Big Changes Ahead

Well, today was Monkey’s last day with his current ST. She’s been wonderful, but is moving on to a new job and so next week, Monkey will be seeing a new ST. Today he awarded his ST with a bounty of language. He said, “moo, cow, oink, quack,” along with so many words that his ST actually wrote them on a piece of paper. Since she’s been so successful in getting our son to begin talking and this was her last day seeing him, we’ve invited her to Monkey’s birthday party, which is in a week and half. Monkey will be turning four.

After speech, it was again time for OT and today, I decided to spend most of the time outside of the room while his OT did what she does. I’ve been told that it is better for Monkey to spend a bit of time away from his parents so that he will be more prepared for preschool, which starts on Monday!!!

I’m still anxious about sending Monkey to preschool and it has been suggested that I ask for permission to sit in on his class for the first few days to help him ease into the transition. I’ve also talked to his teacher to set up a home visit before school begins. (We’ll be seeing her on Friday.) As I was talking to her, the topic of Monkey’s therapy came up because she suggested we meet on Wednesday afternoon (therapy day), so I told her that Monkey is in therapy at that time, so a different day would be better. Then she asked what kind of therapy, so I told her and then mentioned that Monkey was recently diagnosed with Autism and low and behold, she said that she would talk to the special education coordinator at the school and get Monkey set up with ST and OT at the school and get things taken care of, so no more of this “he can’t get what he needs here” nonsense that the local Board of Education gave me when I went to drop off his diagnosis papers.

So, on Friday, maybe we can get some things straightened out so that Monkey is still getting what he needs without having to miss a lot of school just to go to therapy, which is what the Board of Education suggested that I do and can be done if necessary since preschool isn’t required in our state. However, I do know that because of the American’s with Disabilities Act, Monkey will qualify for additional things like ST and OT from the school. I just have to fight for it, which I know almost defeats the purpose of the ADA. It’s really frustrating, but if that’s what it takes, it’s what I’m willing to do.

Mommy’s Long Day

This morning, I woke up with a migraine and thinking that I wish more people knew and understood the importance of sign language outside of the deaf community. Not only is it useful to people who interact on a daily basis with the deaf, but it is also a useful communication tool for some children with Autism who respond well to signs, which in many cases leads to verbal communication. That was at 7:28 a.m. right before my alarm went off this morning to tell me it was time to head off to my local Social Security office to see if Monkey qualifies for SSI. Leaving Monkey and his daddy in bed, since I knew Monkey had therapy later today, I headed off by myself only to find that arriving 30 minutes early meant waiting outside the office for fifteen minutes because the office doesn’t open it’s doors until 9 a.m. As I waited in line I told the person in front of me that if I’d known I wouldn’t be able to enter until 9 a.m, I would have slept a little longer.They, in turn, informed me that the line would be much longer once the doors opened, but the line wasn’t longer. As, I spoke to two people in front of me, they asked why I was there. “For disability?” they suggested. “Well, for my son. He has Autism,” I told them. One of them then said, “Oh, I had a cousin who used to have Autism.” I told him, “The diagnosis doesn’t go away. It’s just that with help, the symptoms can become lessened.” Then the man asked me, “So, does he talk too fast?” “No, he doesn’t talk much at all,” I told him. I feel as if every day I am reminded that people are still very uneducated about ASD and how it affects those who have it. After taking my ticket at the office, I sat waiting for 15 more minutes until my appointment time at 9:15 a.m. and began to realize that I probably could have arrived 5 minutes before my appointment and still been called back at 9:15  and not a minute before or after. Finally, I was called back only to find out that this month, my school refund check counts against our income and Monkey’s eligibility. It doesn’t matter to the SS office that that is money for school and I only get that money every six months. They qualify that as income, but it won’t count against us next month, the woman assured me. This was a bit annoying because the money I get for going to school isn’t income. It’s a loan, which I have to eventually pay back. And other than this, we have no other means of income until my husband begins getting paid for his new job. He won’t see his first pay check until some time in September. So, I went home wondering if it was even worth a trip back next month.

A little while later it was time to get my husband and son up and start getting them ready to go off to ST and OT. My husband gave my son a bath (my son almost climbed into the tub with all of his clothes on, he was so excited about bath time) and then I gave my son something to eat. Then I realized that I needed to go get some cash from the bank so that we could buy a surgical brush for the Wilbarger Protocol (which is explained here: http://www.thetherapyplace.net/newsletter/3_2.htm) for my son while we were at therapy today. I went off to the bank and withdrew $3, feeling silly doing so, but knowing that it was necessary. The surgical brush would only cost $2, but I wanted to account for any sales tax if any would be added. Once I got back from the bank it was time to go off to therapy. I was glad that this time I would be going along because last week ended up being such a disaster in my absence. (I had another appointment at the same time that couldn’t be changed and Monkey already wasn’t feel well, so he was so uncooperative once he got there that both his therapists suggested that my husband take him home and bring him back this week if he was feeling better.) We arrived and went into the play room where my son immediately went to play with Lego blocks while we spoke to another parent who will also be working with my husband this semester. At some point, my husband realized that he’d forgotten his wallet, so he left to go retrieve it and go to the grocery to pick up a couple of things and then Monkey’s speech therapist showed up to take him back.

She was really glad that my son was feeling better, but once we got back into the little room, she informed me that she has taken another job, so Monkey will only have one more appointment with her before she leaves. I understand her need to make this decision, however, I know that we are going to miss having her in my son’s life. She plans on exchanging emails and keeping in touch. She also informed me that she does not want my son to have to wait for another ST, so she attempted to get me a new one right away. The upside is that the new ST has a lot more experience with Autistic children. After this big bombshell, I left my son in the room, so that therapy could take place and things sounded like they were going really well. I still sit outside of the room so that I can hear how my son is doing. When his ST came out of the room, she was amazed at how wonderfully my son had done. He had said several words including cat and some other words I can’t recall now. I also asked his ST whether or not it would be useful to buy a PECS (Picture Exchange Communication System) binder. If you are a fan of the show House and watched the episode about the autistic child who had worms and saw squiggly lines, then you’ve seen such a binder in action. They look like this: http://www.difflearn.com/category/picture_communication. She assured me that this would definitely benefit Monkey and I have intentions of either buying or making one of my own, though making one is a lot more difficult than just buying the binder and making the pictures to go inside.

Then it was time for OT, which is almost always a difficult time because we usually have to wait for several people to clear out of the room that we use and then have to walk through said people to get into the room. This always puts my son in a bad mood and I don’t blame him since it bothers me to go through that many people as well. Though my son was fairly uncooperative in OT today, it was still quite interesting since my son decided to grab a peanut ball, which looks like this: http://avonshop.co.uk/shop/Assets/images/prod/prod_1046110.jpg and say, “Gimme that!” I know I heard him correctly because his OT responded with, “Hey now, that’s not very nice.” A few minutes later, while she was attempting to get him to color with finger crayons, (he wanted two of them; one for each hand so that he could visually stimulate himself) he said, “Gimme that,” again several times, crying when he didn’t get what he wanted. I was really glad that he was talking, but not very pleased with him being mean. I’m extremely happy that the talking has begun to emerge, but now it is also time to teach my son to be polite and use nice words. Before we left, we also informed Monkey’s ST about what he’d said during OT. She was thrilled with Monkey’s progress and seemed genuinely sad that she wouldn’t get to see him every week anymore. Then we paid for Monkey’s surgical brush and left.

After we got home, I had to take a nap to attempt to get rid of the migraine. It’s still not completely gone, but I am feeling better than I was before and upon waking, my son was playing with a blue marker and I was able to get him to say, “blue.” So, it’s been another great day for verbalization and I am so happy about that. This makes me glad that my son will be starting preschool soon, but being a mom, I’m still dreading sending Monkey off to school because of how much I’ll miss him during those hours. Preschool is only three hours a day, but just like any mom, I’ll still be dreading those first days of school.

A Day Away

Today was a very interesting day for Monkey. First of all, he woke up at 6:50 a.m. screaming so loudly that it woke up my husband. I’d put him to bed early, but I could hear him playing in his room until I went to sleep at 11:00 p.m., so it was unusual for Monkey to wake up before 10:00 a.m. Here’s the problem: Monkey likes to suck his right thumb, but I noticed a sore on it the other day and have kept it bandaged to keep it from getting infected. He won’t suck his thumb with the bandage on it and is not at all convinced that he has another thumb. He’d also been constipated from the potty party and he’s cutting his four year molars, so he’s been pretty difficult lately.

Now, today my husband starting training for his new teaching job, so he was going to be in the next town over where a friend of mine lives, so my friend and I made plans to hang out for the day. She needed to borrow a drill to hang up a shelf and I happen to have one. So, this morning, my husband and I decided to go to the next town together, but because our son was being pretty difficult when it was time to leave, I told my husband to go on and I would handle taking care of our son, so my husband left. Once I finally got my son calm enough, I decided it would be safe to go, put him in the car along with tools to hang the shelf and all of the things my son and I would need for the day and headed to my friend’s house. Naturally, I took the wrong exit and got lost, but was easily directed to the correct location. Then once we’d gone to get some food and were back and settled in for the day, my son continued to be difficult until I finally gave him some medicine for his pain and he went to sleep on the couch. He slept for a few hours, but I was glad because I knew he didn’t sleep well last night. So the real fun didn’t happen until he woke up.

After my son woke up, he started being quite vocal. At one point, he held out a water bottle and said, “More.” Then, later, he was trying to open a box, but couldn’t get it open, so he said, “Open it!” A TWO WORD PHRASE! After that, my husband stopped by once he was finished for the day. Our original plan was to cook out at my friend’s house after our husbands were finished at work, but my husband decided that he was too tired and went home. I stayed to help put up the shelf because we’d spent the whole day cleaning. (My friend has a two month old baby and I could see that she was a little swamped and volunteered to help.) After my husband left and once my friend’s husband returned, I went to show my friend’s husband that we’d cleaned off their back porch. My son followed us outside. When he wanted to come back inside, I was standing in the way, so he said, “Go in there.” A THREE WORD PHRASE! After we came back in, we all went up stairs to tend to my friend’s baby. (No, it did not take all of us, but we all wanted to be near the baby.) So, my son comes in the baby’s room and starts flipping her light switch on and off. He’s visually stimulated by this. My friend has two cats and one of them was close enough to the light switch to try and flip the switch with her paw, but son decided that she didn’t need to flip the switch, pushed the cat’s paw away and said, “No, dummy.” ANOTHER TWO WORD PHRASE! I have no idea where he learned the word ‘dummy,’ but it was hilarious to hear him call a cat dummy. I knew a little later that I had not mistaken what he said because the cat tried to flip the switch once more and when he pushed her that time, she batted my son with her paw and almost scratched him (with no intention to hurt him, though) and he said, “Dummy!” again.

Shortly after this, I decided to leave so that I could get home before dark and now my son has been sitting here next to me watching cartoons and interacting with the TV. All and all, he’s been completely productive today and I’m not sure where all of these words came from. I called my mom and told her that maybe we should make him mad more often because it seems as if he’s more vocal if he’s upset than if he’s content. Regardless, I am really glad we had such a productive day today and really hope that this behavior (not the being difficult, but the talking) continues.Then at the end of the day, I found a link to this video in my email and it made my day: http://www.youtube.com/watch?v=34xoYwLNpvw&NR=1.

A Potty Party

So, today, I decided to use Teri Crane’s method for potty training your child which is all explained in her book, Potty Train Your Child in Just One Day (http://www.tericrane.com/). Now, first of all, I must say that this method is not recommended for children with special needs and/or developmental delays, so please, please don’t read this post assume anything about this method.

So, it all started one day when I was looking for a quick way to teach my son to go potty. I’d done all of the things that were suggested to me, like re-enforcement with candy or stickers, putting my son on the potty with clothes on and clothes off, putting him on the potty in the mornings when I know he has to go. This all lead up to Monkey going potty every morning as part of his morning routine, but if I put him on the potty during the day, he holds it until he has a pullup on. So, I began looking up potty training techniques and found Crane’s book. It was at my local library, so I picked it up and read it. I have to admit, it was highly entertaining.

At the time that I read the book, I still didn’t have the money to get the potty training materials, which included a doll that wets, party supplies, snacks and drinks, so I took the book back and decided to wait until I had the supplies. Then a couple of days ago, searching online, I found a store that sells a doll that wets (http://www.toysrus.com/product/index.jsp?productId=3252893). That was the only product I was having issues finding, but I’d found it and when I opened the box to see how it works, I was delightfully surprised to find that it is anatomically correct. The book recommends that an anatomically correct doll be used if at all possible, however, a doll or stuffed animal that does not wet can be used. So, last night I prepared by learning how the doll works, blowing up balloons (which my husband helped with) and putting out potty training books and DVD’s that I found at my local library.

This morning, I woke up early and began making final preparations. I put the balloons in Monkey’s bedroom floor, put the doll on a table where I could easily reach it when I woke him up and made my way to the kitchen to prepare some snacks. The book makes it seem like the party has to be really expensive, but it doesn’t. I paid about $25 for the doll that wets, used my son’s comforter for a water proof blanket, found snacks we already had and then bought balloons for $1.25 and stickers for $1 at my local Family Dollar store.

Then it was time to wake my son up. He was actually already awake when I came into the room. The book says not to immediately put the child on the potty, however, since my son has Autism and needs routine, I decided to go ahead and put him on the potty because that’s normal for us and he needed to have at least one part of his routine left in the day. So, I showed Monkey his new doll and told him that today, he was going to teach his new doll how to use the potty. (I accidentally skipped the part where I give myself a gift, too.) My son did what he normally did and went potty, but rather than give him his normal treat, I presented him with a tray full of tasty treats and let him choose his own.

While he was on the potty, I grabbed his comforter and put it on the couch. Then I got my son off the potty and brought him into the living room where we watched one of the DVD’s I’d borrowed from the library. After the movie was over, we went back to the potty to “try again.” Each time, I made sure to bring the doll with us and explain to my son that he was showing the doll how to go potty. We did this all day and then at the end of the day, my husband went off to pick up a friend of mine for the end celebration. I continued the schedule of back and forth, watching DVD’s and going potty (taking short breaks from potty related stuff throughout the day) and then I got a phone call. My husband had accidentally popped one of the tires on our car, so he went off to fix it and my friend told him that by the time he got back to pick her up, she would have money to put gas in her car and would be able to drive herself. She was planning on stopping by the party and then driving on to another city anyway. I’d invited other people, but since it was a spur of the moment event, most people couldn’t show.

By the time my friend showed up, my son had had one accident and had not actually peed or pooped in the potty all day, except when he went, very first thing in the morning. No matter how many trips we took to the potty, it looked as if this technique was not working for my son at all, but I continued to go through all that I could remember from the book. My son was pleasantly surprised when my friend showed up, too because he hadn’t seen her in about two months. (She’d been in another state for a while.) So, this evening, I put a pullup on my son and explained to him that he still needed to use the potty. The pullup is for just in case. However, all hope is not lost. My husband and I plan on putting my son on the potty every time one of us needs to potty, that way he understands that going potty is part of the entire day, not just part of our morning routine.

As for the book, it’s entertaining and the technique of having a “potty party” would probably work for a normally developing child. As for my son, I’m still not sure if he understands why we did all that we did today, but he’s still dry for now, so we’ll see how it goes over the next few days. I should have reviewed what I had previously read yesterday and given people more notice so that they could have celebrated with us. Maybe then it would have worked better, but for now, I’ll wait and see if this day was worth all that was put into to it. Even if it wasn’t, I still took away something. I’ve been told by professionals and other parents to put my son on the potty at regular times throughout the day, but we never really begin or end our day at the same time, so this isn’t really an option unless we can figure out a regular schedule, but maybe putting him one the potty when we need to go will work along with the reinforcement of this day.

Lastly, I’m not sure a doll really benefited my son with potty training, but in the long run, it might benefit him with socialization. He’s never had a doll before. He’s had stuffed animals, but no dolls. He was semi-interested in the new doll, but generally ignored it when it made noise or went potty. I’ll keep using the doll and some of the techniques from the book, but this is definitely not a one day program for my son.

Gummy Therapy

It’s Wednesday again and for my family that means that it’s therapy day for Monkey. He gets Speech Therapy (ST) and Occupational Therapy (OT) every Wednesday for one hour each. Even though it’s only two hours, Wednesdays always seem to be our long days because of all the things that are done before and after therapy. For instance, today, I did some cleaning (mainly dishes) before it was time for us to leave. My husband gave my son a bath while I cleaned and then it was time to go. Two hours of therapy usually takes about three hours out of our day because of driving time and I prefer to get my son to therapy early so that he can spend some time with other children his age. There is a waiting room with a play area where I can let my son run freely without worrying about him getting hurt.

Today, I got there a bit later than usual, but still about 20 minutes early. About five minutes before the appointment, I could smell Monkey from the other side of the room. (We are still working on potty training). So, I quickly went to change him, finding little cashew pieces in his pullup. I also noticed Monkey had a slight fever last night (probably from the cashews, which we will not be giving him again) and was still a bit warm this morning, even after giving him some Tylenol. So today, I took Monkey into ST, which he has first and explained to his therapist that he wasn’t feeling very well today, but seemed to be doing better before we left. Then Monkey decided to leave the room on his own about 15 minutes into the appointment. He wandered into the facilities kitchen so his therapist asked me if there’s some kind of eatable treat that would really motivate him. I suggested gummy snacks. This turned out to be an interesting and effective suggestion. Monkey was very vocal today. He said some words that he’d said before and some that he hadn’t. He even said a two word phrase, “the book,” when asked, “What do we read?” I could see Monkey’s therapist getting so excited that she probably could’ve cried. He said, “pop,” “bubbles,” and “moo,” along with some other words I’d never heard him say before. Each time he was asked to say a word he was told that he’d get a gummy in exchange and it worked so well that his therapist will probably try it again next week.

And before we knew it, it was time for OT. I also let the occupational therapist know that Monkey wasn’t feeling his best today, but for not feeling well, Monkey did surprisingly well. At one point, his occupational therapist explained “brushing” (referring to the Wilbarger Protocol for sensory processing disorder) to me, explaining that I should do it several times a day. They sell a surgical brush for $2 there for this, but I had no cash on me, so no way to pay for one on the spot. Basically, “brushing” is where you brush your child’s skin with the horizontal side of a surgical brush up their arms and legs and down their back. You do not, however, brush their head, neck, or belly. So, because I didn’t have any cash, I decided that I would buy a surgical brush later at a pharmacy. The rest of the appointment went pretty well for Monkey not feeling well and again, before we knew it, it was time to leave.

As soon as I got home from Monkey’s appointments, I began doing some research on where I could find a surgical brush. First of all, a surgical brush (sometimes called a sterile brush) is a soft scrub brush that surgeons use to clean their hands before performing surgery. If you have an Autistic child who is also a “sensory kid,” you probably already know what this is and most likely own one, but explaining this to people who are not surgeons and outside of the Autism community is difficult. So, I called a local medical supply store to ask if they carried one since I couldn’t find one online at a Walmart, Kroger, Riteaid, or Walgreen’s pharmacy. Once I was able to sufficiently explain the original purpose of such a device to the person on the phone, they told me that they saw one at a Kroger in my city, but it wasn’t my local Kroger and I wasn’t sure exactly where the Kroger they were talking about was. I decided that maybe my local Kroger had it since it’s a Kroger Marketplace and is huge. I needed to go out to get more Tylenol for Monkey anyway (we ran out this morning), so the trip would not be wasted if I couldn’t find what I was looking for.

So, I began thoroughly searching the pharmacy looking for a surgical brush. I looked in every single isle in the pharmacy section, but didn’t spot it, so I decided that I would ask a pharmacist (maybe they had one behind the counter). The cashier at the pharmacy counter didn’t know what I was talking about, so she went to explain it to the head pharmacist who came over to assist me. I explained what it was to him, but he was unsure what I was talking about, too. Then we went on a wild goose chase through all of the isles of the pharmacy again, with me explaining to the pharmacist that I’d “looked here and here, too” (maybe I missed it, though). I made sure to tell the pharmacist that if they didn’t already carry such a thing, then they should because it’s been estimated that 1 in 110 people have ASD and it occurs in 1 in 70 boys (information from http://www.autismspeaks.org), so it stands to reason that if so many people have the disorder, then pharmacies should carry things like surgical brushes that are used to help people with ASD. I was very polite about it and he said that he’d try to figure out what it was and see what he could do. This was my very small opportunity to advocate for my son and others with ASD and hopefully, something will come of it, but perhaps I will email Kroger about not carrying thing like this in their stores and next week, maybe I’ll remember to have some cash on my person.

So, all in all, a very interesting day and I’m thrilled that Monkey was so vocal at therapy today, even though he wasn’t feeling very well. I love my son and I’m so proud of him.

The Backwards Support Group Meeting

So yesterday was my first trip to a local support group for parents of Autistic children. I’d already done some research on the group and knew that my son would be more than welcome there. Childcare is provided during the meetings so that if you are single, you can bring them along, or if you are a couple, both Mom and Dad can attend. However, the entire day was kind of a mess.

It all started the night before. My husband, son, and I went to visit my mom, which is an all day event because she lives about an hour away and when we got home our air conditioner had stopped working. So my husband, trying to make himself feel better called the office that runs the apartment complex we live in at 11:30 p.m. to find that instead of an answering machine, he got one of the property managers who was getting ready for bed. So, he explained the problem and then yesterday morning at about 8:15 the maintenance person was knocking at our door and there I was in my night gown creating yesterday’s post. My husband and son were both still in the bed. I said, “Just a minute” several times, but I guess it’s difficult to hear from our deck since we live right next to a busy road and because I wasn’t heard, the maintenance person let himself in, while I was getting dressed and my husband was just rolling out of bed. The maintenance man found the problem, which was a missing screw in the motor and went off to rebuild it. It must have been a simple task because he was back with another maintenance person and the fixed motor in about 20 minutes. So, the air conditioning got fixed, but my husband and I had planned a “random day of fun” to get us out of the apartment while our air conditioner wasn’t working and I’d been looking forward to it.

Since we didn’t get to do this “random day of fun” we decided that our son needed new clothes for school (he starts preschool in August) because he’d outgrown every stitch he had. He literally went from a size 3T to 5T just over the summer, but he hasn’t turned four yet.

After shopping and putting things away it was time to rush off to the support group meeting. My husband was exhausted from not sleeping well because of the heat and going shopping, so he decided to stay at home, but I wanted to take Monkey to get him acquainted with the process. I’d never been to the place before, so I gave myself 30 minutes to get to a place that was about 10-15 minutes away. I arrived early. In fact, I was so early that I beat the person who runs it by about 10 minutes. The only other person there was the person who looks after the kids that come with their parents. This was great though, because it gave me the opportunity to let my son get acquainted with the woman and the play room before I had to rush off to the meeting. This also gave me the opportunity to tell the woman who would be looking after my son a little bit about him. In fact, it worked out so well, that I only heard him scream once and it was because the woman kept shutting the door. My son wanted to shut the door for her, but she didn’t know that. Once he was given that opportunity, he quit screaming and went about playing like usual.

The meeting, however was not all that interesting until the last half hour. The first problem was that everyone showed up late with the exception of the person watching the children who got there before me, one of the guest speakers and one other lady. The guest speaker was someone from a charity organization that raises money for selected charities by doing fun activities, which led to a discussion about fund raising and there was another guest speaker from a volunteer organization called Best Buddies where adults and older children (in some cases) are paired with college students to do group activities, much like Big Brothers/Big Sisters only for people with disabilities and targeted more toward adults. She discussed some of her ideas for what her organization will be doing this year and some of the parents wanted to know how their children could participate. This took up the majority of the meeting and my son is not four yet, so it wasn’t really that useful for me to know at the moment, but then the hostess began sending around information books, magazines, and pamphlets and that’s when the meeting began to get interesting. I was able to ask another one of the parents about a program in my state that covers some of the costs of therapies that a medical card won’t cover and the book is suppose to help also.

Then about 15 minutes before the event was suppose to be over, someone suggested that we introduce ourselves. Up until then, I was trying to figure out who was who by whose name had been said at some point. The only people who’d been introduced before this point were the two guest speakers. Then we slowly went around the room introducing ourselves, stopping at several points to ask questions to people sitting near us or to the person introducing themselves and then it was time to go. My son had been lead into the room where I was and was just wandering around in sight of me, patiently waiting for his mommy to finish talking so we could go home. He had fun though, playing in his own little world. All of the other children that came were well over his age, so no one really bothered him and he was okay as long as no one else was bothering him. And then we left. On the way home, I turned the wrong direction three times, but only had to turn around and go the other way once since the last two wrong turns just made the trip a bit longer, but didn’t really get me lost. When I got home, my husband was outside waiting for me, about to call my cell because I was so late. As we came up the steps to our apartment, I explained to him that I accidentally took the long route home. He laughed and said, “Yeah, that’s just another way of saying you got lost.” I had a map to get there, but didn’t really look at the map to get back and I still say that I wasn’t really lost (I knew exactly where I was. I just took a few wrong turns.) Then I told my husband all about the meeting, explaining that it was a “backwards support group meeting,” meaning that the beginning was at the end (introductions) and the end was at the beginning (people arriving late; usually people have to leave).

Autism Spectrum

“My son was diagnosed with Autism?” –Me.
“Oh, so where is he on the spectrum?” –Random people who either don’t know much about Autism, or didn’t ask their child’s doctors about ‘The Spectrum.’

This is one of the most frequent responses I face when I mention Monkey’s diagnosis and I have an answer. ‘The Spectrum’ doesn’t exist. At least not yet anyway. When I asked my child’s doctor about where my son was on this mysterious spectrum, he politely explained to me that in the medical community “Autism Spectrum Disorder” will not be recognized for probably another year or two. However, many websites about Autism lightly use the term “Autism Spectrum Disorder (ASD).” ASD actually refers to a few different disorders. Many people, myself included, assume that since the word Spectrum is used that ASD works like scale. For instance, the answer to where your child is on the spectrum would be low for one type of Autism and high for another type. Asperger’s further complicates things because it is often referred to as “High Functioning Autism.” However, medically speaking, Asperger’s is a separate disorder.

The types of ASD are Autistic Disorder (Classic Autism), Asperger’s Syndrome (High Functioning Autism), Pervasive Development Disorder Not Otherwise Specified (PDD-NOS or Atypical Autism), and Pervasive Development Disorder (PDD which includes Child Disintegrative Disorder [when a child looses skills they once had] and Rett Syndrome [which only occurs in females]). (From http://www.nichd.nih.gov/health/topics/asd.cfm). I have yet to find the website that describes ASD in terms of a numeric scale and it seems that the high and low are Asperger’s and Autistic Disorder. Therefore, I find the question about where my son is on ‘The Spectrum’ to be really unfair. I always wonder if I should say, “Oh, he’s really high on the spectrum, or really low.” I don’t see my son as either high or low since my son does not have Asperger’s, but functions better than other people who have Autism. There is a quote you’ve probably heard, “If you know one person with Autism, then you know one person with Autism.”

My son’s doctor simply told me that ASD simply doesn’t exist yet and that if my son was diagnosed with Autism, then he would just be diagnosed with Autism. Not ASD. And even when ASD does become medically recognized, nothing for my son will really change because ASD refers to a few separate disorders. So, when you are asked, “Where is your child on ‘The Spectrum?’ I suggest simply explaining that your child has a specific disorder, which is part of the spectrum, but that your child is neither high, nor low because we (at least in the US) thrive on equality and one child is not better than any other child. You’re child may have special abilities and that is wonderful or they may seem to have no special abilities at all, but the point is that they are our children and that makes them just as special as any other child. This is why the term ASD bothers me so much. Does it bother other parents? Medical professionals? How do you respond to this question? Were you taken back by it at first? What’s your story?

Going to the Board of Education

So, I finally went to the Board of Education, form stating that my son is Autistic in hand and it was a complete waste of time to say the least. I’d already enrolled my son for preschool this year, making sure to have all of the necessary forms delivered to them in person. Today, I drove into town, which I hate doing because it’s a bigger city with far too many one way streets in the historic district, parked my car in the smallest parking space, walked into the Board of Education to find a couple with their four year old daughter sitting outside of the preschool enrollment office waiting for someone to get back. The sign on the door said, “Will be back at…” The read hands on a face clock pointed at the 12 and 6. The small hand on the 6 and the large hand on the 12, meaning the sign said, “Will be back at 6:00.” The couple assumed the sign was suppose to say, “Will be back at 12:30.” It made sense because it was around lunch time, but the couple had been sitting there for almost an hour waiting for someone to arrive. I decided to take a chance and wait with them. At least they could have a bit of company if they weren’t giving up. At about 1:20 a woman finally walked up the back steps and opened the door, pulling the sign off as she entered. She meant for the sign to say, “Will be back at 1:30.”

I entered the room with the couple and their daughter and took a seat to wait patiently until they had finished their own business. They only needed to provide proof of residence, so they spent approximately one hour to do something that took five minutes. That doesn’t include drive time during the lunch rush traffic. I felt sorry for them. They left gladly and then it was my turn. As I spoke another mother came in with her daughter and began filling out the enrollment form. I told the woman why I was there. I had the form that stated Monkey’s diagnosis was finally official and I needed to drop it off. First she couldn’t find my son’s file and I had to spell out our last name for her, even though our last name is also another city not far from here. She spent about five minutes just trying to find his file. “When were you here to enroll him?” she asked me. “About a month ago,” I replied. She couldn’t find my son’s file on the computer and walked across the room to find the paper file. It wasn’t there. Then she asked his name again. I told her again and she found it on the computer. Clearly, I wasn’t dealing with someone who was very bright, I could tell. Then I explained the paper to her again and she informed me that she didn’t need the form. I could give it to my son’s teacher when she calls after August 10th. “School doesn’t start until August 22nd,” she told me, but I already knew because I looked that up online. I asked about a special classroom. Preschool students don’t get a special education classroom in this school district, regardless of whatever disabilities they have. So, now what? I guess I wait to hear from his teacher, who will visit my home twice. Once before school starts and the woman didn’t tell me when the other visit would be.

However, all was not lost in this wasted little trip. After I left, I stopped at the Family Dollar store that is on the way home to find a specific package of bubbles for my son. I was looking for the kind that they use at therapy for us to use at home because the wands create many more bubbles and your hands don’t get messy because the handle also the lid for the bubbles. I have yet to find this, but I walked into this dollar store and found something better. I found a package of bubbles that came with a spill proof lid. Naturally, I bought it in the hopes that it would work as well as advertised and to my surprise, it does. So, I did waste my time by going all the way downtown, but at least the trip wasn’t a total waste.

And now for some news on my son: He is continuing to say, “pop,” but today when I brought the bubbles home, he said, “bubbles.” This is a new word that he hasn’t said before and then later, I made popcorn, which he loves and he said, “pop…corn.” This was also new, so two new words in one day. This is magnificent, let’s hope he keeps up the good work. 🙂

After Monkey’s Vacation

Okay, so here’s some background about myself. I have a B.A. in English and am currently in a Low-Residency MFA program. My goal is to obtain a Master’s of Fine Arts in Creative Writing and become a professor of creative writing at a local university. My husband has a Master’s degree in English and will begin teaching as an adjunct professor in the fall. Because I am in a Low Residency program, I am required to come to the college campus, which is 4 1/2 hours from where we currently live and stay for nine days before the beginning of each semester. Last week, I just went to my third residency and normally, my husband and son accompany me. Children aren’t allowed to attend most of the events, so it’s pretty much a mini-vacation for my husband and son. This meant that my son would have to miss ST (speech therapy) and OT (occupational therapy), but luckily it was the same week that the facility has a camp and is closed for all regular appointments. The week before this, my son had to miss OT, which he had just started only a couple weeks prior because his Occupational Therapist was going to be out of town that week. That meant missing two weeks of OT and one week of ST.

While we were gone Monkey said, “button,” referring to the elevator button, which he loves to push and “pop,” referring to popping bubbles, which are often used in ST and OT. This was wonderful news to his Speech Therapist, however today ST and OT were very interesting. Normally, my son does really well and is very cooperative in ST because everything is consistent, but OT has been a bit different. My son was assigned an Occupational Therapist, but not a room to have OT, so the last time he saw his Occupational Therapist, she reserved a room for consistency. His Occupational Therapist was also doing something that my son couldn’t stand. She was talking to him in one or two sentence phrases and Monkey was not responding well to this. For him, you must ask him to do things in the form of multi-word questions that include the word please (i.e. Monkey, could you please put the lid on this?) and then you must say, “Thank you,” to let him know he’s done what you wanted him to do. Once this issue was corrected, things were running more smoothly, but still very rocky in OT until this week, when Monkey did a complete 180 degree turn. ST today was a complete struggle and I had to actually step into the room to help calm him because he was screaming so loudly it sounded like someone was beating him. Normally, I leave the room for ST, but since OT is so new still, I remain in the room learning techniques to use at home. Today, I had to be in the room for half of ST. I stayed in the room for OT just like normal and Monkey was doing really well. In fact, he was doing so well, that I am planning to leave the room for OT in a couple of weeks. I think that as long as things remain consistent, my son will start doing much better, even though it’s two hours and my removal will help him when he has to go to preschool. I can’t always be with him in school, but sometimes I wish I could. 🙂

The Blogging Begins

Hello. I am the mother of one wonderful and unique son who was recently diagnosed with Autism. Let me begin this post with some background information. First of all, my son will be referred to on this website as Monkey. When my son was born, my husband and I bought a onsie from Wal-Mart that said, “A Little Monkey Business.” It was so cute that we eventually bought another one, but my son has since grown out of the onsies, but not the nickname “Cute and cuddly little monkey business.” Therefore, I will refer to him as Monkey. Now, Monkey was born in August of 2007. He was a pretty healthy baby. He weighed 7lbs. 4oz. and was 20 3/4 inches long, but had a “touch of jaundice” as his doctor put it. I suppose I was the unhealthy one, though because Monkey was a c-section baby. I was told after many hours of labor and several adjustments in dosage of Pitocin that Monkey’s heart rate was dropping every time I had a good contraction and every time the doctors lowered my dosage of Pitocin I would stop having good contractions. A c-section was the only option in my case. I just wanted a healthy happy baby, so I let the doctor do his work.

After my son came home, he acted pretty much like a normal baby. Then when he was five weeks old, his hands could touch the sides of his bassinet and this bothered him. My husband and I discovered that our son just needed more room, so we put him in his own crib and slept in his room with him until we were able to buy a baby monitor. My son babbled and cooed like most babies and his cousin who is almost the same age (only older by about 2 1/2 months). But at one year, my son wasn’t yet walking and couldn’t say any words. His cousin said a few words and could walk. We took my son to his pediatrician in search for an answer as to why our son wasn’t walking. We thought talking would eventually come. Our pediatrician asked us about the flat spot on our son’s head. We knew he had this spot and worried a little bit about it, but the spot didn’t seem to affect our son. Our pediatrician sent us to a specialist to evaluate him on his ability to walk and sent us to have an X-ray done on our sons head to make sure that the flat spot wasn’t putting any pressure on his brain. His daddy also has a flat spot on his head in the same place and the X-ray was normal. There was no pressure on the brain. Good. When Monkey went to be evaluated by the specialist about his ability to walk, we were told that he was showing signs of walking. He has a big head and small feet, but he will eventually walk and he did. My husband and I were so happy that he took his first steps and eventually walked by himself, but there was still a problem.

My son still wasn’t talking. He was only babbling. It wasn’t long though, that my son started using the word, “no” and I thought, surely more words would come. We lived in a small town and seeing a specialist meant driving an hour and half, but I was willing to drive. At age two, Monkey still wasn’t talking that much. There were no two word phrases and many words were parroted or eventually lost. By that time, his pediatrician suggested we see a developmental specialist, but that we see this specialist through something called Tele-care, which is basically, seeing and being evaluated by a doctor through a television, like a video call. I was working and couldn’t make the appointment, so my husband took my son that day. At the time, my husband and I were considering moving to the bigger city that was an hour and half away, so the specialist said that everything seemed to okay, but it was difficult to tell. Come back and see him in six months, which would be after we moved. The biggest problem, was that we didn’t move when we thought we were going to. We had to wait. So it took longer to get my son to see the specialist in person. By the time my husband and I found out about First Steps (an intervention program in Kentucky) it was already too late for my son. The cutoff age for the program is three years and we didn’t hear of it until about a month and half before my son’s third birthday.

Once my husband and I moved, things began to look up. We had to transfer our son’s medical card, find a new pediatrician and then make our initial appointment with that pediatrician before we could even be put on the waiting list to see a specialist. This process took from January until April. Once we saw the pediatrician though, we were put on more than one waiting list. We were put on waiting lists for an evaluation by the developmental specialist, speech and occupational therapy. Speech therapy was the quickest. My son’s speech delay was the most obvious sign of his Autism. The rest would have to wait.

Now, my son goes to speech and occupational therapy on a regular basis, that is for one hour each, once a week and is making progress. I’ve enrolled him in preschool for the Fall and now that I have the official diagnosis letter, I am prepared to go to the Board of Education this week (probably tomorrow). Monkey is making good progress. There are still no two word phrases, but he says some words more often and more spontaneously, without parroting. Potty training is still a battle, though. Monkey will only go potty as part of his morning routine and will hold it in if he’s put on the potty any other time than when he first wakes up. I plan to make a potty chart and put him on the potty at the same exact times everyday and see if this will work. This is his progress at the moment and I am glad for that.

So, here’s some advice for my first post: If your child isn’t developing normally, push the issue. If a doctor says that your child needs to see a specialist, do not use Tele-care, because it’s not very useful for an initial evaluation of a child with Autism or Autism Spectrum. It’s probably not useful for many other developmental disorders either. If you live in Kentucky and your child is under age three and not close to their third birthday mention First Steps. There may be other programs like this if you live in a different state as well. If I had known that First Steps existed before my son was almost three, he might have gotten more help and that time is something he can never get back. And lastly, if a friend, family member, or complete stranger suggests your child might be Autistic because s/he is flapping their hands, don’t be offended or tense. Just talk to your pediatrician about a diagnosis. It might make a world of difference for your child and your child may be benefited by a much earlier diagnosis. Remember that when it comes to ASD, a diagnosis is essential.