So, this whole diagnosis thing is really overwhelming. Luckily, I've been spending a lot of time with the hubby and my son. I feel bad in so many ways that we didn't get him evaluated sooner. We missed out on a program called "babies can't wait". Three is the cut off. My son is three. Now what? Trying to get answers. I know we can get therapists to come to his preschool, but not sure how it all works yet. I wonder if three year olds get an IEP (individualized education program)? So much to think about.
I don't think anything could have prepared me for this, though.
I had noticed as early has 18 months that my son was not socializing as he should have. We had a play date and he barely noticed my friend's son. Fast forward to his second birthday, and the little boy my other friends brought over kept saying HI to my son and trying to play with him, but my son would barely acknowledge him.
The hubby and I thought it was our faults. We are pretty introverted, believe it or not. I'm a tested myers-briggs ISTJ. Socializing takes a lot of energy out of me and though I am blessed with my wonderful friends from all of the places I have lived, I like that with the internet I can let them know I love them even though I don't get to see them much. This is mostly geographical in nature, but also, when we had our son back in Ohio, we did not have many visitors, and all of the socializing we did...we had to bring our son along. Not always cool with our friends, but we had no family and had a hell of a time trying to find a good babysitter.
Our son was not in daycare til we moved to Atlanta. In Cleveland, and sometimes in Atlanta, I worked full time 40 hours + a week, night shift (then eventually 36 when my boss FINALLY let me go to three 12 hour shifts on night shift. I'm an RN, it's exhausting work. I felt horrible because when I got home, I was so tired I could barely talk. I had to stay up for over 36 hours sometimes. It went like this...
1. stay up all day with baby
2. go to work for 12 hours and the hubby would watch the baby at night
3. come home and stay up all day (nap when baby napped)
4. go back to work that night for 12 hours...
you get the idea.
My schedule was erratic, too. I never had a routine, which meant the baby didn't, either.
I breast fed him, I wore him in a carrier, I had him sleep next to me or in the bassinet next to me, etc.
A punk rock granola mommy, if you will. He had Ramones lullabies, and went to acoustic punk band rehearsals with me.
But the thing is, I felt sure that it was the tired mom who didn't talk much to her baby that may have started this whole regression thing, and that it got worse when I lost my new job in Atlanta when he was 22 months old due to ILLNESS I got from having put him in daycare. And I couldn't find anything quickly enough to keep the bills paid. I took a travel job and was only able to see my husband and son every few weeks. My heart was so broken. Luckily, where I was...Baltimore...was an easy flight to ATL and I had friends and family up there and a great place to stay.
I noticed some regression when my husband took my son out of the expensive but amazing daycare we had him in. Thought this was related to stress from all of the changes. Maybe, but again, the psychologist informed me that what happened to my son was going to happen, stability or not.
I suppose I feel extremely lucky that I established the warm bond we have early on. This has allowed my son to really trust me and know that a hug and kiss is always readily available from mommy.
Autism is a spectrum disorder, and my son is most definitely a DSM criteria matching one, but mostly because he has trouble with communication and socialization. He is so very smart. We encourage any activity he shows interest in that is productive and safe and fun. Right now, he LOVES his map of the USA puzzle. He puts it together without any help. He knows the names of several states. I'm so impressed. I love that he loves it.
He loves counting, the alphabet, drawing, dancing and singing, and building trains and castles and cars out of shape blocks. Oh, and he LOVES his collection of balls. He has soccer, basketballs, etc. He loves music and drumming very much. The other day I played bass and sang and he drummed and sang "monkey gone to heaven" by the pixies. (he just loves them!) the hubby videoed it. Free music therapy.
He's getting better at telling us if he wants something to drink or eat, but he still won't tell us if his diaper is wet or messy. Toilet training is going to take longer than we thought it was. And let me tell ya...it's been slow. He's not afraid of the toilet anymore, though!
However, we got a packet from Autism Speaks (they are so nice, thank goodness they exist) and I think we are on track for the most part. The packet is called the first 100 days and it sorta walks you through what you need to do.
Our son's dx psychologist states that he needs 25 hours of intensive therapy a week. We're still waiting for the detailed report. The evaluation will be typed and really detailed. Like, longer than a term paper. They take 4-6 weeks to get, usually, because it will outline recommendations for therapy and list his strengths and areas of needed improvement. Til then, we just gotta do what we can to keep stability and normalcy for our sweet and loving son. We are reading as much as we can about how we can start the therapies at home, like ABA, and floor time. Any suggestions from parents with autistic toddlers are welcome.
Saturday, June 30, 2012
Tuesday, June 19, 2012
Navigating the Hurdles
So, apparently, our insurer isn't too autism friendly and I wonder if there are any at all that are? Probably not. You wouldn't believe the deductible and the fees for out-of-network.
What we plan on doing is two things: going through the specialist center AND also getting the public school district evaluation once the come back from summer break. That way, when he does Pre-K next year, we can have state funded pre-k OR i can keep my son in the program he is in now, and just have adjunct therapy. We told his school and they were really helpful and kind. They told us he can stay. They love him, and he's never been a problem. He does have a bit of anxiety about certain things, and is just NOT ready for potty training. We also contacted his teacher from last year at the prestigious school we had him at. She was the one that pulled me aside, shortly before our son was two, and told me she suspected Autism. I listened to her, but I thought...well, maybe, but let me give him more time to grow and see if anything changes.
Well, he is still wonderful and sweet and lovey and super smart, but he just isn't socially there. He just can't converse. I get really excited when he says things to the hubby like, "Where's Mommy? Mommy's upstairs." (which I was). I know conversation isn't far away. I'm looking forward to speech therapy. He already quotes books, movies, and TV perfectly and has a great singing voice. We just want to know how he feels and if he is in pain, or tired, or wet, etc.
He does say "I love you"
and in the right context.
We also get kisses and hugs.
Do I feel like I won the toddler lottery? Yes, yes I do. There is nothing better in the world than to hug my son and be hugged back.
---
Tonight, I made our son a GF/CF dinner (gluten free/casein free). He had Spinach Artichoke Hummus, home made chicken nuggets (he ignored them...wah!), Van's waffle, and a Banana, as well as a few bites of a veggie burger. To wash it down, he had his favorite: Odwalla Green Superfood smoothie. (His favorite...well that, and Naked Green Machine). I love the smoothies, 'cause I can sneak his vitamin into it.
The hubby came home later from work and was hungry so we ordered a 9 inch Gluten Free, Daiya cheese pizza with bacon, black olives, and green peppers with a tomato sauce. OMG! So good. I already feel a difference when I stray from the GF/CF diet. we're doing a little bit of paleo recipe stuff, too. Uncle Maddio's Pizza rules. We love the great variety of food that the Atlanta metro area offers.
By the way, we knew our son was casein intolerant, and that's why he drinks soy milk. I knew that he always does better Gluten Free, too. We are unlocking parts of his mind with the mind body connection thingy. Less tummy aches means better night sleeping!
Ok, more later...Gotta get some zzzzzzz. Gotta work and make phone calls tomorrow.`
What we plan on doing is two things: going through the specialist center AND also getting the public school district evaluation once the come back from summer break. That way, when he does Pre-K next year, we can have state funded pre-k OR i can keep my son in the program he is in now, and just have adjunct therapy. We told his school and they were really helpful and kind. They told us he can stay. They love him, and he's never been a problem. He does have a bit of anxiety about certain things, and is just NOT ready for potty training. We also contacted his teacher from last year at the prestigious school we had him at. She was the one that pulled me aside, shortly before our son was two, and told me she suspected Autism. I listened to her, but I thought...well, maybe, but let me give him more time to grow and see if anything changes.
Well, he is still wonderful and sweet and lovey and super smart, but he just isn't socially there. He just can't converse. I get really excited when he says things to the hubby like, "Where's Mommy? Mommy's upstairs." (which I was). I know conversation isn't far away. I'm looking forward to speech therapy. He already quotes books, movies, and TV perfectly and has a great singing voice. We just want to know how he feels and if he is in pain, or tired, or wet, etc.
He does say "I love you"
and in the right context.
We also get kisses and hugs.
Do I feel like I won the toddler lottery? Yes, yes I do. There is nothing better in the world than to hug my son and be hugged back.
---
Tonight, I made our son a GF/CF dinner (gluten free/casein free). He had Spinach Artichoke Hummus, home made chicken nuggets (he ignored them...wah!), Van's waffle, and a Banana, as well as a few bites of a veggie burger. To wash it down, he had his favorite: Odwalla Green Superfood smoothie. (His favorite...well that, and Naked Green Machine). I love the smoothies, 'cause I can sneak his vitamin into it.
The hubby came home later from work and was hungry so we ordered a 9 inch Gluten Free, Daiya cheese pizza with bacon, black olives, and green peppers with a tomato sauce. OMG! So good. I already feel a difference when I stray from the GF/CF diet. we're doing a little bit of paleo recipe stuff, too. Uncle Maddio's Pizza rules. We love the great variety of food that the Atlanta metro area offers.
By the way, we knew our son was casein intolerant, and that's why he drinks soy milk. I knew that he always does better Gluten Free, too. We are unlocking parts of his mind with the mind body connection thingy. Less tummy aches means better night sleeping!
Ok, more later...Gotta get some zzzzzzz. Gotta work and make phone calls tomorrow.`
Sunday, June 17, 2012
Father's Day
We enjoyed father's day this year.
mellow day...letting everything sink in, and just loving every minute we spend with our adorable son.
mellow day...letting everything sink in, and just loving every minute we spend with our adorable son.
Saturday, June 16, 2012
Photos as therapy
pretty cool story.
Yoga for Autistic Kids
My son already loves yoga. Gonna look into it.
http://www.mindbodygreen.com/0-3817/7-Benefits-of-Yoga-for-Kids-with-Autism.html
http://www.mindbodygreen.com/0-3817/7-Benefits-of-Yoga-for-Kids-with-Autism.html
Entering the spectrum
Yesterday, the hubby and I went to a free evaluation that our pediatrician had given us access to. We were told it was a screening led by GSU researchers to help diagnose and treat developmental disabilities early, so that the children will have a chance to live the most normal life possible...(but what IS normal, anyway?)
Well, our son has socially awkward parents, and I had an idea things weren't right. This child of mine is soooooo smart! He could spell WORDS with his alphabet puzzle pieces before he was three. Before he was two, he would draw alphabet letters all over the house. He can memorize stories, songs, and even songs in other languages. He counts and organizes, etc.
He is pretty affectionate, asking for hugs and kisses. But his eye contact is rare, and he doesn't always respond when you call his name. He can't tell us his name. He can't tell us if he is hungry, or in pain, or if he is cold. In fact, he is clumsy and gets injured a lot. Scrapes, bruises, normal little boy rough and tumble stuff. It doesn't faze him at all. He doesn't really interact with the other kids at school. However, his teachers love him, and they tell me he is very sweet and is the smartest toddler in all of the toddler classes. We haven't had too many issues with him, other than the fact that he doesn't tell his teachers when his diaper or pull-up is wet, because he doesn't know how (even though we have tried teaching him this repeatedly!!!)
When I was pregnant with him, I took prenatals (with folate) every day, went to every ob visit, slept well, ate healthy, and only drank 1/2 of one beer at a cookout at the end of my pregnancy to help relax my pelvic floor (it didn't work!). I did not avoid caffeine, mostly because I was a rotating shift nurse most of that time and I needed it desperately! However, the researchers (Ph.D and all) told me none of that would have changed this outcome. I have very strong genetics and the hubby may, too. My mom family's got some stuff, as well as two brothers. One brother is a very high functioning "aspie." BTW, he is 22 and is awesome. Hold down jobs and is a very good human.
Well, my son is autistic.
There.
I said it.
The hubby and I are still in shock. I have only told my best friend. He told his mom. I'm telling this blog (NOT facebook, or anything). I will be writing more later. I will say this: I am not complaining. I'm just a bit in shock. This is life-changing and we need to get our stuff together and put aside our differences(more on that later), and get started with his therapies n stuff.
Gonna chronicle our journey and tell our story. I know we are not alone.
I am so blessed with this wonderful gentle being. I'm going to make sure he has all the love and help that he needs on this journey.
Well, our son has socially awkward parents, and I had an idea things weren't right. This child of mine is soooooo smart! He could spell WORDS with his alphabet puzzle pieces before he was three. Before he was two, he would draw alphabet letters all over the house. He can memorize stories, songs, and even songs in other languages. He counts and organizes, etc.
He is pretty affectionate, asking for hugs and kisses. But his eye contact is rare, and he doesn't always respond when you call his name. He can't tell us his name. He can't tell us if he is hungry, or in pain, or if he is cold. In fact, he is clumsy and gets injured a lot. Scrapes, bruises, normal little boy rough and tumble stuff. It doesn't faze him at all. He doesn't really interact with the other kids at school. However, his teachers love him, and they tell me he is very sweet and is the smartest toddler in all of the toddler classes. We haven't had too many issues with him, other than the fact that he doesn't tell his teachers when his diaper or pull-up is wet, because he doesn't know how (even though we have tried teaching him this repeatedly!!!)
When I was pregnant with him, I took prenatals (with folate) every day, went to every ob visit, slept well, ate healthy, and only drank 1/2 of one beer at a cookout at the end of my pregnancy to help relax my pelvic floor (it didn't work!). I did not avoid caffeine, mostly because I was a rotating shift nurse most of that time and I needed it desperately! However, the researchers (Ph.D and all) told me none of that would have changed this outcome. I have very strong genetics and the hubby may, too. My mom family's got some stuff, as well as two brothers. One brother is a very high functioning "aspie." BTW, he is 22 and is awesome. Hold down jobs and is a very good human.
Well, my son is autistic.
There.
I said it.
The hubby and I are still in shock. I have only told my best friend. He told his mom. I'm telling this blog (NOT facebook, or anything). I will be writing more later. I will say this: I am not complaining. I'm just a bit in shock. This is life-changing and we need to get our stuff together and put aside our differences(more on that later), and get started with his therapies n stuff.
Gonna chronicle our journey and tell our story. I know we are not alone.
I am so blessed with this wonderful gentle being. I'm going to make sure he has all the love and help that he needs on this journey.
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