heatherbabes's Autisable

Autism and Halloween

Mon, 01 Nov 2010 16:17:21 GMT

This year we did not even attempt either child to do the door-to-door thing. One, it's a mixed message: Don't take candy from strangers except for one night a year. Two, there's just not the same sense of safety as it was when I was a kid. Three, the kids REALLY don't get the whole point of it, other than the candy.

So, this year, instead, we went to events.

The first was at our local church, Journey Church, where they had games the kids could do to earn the candy. The second was all the businesses in town set up tables along one of the main streets, and the street was blocked off to traffic. It was fun. There was even a person giving out popcorn, chips, soda, hot dogs, etc. By time we got to the end, they were out of food tho. Even had live music! Great band. Hope they play again next year.

I'm going to try and attach pictures of our "costumes." You'll notice we do make-up in lieu of masks and that's for our sensory issues. However, Thom didn't do well with the make-up this year. He kept wanting to rub it off cause it "itched."

The purple in my hair *is* permanent.

The lady next to me in the pic is the person I refer to as "helper lady" She is the one who is responsible for helping me with paying bills, running errands, cooking and cleaning, etc. She's not really meant to do the help with Halloween thing but because she's a kind hearted person, she did anyway. She did our make-up, and she drove so I could actually take the kids somewhere. Jerry had the flu or something wrong with his stomach and he couldn't drive us.

I don't know how single parents of autistic kids do it. I really don't. My hats off to you mom and dads who do !

Thom part 2

Mon, 01 Nov 2010 13:00:07 GMT

Yesterday, I wrote about my son, Thom, and the story of his birth.

The first three years after he was born, starting at five months old, he was in early intervention. Because of his stroke, we were told, he had developmental delays. He didn't talk when he was supposed to but we had known he may not ever talk. But he learned sign language.

He started walking at 9 months before he even ever crawled.

He was potty trained at 10 months-something he did himself because he didn't like cloth diapers (he was allergic to aloe so disposable diapers were out).

He did have right-sided weakness for years and to some degree even still today at age 12.

At three years old, he began to finally talk. He talked in full sentences giving me the suspicions that he could have talked sooner if he had really wanted to. Guess he just didn't have anything to say out loud.

But he did communicate. He'd share books with me and point at the pictures and sign the events going on. He had no interest in the words of the books--just the pictures.

He'd draw pictures; he'd look at pictures; he'd go on the computer. By age 3, he knew more about operating the computer than I did!

Around this time my cousin Diana had come over to visit and we were sitting at my kitchen table, talking and catching up as I hadn't seen her in awhile. Thom came up to us and asked me "Did it hurt?" And I asked, shocked, "Did what hurt?" He replied, "When the doctor made you a girl?" I blinked a few times and then said "No, honey, I was born a girl." And he blithely informed us that when he was older he was going to become a girl and then walked away. This was the second time he had spoken verbally.

He's since changed his mind about being a girl when he grows up.

It is during this same time span that his biological father left the state with another woman. He'd be gone for four years before he returned. He had another child with the woman. And from all appearances, he did not care about how his kids were doing because during this time, he wouldn't call or write or even email his son. Thom took that very hard. Very, very, hard.

I walked into his room one day because he had gotten quiet. He had gone to his room because he needed to calm down as he had begun these fits that could only be called rages. I sent him to his room to calm down because it was a safe place for him to throw himself to the ground, scream, kick out, etc. while I racked my brain for how to teach him how to deal with these emotions that seemed so overwhelming.

This particular day though he had gotten quiet rather quickly and so I went to check on him. I walked into the room and found the sleeves of his sweatshirt wrapped around his neck and Thom was pulling tightly, trying to strangle himself. At this tender age, he had decided it would be best if he was dead.

This is when Thomas started seeing a psychiatrist and therapist. They'd tried to force medications on him but to me, he was just too young. He needed coping skills. And that is what I advocated for.

He was diagnosed with bipolar disorder type III (mixed bipolar). My eldest sister also has bipolar disorder so I wasn't unfamiliar with its effects. There are other family members with this disorder as well. To me, though, it just didn't set well with me. I didn't agree that was his problem or maybe it wasn't his only problem. I could be wrong though, I thought.

The next few years were spent teaching Thom had to express his anger, disappointment, and depression without the raging fits. He'd throw full-size wooden dressers across the room like a toy. He has always been a big boy. He's now 5'5" and 180 lbs. At age 12.

The fits stopped but not the problems. Thom didn't make friends easily and that was part of the problem. He was extremely lonely. He wanted friends but no one seemed to want to be friends with him.

At his school when he was six years old, the policy was that if a child wanted to give out invitations to a party, they had to give out invitations to all the children. Thomas was so excited he was finally invited to someone else's party. When I called to confirm that Thom was going, the mom informed me that the party had to be canceled. I expressed my disappointment and wished them a better day.

Thomas went to school the following Monday and all the kids were talking about the party. Turns out the party wasn't canceled--just Thom's invitation.

He would come home with tales of woe--of being bullied, harassed. I'd troop up to the school or call the bus barn and speak to the bus driver. I'd demand satisfaction every time for my son. Turns out though, Thom usually did or said something to provoke the incident. I couldn't understand why Thom would say things or do things and then expect the kids to be his friends?!?!

When he was ten, we were living in Sallisaw, OK. He began to make friends. He kept those friends too--until they moved away usually. They move around a lot down here. The school here decided he needed new psychological testing and educational testing. I said fine. His prior testing from MA wasn't too clear they said.

You see, his past testing indicated that he had all of these: bipolar disorder, Oppositional Defiance Disorder, Attention Deficit Disorder, and post-traumatic stress disorder and a few more besides. Their school psychologist, who had studied and treated autism for 30 years at that point, suggested that maybe Thom's problems were a little less complicated.

He gave Thom the questionnaires, and did interviews with him and me. He was of the opinion that all of Thom's issues could be explained with the label of Asperger's Syndrome, a type of autism. Of course, I knew about that one. *I* have Asperger's Syndrome. My youngest son has another kind of autism called PDD/NOS. I had asked the neuropsych who diagnosed me if Thom could have a form of autism and I had been told then that the answer was no and here this doctor was telling me that it explains it all.

I hadn't studied Asperger's Syndrome. I just knew how it affected ME. And I'm a female. It's quite different in males. I had studied autism in general and PDD/NOS specifically because of my youngest son. So I learned and studied more about Asperger's Syndrome. I had Thom tested again by a neuropsychologist to determine a differential diagnosis. He said it was Asperger's Syndrome AND bipolar disorder.

Well, to me, it doesn't matter what the insurance companies want to call it. Now that I have learned much more about autism, I see that he does have it and he does have bipolar disorder. His depression comes on quite strong and it is usually triggered by his lack of social skills, from the Asperger's.

In August of 2005, Thom has a febral seizure that nearly took his life. I called his father once Thom was out of the hospital and home and told him in no uncertain terms he needed to pull his head out of his butt and get home and be a father to these kids. The whole point of his leaving us was because he couldn't handle the responsibility of being a father and husband and here he was a father again with his girlfriend (we never divorced). So, if that's the case, he can be a father to all three back here.

I told him he almost lost the chance to "make it up" to Thom the way he kept saying he wanted to do. Thomas' seizure was that bad. He was unconscious for about 24 hours.... on a ventilator. It was a scary time and I was angry that I had to go through that without the benefit of his father being there. I was quite resentful about it, frankly. I wanted Thom to have his father there with him because Thom wanted his father there.

So, by October of 2005, Thom's father returned to the state. He began visiting his children every weekend. Life was not good for this man though and he had no job and then his girlfriend kicked him out and so he was homeless. He still worked at a temp agency and would come every Saturday to our house for his visits. Rain or shine. For those that do not know this man, for my then-husband to take PUBLIC TRANSPORTATION, in the rain, ANYWHERE, was a huge step in growing up!

In May of 2006, when Thom was eight years old, his biological father committed suicide by stepping in front of a high speed train. He had left a note on our computer that I did not find until afterward when I went looking for one. He had done the same thing to his girlfriend. This was on a Friday night, a holiday. The previous Tuesday, his girlfriend (then ex) had tried taking him to the ER to have him committed but he lied about being suicidal. He told them he was only saying that for attention. So they had to let him go.

Thom was quite afraid for a long time of trains after that. More than afraid--terrified. Not too hard to understand. He had been told his father was hit by a train, but not that it was on purpose, and now he was afraid *I* would be hit by a train or he would. Someone (not naming names) thought it best that Thom understood that it was on purpose that his father died. That way he'd understand that it was highly unlikely that I would be hit by a train or anyone else he knew.

And so now Thom is of the opinion that a permanent solution is an answer to a temporary problem. He'd had these tendencies before but in his mind, he now has permission because his biological father had done it. The past four years have been hell on this boy emotionally and mentally and I'm glad to say that while he has moments still... he has grown past that part.

During his most depressive states, Thom would often have visual and auditory hallucinations. I think this is why doctors used to confuse autism with schizophrenia. One such night, Thom was about five years old and I woke up to his screaming as if he had been murdered.

I followed the sounds of his screams to the living room and there he was curled up on the floor screaming. I grabbed him up in my arms and sat on the floor rocking him. He was nashing at his eyes, screaming, "Make it go away, Make him go away."

Warning: Graphic details follow--if you are squeamish, please do not continue reading...

He calmed down enough and told me that he was laying in bed, trying to sleep and he woke up to someone telling him we were all dead. That if Thom got up, and he should get up, he'll see our bodies piled up in the living room... in parts. With blood all over. He was told that I ate his brother's head and so Papa (my father) killed me and dismembered me with a chainsaw (which we did not own).

Well, you get the point. Thom got up and went to the living room to prove to this voice that it was lying. However, when he got there, in his mind's eyes, he saw the vision of this carnage.

What do you do as a mom? What do you for your child to make him feel better? What do you do?

The only thing I could do. I talked to him. At first, we picked apart the voice's inconsistencies. Papa wasn't home. He was at work. We do not have a chainsaw anywhere. I am not a cannibal. We picked apart all the details that were "wrong." So that next time the voice began to tell him these types of things, he could tell the voice to go to hell.

We talked about what had him upset before he went to sleep. We talked about it all. He began to see that when he was sad, this It would come talk to him. So, to keep the It away, he had to figure out his sadness and try and fix it, if he could.

We then put a T.V. in his room. It "grounded" him to something of reality.

I also then began the okay for mood stabilizers and anti-psychotics. Today, Thom is on one medication for help with sleeping and his "oppositional" issues. It really does help him.

He also saw his neurologist then for follow-up testing. He was allowed off his high-fat content diet and his newest images showed some amazing things. Most of the damage had healed. Some of it hadn't. Some parts of the brain that others do not use, were all lit up like a Christmas tree. Amazing, the human mind. Terrifying, too.

I told the neurologist about these hallucinations and that Thom was seeing a psychiatrist, etc. She informed me Thom was making it all up and that it was all for attention.

Yeah. Okay, lady.

Maybe some other kid. Thom's imagination just isn't that developed. It still isn't really. When asked to write stories for school assignments, we get things like this: "My brother is a boy. He is eight years old." Very factual, no adjectives. Even his most recent Halloween story (written last year and published here at this blog) was the best he's ever done in this regard and he was 11 then. Nah... imagination just isn't a strong suit for him.

The best way for Thom to deal with things is by talking. He still enjoys the talking. Talking, with words or pictures as he still does, lets the emotions out. I give a safe place to talk about whatever it is that is bothering him. He knows that I won't take his words the wrong way or assume he is trying to be insulting.

For instance, last night, Halloween, there were individuals who thought I was a kid. I told my husband this when we returned and Thom added: "Must've thought you were a fat kid." He didn't say that to be mean. Yes, it hurt my feelings but that wasn't his intent. He was just being honest. He's still working on the "leaving things unsaid" part of life :)

I'm 33 and I still have trouble with that, too.

So, when I first read about "Communication Shutdown," I thought.. Hmmm.. that's great for them. But for us auties at my house? We'll keep talking, thank you.

Whether it's on Facebook, Twitter, the internet, or face-to-face, talking things out has been Thom's saving grace. After waiting to hear Thom's voice for so many years (and really it wasn't that long compared to Bboy), I don't ever want to hear anyone tell him to shut-up.

Granted, the organizer's intent was not to shush the individuals with autism. But that is how it came across. I'd much rather individuals tune in to Twitter and Facebook and blogs and find those adults and teens with autism that are out there and online. Listen to them. Understand them. Accept them. Don't shut them out.

Thom

Sun, 31 Oct 2010 04:45:40 GMT

All in all this young man continues to astound me. You see, he has more issues than just his Asperger's Syndrome. I don't talk much about those issues because it is still quite painful and my eyes are already tearing up and I haven't even mentioned the events yet!

The night before I gave birth to Thom, he had had a stroke. We didn't know until the labor had started that anything was wrong. They weren't able to get his fetal heart tracings, not even with an internal monitor. They broke my water to go in and see if they could get a heartbeat to register and there was none. They then rushed me into a C-section.

I was awake for it and it felt rather strange--I had detached myself because it was just too painful to consider that I might have lost my son. You see, I knew he had stopped moving the night before. I had thought the old wive's tale of a baby moving less was a sign of impending labor and so went to sleep while I still could when I had noted that he hadn't moved for about an hour. I blame myself to this day although the doctors tell me that it didn't matter. That the damage had already been done.

We (Thom and I) went back to my patient room after he was delivered and did some of his newborn testing. Later that afternoon, I noticed his arms were shaking as if he was shivering. So were his legs. He was wrapped as tight as he would let me and he was dressed warmly. It was August! I had a troubling sensation come over me and I pressed the button for the nurse. She came in and saw what I saw. The shaking didn't stop when you held his arm (like it would if he was shivering from cold). She said something to me which I do not recall now. She told me she was going to take him to the NICU quickly and get some testing done but that she'd be back.

Hours later and I still didn't have my son back. I called my husband who was at our home celebrating with his friends. I demanded (yes, I had to actually demand this) that he come up to the hospital to be with me and find out what they did with our son. I was sure they had stolen him from me because I wouldn't make a good mom. Silly, irrational? Yep, but scared nonetheless. I mean, it seemed like it had been DAYS since I had my baby.

I don't know why I didn't just call the nurse in again and demand my baby myself. I don't know what stops me from speaking up at times. But I wanted my baby back.

Hubby finally came up with a few of his friends and he went in search of the nurse to get some answers, as well as why no one had bothered to come and tell me what was going on. They assumed I was sleeping (I did have major surgery after all) and they didn't want to disturb me!! ARGH.

The nurse came back with hubby and told me not to be afraid to push the button to call her next time I get worried. She gave me a tranquilizer and a pain med or two. She then told me that my son's blood sugar levels were too low (around 10 and 15) and that it was causing seizures. They weren't sure why but they were trying to get him to feed to raise his blood sugar with special formula and IV fluids. He had also developed jaundice.

I'm not sure how much longer it was when I finally was unhooked from my catheter (I had tried to pull it out myself). I had been asking for that since I got to my room. I couldn't go below floor until that was removed and I proved the nurses/doctors I could walk unassisted. Later, much later, I had gotten a copy of my medical records from that time and saw the nurse wrote in the chart that I was up and walking around (with catheter and IV in my arm) a 1/2 hour after surgery was done. They all referred to me as SuperMom. I didn't feel much like a SuperMom at all!

I finally was allowed to go downstairs to the NICU and saw my son in a bassinet. He was too big for their incubators and not to be mean, but he looked like a giant compared to his neighbors. He weighed 8 lbs 10 oz. and was 23 inches long. His nearest neighbor, the poor thing, was 1.5 lbs. and 14 inches long. I couldn't shake the feeling that this was all just a nightmare.

Either later that night or early the next morning, the doctor showed us the brain images. He showed us the dead areas of Thom's brain. It was HUGE. He said it was a blood clot that had formed in his heart and traveled to his brain--where it cut off oxygen. The "epicenter" of the stroke was in the area that controlled language. Almost the entire left side of his brain was "dead."
[back from break]

The doctors didn't have any answers for us. Later on we did blood work and our blood held no showing for "extra clotting ability" for me, my then-husband, or our son; nor did we have it when our genes were combined. At the time of this meeting with the doctor, he did tell me that they did not know how this would effect him. He gave us hope and said he could heal the brain damage and Thom being an infant, there was lots of hope. But he added that he may not walk; he may not talk; he may not do a lot of things. I didn't care because I was a Mom. That was something I had been waiting for since I was 7 years old!

Sometimes later a friend of my husband, we'll refer to her as D, called my room. She said that hubby's friends were concerned because I was not concerned. (Never mind I was doped up on tranqs and pain meds). They felt I was too blase about it all. I told her "Well, ya know what? If ALL that results from this is epilepsy? I can deal with that compared to what MIGHT also be wrong with him in the future. I'll worry about that in the future when it happens. I'm not going to mourn the loss of a child I didn't lose!" and she replied "Well, you will be if he has a seizure when you're sleeping and he dies." I hung up. I didn't get much sleep for the first five years of Thom's life because I was so scared he'd have a seizure and die on me when I was sleeping. Do you see why I hate phone calls? LOL

My father and mother (although divorced) were both around. My sister was around. My husband was around. His grandparents and aunt were around. I had lots of emotional support during that time. And I am thankful for that.

A social worker at the hospital contacted the health insurance who was paying for all of this: Blue Cross Blue Shield Federal plan. My father worked for the post office and I was still on his plan (I was 21). The social worker asked for and received an extra night in the hospital for me so that I didn't have to go home without my baby. I was originally given five days post surgery and although I didn't use my room much (always "off floor" on the medical chart when they tried to give me pain meds/take vitals) they knew I didn't want to go home without my baby. Thom's seizures stopped within 3 days and it was likely he would go home on the sixth day. The claim person at Blue Cross told the social worker she'd had a premie and knew what that was like to go home without her baby and she had the power to prevent me from knowing what it was like and she'd give that to me. God bless those women, whomever they may be.

Sadly, he didn't go home until the seventh day and I did have to go home for one day without my baby. I thank God it wasn't longer than that though! I got to know the mom whose baby was next to Thom's and she had been coming to the hospital for four months while he son healed and grew strong enough to go home. Our babies went home the same day *grins* but I'm glad I didn't have to go through that. Call me selfish, I can take it!

I dropped off my things and returned to the hospital. I stayed there. They did some more testing (MRIs and such) that afternoon/evening and the doctor said if the test results come back the right way, we'd be able to take him home the next day (which would have been day 8). As much as I prefer even numbers, I'd rather have him home sooner! So, my husband and I stayed in a "family" room on the floor, inside the NICU and got the video watching out of the way. You have to watch a video on how to hook up a car seat, bring in your car seat to show them that you bought the right kind for newborns, watch a video on breastfeeding/bottle feeding (I did breast feed Thomas), and watch a video about parental stress and who to call for help. We were given gift bags of formula (he had to have his medicine mixed with formula since it broke down the breast milk), diapers, and so forth. We were given extra blankets. We were piled down with stuff. But we signed all the forms needing singing and so that when the doctor gave the okay the next day, we'd be all set.

At about 11:30 p.m. the doctor came over and asked if we wanted to take our baby home now! I was so excited! I said yes. I think I just pestered them too much they couldn't stand it. LOL He said the test results were all in and looking good and Thom's seizures were under control as he hadn't had one since day three. That really it was only time of day that they would not release him traditionally but if we'd sing the discharge papers, he'd be okay with T coming home! Oh, I signed fast... lol He was okay to come home.. and I wanted my baby home with me!

This is the end of the story of his birth but by no means the end of his story! Leading up to November 1st and beyond, I decided to share T's story with y'all as part of the Autistics Speaking Day event. I will also be on Twitter on Nov. 1 starting at 10 a.m. (@Heather_Sedlock) as part of The Coffee Klatch's 24 hour chat event to help further autism awareness, understanding, and acceptance through their Communicate to Educate event as a guest moderator. I look forward to seeing you there! Please click here for more information about TCK's event.

New School Year: Bboy’s IEP Meeting

Wed, 15 Sep 2010 16:19:10 GMT

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I went to the school this morning for Bboy’s IEP meeting. I had met, informally, with the individual responsible for heading these meetings earlier in the year (when school had first started, in August). And so, I knew what to expect.

Well, I knew what the plan for placement was going to be and what additional services there were going to be. Such as, he will be in a substantially separate classroom. Although, they don’t refer to it as that. They call it a “resource room.” I don’t care what they call it as long as he can get his academics done there! He will spend the mornings in this room with his paraprofessional.

After lunch, he goes to either keyboarding or R & P (rhythm and play). Then, he returns to academics in the regular education room. He will get another dose of math along with social studies and science. Social Studies and Science are his two favorite subjects.

On previous tests, Brandon has scored well in Reading (above grade level; superior level). He has scored low in Writing and Math (below grade level; low scores). That wasn’t any different this year, either.

But what *was* surprising is the work that he is doing in the resource room. Miss A has been working with him as his special education teacher, along with the help of a paraprofessional. I’m SO ecstatic at his progress!

She was absent today but provided a letter for the IEP discussion.

I was floored when reading the letter. But more on that later.

His reader is grade level 4 (level 9). His first week of school, (August 12^th, 2010), he passed 29/35 of his books for level 8 (third grade). He only needs to pass 25 to move to the next level. So, here it is about a month later (9/15/2010), and he has passed 18/39 books for level 9. He will soon be moving up. Possibly at the end of this week.

The math book Miss A uses is for grade 4/5. She states that when he gives effort, his scores are high (100, 80, 72, and 75) and yet when he’s determined not to do the math, his score is low (46).

Mind you, Bboy is officially in the third grade. *THIS* is exactly what I had been saying for the past two years. He needed the right academic setting to succeed. He needed the right amount of support. I’m so glad that his school now recognizes that and it has been evidenced by Miss Anne’s letter. Yes, his scores are low. That is because in the testing environment, he is not given the “support’ he needs. They can’t. So, without proper support, he cannot succeed. But, given proper support, he not only does grade level work, but ABOVE grade level work.

What is the proper support? More attention from the teacher. Attention that doesn’t coddle him but expects him to achieve. Attention that doesn’t make excuses for him but rather provides encouragement. And more challenging work. He’s been bored. However, regular education teachers cannot go above grade level; regular education teachers cannot provide the one-on-one attention he requires.

Also attending the meeting was Scott Farmer. I was so glad to get to meet him face-to-face today. We’d corresponded before over the summer. Mr. Farmer is the Federal Programs Director of the school district in which my children attend. He decides (well, with others) where the federal money goes to within the school district. We had corresponded about the need for a math program for the earlier grades (Pre-k-2) because currently the school only offers reading during the summer. I appreciate his attending the meeting and offering his valuable input.

Even though my son has moved on from those grades, I had corresponded with Mr. Farmer about the needs the children have because I know my son is not the only one who would benefit from a math program at that age. There are many kids who progress just fine with reading but need math help. Those children deserve the help just as much as the children who need and receive help with reading. Mr. Farmer was very concerned about this need as well and perhaps some future decisions will be made to cover that.

I have to say that while I may not have always agreed with school staff in prior years, at any of the schools, with regards to how they do things in general and in specific with my children, for the most part, they are courteous, respectful, and do care about children. I know any time a parent has to “battle” for services, this attitude sometimes gets lost. The child and his or her needs is no longer the focus but personal attacks are (from either side) against each other and/or the district as an entity. I want to remind parents that you can disagree with the school but follow the protocols in place to rectify that.

Stay with a positive and respectful attitude. Your child will receive the proper supports in the end and no amount of shouting, rudeness, or personal attacks will get that any faster and in fact may (in some cases in some states in some districts) result in delaying the services as the school staff begins to “fight back” just as a response to the parent’s (sometimes justifiable) outrage. But it would do your child far more to remain calm and professional as possible.

If you find that you have a need to scream, yell, curse, and otherwise vent, ask for a break. Step outside and yell at the top of your lungs in your car. Or mutter under your breath to yourself, pacing back and forth. Whatever it is you need to do so that you can return to the meeting with a clear head and a calm manner. And remember: it’s always about the child’s needs and not about “winning.”

Now, what had me floored from reading the letter his Miss A sent? She had Bboy walk from her room to the office, retrieve a phone book, and bring it back to her. Alone. Unescorted. And He Did It. Without getting lost or distracted!

Bboy has always had a "shadow' at school. It could be a school staff member or fellow student. From the time he steps off his bus until the time he gets on his bus to go home, Bboy has not gone anywhere in the school alone. This is a good policy.

However, the time has come to teach him to be independent. And this was step one. And he did it. All by himself.

Okay, so to some parents it may be a small deal but to parents like me, I know you understand why I'm buying him a chocolate bar to celebrate later :)

At-Home Days

Wed, 01 Sep 2010 16:20:14 GMT

Today my son Thomas and Brandon are having "at-home" days. These days are because they are experiencing extreme difficulty with symptoms of their autism. Mostly, it's the pressure to "perform" for their peers and authority figures at school to be more "normal" than they are. It takes a lot of effort on each child to maintain a controlled presence in the face of all they experience.

Occasionally, I will pick up on signs that it's getting to be too much. They've been back in school a month now and usually these at-home days don't pop up until the third month. For whatever reason though, there were definite signs that it was getting to be all too much.

For my oldest, who recently turned 12, getting him TO school is a chore nearly every day. Yet, during the summer he whines until he can go back. It's the getting up, showered, dressed, to the bus stop, the bus ride, and "arriving" at school that is the actual problem. Once he's there, he's usually good to go. For someone like him who has extreme difficulties with executive functioning tasks (getting organized and getting to places on time, etc), this morning routine can be draining.

For my youngest, who is 8 years old, the problem is at school, once he gets there. He travels on a special bus at special times so to avoid the "crowd." When he's at school, he's in a large class. This year, he has two teachers. He spends a half day with his classmates with one teacher; then, after lunch the whole class switches to spend the remainder of the day with the second teacher. This is the first time he's done this as a student and it's quite disconcerting for him. Even though the whole class switches with him, it's the whole class that switches with him.

We have plans that in a month or so, depending on how well he does with this, to switch him. The second half of his day will be spent in the resource room with his one-on-one aide and a small group of children on a developmental level similar to his. This will probably help towards ending the need for "at-home" days as it's less stressful for Bboy.

For different reasons, both boys at times need a day off that doesn't fall on the weekend or an otherwise scheduled day off from school. I do my best to limit these at home days because if they are to attend school at a brick-and-mortar location, it is in their best interest to attend on all scheduled days. As I said though, there are signs that they are cracking.

For Thom, it comes in the form of surliness beyond cranky. He will begin to absolutely refuse to do anything that does not involve his favorite subject of the moment (Yugi-oh! again). This includes showering, changing clothes, watching TV, reading, going on to the bus, getting in the car, and sometimes even going the bathroom. Some may say "Well, make him!" I cannot physically force this child to do anything. He is 5'5" and about 180 pounds. He's taller than me. I cannot MAKE him to anything he doesn't choose to do.

For Brandon, he is usually happy-go-lucky and will do any chore requested of him, no matter what it is. He's happy and giggly and loves making jokes. For him to turn around and start becoming surly is a HUGE sign that something is not right in his world. He begins to cry when the bus shows up, telling me he'll get "hurt" at school but can't tell me what gets injured, other than his mind. That, to me, is a huge sign he's on overload.

Yes, Thom is often surly by nature. That's just a part of who he is a lot of the time. But this absolutely refusal is different than his arguing to do something. He'll do it, you'll just hear about it, is the usual course of events for him. To absolutely REFUSE, even under the threat of punishment, tells me that overload is occurring.

Those signs pop up and I look for the source. It is not always school that causes overload. There are times where going to church, bible study, friends' houses, etc. that cause similar overload. I limit the activity that is causing the overload. In this case, today, school has overloaded both of them. Usually it is just one or the other. This is the first time it's been both.

However, just because they need a day off from the pressure of a large group doesn't mean they need a day off from school or learning. Bboy always has work that needs completing in his school bag and that is what he works on when he's home (reading, math, writing exercises).

Thomas usually finishes all his work in class and so doesn't bring home work. However, the school offers a website where kids can log on and do work via a program. That is what T works on for his "at-home" days. He can work on math skills, reading skills, writing skills, and computer skills (such as typing). He also has an essay he needs to work on.

Well, a storm has arrived and so I will post this. I'm just sharing this because there may be parents out there who may be interested to see how one family handles things.

This may not work for every family. Plus, laws governing absences may differ. My children have this “at-home” option written into their IEPs (Individualized Education Plans).

Autism and Birthdays

Fri, 27 Aug 2010 12:21:04 GMT

My oldest turned 12 yesterday. I had read a post on Autisable that got me thinking. It was about a six year old's reaction to a surprise birthday party. It's presumed the child in question has autism. Many people with autism do not like surprises and her reaction could be described as "typical."

I stopped to ponder about T, my eldest, because his birthday was coming up. We had always strived to maintain an element of surprise with his birthday presents and what cake he got, etc. We had hoped he'd learn to cope with surprises by using opportunities like these. After all, not everything in life is predictable and at some point T is going to have to learn coping skills, right? Right.

Well, it got me thinking and this year we tried things differently after asking T about whether or not he wanted surprises. He told us quite frankly he did not want any surprises.

I let him pick out his presents, his cake (and cupcakes cause he couldn't make up his mind which he preferred), who would or would not come to the "party" and so forth. I had been trying to maintain that element of surprise at least with his gifts. Until this post, that is.

When he told me he wanted to know what was going to happen on his birthday, including what gifts he would get, I thought of that post. I said, okay, fine, I'll tell him and we'll see how this goes. So, I gave him the idea that we were going to give him money. He wanted the money NOW so he could buy his presents and have me wrap them for his party.

I told him no because when someone gives you money, they give it to you in a card, and the card is important, of course. And so he kept pestering me, telling me that the card is NOT that important and he wanted his money.

So, the day of his birthday, when we went to pick up his cakes, I gave him the money. No card. As I dropped him off at GameStop to buy his very-much-wanted-game, he said to me, "Hey, mom? Can you maybe pick me out a card so I have SOMETHING that's a surprise at my party today?" in a tone that implied that *I* had somehow robbed him of surprises on his birthday, all on my own, without his input!

Grr.

Autism and Cleaning

Mon, 19 Jul 2010 01:06:10 GMT

I have two sons. Both are on the spectrum, at different points. Both are extremely different in personalities too, so it shouldn't be surprising to me about how different they are with their cleaning.

T, my oldest (he'll be TWELVE on August 26) is also the messiest. He reminds me of Pig Pen from the old Charlie Brown comic strip, Peanuts. I don't have to wonder where he gets it from: he gets it from me.

My father used to call me that when I was little. Little dust clouds just seemed to find me. I remember one time when my sister was in charge of getting me dressed and bathed in the mornings for school. My parents had divorced by this time and my mom worked a lot. So, my sister took over the morning routine to let my mom sleep in after working a late shift. Well, she would do her job just fine, but it never failed that by time I got to school, I was absolutely filthy. I went from our house, ten steps away, waited maybe four or five minutes, got on a bus, rode for an hour, and arrived at the school looking like I hadn't bathed in months. The school called protective services. I pointed out to CPS that it was NEW dirt. LOL

But T... man, his room! I was messy as a teenager. I was a hoarder. But I didn't save TRASH. I wasn't one of those types of hoarders (although if the disease had progressed, I'm sure I would have at some point). T? He saves trash, dirty clothes, toys, dirty plates (I swear he takes them from the sink and puts them under his bed!)...and he hates cleaning it all up.

B? He'll clean up after himself. He has since he was a kid. But after living with T for so long and his parents who are mostly unable, well... he's been slacking too. But naturally, he's the cleanest person in the house. I went the other way after I received treatment for hoarding. It's all the same: OCD. Either you're obsessively clean, or obsessively messy. I didn't realize it was the same thing until years later and went back for more therapy after I also developed compulsions. I'd say B tends to lean towards that side of things.

Now, when it comes to clean up time (1/2 before bedtime starts, it's a kickoff to the bedtime routine), the two react very much alike. Neither one wants to do a thing. They want to finish watching their TV show, or now all of a sudden they remember this or that thing they HAVE to do right then.. etc. This is why it starts 1/2 hour before "bedtime." It really only takes five minutes, max with full cooperation. But it takes 25 minutes of excuses, stalling and whining to get to the full cooperation.

A twitter friend (@CorinaBecker) had recommended a way to get Thomas to be more independent in cleaning his room (right now, I would have to stand in there and point out the things that need cleaning, in a systematic order). She said to draw a visual map of the room, and make "quarters" and have him clean up a quarter at a time. Or whatever works for him but using the map of his room as a visual aid.

So, I had T make the map. He's way better at drawing than I am! He took it seriously, too. He used graph paper so he could draw it to scale and everything. I then took pictures of each quarter of the room so that they fit into his drawing. This was so he could see what it's SUPPOSED to look like when he's "done" cleaning. If he comes out and says, "Done!" I call back to him, "Check your picture!".. and then a few minutes later he'll come back out and say "Done!" and I'll say "Check the next picture!" and he'll go back, and so on until all four quarters are clean.

This may not seem like progress to anyone else, but to me it is. This is a time where my behavior-based time out technique wasn't going to work because I didn't want to PUNISH him. I wanted to TEACH him. We (caregivers, teachers, professionals, anyone who knows anyone with autism) know how difficult it can be going from a state of dependence to independence for our kids. So, I wanted Thomas, who can cook a mean meatloaf all by himself, to be able to clean up his bedroom all by himself. It's a part of life skills that he'll need if he's ever to live on his own with a quality of life that I wish for him.

He's made progress. Yeah,sure, I have to remind him to use the system but the system is there. And yeah, he'll learn to rely on a system instead of just "knowing" but it's a step towards self-directed skills. Right? Right!

So, I made Brandon a map too. He's used it perfectly and absolutely adores it. He says, "Don't change a thing! No more rearranging my room!" **smiles** When we had housemates, we had to rearrange his room and he did not like that at all. But he's used to it now and so doesn't want to change it again. I won't change it again, unless he wants to, of course. I did tell him we COULD rearrange and just take new pictures but if looks could kill, the look he gave me would have knocked me out lightening fast!

So, if your kids have ability to clean but have some executive functioning issues on WHAT to do to make it clean, this idea might help you, too :) (okay, no one mention that I begun using one for the rest of the house too hehe)

There's nothing to do outside.

Sat, 03 Jul 2010 18:50:17 GMT

I have 2.5 acres of land in beautiful Oklahoma country and when my kids are out of school for the summer, the phrase, "Go outside and play" is often uttered so that I can get work done. But the most often used phrase is response is "There's nothing to do outside!'

Is this just a byproduct of today's electronic-dependent culture in America? Is it an Autism thing? What? I think it is less to do with autism and more about the electronic-dependency. But I'm not sure... bear with me while I explore this.

If it doesn't plug in or require batteries, my kids don't seem to know how to play with something. The exception is my Bboy's obsession with Monster Trucks and hot wheels cars. But, if I bought them a toy that doesn't "do" anything, they have nothing to do with it. It goes in the toy bin until I clean out the toy bins before Christmas and summer (twice a year) and donate it to the next family whose children WILL appreciate it.

Recently, I had housemates. They have since moved out into their own place (Congrats to them). But I watched the difference between her three children and my two. None of her three have autism. One of them does have special needs (oppositional defiant disorder) but not autism. She sent her kids out to play in our yard (2.5 acres). They were out there until they got hungry. I had sent my boys out there with them. They also stayed outside until they got hungry. They seemed to be having a good time. I have no idea what they were playing (couldn't hear them from inside looking out the window) but all five kids were engaged and talking. Bboy often wandered away and one of the other NT kids would bring him back to their play area and have him re-engage with them.

Since they moved out, we've gone back to the "There's nothing to do outside!" chant. I asked, "Well, what did you do when Misit's kids were here? You all seemed to have fun then." And T replied (11 years old): "Well, we played but I don't remember what we did so now we can't do it." *sigh*

I was thinking back to my childhood. I also did not have a problem playing out-of-doors all day, coming in for lunch when the other kids went in for lunch (they seem to be able to tell how much time has roughly passed without a watch, I cannot). I'd go back outside and play until the street lights came on-- our family (and everyone else's on base) cue that it is time to come in. We had woods that we would explore (and make fires in to cook marshmellows, build tree houses and forts and play house). We would take turns playing at each other's house (in the yard) and play house, tag, etc. We'd also make up dances to popular songs of the time (Rock me Amadeus is still my favorite of all the dances we did. Yes, I still remember how to do it. Why can't I remember to take my pills every morning??). There's was ALWAYS something to do for me growing up. If I had no one to play with (because we had a fight or they weren't home), I'd read a book or watch TV. Or play Barbies with my sister. Or play GI Joe rescues Barbi with my brother. But there was ALWAYS something to entertain me with.

Now, though, if I look back hard enough? None of those were ever *my* ideas. I never said, "Hey, let's do this!" Someone else always thought of what to do.I'd go to my sister and tell her how bored I was because I had no one to play with and she'd either play with me or my brother would invite me to tag along with him. I had a vivid imagination and would make up stories easily (fiction) but... it seemed the way kids typically use their imagination, I did not. I could look at a toy box full of toys and not know what to do with them until I saw someone else playing with it and then say "Oh, so that's what you do with it."

So, maybe it *is* the autism. After all, we know kids with autism don't do as well with imaginative play as their NT counterparts. So, I'll just have to adapt and figure things out and come up with a way for my boys to develop ideas on "what to do" that does NOT require electricity or batteries.

Well, we have a pool now so that is taking up some of their time. But I think the time has come for them to stretch their brain muscles a little and start thinking of things to do on their own.

What do you think? Do you have similar problems with your kids? Do they have autism or are they NT (neurotypical)? What do you suggest I do to help them learn to play imaginative games?

Autism and Sunburns

Sun, 27 Jun 2010 19:35:21 GMT

I'm not sure if there is a correlation between autism and being easily sunburnt. I do know that for me and my youngest, we definitely have trouble maintaining body temperature and often get sunburned easily. My oldest takes after his father and very rarely burns. Or at least, that had been the case.

This summer the boys have burned more easily than ever before. I started buying Coppertone for Kids SPF 50 continuous spray sunblock. You get two bottles (6 oz each) for $12.50. Quite expensive, but SO worth it! That stuff rocks! We get tans with that stuff on but we never, ever burn. I even use it for myself although it's labeled "for kids." I need the higher SPF than most adults seem to.

Well, yesterday my housemates watched my children while my husband and I slept in. That was VERY kind of them! They decided to go away for the weekend to a family member's house and so woke me up because my kids were going to stay in the pool. I didn't think anything of it. I let them swim for another hour or two and then called them in. They were pink all over and I thought "Ut oh!"

Sure enough, no one had put sunblock on them. My oldest said he thought we were out; otherwise, he would have done it for himself and brother. I wonder if my roommate thought the same thing. Or maybe she didn't think about it all because her kids rarely burn. They are out in the sun a lot and I think the kids' skins have adjusted to the rays of the sun, whereas my kids stay indoor much more than hers does. So, maybe that's the difference. I'm not sure.

But I do know that my youngest now has a second-degree sunburn. Learn from us. Use sunblock EVERY TIME. If someone is babysitting, make sure they know where it is and to use it. Even if your children do not burn easily, it's best for them to have it on anyway to protect against other types of sun damage and skin cancer later in life. Develop those good habits now, and they will keep them up later.

Sociology experiment

Sun, 27 Jun 2010 02:32:11 GMT

This past week or two, I've been working on an experiment for my psychology course. It involved breaking social norms. Well, that should be easy for someone like me, with autism, since everyone seems to believe we don't recognize social norms nor do we care if we break them. Well, I may not recognize something as a social norm, but when it's pointed out to me that it is, I then get worried or upset over breaking them, maybe even more so than my neurotypical peers. Below is the report on my experience.

The social norm that I chose to break was number one on the list: “Go into a store, or board a bus and sing out loud.” I felt this social norm would be the one that would offer the most hesitation. I am an adult individual with autism and the majority of time I am unaware of such things like social norms. For instance, I have gotten dressed up to go to McDonalds (just because), I’ve worn pajamas to school or other places since I was 16, I’ve ridden elevators backwards, I’ve sat in cafeterias at public food courts even though there were people there that I didn’t know, and I’ve asked someone for their seat on a train when there weren’t any other available. Imagine my surprise to see those items on the list!

Even the item I did choose to violate does not seem to be such a big deal to me. I’ve seen other people singing out loud to the songs on the loud speakers of stores or if they have headphones on and finding a particular song a “good” one. What makes it problematic for me is that I do not have a good singing voice. I did not know this until I was in my teens and my father compared it to cats fighting over fish bones in a back alley of a restaurant. From then on, I noticed when people would scrunch up their faces if I sang and I began to realize that not everyone appreciates my vocal travails. And, so it would make it an uncomfortable idea for me to break out in song at a local supermarket or anywhere there are other people. I’d be afraid of their reactions to my voice.

The first time I broke the social norm and sung out loud was at my local supermarket called Marvin’s. I had chosen that place because it would have other people but it is often not crowded. I went at about 6 p.m., just an hour before closing. There were a handful of other people around me shopping and an employee stocking shelves. The store does not play music on the loudspeaker and so I had to sing a song that would be familiar to me. I did practice before leaving my house a song, “Can’t smile without you” by Barry Manilow. While few people admit to being a fan of his, many seem to know his songs.

I noticed that my heart rate increased as I was counting to ten before singing. I also noticed I had started breathing more rapidly. The idea of someone reacting negatively towards me was scaring me and my body was reacting to that fear. As our text points out, our body when faced with danger (fear is a result of perceiving danger) prepares a flight-or-fight condition. I had no idea what anyone near me would do; would they stare? Would they laugh and point? Would they make me stop? It was nerve-wracking! I no longer sing out loud in front of anyone, not even close friends or my husband, and I was about to do it in front of strangers.

After I got through the first verse, I opened my eyes. I had closed them as a response to my fear of their reactions and then remembered I had to report on their reactions. One woman was smiling in my direction. A second was just staring at me, openly and blank-faced. It was almost like she was just shocked. The employee started singing along with me and then another man joined in with us. The woman who was smiling began to also sing along. The woman who had just stared at me ended up smiling at us, shrugged, and then joined in too. Two other males were near-by (further away than the others) but did not look our way and continued walking in another direction with their carts.

I think I noticed the effects of conformity within the responses of those bystanders. Our text, in Chapter 14 (Social Psychology) defines conformity as “adjusting our behavior or thinking to coincide with a group standard.” This was evident in the woman who was at first shocked by my belting tunes out in a store. After seeing three other people join me, she herself joined in. It was much like the experiment conducted by Solomon Asch, as described in our textbook (page 381), when faced with a group of others giving (obvious) incorrect answers, the participant felt pressured to also give an incorrect answer.

I’m left to wonder how I would react if I was a bystander in this experiment. I have never joined in to someone singing out loud but I do smile when it occurs. I love that person’s level of self-confidence and appearance of being free of the need to conform. I wondered though, would the reactions be different if I sang in another locale such as a library where you’re supposed to be quiet? And so I went to the local library and started singing out loud. There were five children near-by and three adults, not including the librarian.

In this particular situation, none of them sang along with me. The children giggled nervously because they knew I was breaking a rule that is established. The other three adults gave me stern looks as if that would make me “behave.” Even in the face of those reactions, I continued singing, this time while smiling. The children giggled louder and the adults starting shaking their heads as if to say, “Shame on you.” The librarian then approached me after about four minutes and told me I had to stop singing or leave the library. I apologized to those around me and walked back to the counter behind the librarian. I did explain to the librarian that I was a psychology student conducting an experiment on social norms. She laughed and said that I was welcome to come back any time as long as there was no singing involved.