Tuesday, December 30, 2008

Questions for You!

Hello everyone!

Last year and again this past year I shared some very personal details about my son and the day to day challenges he faces. We are now just months away from testing him for autism. We believe he has high functioning Aspergers. This has been a long journey because he is such a bright little boy and looking at him and his capabilities he seems normal (from what people see on the outside) until you get him to school or in social settings with other children. Nothing is official yet (obviously since it has taken us this long to get him in to see the right specialists) but I want to know--for those of you who have gone through this before--what to expect. Also, how did you react to the news? I love my little boy unconditionally. I am there for him 100%. I advocate on his behalf as much as possible but I just wanted to hear from you. Knowing I am not alone in this journey is comforting. I would be especially grateful to hear any advice on what to take to those meetings, what information I need to share etc. One thing we are in the process of doing is going back through our family videos to "see" changes and make notes. Looking back on his 6 years is a huge undertaking.

On that note, I would also LOVE to hear from home school families. As you know I currently work with Christian homeschoolers and I am certain I will be homeschooling my son next year. So what I'd like to know is what is your favourite curriculum? What are your favourite homeschooling sites? Any advice?

Thanks for listening to my chatter today. My holiday guests have come and gone. My husband returned to work today and so now I have some time to catch up with the kiddos and my crafting again. We were out of town yesterday and I picked up some craft organization tools and am heading down to my room to ORGANIZE before the new year. I said it last time but I promise this time once I am done I will share some photos of my craft space. It will be undergoing a major overhaul since we are moving this year and I need to prepare my items once and for all for this move. Since DH's job requires us to move they come in and do the packing and well...I must say...the packers probably want to run away when they see craft rooms like mine (all the bits and pieces!).

I will be back tonight with a scrapbook page and will be working towards getting some photos of my space for you as well in the next few days. I hope to have some cards up shortly too. I know some of you are not scrapbookers and are anxious to see some cards *grins*.

Alli

19 comments:

Carolyn Mustopa said...

Alli, first of all, you are a phenomenal mother! You are informed and intelligent, and you will fight to the death for what is right for your son. It will all work out.

Let me tell you my story. My son is now 32 years old. He was reading from the NY Times when he was in kindergarten, pretty much self-taught. A gifted artist who drew his own comic books starting in first grade. But he had some social problems in school, some odd speaking mannerisms, and never tested as high as his apparent intelligence. In second grade, after much testing, he was diagnosed as Emotionally Handicapped -- a term that can devastate a parent!

I believe that he actually had Asperger's Syndrome, but there was no name for it at that time. In New York, the state is required to provide a suitable education for every child at no charge. I found a private school for emotionally handicapped students with a good vibe (made me literally cry with happiness when I finished my initial visit) and he went there for 3 years. He mainstreamed back into public school for 6th grade, and went on to be accepted into a prestigious arts high school (think Fame). Halfway through his bachelor's degree, he switched from being an Art major to a Math major.

Fast-forward several years: last spring he received his PhD in Mathematics. He is engaged to a wonderful young woman who happens to be a graphic artist. They are getting married this April.

It will all work out -- you have all the love and faith that he needs!

Cindy said...

My son is 7 and has Selective Mutism. He is making great gains and is likely {according to his treating psychologist that he saw last year} symptom-free by the time he starts second grade. I think the most important factor when dealing with these unusual circumstances is being a strong advocate for the kid, which you are and will continue to be.
I also want to comment on comment #1: what a wonderful story that is! See - it usually does all work out and it is great to read about how well your son did. Good for him. And for you!

Anonymous said...

Hi Alli,
I'm also an educator and stay at home mom. I've worked with many kids with extra challenges in their lives. One website I have a great interest in is
http://thepioneerwoman.com
She home schools her 4 kids. Follow the links to her homeschooling page; she's got good resources and posts other homeschoolers advice and blog posts. (and I love the rest of her site as well!)
Keep smiling!
Betty-Ann (from Ontario)

Claire Brennan said...

i don't have the experience to tell you how it will all work out Alli - but I know nothing can beat you if you just love your kids as you clearly do. I have friends with autstic children and it seems to me that the biggest battle is getting the right diagnosis and the correct help - but on the personal front, I don't think your son has anything to worry about with you in his corner - you strike me as the type of mom who could get him through anything. Just make sure there's a shoulder available for you to lean on!! Best wishes and hugs.

Anonymous said...

Alli, Like the commentor above, I have coworkers who have autistic children. You sound like the strong and encouraging mother your son needs. The other most important part is getting the right help and keeping up with the programs available for the autistic child. It sounds like you are on the right track with the upcoming specialist appointment. I'm sure that office will be able to point you to other programs you can access for him, too. If bloggers could hug, you'd be receiving many, I'm sure! ((Alli)). Gail

Rebecca said...

Alli,
A friend of mine who reads your blog asked me if I could help. She's listened to me vent countless times about my frustrations with the world of Autism. I have a five year with high functioning Autism/Asperger's. He sounds very similar to your son. We were "lucky" enough to begin receiving services when he was 2 1/2, so he's had a lot of early intervention services since then. I'd be happy to chat with you. You can e-mail me at bec1974@yahoo.com .
Rebecca

Susie said...

Alli,
I was touched by your post today. Not long ago, my husband and I were going through the same process with our youngest son, Andrew. He developed normally through his first year of life, but then began to regress. He became quiet and uninterested in playing with his brother.
I have a degree in Elementary Ed/Special Ed, so I knew that something was terribly wrong.
We were fortunate to find a wonderful child psychologist who specialized in children with communicative disorders. He was diagnosed with Pervasive Developmental Disorder at age three. He was re-evaluated at age 7, and was diagnosed with Asperger's Syndrome.
Andrew is now a freshman in high school and is doing very well. He is an excellent reader, has a great sense of humor, and has made great strides in his social skills. I would love to pass on more information if it would be helpful to you and your family. You are doing the right thing for your son...being an advocate for your son is one of the most service you can provide for him.
You sound like an excellent mother and I am sure you are doing everything you can for your son.
Sincerely,
Susie Burke
susieb88@comcast.net

Carrie said...

Alli~
I would hug you too, so here is a big cyber (((((hug)))! My oldest ds doesn't have autism but he was developmently delayed in speech and fine motor skills. He went to a special preschool for 2 years and when he started K he was well above the other children. He started to fall behind in 3rd grade and after year of campiagning to my husband we started to homeschool our 2 boys 10 and 8. We are in our 2nd year of homeschooling and we are using bob jones. I really like it and we are always looking for other things to supplement. We use biblestudyguide for our bible. I really like that because it's a cartoon comic book format. I wish we would have started out with bob jones last year. We tried abeka and I thought it was a little to hard and boring.My oldest is very bright but it just takes him longer to catch onto things. He kept getting behind and to me it was like I could see things just piling on him. He could keep up and they would move on so he would just give up. Hey I would've too. I think you are doing the right thing with homeschooling. We love it and will not go back to public. The one thing I like about bob jones is that they can go to highschool through and affilate and it's an acredited school so that will be important when they get college age.
Feel free to ask me any questions.
saverofmemories@sbcglobal.net

Sarah A said...

My prayers are with you. I have a 4 year old daughter with high functioning autism. To the outside observer, she would appear to have Asberger's but cannot have the diagnosis due to the speech delay and language loss she originally exhibited. Because I, too, knew what we were looking for during the period of diagnosis, I found the diagnosis actually to be a relief. I knew it wasn't me or something I had done wrong. And it put me on the path to recovery we've been on since that time. I highly recommend looking into a biomedical approach of treatment and dietary intervention. It has been a miracle for us!

We, too, are considering homeschooling and I look forward to the other comments on this one.

Janelle said...

Alli, I echo the other comments about being an advocate for your child -- and I think homeschooling sounds like a great option. I only homeschooled my son for one year of high school (oh, how I wish I had heard of homeschooling when my two children were young and we were struggling with the public schools!), but as far as curriculums go -- in my research I was really impressed with Sonlight. It's heavy on the reading, but was very different from classroom/textbook learning and I loved that. They have a great catalog and a good website, too. My prayers are with you in your decision-making.

Rosemary said...

Hi Alli!

I just want to say that you are doing the right things for your son and because of it he will thrive and succeed! I have been on a similarly long odessy with my oldest (now 10). When he was about 2 1/2 I noticed problems with him speaking, especially with others. He was tested through our school district and placed in a special education preschool. He did okay until 1st grade and then other problems started to emerge. He was tested through the school district, again, but nothing was done with the information at that time. Finally in 3rd grade I was able to have him seen by the behavioral specialist at our local children's hospital (Mary Bridge in Tacoma, WA). He was initially diagnosed with Aspergers even though that diagnosis wasn't completely accurate, but was the closest fit. Because the testing done in 1st grade showed he had a non-verbal IQ of 121 and a verbal IQ of 70 (that is extremely unusual) he was seem almost immediately by the pediatric neuropsychologist at Mary Bridge. After extensive testing, he was rediagnosed with learning disabilities and a speech/language disability. Today he is doing well in school and has a classroom teacher and special ed. teachers who are proactive rather than reactive. As you are learning, you are your son's biggest advocate and the best expert on him. I guess my advice to you would be that as long as you have him in any kind of school system, make sure that he is placed with teachers who are proactive and who understand what your son's needs are. Best wishes to you and your family. Your little guy is fortunate to have a mom such as you! As the first person said, everything will work out!

Kimberly said...

Alli, I am going to start with the fact that I am praying for you even as I write this. I cannot imagine your fears and uncertainty. I truly believe that you have been following the right path and are making the progress your son needs.
A diagnosis is not going to change who your little boy is. It is just a label. A label that will not change his smile or how much he loves you. You have already made adaptions for him at home. Changes that have made him the happy little boy he is. And he IS bright, he just will learn differently than his peers. (And really, don't we all learn our own way? :))
You will have to be his biggest advocate and his voice for his education. Being a former elementary and special education teacher, I have watched too many situations get lost in paper work and lack of communication between the school and parents. I know that you won't let that happen. And please don't ever feel like you are being a pain-be a pain! :)
I worked with pre-school aged Autistic children one year. Each one was unique. Each one had his own place on the spectrum. And knowing your own child will help the professionals provide him the best services and learning plan.
Enough of my yammering...
Just ask for prayers anytime, seriously.
(((((HUGS))))))

Latisha said...

Your sweet son is still your baby, and that will never change. As mothers we have to be the best advocate for our children, never doubt your Mommy's intuition, only you know your child the best. I hope when you have a diagnosis it will bring you a little piece of mind, for you now know what you are dealing with. A few of my friends talk non stop about how the change in their childs diet seemed to help a lot. Other than that I don't have any advice on your journey, just know I said a little prayer for you and your family.
I do however home school my children, this is our first year and I go through k-12 ( www.k12.com ) it is tough for some, but my children really are learning a lot, amazing actually. Its self paced and is by mastery (you don't move on until you master the lesson/subject) We are independents so we pay a monthly fee, in some states you can get it free through your school district. I know you are in Canada, but I still think it might be available to you. My son is 8, and if you ever want your son to have a pen pal or to exchange Flat Stanleys, I would be more than happy to do that, or even if your son likes to get mail from other kids, my son can draw him some pictures and write a little note. Feel free to contact me via email, if you want more info on K12 or have any questions about it tishayoast@gmail.com really all kids should get that good of an education that k12 provides, I can't say enough good things about it.
big hugs to you
its all going to be okay :)

Terri said...

I am a homeschool mom. I have been homeschooling my daughter with Calvert's homeschool cirriculum since she was in pre-k she is in 5th grade now. Calvert has educational counslers to work with you if you need them. You should give them a call here is their website. http://www.calvertschool.org/calvert-school
I think homeschooling your son will be a great thing for him. If you have any other questions about Calvert or homeschooling let me know.

retiredheather said...

the most important thing for you to bring to your meetings is your love for your son. The meetings will be difficult and tiresome...loads of questions. Try to be patient with yourself and have confidence in your knowledge of your son. I have a LD son and have taught autistic and asphergers children...they are wonderful but difficult because you care for them and want to share emotions and this sometimes frightens them...such a terrible situation. I love that you invite us all to share in your love for your son.
Hugs
Heather

Julie Masse said...

I have no advice really Alli - just wanted you to know I'll continue to pray for you all!!

Amy said...

Dear Alli,

I'm going to keep this short and sweet...I know you're doing all you can for your son--keep on doing and advocating and loving him just as you are.

Secondly, I'm a speech therapist, and one of the most important thing I've learned from workshops and working with kids in with Autism and Aspergers is to keep things predictable. They need the consistency and predicability...I'm guessing you already know this, but just in case, I wanted to just give you my two cents.

I know everything is going to work out for your son and your family...you are a great woman, mother, friend, etc...and will find the best interventions, strategies and support team for your son!

Ok, so that wasn't so short and sweet...sorry!

Hugs,
Amy

Lastel said...

I am the Mom of a 14 year old son with high functioning Aspergers . Kody was diagnosed when he was in first grade . There is way too much to tell on this little comment post , so if you would like to contact me at lastelndemitri@msn.com I would be happy to answer any questions you have and to share with you some of what we deal with on a daily basis .

Amy said...

Hey Ali! While I don't have a child with Aspergers, I am a Christian homeschooling mother and have always come to your blog for crafty inspiration. I LOVE that I now have another reason to admire you! After much research and anxiety spent over trying to find the right program, I decided to pull a bit from each dependng on what seems to fit my child. I find that I save a lot of money that way as well. I also buy my books and things used from thrift stores, half.com or garage sales. I will keep you in my prayers as you embark upon this new journey and I hope that you find some good info from the many comments you have received. Take care and God Bless! -Amy