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[canadatourismguy]

For those of you who did not see the original thread – http://chronicle.com/forums/index.php/topic,56599.0.html


It has been a year since I first posted about my son and his autism diagnosis. It has been a challenging but rewarding year. First, my son is now 3.5 years and is a very happy child. In the past year he has gone through a lot: 1) he started with four days of therapy a week; 2) he has since progressed to going to a half-day school program here; and 3) has adopted the gluten free diet (which has seen to help). With all this he is still only using an occasional word - but is progressing in all of his other targets quite well. In particular his social skills have improved greatly along with his small and gross motor skills.

Some observations I have had in the year of having a child diagnosed with autism: I am surprised at how much energy he takes up. We are constantly working with him and trying to get him to do things and it is quite tiring (I can not imagine the pain potty training is going to be). Add to that the stress of the tenure track and life has been quite interesting on that front. We still have an 11 year old as well and raising her is nothing like raising him - two very different stories to tell there. It seems that our previous parenting experience means absolutely nothing and everyday learning with him has been a real challenge. I am amazed at how many people say, 'he doesn't look different' to us when they are told he has autism. He is a very good kid but when his frustration level rises and he starts to 'head bang' or if he doesn't talk to the store lady or he doesn't like people touching him - it is amazing how many people perceive him to be a 'bad' kid or us to be 'bad' parents. There is a large misunderstanding of what autism is and what it is all about in our community. The expense of having a child with autism is tremendous. Even with a good health plan, we figure it cost us over $10,000 this year out of pocket and that is not including his gluten free diet. It is a strain on a family (we have had to give up cable, my wife has become a 'coupon queen' and no vacations this year) but it has pulled us closer together in many ways.

In total, having my son has been the best thing for me. My life really does have a new meaning. I used to think publishing five (5) articles a year was an accomplishment but now having my son play 'Connect Four' or sing 'Old McDonald' with me is now what I aim for. I have come to terms with my trading potential 'guru' status in my field to being better 'daddy' status in my home (and that was surprising hard to do upon reflection). I still often become sad seeing the struggles that he constantly encounters but happy and heartened that he takes them on with a determination and rigor.  I did not think it would be this kind of struggle but it has but with most things you have to work really hard to achieve the outcomes and successes become worth so much more.

[oseph]

Thanks for the update!  I am starting the autism journey with my son, and it is really helpful to hear other experiences.  We have only one child and will not have another after this diagnosis, so we are trying to reorient our understanding of our family around this.  I both love my son and feel guilty about wanting a "normal" child, but it just is not in the cards for us, and we are trying to accept that.  I also am trying to come to a different understanding of my career.  All of this has happened at a very bad time, and it is likely I will not jump through all of the necessary hoops to stay TT at my current institution.  It is hard seeing my hopes for my family and my career go down the toilet at once, but I am trying to remain optimistic, and certainly I am working hard on child and career fronts.  We also are terrified about the cost - our insurance will cover very little, and we have been told to expect 30-70k a year in costs, plus saving for his care in the event that he never can live independently.  We have given up small dreams, like owning a house anytime in the next decade, but those have been relatively easy to let go of.  We also are scared about the impact of all of this on our marriage.  And it is hard watching the gap grow between him and other children.  The worst, for me, is seeing parents at the store shush their children or peel off clingy, huggy children.  I'd give a million dollars to get hugged by my son or have him say so much as Mama, but it does no good comparing what I don't have with what other people do.

[canadatourismguy]

Thanks for the update!  I am starting the autism journey with my son, and it is really helpful to hear other experiences.  

If you go back and read my original post a year ago, I think you will see some startling similarities to your post.  I still occasionally fight with the guilt and it is a struggle. 

A few things to hopefully help:

The $30K - $70K figure is if you want to go the ABA route.  Some people swear by it while others are not so positive.  We have found in our case that ABA is not necessary - he is progressing without it.  Also on the cost side - we have found a whole set of free services offered through a wide range of organizations.  This has taken some serious research to find the programs and form filling to get into them but it is worth the time and energy.  You will find that you will become a form expert over the next year! 

The hugs will come - they just may take a sightly different form.  My son grabs my hand and shakes it as his sign of affection for me.  Remember, autism is not an input issue but rather an output one.  We have learnt to communicate many things with our son but it takes a load of patience and really paying attention to the signs.

Finally, people are amazingly sympathetic and willing to help.  Know you boundaries and be willing to ask when you need it.  I know my wife and I both shed many tears over the past year and this has actually brought us closer together.  Good will come out of the situation.

[oseph]

Again, thank you.  It is inspiring to hear your good attitude about things.  I am still finding it hard when people with "normal" children tell me to buck up and think positively, but it is really helpful when people who have been through these troubles share their experiences.  I am so happy that your son has made progress.

[tt_finally]

For those of you who did not see the original thread – http://chronicle.com/forums/index.php/topic,56599.0.html


We still have an 11 year old as well and raising her is nothing like raising him - two very different stories to tell there.

I'm glad your family is doing so well and enjoying your son despite the stress his condition brings!  I can't fully empathize, but thought for a while that my youngest had autism (he didn't; the much less life-changing condition is tiring enough, however, though I love that kid beyond all reason).  Best wishes for you all!

Hard as it will be, make sure you schedule some special one-on-one times with your older daughter.  Also, if she likes to read and hasn't come across Cynthia Lord's children's novel Rules, get her a copy. 

[neurogirl]

My heart goes out to you both! I work doing basic research on autism and related developmental disabilities, and I can relate a little (though not as a parent). I spent a lot of time working in a group-home setting as well before going to grad school. It's not easy, not in the slightest, and it's a shame that insurance companies haven't been mandated to pick up more of the tab on services. But, we do get a little closer every day to figuring out the autism puzzle. I wish you and your families all the best.

[montrealer]

This webpage provides a link to an amazing interview with an author who has autism. Check out the book and the interview. I know it might be different as every case is, and this author is in her late 20s, but it did provide some insight for me about autism 'from the inside' when I first heard the intervew years ago.

All the best

http://www.cbc.ca/tapestry/archives/2002/012702.html

[marigolds]

Thanks for the update, CTG.  I'm glad to hear that the "but I wanted to go to Rome...but where I am is awesome" parable is true for your family - he sounds like a wonderful kid, and you sound like a wonderful dad.

[mignon]

Thanks for the update.  It's so heartening when kids like yours (and mine) help us gain perspective.  As a result of my son's autism, I've also become a better teacher to my struggling students; I empathize with them more, and try to address their needs more fully.

[prytania3]

canadatourismguy,

I am glad to hear things are going well with your family, and that your son's diagnosis has brought new meaning into your life and strengthened the fabric of your family.

Pry

[marginalia]

Glad to hear your update, Canadatourismguy. Do you think it's time yet for a separate autism support thread? I also have a son on the spectrum, he is also 3.5 years old. We went the costly ABA route, and it helped tremendously, although now I feel it's time to start phasing it out.  My husband feels differently.. but he's now working 6 days a week in another city and only sees our son 1 day a week...
As for my academic accomplishments... eeeh... I just spent 5 weeks with my son as our ABA program is university-based and went on a break. On one hand, my son made tremendous progress in all areas (speech, motor development, communication) due to the intensive work I did with him and intensive occupational therapy sessions I took him to. On the other hand, the semester starts on Thursday and I still do not have a syllabus for one course. I'm feeling hopeful for my son, yet completely exhausted and at times truly desperate...

[bread_pirate_naan]

Thank you for the update.  I have been wondering of late.  Reading your post brings back everyone of the positive, openhearted feelings that were the greatest gift I received from my time within this community. I agree, it takes a ton of energy, but it looks great on you.  Best to all of you.

[canadatourismguy]

I totally appreciate the support from the fora.  In the last year,  between my son and his Autism diagnosis, my daughter and her immigration issues (which got cleared up just last night - she is allowed to stay in the USA) and our builder going bankrupt - 2009 was one heck of a year!

I have learnt so much from the struggle...and with hard work, a positive attitude and the love & support of great people around me there seems to be light at the end of the tunnel now (and for once it doesn't seem to be a on coming train)! 

As much as we heard 'good-bye cruel fora' on here - there is a lot of people who are great and provide excellent support.  I thank each and everyone of you for that. 

[mystictechgal]

Thanks for the update, CTG.  I'm so glad to hear that your son is doing well and making progress, and that's great news about your daughter.  Looks like 2010 may be shaping up to be a good year for you.  May it ever be so.

[ardea]

My little chick was diagnosed with probable autism at about the same age as little Oseph. Like tt_finally's little one, it turned out that Chicklet has something else that is not easily distinguished from autism in little kids. By 3.5, we knew it was something else. The treatment is essentially the same and includes hours and hours of therapy, which we got as a mishmash of birth-to-three, school system therapists, private therapists, and a charity program run by the local hospital. The high number of therapists involved has been useful since it helped us piece together the correct diagnosis and find new options.

I remember intense depression whenever I would see my little one with others between 1 and 3.5 yrs old. It somehow got better, perhaps because kids develop more personality as they get older and you see them as people with strengths and weaknesses and not as a diagnosis. 

Chicklet made barely a peep until nearly 5 years old. We survived on signing, which works well for kids with many different neurological issues. I was skeptical when we started using it, but it was one of the best choices we made for therapy.

An autism and related disorders thread sounds like a great idea.