Use Adjusted Age

I haven't seen many of you in a (half-decade) while. How are you all doin'?

I wanted to leave this little note, to say this blog was very helpful to me. Though technically Asperger's has been psychologically erased, sliding over to let autism be the umbrella word, my Aspie son is now 21 years old. That's right, we've come out the other side. Whhew.

Frankly, it doesn't much matter anymore, his label. After maybe his second year at state college, it really didn't come up anymore that he has autism, though he might talk about it with his doctor or psychiatrist, medium-rarely with friends and professors. I guess I just wanted to show you a glimpse of what it looks like from over here.

The world of autism has changed! Mine was diagnosed at 8 years old, and then there wasn't much help for him in terms of increasing his abilities in deficit areas. We are the trajectory they show you, the lower one on the chart that didn't get intervening services and therapies at 3 years old. I was his therapist, as I'm sure many of you understand. We dealt with things as they came, day by day. I'm happy to say we conquered. Mostly. He conquered. I survived.

His little cousin is at the top of the chart, receiving concentrated help with his issues 2-3 times a week. A lot of his challenges, which would otherwise be spread out and handled one at a time, are assessed and addressed all at once. His sloping trajectory should land him in a better functioning place by the time he is in college. The therapy is really challenging. I used to think that so much hard work was unfair and too taxing on their little bodies and minds. Maybe it is unfair, if such a thing exists, but I was wrong---these children can handle much more than I thought. Maybe it was me who couldn't handle more? I'll leave that for another day, or never.

My son is doing GREAT. He has 45 college credits spread over the last 2 years. He lives at home, kind of in his own section of the house. He does his laundry, and could survive making cereal, sandwiches and frozen baked foods. Pizza delivery is in his contacts on his phone. He also has a Lyft app for when he needs a car ride, otherwise he rides his bike the 4 miles to his school. He mows our lawn, does the dishes if I ask him and occasionally helps with walking the 3 little dogs.

It's not helpful to compare ourselves to others. It's also not helpful to constantly be critiquing him on how he is doing with his challenges. For him, he needs success, he needs positive feedback and rewards. We try to focus on what he is doing well, and slowly encourage additional goals. Ha, like us all.

I did want to say: what is most helpful now that he has graduated from high school, is thinking of his development in terms of his adjusted age. Many aspies developmental age is about 70% of their real age. So he is 21 now, I try to think of him sometimes as about 16-17 years old. It helps to not be overwhelmed with where we THINK he should be. Would I expect a 17 year old to move out, have a job, and get good grades in college classes? No. Not all at once. We did consider a CIP program when we were in Indiana, and also here in Florida, where they work on all of it at once, abruptly, after they turn 18. For us, that probably would have resulted in a deepening depression and return of suicidal talk.

All our children are different. I'd love to hear how yours are doing.

Respect,
Tami

What are you doing? a cute film about Autism

This short film was put together by Autism Awareness Australia.  It approaches education about Autism through the eyes of brothers, sisters and friends of children who have autism.  A great resource to give to your son/ daughters teacher to show their class.

Issues and questions to discuss when you go to your next IEP meeting

Image: Flikr creative Commons- Puuikibeach

We are on school holidays here in Australia so I thought I would sit and write a reflection on Individual planning meetings.  I know this blog has many readers who are parents of secondary age children who have gone through the IEP process.  Therefore I've put together a list of items to consider and discuss.  Hopefully this will empower you when you attend your next planning meeting.

I’m a special education coordinator at a college here in Sydney and also an advocate for inclusive education.  I thought I would write this post about getting it right in the Individual Education Plan (IEP) meeting.  I see the IEP as a plan for the year ahead.  I like to use the Engineer/Architect analogy when describing my approach to the IEP process.  The Architect has the technical knowledge of the systems and the workers. He/ she will know what will work within the system.  Like all professions you can sometimes get ridged Architects (special Ed coordinators) who can only work through one model and you can find remarkable Architects who can create a harmony between the clients (parents, students and school) and the fruition of the plan.  Therefore I find I get the best results from parents who come to the table prepared with a clear set of goals and willingness to problem solve and discuss strategies. 

It is crucial that this plan is in place, especially in a secondary school where students may have up to nine teachers.  I find having to deal with so many teachers’ expectations, systems and styles causes considerable stress and issue for students with Autism.
 

I find most parents of students with autism are excellent advocates for their children and are an excellent resource for strategies.  For example they know exactly what the best blockers are for managing their child’s stress; they know exactly what things will trigger anxieties and what things will inspire their children.  In an ideal situation the conversations are open and look to coordinate the best possible strategies to support the student.  In some cases however parents come up against that ridged architect (Special Ed administrator) and the IEP process becomes a dictation of what the school has to offer.  Therefore here is a list of considerations you should raise within an IEP meeting to enable you to be a better advocate. 

-          What targets do we want to achieve this year? It is important that a set of targets or goals is developed.  This will enable you to measure progress even if it is very small.  A goal may be as simple as saying ‘good morning’ to the homeroom teacher to as complex as self-managing anxiety through a behaviour strategy. 

-          What support is going to be provided?  It is always important that the student has someone who they can use as a go to should they feel anxious.  Will there be in class support?  What classes are going to be supported and what classes are not?  When exploring support it is important the student be consulted.  Thrusting close support upon a student is not always the best approach.

-          What happens when things go wrong? What safety mechanisms are in place when issues arise?  Does the school have a quite ‘safe’ place for the student to go to during break times or when they cannot cope.  What happens when the student has a meltdown or refuses to come to school?  The plan is never set in stone and should always be open to change if things are not working.  

-          Who do I contact when things go wrong?  I find that in many cases students with autism will bottle up much anxiety and will wait until the get home to ‘explode’.  A call from a parent will sometimes be the only indication that something has gone wrong.  It is important the you have a school contact who is available and willing to listen.  A classic example I can think of is a call I had this year that averted a meltdown when a parent called to tell me her son had forgotten his apron for cooking.  I was able to catch the boy in the morning and give him one to borrow. 

-          How and what information is disseminated to teachers?  This is important as there is nothing worse than going to a parent teacher consultation to have teachers surprised that the student they had in their class had Asperger.  Thankfully this is rare but unfortunately I’ve known it to happen.  It is also important all teachers are using the same strategies and understand the student. 

-          What curriculum strategies are going to be put into place to support the student?  I have a problem at the moment with a number of the students with autism who also have an intellectual disability.  The students love coming to school and the parents are so happy with the placement as it is caring and supporting pastorally but academically it does not meet the needs of the student.  Whilst as a parent you will not be familiar with the curriculum it is important to ensure the curriculum sets high expectations and students are not left sitting at the back of the class. 

-          How are outside agencies incorporated into the program?  It is common for outside agencies such as psychologists, Occupational therapists, counsellors, Speech Therapists to be present at the meeting.  It is worthwhile exploring how these are connected to the school.  If the support is external it is worth ensuring the school has a relationship with the outside support to reinforce or support strategies. 

-          What other programs are going to be put in place:  social skills groups, anxiety management groups, travel training, school to work transition programs.  It is important that these are explored

I’m sure there are other points that are discussed but this is a good start.  As you can see the meeting can take some time especially if a number of teachers and specialists are involved.  I’ve only been on the teacher side of the table so I cannot speak for parents so any additional advice on what works would be a great resource.

I also write a blog called Australian Inclusive Education it seeks to explore research and strategies for promoting Inclusive Education.

Who Picks up the Slack for Me?

A dear friend of mine asked me to post this for her as she felt unable to risk posting it herself. Can any of you relate? Can you help? Or even just comment to let her know someone else in this crazy world we live in, gets it.

Image from visualizeus

I recently saw John Elder Robison (author of ‘Look me in the Eyes’ and ‘Be Different’) speak. He was brilliant and inspiring. At the end of the discussion they had a question time and there was a lady in the front row who asked, “I am a wife of someone with Aspergers and my question to you is how does your wife stay married to you?” 

This sounds incredibly shocking doesn’t it? And for a moment I gasped and then I realised that John took no offence to it what so ever. In fact he answered that she did not stay married to him, but he found another wife who did. He answered that for their marriage (the second and current marriage) his wife has a high emotional capacity where his is low and he has the high logic capacity and hers is not as high, so they are a good match. Also that she does not expect things of him that he cannot give, she knows his limitations and they have open communication, she doesn’t get cross at him for things that he ‘should’ know. He expressed regret that he couldn’t help this lady more in his answer and mentioned that he is asked that question often from women all over the world.


I sat there all inspired about how awesome Aspergers is and thought to myself, “yep, that’s so true. Don’t expect things, you need to be specific and ask for them”. Feeling all smug I drove home.


I have a son who was diagnosed with Aspergers nearly 3 years ago... he is 8 now. My husband as a child was diagnosed with ADD but since receiving my sons diagnosis we have figured that perhaps that was wrong and we strongly suspect that he too has Aspergers. I think that the best way to describe the ways in which his ASD (or ADD officially) affect him is that he expects things to be done ‘his’ way. He thinks something and says something and expects that instantly you will understand and agree. There is no grey area, if I have not heard properly or the question is not said explicitly enough for me to understand and I ask for clarification I am met with exasperation! Things are meant to be done a certain way, to do them other ways is met with great frustration.


Rules... not written in stone nor a poster on the wall but rules written in the fabric of his life which we need to comply with. Internal focus, incredibly intrinsic focus. I will stand and listen to a discussion for 10 minutes about something in particular that has happened or of interest...then I start talking and at times he just walks off, or he interrupts or changes the subject. So I stopped talking. Then I am in the wrong for I do not share, I do not discuss things with him.


Questions are asked in statements which come across at times incredibly harshly.”Didn’t you get milk today?” instead of “Did you get milk?” When I point out the different ways these two sentences make me feel I am questioned as to what the difference is? Why should he ask if I got milk when it is obvious I didn’t because there isn’t any there! My thought to that is (it used to be the answer but then the argument following and exasperation at my not understanding his logic and point of view is not worth the time) ‘why even make the statement then if you can see that there is no milk!’


His mother is from the old school of doing absolutely everything for her family. Everything. I admire the loveliness of her home and the way in which she brought them up securely and comfortably with beautiful food on the table each night. I do not admire the fact that her son had developed a preconceived notion that that is the way things should be done for him for the rest of his life (a notion which she told me I had an obligation to do for her son... we haven’t talked much since that day). We married young and despite my voicing the fact that I did not grow up in a house where the woman did everything and therefore would expect him to do things around the house etc, my words obviously fell on deaf ears. Or did not fit his preconceived rules about the role of a wife and mother.


Standing in the kitchen he will say, “just look at this place! It is such a bloody mess!” and then he will turn on his heels and walk out of the room. His plate has in the last year been transported from the table to the bench after dinner (after much nagging to change the before behaviour of simply leaving it there and walking away). I could push and nag to get dishes done, but more times than not the banging and crashing of the plates and cutlery as he does it either smashes one (and it is never his doing, always a cause of the dish or the way I had stacked them) as he expresses his disgust at doing them in much the same way my 6 year old expresses his disgust at packing up his toys! It is not worth the hassle.


The world owes him much. I owe him much and it is my job to make sure that all of our worlds just keep on flowing and ebbing along nice and smoothly. I do all the sports runs and therapy and school runs... I also work. Anything to do with the kids... I do. I am not bitter about this, I love my kids more than anything else and would do anything for them. I love my husband too... but I am not sure how much longer I can be all of their alls.


You see I am diagnosed with depression and have recently had an increase in my meds which has caused a decrease in my coping skills! Clearly there is something in me reacting to them and I am seeing my therapist to discuss it today, hopefully if I change meds I will regain some control... control... which has at times over the last few weeks been completely void in my life. I cannot cope with the day to day. I get through the things that need to be done and then am too exhausted to deal with the things that should be done and well need to be done but if no one is coming over then they can wait.


Dishes, washing, sweeping, vacuuming... housework.


My husband knows of my depression and downward spiral and yet other than trying very hard to regulate himself so that he doesn’t say too many negative things to me he has done little else.


This morning I went to pay for my daughters swimming program through school. The note had been lost under the car seat and we had not paid the deposit for it. She cannot go as a result of this, it is too late. I got to the car and drove off past the school before the tears began to fall. By the time I pulled in the driveway at home I was sobbing. My toddler asked me if I needed to wipe my face and I answered "yes I do honey." My friend is coming here in about an hour and a half to watch my toddler as I go to the therapist and my house is a complete disgrace. I stood at the bench, barely seeing through my tears and feeling like a complete and utter failure and the thought popped into my head...


Who picks up the slack for me when my world is completely falling apart?


That smug version of me, agreeing with John Elder Robison that day and the advice he gave to the wife of a husband with Aspergers, is currently living somewhere else.
Right here, right now I am her best friend, her carbon copy and I am wondering... how do I keep doing this? How do I keep taking the constant negativity, managing meltdowns from all the children and my partner, always trying to do and be everything because it is easier doing that than putting up with the arguments or discussions about it? To leave him feels like a betrayal as he cannot help the way he behaves... but then I think of the therapy I am doing with our son and wonder why it is that he is unwilling to try? If his son can then why can’t he? But to leave feels just as hard as to stay.


Are you married to someone with Aspergers? Are you that lady on that day wondering, how do I stay married in this situation? Do you understand?



on behalf of a friend.

I Had To Have The Sex Talk With My Son And I Lived to Tell About It

I had “The Talk” with my son. We both survived, barely. He is twelve now, and I know what you’re thinking: WHY are you just now having this discussion with him? Do you live under a rock? Don’t you know what kids are capable of getting into these days? Do you want your kid to be a statistic?

Believe me, I get it. But you have to understand…I have tried to have The Talk with my son before this, many times. Each time, he politely rebuffed me.

My son has High-Functioning Autism. It is as the name implies. Some professionals call it Asperger’s Syndrome. It means he has trouble with social cues, reading body language, some processing problems as well as trouble controlling his impulses, like anger. He is easily embarrased, so it didn’t surprise me that he did not want to discuss his burgeoning sexuality with his mother. This is the kid who hides his eyes if I take him with me to mall and we happen to pass the lingerie store. There have been no shortage of attempts on my part to usher him into the ways of the world. He always swore he was not interested.

So when I found that he had been googling, “penis” and “breasts” I figured, protest though he may, it was time. I am a smart woman. I have safe search on, so he didn’t find anything except Wikipedia pages…no trauma. I get that kids, boys in particular, can be curious. I am just thankful that no damage was done! And I am also grateful that I have enough technical savvy to know how to lock down the computers!

So, how do you talk with your son about something you both find highly embarrassing without losing your mind? The answer, it seems, is just do it. Do not make a big deal about it.

Five Ways to Discuss The Subject Without Wanting to Run and Hide

1. Be as matter-of-fact as you can. Lay out the information without a lot of emotion, as though you were tutoring someone who speaks a different language. We are talking autism here. That is, after all, what you are doing.

2. Refrain from idioms, editorializing, and heavy opinion. All of these will be ignored by a kid with autism. He probably won’t get most of them, anyway. It is easy to get “on a roll” and end up losing the kid halfway through the process.

3. Don’t bother asking, “Do you understand?” He probably won’t admit it either way. Just lay out the information as best you can. If you are good at reading your child, you can elaborate if need be.

4. This is a good time to explain society’s views on women, respect, pornography…just try to do it without making the kid feel belittled. Did I like that my son googled body parts? NO. Did I tell him I don’t want him to do it anymore? YES. Did I make him feel like a bad person? Absolutely not. Kids need guidance, and that’s what I gave him.

5. Refrain from what I call “Aesoping” even though it is very satisfying as a parent. This is basically when you say, “I told you so!” Kids learn from their experiences. You can certainly point out the learning, but don’t rub their nose in it. That only serves to make you feel bigger than he is. One-upping a child doesn’t make us better, it makes us bullies. And with a kid with autism, it makes him shut down.

Don’t get the wrong idea. I’m no Pollyanna. It’s not all roses and sunshine around here. I was floored when I found out my son had been …exploring google. It wasn’t easy. But instead of making it about me, and my parenting, and what I am doing right or wrong, I made it about my son. Having a child going through puberty is difficult. I can only hope I have set the groundwork for my son, and that if he does have questions later he can ask instead of looking in all the wrong places for answers.

All in all, it was a painless process for us both. But I have to admit: I am very glad that I only have one son! Somehow, talking to the girls is just so much easier.

Tina has two children on the Spectrum and one who is a quirky teen. Autism Sucks is her brainchild. She also blogs at her personal blog, Send Chocolate Now.

It Definitely Sucks!

For most kids at 15 your world is all about your friends.  Your family sucks.  Your parents don't know anything.  They don't get it.  They don't get you.  High school provides a connection source.  It's the place that you find most of your friends.  You take some classes you hate, some that you love, but your place in the hierarchy of this place can define a great part of your life.  Your experience here, shapes who you become to a degree.

High school can also be a place of shear torture for many kids. Being bullied, feeling left out, ostracized, desperately wanting to fit in, but feeling like you don't.  When you have Aspergers, an extreme deficit in social skills,  and sensory issues, you can multiply that torture X's 10 (at least).

It's near the end of the school year and Red is done, he's ready to check out.  Unfortunately you can't just say, "Sorry people...I'll see you next year, maybe."  You have to get through it.  Suddenly his classes are too loud.  There's too many people.  He hates this teacher and that teacher.

The bottom line is he's tired of feeling like a little gold fish in a huge ocean filled with sharks.
He's tired of swimming against the tide.
He's tired of not having any real friends.
He's tired of being surrounded by people but not being able to connect with any of them.
He's tired of the loudness of the classrooms.
He's sick of the sensory overload.

So he comes home and goes ballistic.
He screams to the top of his lungs at a simple request of taking a shower.
He rages and rants about how horrible his life is.
He becomes more aggressive more angry with those of us who love him.
He is miserable and he wants the rest of us to join the misery party.
He pounds us with scripts and demands to buy him new things that he thinks will make him happy.
He has yet to realize that things don't make you happy.

Everything that is wrong in his life is somehow my fault.
I am the person who works tirelessly to find answers.
I am the one he thinks can make things better for him.
I am the person that he knows loves him unconditionally.
I always forgive him.
This gives him license to treat me like crap.

I keep it moving forward...trying to help him and my younger son, who also has Aspergers.
Therapies, doctors, social skills, medicine, advocating, ARD meetings, IEP's, BIP's, carpools, entertaining
I keep a smile on my face, trying to focus on my blessings.
I pray and see small victories, but can't help but wonder why I'm not seeing any miracles.

To every thing there is a season, and a time to every purpose under heaven -Ecclesiates 3:1

In my head I know this is true, but when your child suffers, it's hard to figure out the purpose of that.  Help me Lord.

Please stop by and visit me @ Confessions of An Aspergers Mom
I also invite you to "Like" my Facebook Community Page

Denial

"To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment."
- Ralph Waldo Emerson

My boy denies Asperger his due. The paperwork claims a mood disorder and that makes it official.

My boy denies Asperger and the existence of God. He can't have faith without any evidence.

My boy denies Asperger and, from this day forward, he identifies with hippies. He has long since outgrown his James Bond tuxedo.

My boy denies Asperger and he doesn't see the point of Harry Potter. A modern day wizard is nonsensical.

My boy denies Asperger and he would prefer not to go on vacation. He doesn't like to be away from home that long.

My boy denies Asperger and he once wrote his own constitution. He used Russia 1906 as a model.

My boy denies Asperger and he gets anxious waiting at doctor's appointments. It's 2:34 now and shouldn't we be back there because our appointment was at 2:30?

My boy denies Asperger and he blogs for the local socialist party. He's 15.

My boy denies Asperger and he is an expert on Japanese fighting fish. He cannot row a boat.

My boy denies Asperger and he charms every teacher. He finds his fellow students to be a tougher crowd.

My boy denies Asperger and loves ethnic food. He doesn't realize his stepfather has taken him to his favorite Ethiopian restaurant for 6 birthdays in a row.

My boy denies Asperger and greatly admires Steve Jobs. He still thinks software should all be shareware.

My boy denies Asperger and believes being grounded is oppression. The dictionary defines it so.

My boy denies Asperger and cannot accept what he cannot change. He's never seen Asperger's syndrome in black and white.

~ I'm HeeWho and I blog at notthatgoodofaperson