Well, we have had a great weekend. Friday we went to Cracker Barrel with the whole family. We had to wait an hour for a table for nine, but the food and company was very good. Saturday we attended the 12th annual March Mario Madness Mania, or M4. We enjoyed seeing old friends (and some family). Hayden made a new friend, Luke Hile, and they played together all day rough-housing and running around. More and more people arrived as the night went on, and Hayden didn't eat (as he often doesn't at another person's house), so he started to get whiny around 8. We went back the next day and played more games, and he really enjoyed the hockey table. It was good to see everyone.
Mom watched Hayden tonight so I could attend my first TACA (Talk About Curing Autism) meeting. I got the name of two good doctors, got a huge free book, some books to borrow, and we watched a short video that made me cry. I haven't cried much since August, I've just stewed in self pity and frustration, so I needed to do that. Here's a link to it:
It's time to get serious about this diet thing. And I'll be calling that new doctor tomorrow! I'm so glad that spring break is next week, so I'll have time to read all this new information I've gotten the past week!
I went to the Autism Expo in Carmel yesterday. It was better than I thought it would be, in that most of the booths were offering information rather than trying to sell things. I picked up lots of handouts on various playgroups, doctors, services, camps, Medicaid waiver, etc. The highlight of the visit was talking with a mom who runs the TACA (Talk About Curing Autism) Indiana chapter. She gave me the boost I needed to keep going with this thing, and feel like I'm not so helpless.
I've been frustrated again this past week with the whole situation, because I felt like I was again at a standstill. It has become more and more apparent in the past few months that Hayden definitely needs services outside of the school, especially with summer coming up. I am very happy with what he gets there, but it's only 2 hours a day. And since I work, I can email/ call the nice ladies, but it's not the same as a visit to a doctor/center and getting to pick an expert's brain face to face for ideas to do at home. Plus, lately some advice from friends and family has been contradictory, and I've felt uninformed enough to sort it all out out my own. Milk? Soy? Blood Test? No? Yes? Doctor? Center? Services? Money? What's my name, again? I don't have time to read every diet and autism book and web site out there.
Friday I did call his OT from school, though, and she gave me some ideas for things to do at home. She also told me about 3 objects he uses at school to calm down, so I went right out to Walgreens after work and bought them. He had a big smile on his face when I showed him the mini-back massager, I think he recognized it from school.
The biggest frustration, though, has been the waiting list to get a doctor, and get him the other services he needs. Let me give the background story on my journey thus far, to get Hayden help.
Last year (early 2009) I was beginning to realize that Hayden was autistic. I had known since about 18 months that he was behind, and that there was something there that needed attention, but the "A" word wasn't really a part of my thoughts. (As a teacher I had mostly dealt with kids who were severely autistic, and this was not comparable to Hayden's situation.) I expressed concerns to my family doctor on two or three different occasions, but was not referred to First Steps, and did not learn about First Steps until he was over 3 and therefore too old for the program. I did research on my own, and began to realize more and more that his behaviors and developmental delays pointed at Autism. I tried to talk about it with my husband, but he shrugged me off. At one point he said, "you're still on about that?" I can still remember where I was when he said that to me, and how it hurt my feelings. I felt like the two people who should be listening, my child's doctor and my husband, were shrugging me off; that no one was listening to what I had to say.
I talked to the special needs teacher at the school where I worked, who knew a lot about Autism. She pointed me in the right direction for checklists, and agreed that my concerns about Hayden's behaviors were valid. She suggested I begin the process of having Hayden evaluated through the school. I wish now, looking back, that I had also started the process of a medical diagnosis as well. I did not know how long it would all take, and that they were two separate things, and each had its own importance. I figured if one or the other evaluated him and got him services, we'd be good to go.
It was around this time that I also spoke with Emily's mother Jane. She encouraged me that a mother's instinct is very important, and that if I had genuine concerns I should pursue them. No one spends more time with Hayden than me, she reminded me. If I thought something was off, I should do something about it. It was the push I needed. I'm sure my own mom had told me the same thing, she's been so supportive. But it was different coming from a mom I barely knew, because I knew she would be saying her true feelings, and not just being my mom and giving me encouragement. : )
In March I began calling the school for an evaluation. I left messages, emails. I called every person listed on their website that even seemed remotely related to special needs. No one acknowledged in any way that I had called. I called/emailed from March to May.
Through the Internet I found out about First Steps, and so in June I called there to find out if they could evaluate Hayden. I was transfered or given a new phone number about 5 times, but finally got a hold of a really nice woman who explained my rights to me. She said I needed to physically go in to the school and request the paperwork, and that they couldn't turn me down. She said that by law they had to acknowledge receipt of our paperwork within 10 days, and make him an eval appointment within 60 days. Jason went in personally to the office (since they are only open during school hours, we couldn't go in until June.) He was told that the person in charge of the paperwork only works during the school year, and that the secretary didn't know where the paperwork is. But, she comes in sometimes in the summer, and you can leave a message. ha! Sure, I'll leave my name and number. A month later I went in personally to ask again, and again in August.
In August we finally got the paperwork the first week of school (by going in personally). I filled it out (probably 20 pages long) and gave it back to them. There was no response for over 2 weeks, so I called and of course got voice mail. I left a very polite message stating that I knew that by law I should have been notified within 10 days that they had received our papers. She called back within an hour and said that Hayden would be evaluated soon.
I would like to put in a disclaimer here, that I have heard that this person is overworked. I don't really know her or her job, so maybe she's great at her job and just has too many responsibilities. All I'm saying is that I wish my calls/emails had been returned sooner, and that I shouldn't have had to pull the "I know my rights" card.
Hayden was evaluated by the school in November, and then we had his explanation of services meeting a few weeks later. Mom came with me and asked lots of good questions. But despite my worries that they might blow us off, the OT, SLP, and developmental teacher all agreed with my concerns, and noticed behaviors that pointed to autism. They explained that we would need a medical diagnosis for services outside of school, and that they couldn't officially say if he was autistic or not, that I would need to get a doctor's diagnosis. I wasn't too concerned, since I knew he was getting services through the school now for free. It was a relief for something to finally happen! Figuring out how to get him to the developmental preschool was another hurdle, and a long story for another day!
I debated where to send paperwork in for a medical evaluation. Local people all said "Riley". I looked on the Internet at the scads of options, I asked friends their opinions. I called Insurance to find out who was in-network (basically no one). When I took him in for his new pediatrician in October, she listened to my concerns and had me do a short (6 pages) questionnaire which pointed to a developmental disability. So she said she would send in a referral to the Riley Child Development Center. October is the end of Soccer Season for Jason, a very stressful time in my life. Then starts the holiday season, which is hectic for everyone. I promptly forgot all about the referral. I remembered right before Christmas break and called Riley, asking what ever happened with the supposed referral-- they said they sent me a packet in October. Um, nope. So they said they would send another. "If you don't receive it by January 6th, call us back." .sigh. I got it in early January (another 20 page monstrosity), filled it out and sent it in, and they warned that the waiting list was 6 months, and the cost was $1000-$3000.
Then the Bus Incident happened (another long story for another day) and the head of special needs said that I should be sending Hayden to the Riley Sarkine Center for Autism, not the Riley Child Development Center. So I called the Sarkine Center, and asked the difference between the two. She said if we suspected Hayden was Asperger's (High Functioning Austistic), that he should go to Sarkine. So I transfered the info, dealt with more phone calls and a new form, and as of last Tuesday he's on a new 6 to 8 week waiting list to be called to even make an appointment three months later.
Then I went to the Autism Expo yesterday, and the awesome mom there confirmed my suspicions about the Center. I told her my frustrations with getting into Riley, and she said, "I'm not telling you what to do, but a lot of moms aren't too happy with them." I told her that I was worried by their website, that it mostly just talked about their research with new drugs. "Yeah, some of the stories I've heard..." She told me to sign up for a parent mentor through her organization, come to the monthly coffee talks to speak with other moms, and get started on the GFCF diet. She said to go to Riley for the diagnosis, then if I wanted I could get care elsewhere. [Later I met with someone from Easter Seals, who said if I emailed her she would give me a list of doctors who could diagnose Hayden sooner rather than later, so he could get the services he needs!!] She pointed out 2 of her 3 autistic kids-- they were relaxed, talking, mingling in the over-crowded convention room. They weren't having a meltdown from the overstimulation. She said they had always had all the typical autistic behaviors, and were now (years later) succeeding in school, with some people not even knowing they had the autism label. She said among other things, that the diet is really important.
Basically she gave me Hope, that things could work out for Hayden, and that things would be better for me. It was what I needed to hear. Now I just need a little Lavender with that Hope. Time for Mommy to take a bubble bath... The pile of information from the Autism Expo will still be there tomorrow! :)
The past two years on St. Patrick's Day, I've enjoyed giving out stickers to kids at my elementary school who didn't wear green. Some of them forget, some didn't have anything, but the majority are ELL kids who didn't get the cultural memo (most are refugees from Burma). They show up to school on what should be an average Wednesday, to find out that for some reason everyone is wearing green, pointing out the kids who aren't, and some of the mean ones are going around pinching them. So I walk around putting little green shamrocks on all the ELL kids' shirts at breakfast, and they smile, and it makes my morning!
This daylight savings thing is messing me up: I'm tired! And where's my sun on the way to work? : ) At least it has been warm enough to go outside! After school Hayden and I went to the park again today. It is sooo nice to be back at the park! We went so often this summer, and I've missed it. Hayden gets a chance to run off all his energy, and play with some new kids. I get a chance to have quiet time! Ok, I know the area is filled with screams and laughter, but it's not the same Blue's Clues episode and the same little voice saying, "hey Mommy!" for hours on end. (He often doesn't want anything in particular, he just constantly asks to make sure I'm still in the room). To me a noisy park is quiet and beautiful.
Note to self, though: change your son's shirt before taking him to the park on St. Patrick's Day. DUH! 3/4 of the kids are wearing green! Kinda hard to keep an eye on him.
I gave Hayden the choice of "Mommy's tub or Hayden's tub" tonight for his bath. If I put it to him as a choice, rather than as "time for bath," he's less likely to have a fit. He chose "Mommy's tub. Take a shower!" This is often his pick, he loves the feel of the water on him. I don't know if he's figured out that his tub has a shower, too! After the bath he wanted to play in the craft box, and found some large pom poms. He came up to me and said, "Mama, my ears. Robot." He had stuffed a black pom pom in each ear, and I guess he thought that made him a robot. This is the first time I've ever seen him try to put anything in his ears. He didn't seem to agree that it could hurt him when Daddy and I explained not put things in his ears. .sigh.
Hayden just got upset that it's bedtime and I won't play robots with him any more. (Can you tell I have to blog in chunks? A few sentences here, a few there...a few million robot adventures...) He danced around in a pout-y dance, whined about it, shut the door, and went to lay in his bed. What kind of silly kid throws a fit about going to bed by shutting the door and getting in his bed?! My little pun'kin! ;)
Showing off his haircut. He did pretty well at "Cookie Cutters" Monday. Only slight resistance to the process, and no crying or screaming. Hooray! (When I asked if he wanted to sit in the Lightning McQueen race car, he said, "no, this one!" as he pointed to the pink Barbie car! lol. And that's exactly where Mommy put him!)
Jason left with the choir for Florida tonight. They have to sleep overnight on the charter bus, then go "have fun" tomorrow after sleeping on a bus. I'm so glad I opted out on that!
Hayden and I went to the park today for the first time this year. It was so nice to be back there! It was super crowded, but Hayden still had fun. We were there for 90 minutes, until I got too cold. Once the sun went down it was kinda chilly. We stopped on the way home for some ice cream.
Tomorrow night I have to be at my school for Technology Night from 6 to 8:30. My mom is picking up Hayden from daycare. He doesn't do well being away from me or Jason, so I'm pretty nervous about how it's going to go. Sorry if he cries all night, Mom!! I'll owe you dinner!
I laid out lots of his favorite toys, videos, and cookies... Let's all hope this goes well. Keep your fingers crossed and send calming thoughts in Hayden's direction! (and his mommy and grandma's!!)
Notice how the table is strategically placed right next to the bathroom/shower for easy clean up!
Making his hands hug and swing side to side, at Fazoli's.
Pretending to eat a carrot at the Children's Museum.
Hayden loves Gymboree!
"A CART car! Mommy, I driver!" he says. Hayden loves his race car book.
Actually participating in Gymbo class on Saturday.
Sorry these pics are not in order, I can't figure this blog/pic thing out!
This was a pretty good week. On Wednesday Grandma Rosie picked up Hayden from daycare. She travels on Wednesdays, and it will be good to have him get used to people picking him up besides Mom and Dad. I made a picture card for the Preschool and Daycare teachers to show him all day, reminding him that "Grandma Rosie will be picking you up." He was slightly upset when she got there, but she brought a toy tractor and a piece of chocolate, which warmed him up. He was really glad that Mommy was home when they got there, though. I am hoping this week goes even better. He was upset Wednesday morning, as well, because Jason had an early meeting at school, so I had to take him to daycare. "No, Daddy's car! Daddy take you!" Usually Daddy takes him and I pick him up.
On Thursday I took a half day in the afternoon to take Hayden to the pediatrician. He had a sinus infection, and the Amoxycilin has really been working. He is almost back to normal today. Since I was already off from work, and since we have a Membership, I asked if he wanted to go to the Children's Museum after the appointment. "Oh yes! The mu-SEUM!!" We would have had about 2 hours there, but I forgot it was the first Thursday of the month-- free night. This was both good and bad. It was wonderful to see more exhibits and get to spend more time there, but it started to get so crowded that even I was getting overstimulated. We stopped by the museum store on the way out, and I bought him a small spinning toy (that I'm saving for a rainy day) and a little space shuttle. Oh, and a shiny rock. The rock is like a blankie, he carries it around the house in his hand.
Saturday morning Hayden slept in an extra hour (until 7:30), we lounged around for a while and watched tv, then we went to Greenwood. First we stopped at a health food store and talked with the owner about starting Hayden on a gluten-free, casein-free diet. She was very knowledgeable; I guess she goes to conferences on the subject of nutrition and autism, among other things. She gave us the number of a doctor in Mooresville who does blood tests for food allergies, and showed us some products we should start with. I got some powder to make chocolate protein shakes (he's bordering on under-weight), some protein-almond-cheerios (Hayden loved them), chocolate soy milk, and lemon flavored fish oil. I was actually really surprised at that last one, it does taste good. I've wanted to start incorporating some GF/CF things in his diet for a while now, and I'm glad we found a health food store nearby. I'm not sure that we'll ever be able to go totally GF/CF, but I would like to do some and this will be a good start for us. If you know of any good health food websites, let me know! : )
After the health food store, we went to Gymbo class at 11:15. We have missed the past 3 weeks because of snow and sickness. I was very happy that he sat down to participate in pretend time for a few minutes! She was asking what the kids thought was in the basket that had to do with dinosaurs. He got bored after about a minute and left to run around, but it was more than he's done before to actually sit down with the group and pay attention. He does participate in parachute and bubble time at the end of class. Otherwise he mostly likes to run and climb, but it's really good for his motor skills, and learning to take turns, so either way it's great.
We went to Fazoli's for spaghetti afterward. Hayden LOVES spaghetti. Of course they were out of bibs. But, red doesn't show up too much on a brown shirt, right? : )
Last night we did a snack I read about online, dipping pretzels, marshmallows and strawberries in a bowl of melted chocolate chips. It was surpisingly easy, not as messy as I thought it would be, and Hayden really enjoyed making it. We will have to do it again soon. (Nothing to do with the fact that I love chocolate pretzels!!) After that it was Blankie Washing Day. First he screamed and ran around. Then he wanted to lay in his bed with his blankie over his head. Then we cuddled on the couch while he repeated over and over, "Mommy, I sad. Blue blankie." When the washer stopped he yelled, "It's READY!" and ran for the laundry room. Drying it was not an option, but luckily it's crochet so the spin cycle gets most of the water out. I need to learn to crochet with big holes so he can have a spare!
Today has been very relaxing, with cleaning, laundry, naps, and Jason and I catching up on LOST on Tivo during H's nap. Jason leaves for Florida with the choir on Wednesday, so he's been playing a lot with H today. Hayden and I were invited, but politely declined the 12+ hour bus ride with an autistic kid and 30 screaming teenagers. We'll just look forward to Gulf Shores in June!
When you have an autistic kid, every outing has to be planned in advance. You basically have to pack for the mission: you need a sippy cup with juice in it, a snack, diapers and wipes, two or more hotwheels, a blankie for the return trip, and extra juice if you plan on being on said trip for longer than an hour. If the trip is occurring at a meal time, you'll need to microwave a chicken patty, cut it into strips, and put it in a cup for the road. Or you can take the easy way out, and go to BK for some chicken fries. This is usually what I opt for. ; )
I have NEVER been on a trip with Hayden without these items. I think once I forgot a sippy cup, and had to resort to buying a juice box. It didn't work.
So today I needed (ok, wanted) to take the recycles to the center, because they were taking over my kitchen. I put the recycles in the car before work, collected Hayden's trip essentials, and went to work. The plan was that after work, I'd pick up Hayden, we'd go to the recycle center on the south side of Indy, pick him up some chicken fries, and go to the bookstore. Good short trip, and he likes to play with the Thomas set up at the bookstore.
When I picked up Hayden from daycare, the first thing I noticed was that he had a different outfit on from this morning. "Did he have an accident?" I asked. "He's having a rough day," they tell me. "He messed up his outfit at Waverly, though." So I open his bookbag and read the note from his Waverly teacher, which says that he spilled juice everywhere because he didn't like the snack they were serving today. He will need another spare outfit. He also hit the new student because there was too much change in his day. Lovely.
As I finish reading, Hayden is wandering the room saying, "CAR CAR CAR CAR. MOMMY. CAR. CAR. Mommy..." This means he brought a car to daycare today, and we need to locate it. His teachers locate the car, he agrees to put on his coat ("No, jacket!" he argues. Ok, it's a jacket. Whatever. Put it on please.) "ZIP!" Yes, I'll zip it, please ask nicely. As we leave I notice he needs a kleenex. His sniffles are still going strong.
So, at this point, a smart mom would head straight home. Nope, not Sheila Damron, she had an idea in her head, and has a car full of recyclables.
The trip to the recycle center was mildly interesting, since there was a detour and I couldn't take the normal road. I guessed, and essentially was lost for about three minutes. I knew I needed to head east, but other than that I didn't really know where I was. So now I had cranky kid, car of recyclables, and was mildly lost in a not-great area of Indy. Got a little bit scared.
There it is! Shoo! K, dropped of the recycles. Hayden asks for Gymboree. "No, how about the book store?" Silence. Well, better than screaming. We get near the bookstore, I look in the rearview, and guess who's asleep. He doesn't fall asleep in the car that often, unless he's really tired. Well, let's let him sleep a half hour-- I went through the McD's drivethrough, parked in the bookstore parking lot, and ate dinner while listening to NPR. Woke Hayden, ask if he still wants to go see Thomas, he does, we go in. (No, I couldn't have cheated and driven all the way home with him asleep, after promising to visit Thomas. That result would be VERY bad when he remembered what I'd promised!)
We walk in, see the kid section, and head over. We near the Thomas area. We arrive in the Thomas area, and suddenly I feel the same fear as I did when we were momentarily 'lost' in Indy: There is no Thomas. No train table. Just plain wooden floor space. Oh No! I had promised the cranky autistic kid that if he went on this long, pointless trip with me, he could play with the Thomas table. Nevermind that he has one at home just like it. For some reason the B&N one is better. Except that it's not there.
I ask a worker, and she says, "well, they're probably just building a new one in the back. We go through them pretty quickly. They get a lot of use."
No, see, the most raggedy, old, sorry Thomas table you can dream up would be better than NO Thomas table! What genius without kids thought up this plan?
I tried distraction with Chicka chicka boom boom. That worked for the duration of the book. Then he was back to asking for Thomas, and he was getting upset. Now, about a year and a half ago I had to physically remove Hayden from B&N because I wouldn't let him steal the Bertie the Bus toy on the train table. He loves buses, and they didn't have one for sale. So his option was to just steal the floor model. I had to carry him out, kicking and screaming. I had to carry him sideways, with our two winter coats in my hands, because he was writhing so much that I was getting injured. I'm sure everyone stared, but I just looked straight ahead and got out. It took me a good 5 minutes (which is a long time!) to get out, because he kept writhing and kicking out of my arms, and I'd have to set him down and pick him up again. Yes, I quietly asked him to behave. Yes, I tried to reason with him. These things didn't work. They never do once the meltdowns start. What works is quiet time in his bed, with his blankie, and no one around.
So today, the thought of that glorious experience went through my head, as Hayden got more and more anxious. I didn't feel I had the energy for that experience today. So, I did something bad.
I showed him a James train off the shelf, and asked if he wanted to buy it.
Hayden, James, and Chicka Chicka Boom Boom made it home without incident.
I hope all my parenting 'good days' make up for this one!! I'll try harder tomorrow! : )