar, so that was a double wammy. And he was very energized before bed, even though he had drank it around 3pm.

 

[disneymom3]

Not much to report here. Just been reading along. I feel blessed to have so many of you sharing so openly. I just don't have the energy for it right now, but please know I am with you in thought and empathy.

We are getting through each day by just focusing on that day. DS has started his ADHD medication and it really is helping in his school work. It doesn't take 45 min to do math anymore and no more crying because he can actually focus and come up with the answer. It's a huge relief.

I did talk to our psych about the "Autism Spectrum--NOS" diagnosis on the psychologists report. She was not too happy about the misnomer and the fact that it was really vague. Her thought was the psychologist was citing the Autism Spectrum because if we needed school services he could qualify under that. Since we homeschool, we really don't need them though and it didn't give us any more information. For now, we have decided not to put DS through anymore testing and just do what we know to do to help him wherever he is at.

I hope all of you have a wonderful low stress holiday. Sometimes a stress free holiday is just too unrealistic.

 

[toodycat]

Happy Thanksgiving everyone! I am grateful for all I have, especially my beautiful son, the wonderful progress he has made and the unequivocal love and support my wonderful husband has unwaveringly shown for Jake, for me and the decisions I make regarding his treatments. I am re-posting this letter which I received via email from AHA New York this morning. Written by Viki Gayhart, it is a letter explaining to friends and family how holiday gatherings seem to kids with ASD. You may have read it before; you may not, but I thought it might help anyone who has relatives who don't "get it."

Sending you all lots of love,

Jane a.k.a. Toodycat

Dear Friends and Family,

I understand that we will be visiting each other for the holidays this
year! Sometimes these visits can be very hard for me, but here is some
information that might help our visit to be more successful.

As you probably know, I am challenged by a hidden disability called autism
or what some people refer to as a pervasive developmental disorder (PDD).
Autism/PDD is a neurodevelopmental disorder, which makes it hard for me to
understand the environment around me. I have barriers in my brain that you
can't see but which make it difficult for me to adapt to my surroundings.
Sometimes I may seem rude and abrupt, but it is only because I have to try
so hard to understand people and at the same time, make myself understood.
People with autism have different abilities: some may not speak, some write
beautiful poetry, others are whizzes in math (Albert Einstein was thought to be
autistic), or have difficulty making friends. We are all different and need
various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make
me want to run away. I get easily frustrated, too. Being with lots of other
people is like standing next to a moving freight train and trying to decide how
and when to jump aboard. I feel frightened and confused a lot of the time, like
you would if you landed on an alien planet and didn't understand how the
inhabitants communicated. This is why I need to have things the same as much as
possible. Once I learn how things happen, I can get by ok. But if something,
anything changes, then I have to relearn the situation all over again! It is
very hard.

When you try to talk to me, I often can't understand what you say because
there is a lot of distraction around. I have to concentrate very hard to hear
and understand one thing at a time.

You might think I am ignoring you--I am not. Rather, I am hearing
everything and not knowing what is most important to respond to. Holidays are
exceptionally hard because there are so many different people, places and things
going on that are out of my ordinary realm. This may be fun and adventurous for
most people, but for me, it's very hard work and can be extremely stressful.
I often have to get away from all the commotion to calm down. It would be
great if you had a private place set up to where I could retreat.

If I cannot sit at the meal table, do not think I am misbehaved or that my
parents have no control over me. Sitting in one place for even 5 minutes is
often impossible for me. I feel so antsy and overwhelmed by all the smells,
sounds, and people--I just have to get up and move about. Please don't hold up
your meal for me--go on without me and my parent's will handle the situation the
best way they know.

Eating in general is hard for me. If you understand that autism is a
sensory processing disorder, it's no wonder eating is a problem! Think of all
the senses involved with eating: sight, smell, taste, touch AND all the
complicated mechanics that are involved with chewing and swallowing that a lot
of people with autism have trouble with. I am not being picky--I literally
cannot eat certain foods, as my sensory system and/or oral motor coordination
are impaired.

Don't be disappointed if mommy hasn't dressed me in starch and bows. It's
because she knows how much stiff and frilly clothes can drive me buggy! I have
to feel comfortable in my clothes or I will just be miserable! Temple Grandin, a
very smart adult with autism, has taught people that when she had to wear stiff
petticoats as a child, she felt like her skin was being rubbed with sandpaper.
I often feel the same way in dressy clothes.

When I go to someone else's house, I may appear bossy and controlling. In
a sense, I am being controlling because that is how I try to fit into the world
around me (which is so hard to figure out!) Things have to be done in a way I am
familiar with or else I might get confused and frustrated. It doesn't mean you
have to change the way you are doing things--just please be patient with me and
understanding of how I have to cope...mom and dad have no control over how my
autism makes me feel inside.

People with autism often have little things that they do to help
themselves feel more comfortable. The grownups call it "Self regulation," or
"stimming'. I might rock, hum, flick my fingers in my face, flap my arms or any

number of different things. I am not trying to be disruptive or weird. Again,
I am doing what I have to do for my brain to adapt to your world.
Sometimes I cannot stop myself from talking, singing, or partaking in an
activity. The grownups call this "perseverating" which is kind of like
self-regulation or stimming. I do this only because I have found something to
occupy myself that makes me feel comfortable, and I don't want to come out of
that comfortable place and join your hard-to-figure-out-world. Perseverative
behaviors are good to a certain degree because they help me calm down. Please
be respectful to my mom and dad if they let me "stim" for a while, as they know
me best and what helps to calm me.

Remember that my mom and dad have to watch me much more closely than the
average child. This is for my own safety, preservation of your possessions, and
to facilitate my integration with you tippies (what we autistics fondly call you
neurotypical folk!) It hurts my parents' feelings to be criticized for being
over protective or condemned for not watching me close enough. They are human
and have been given an assignment intended for saints. My parents are good
people and need your support.

Holidays are filled with sights, Sounds, and smells. The average
household is turned into a busy, frantic, festive place. Remember that this may
be fun for you tippies but it's very hard work for me to conform. If I fall
apart or act out in a way that you consider socially inappropriate, please
remember that I don't possess the neurological system that is required to follow
tippy rules.

I am a unique person--an interesting person. I will find my place at this
celebration that is comfortable for us all as long as you'll try to view the
world through my eyes!

 

[toodycat]

Also, here's an article on how difficult it can be for autistic kids to fly with the new TSA regs. It includes a mention of how Southwest and some other airlines are creating "practice" flights for families with an autistic child


http://www.care2.com/causes/health-policy/blog/if-youre-autistic-super-unfriendly-skies-this-season/

 

[ppony]

A quick apology that I never get to read this thread. I keep hoping the magic time will appear, so far, nada. BUT I will post a link to a trip report as soon as I finish it ( that magic time again ) to share the tales of traveling to WDW w/ a 3 year old Schmollander.

Happy Thanksgiving!!!!!

 

[bookwormde]

What a great letter Toodycat. Honest information for those that our kids are around, is one of the best gifts we can give them.

bookwormde

 

[kirstenb1]

Thanks Toodycat. I'd never seen that letter, so I'm glad you shared it.

 

[lovethattink]

Thanks for sharing the letter! We had a very quiet and peaceful Thanksgiving Day! It was just the 4 of us. DS(6) was so excited that it was Turkey Day. He was even more excited that turkey tastes like chicken! He put bbq sauce on his turkey because it tasted like chicken. He cut his meat for the first time too. We were amazed that every bite was cut the exact same size! It was just the four of us, but I decided to get out the good dishes and make a "fancy" table. DS set the table, based on a map he had made on how a table should be set. But what really made his day was watching Santa Clause come to town on the Macy's Parade on tv!

Dh and I have noticed that ds(6) started in recent weeks asking us to write down certain observations he has made. He is keeping track of what the fish will eat and what his hermit crabs eat. He got a Yogi the Bear toy from Wendy's that is a balance. He said how boring it was. We gave him a notebook and explained to him about the Scientific Method. He is now recording data in the book using the Yogi scale to see which of his legos weight more, and how many different types of legos he can combine to find a balance. And this is so much fun for him!

Today I read an Amelia Bedelia book to him. It took us forever to finish the 64 page book, but we had amazing conversation about the double meaning of words used in that book.

 

[toniosmom]

Tootycat -- thank you for posting that letter. I could really relate to all of the sensory stuff. Just today, I tried to take him to the movies (Tangled) with my sister and nieces. It was an old theater that catered to small kids and it was a nightmare. Kids continued to talk after the movie began, they left the wall sconces lit after the movie began.....etc. We saw about 20 minutes of the movie before he started screaming that we had to leave. There was just too much background noise for him. It was very hard to focus. I found myself distracted as well, so I can only imagine how he felt. The second we got out the door, his entire demeanor changed. We do much better in a dark, quiet movie theater, so we'll try again.

 

[lovethattink]

toniosmom, I'm so sorry there were so many children distracting you both from seeing Tangled. We were fortunate to see it when the theater wasn't full and there weren't many kids. My son didn't like how loud the volume of the movie was. He held his ears off and on throughout. He loved Tangled, and can't wait for it to come out on video!

Santa Paws, was a different story. We rented it from the Red Box. The actions of the villian, and the emotions produced caused way too much anxiety for my son. He cried and cried. The movie Up did the same thing (the cruelty to animals), as did Lotso in Toy Story 3 (the cruelty to the toys).

 

[toodycat]

Toniosmom and lovethattink---Wow. You're bringing back some memories. DS's first movie was Tarzan. Between the extremely loud audio in the theater and the death of Tarzan's parents, we were out of there in 15 minutes.

 

[Kat77]

Lovethattink---I have epilepy and DS has autism and I always wonder exactly what the link is, if there is one. It seems to me that kids on the spectrum have epilepsy a lot more than others. Of course, I also wonder if I was on the spectrum as a child in a mild way. I loved my coin collecting and staying indoors to read. I was definitely the "little professor" type. I didn't pick up social cues very well until college.

On Thursday, I couldn't pick him up from anime club because I had a hair appointment, so he took a cab home. HUGE STEP! After fencing the other day, DH picked him up and found him talking to a new girl. DH asked the coach her name, saying DS would probably forget to ask, but my boy knew her name without prompting. HUGE STEP.

My friend with two boys on the spectrum (and one very questionable daughter) is epilectic. I do not have epilepsy but several of my cousins do. Neurological disorders are often comorbid, tourettes is also linked with autism. At one point, my daughter with tourettes actually had an autism dx on the table (second grade?). I just threw it out after a while because it was kind of bunk. Her behaviors were easily tourettes related.

I think I have mild aspie charactics too. I was definately social in school (cheerleader) but I hung back in new situations and had more than one person confess they thought I was stuck up (until they knew me better). It ALWAYS confused me! I tried to defer taking the lead because I get bossy when involved.

He knew her name! I "get" this celebration!

Thanks for sharing the letter! We had a very quiet and peaceful Thanksgiving Day! It was just the 4 of us. DS(6) was so excited that it was Turkey Day. He was even more excited that turkey tastes like chicken! He put bbq sauce on his turkey because it tasted like chicken. He cut his meat for the first time too. We were amazed that every bite was cut the exact same size! It was just the four of us, but I decided to get out the good dishes and make a "fancy" table. DS set the table, based on a map he had made on how a table should be set. But what really made his day was watching Santa Clause come to town on the Macy's Parade on tv!

DS10 loves all holidays. He looks forward to traditions: jack-o-lanterns, turkey legs, candy canes, santa hats, nutcrackers, chocolate coins, chocolate bunnies... It is really sweet. I love how much joy he gets out of simple, predictable things.
I promised him a package of dreidels if he went with me to pick out a jacket from Target last night. Apparently, he wants to adopt Hannakah since he then begged for a menorah. Did I mention, the kid loves traditions?!?!
BTW, I did not buy the boy a menorah... lines from "If You Give a Mouse a Cookie" were running through my head.

Tootycat -- thank you for posting that letter. I could really relate to all of the sensory stuff. Just today, I tried to take him to the movies (Tangled) with my sister and nieces. It was an old theater that catered to small kids and it was a nightmare. Kids continued to talk after the movie began, they left the wall sconces lit after the movie began.....etc. We saw about 20 minutes of the movie before he started screaming that we had to leave. There was just too much background noise for him. It was very hard to focus. I found myself distracted as well, so I can only imagine how he felt. The second we got out the door, his entire demeanor changed. We do much better in a dark, quiet movie theater, so we'll try again.

The only meltdown DS10 ever had at a theater was during a special needs viewing. The lights were left on low and other children were making noises and figeting. We ended up having to leave because he went ballastic. He does fine at regular viewings. It was shocking.

 

[disneymom3]

Also, here's an article on how difficult it can be for autistic kids to fly with the new TSA regs. It includes a mention of how Southwest and some other airlines are creating "practice" flights for families with an autistic child


http://www.care2.com/causes/health-policy/blog/if-youre-autistic-super-unfriendly-skies-this-season/

This whole pat down thing and my DS is why we will NOT be flying until I can be sure no one is going to be touching him like that. We would be arressted for sure. Thankfully my kdis all really like travelling by car!

Loved the letter you posted. Thanks for sharing that. Thankfully DS is very comfortable at my ILs which is where we always do holidays. In fact, when other family is around, he would rather be there than at home. I think it feels more predictable somehow. They also have video games so that eases the interaction between the cousins. They can all just play Wii together and he doesn't have to figure out their style fo play. His friends play VERY differently than his cousins.

Tootycat -- thank you for posting that letter. I could really relate to all of the sensory stuff. Just today, I tried to take him to the movies (Tangled) with my sister and nieces. It was an old theater that catered to small kids and it was a nightmare. Kids continued to talk after the movie began, they left the wall sconces lit after the movie began.....etc. We saw about 20 minutes of the movie before he started screaming that we had to leave. There was just too much background noise for him. It was very hard to focus. I found myself distracted as well, so I can only imagine how he felt. The second we got out the door, his entire demeanor changed. We do much better in a dark, quiet movie theater, so we'll try again.

Movies and plays are hard. DS is doing pretty well with movies now. I can just about always talk him through the getting used to it now. We rae a big theater family and for a long time, I couldn't get him to even go in the theater let alone see a play. I was with a wonderful group of supportive homeschoolers at that time, so we wold get the tickets and then he and I would try to go in or sit out in the entrance while my friends took my daughter in to see the play. Finally she was in one and since he reallyw anted to see his big sister, he went in. After that, we were good to go with some hiccups along the way. I will never forget one we went to at the Children's Theatre here. There was a big boom of thunder and every head in our group turned to DS to see if he was alright.

Oh, I need to feel that love and support tonight. I am directing our kids Christmas play at church and rehearsal was tonight. DS has a part with several key scenes in it. This is big for him, but he's quite a good actor and he usuaally likes it./ This year, though.....we have a group of kids who are just brats. As many of our spectrum kids go, he cannot take teasing at all. Especially mean spirited teasing. And this was. There is one kid in a group his character has to talk to that is just a pain in the butt. My son was waiting for this one to be quiet so he could say his line. Then the other kid starts telling him over and over "Your line is this.....your line is this." Then apparently two other kids were making fun of him. At least that is what he says. I really think a typical kid would have been upset too. (I did not hear the other two but I know the co-director did reprimand them.)

So, take this to his level and he is refusing to go to rehearsal on Saturday. It is our first and only dress rehearsal. He really can't miss it. What I am hoping and praying is that being that the next rehearsal and the performance are in the morning, it will go better. His ADHD meds were wearing off, his anxiety is higher at night, his sensory system is overloaded by then.....you all know the drill. So keep good thoughts for Colin if youy will. He does see his therapist tomorrow and I am going to bring this up. She gets through to him on this emotional stuff in a way that I can't.

 

[lovethattink]

So keep good thoughts for Colin if youy will. He does see his therapist tomorrow and I am going to bring this up. She gets through to him on this emotional stuff in a way that I can't.

Definately lifting you and Colin up!

 

[Kat77]

Definately lifting you and Colin up!

Same here.

 

[disneymom3]

Thanks much! His appointment this morning went really well and he is feeling beter about the weekend. So thankful the practice and performance are in the morning. Mornings are so much better for him.

 

[lovethattink]

Do your children play video games? My son can't play for long because of being photosensitive, but he really wants Epic Mickey. My husband was listening to focus on the family and they gave Epic Mickey good reviews. We are debating whether or not to make the purchase??