Sunday, April 26, 2009

#7 How Did You Cope?

How did you cope with the diagnosis in the early days? Was it easy for you to accept or did you enter a state of denial? What did you do (if anything) to take care of yourself during that time?

For those of you who don't have a diagnosis yet but pretty much know your child is on the spectrum, how do you cope with being in limbo? What positive things help you? What definitely does not help?

I was surprised how readily I accepted the diagnosis--once I knew what PDD-NOS was. We knew something was different about Jack anyway, but all I knew about autism came from the movie Rain Man and a few news shows on savants. It took some research and reading to get to a general level of understanding, and that process didn't take very long at all. I did very little crying, I think because I'm generally an optimist and felt like it would all turn out well in the end.

What took longer was orienting myself to all the details...figuring out how I felt about various therapies, figuring out what therapies we were and were not willing to try, and trying to get a feel for Jack's particular progress. All that took time, attention, and the helpful advice of a good developmental pediatrician. I also had some wonderful friends who listened and supported me. One, a special education coordinator in a neighboring school district, was particularly helpful when it came to navigating the school's red tape and understanding the educational implications of autism for Jack's future.

As for taking care of myself, I made sure I did my hobby (papercrafting) at least several times a week. We had a good babysitter, and I made use of her during the day when my husband was at work or out of town on business. Those breaks kept me sane and prevented me from losing myself completely in this new world of the autism community. Whenever I felt myself getting obsessed with autism, I would go on a news black-out...quit reading all the books, quit surfing websites, quit talking so much about it. After a while, I'd jump back in feeling eager to start reading again.


maiahs_momma said...

As for a family who know's their child is on the spectrum somewhere, but just can't seem to get the help we need. I would have to say it is extremely hard to be in limbo, it is hard to get away from it totally because it is with you 24/7. We take things one day at a time, we have lots of people praying for us, friends/family support is how we cope.
A way that I cope as a full time stay at home mom of 3, is I am into card making and other crafty things. I also like to read a lot of books on the subject of Autism/Sensory Integration, so that I can understand better what is going on with my son. Whether he actually has it or not, the techniques that are used for Autistic children work with our son.
As for what does NOT work or help, would have to be the doctor's and the health care system telling you things like:
~"It is all in your head"
~"He is just playing you"
~"You are so stressed and full of anxiety, no it isn't the fact the health care system and doctor's have failed you. You are just stressed and full of anxiety!"


Megan said...

Hello I am a mother of two wonderful boys Liam 4yrs and Angus 2yrs. Liam was diagnos on the sprectrum when he was 2 1/2 years old. We were taking him to the local peds at Otago Hospital because we thought he had a hearing problem, but with in 5 mins we knew which way the questions were heading Autism. We did live in denial for th first few months which we regreat deeply. We were in denial because his traits were so much like my husband family, but all the traits that this one wonderful little boy were spread out though a whole family. The reason that we regreat this is now we cant get my husband family to accept his condition ( josh I hate that word).
In Dunedin New Zealand the system is brillant they take children as young or even younger then when Liam was diagnos and start therapy even though they dont get the full diagnous till they are about 7yrs. They totally belive taht the earlier they are helped the better they become and it is working. Liam was at 2 1/2 yrs a child who had words when he was 1 but had complettly lost by 18mths couldnt even say mum, a child who stoped drawing, would sit there for hours doing puzzles and dont get me started on his trains.
But now you would not belive he is the same child talks so much we have to ask him to be quiet, has more intests beside trains loves his playmobil, attends pre-school and social to other children they ask him to play with them. You would not pick him as been ASD if you didnt know there is still areas that we will always have to work on but what child dosnt have some issues.
I must say what keeps me semi sane is cards I got into them about a yr ago and have loved it ever since. It is something that if I have 10 mins I can start even finish if simple. Just long enough to calm down get my mind back to normal.
The kids like to do it as well they have there own stuff and will sit at the table making cards for grandparents. It is also therpy for Liam he gets messy and sticky things on his hands, using punchs work his fingers which are lacking strength. Therpy which he dosnt even know hes getting which is great. The other thing I do to stay sane is play with the kids and hubby, anything but TRAINS ( I can only last 5 mins at a time with that game) but to rember that Angus needs normal attention and games not one lead and directed by Liam.
Well got to go Liam asking ( yipee using words )to play trains, and its only just turned 7 in the morning its going to be a long day.


susan said...

Hi. My experience was different as our boy is my grandson and not my son. But, I can tell you that the time of diagnosis was a crisis time for our family. Noah is his parents' first and only child, so they had/have no experience with normal Children, so Noah's unusual behavior didn't register with them as soon as it normally might have (if they had had another child.) Complicating the matter, he did develop normally up until about two and one half years, building with huge Legos and playing with other toys. Then, of course, all that stopped. Unfortunately for me, I was the one to first suspected something was wrong. His pediatrician's advice was to wait six months and see. Considering that early intervention is important, that was bad advice. The problem for me was to the parents what I'd found out (internet research) without sounding like a meddling troublemaker. I did the best I could, but his parents certainly didn't want to hear the "A" word, and certainly not from me. However, once Noah was FINALLY diagnosed (it took months to get an appointment with a developmental pediatrician), everyone stepped up to the plate, and things are going well now. His mother does a good job with the school, therapies, Doctors, etc., and his dad loves and plays with him, and I or his mom's sisters babysit whenever his parents need a break. Even though Noah is a happy and much loved little boy, we are still in the Autism pond floundering around, trying to stay afloat. New problems are beginning to present themselves a he gets older. He's eleven now. Susan

tinamarie said...

I went into a 4 month denial. I kept thinking maybe it was something else and not Autism. I remember really 'watching' Tony as he watched TV, lined up his cars, eat etc. I printed off the C.A.R.S. checklist and I finally admitted that the diagnosis fit him. Then I started to read books and searched the internet everyday to learn all I could. I also finally applied for the Wisconsin Katie Beckett medicaid program and started looking into services to help him more.
I was very scared in the beginning. I was worried if Tony would be able to ever talk, get potty trained (he finally potty trained at age 5)
and if he would ever have friends.
DH's mom & dad took about 2 years after diagnosis that Tony was not a 'normal' child. DH's dad had an extremely hard time admitting that a member of his family could have something like this. I still remember at Tony's 6th birthday party he finally said "yeah I can see there is something not right with Tony"
I did learn that Autism is a diagnosis that affects the entire family. But with support, help and understanding it does make it easier to handle.

Anonymous said...

We are only 7 months into our "maybe-autism" diagnostic process. The busy schedule, the pressure by helping agencies to take every class, every course, every opportunity for our son has left me utterly exhausted and my family of six looking about wilted from the mental and physical efforts. "Coping" to me is that I finally feel less overwhelmed by this new chaotic busy-ness as programming comes and goes and changes and requires something new every few weeks. "Coping" to my family looks like Mommy not getting around to cleaning toilets or doing laundry until absolutely necessary, but knowing she is there for hugs and homework and will make sure dinner gets made in a timely manner. "Coping" emotionally looks like me sitting on the couch with a hot tea when the little boys watch telly or have a nap. Getting through the day without freaking out at the spectrum-related freak-outs is "coping" to me. If there is any energy left in my day (rare), I try to scrapbook (because I love it and because it is a tangible record of the very many amazing and beautiful moments in days that don't seem to have any). Scrapbooking is quiet, papers and stickers are not spinning or flapping or yelling, and I am in total control for the moment. Ahhhhhhh.

Susan Raihala said...

Anonymous, sounds like you're "coping" rather well. Prioritizing family needs, learning what you can absorb, and giving yourself a positive outlet. Your post touched me deeply, and expresses so well the overwhelming feeling of those early days. Thank you for sharing.