Sunday, December 30, 2012

Catching Up

       I didn't post on Wednesday last week, and I had really intended on writing something. I guess with all the excitement of Christmas, I wasn't up for it.

       I have not been doing well lately. I am not sure what the answer is. Here is what I wrote to a friend last night (or early this morning) when I couldn't sleep:

 Just some random midnight thoughts: after having one child diagnosed with autism, do you ever stop worrying about the younger ones? Do you ever stop examining every little thing they are doing or not doing? How do you keep from losing your shit?
Someone from Feb moms posted the WORDS their baby is saying and understanding and once again I am thinking baby is light years away from that, just like I did at the same age with Buzzy. Fuck. I have wanted 3 kids with my husband since we got married (I told him we would either have one or three, I didn't want to stop at 2). It took me 6.5 years to get over not having more kids with my ex. I don't want to do that again. I don't want to have to get used to that idea AGAIN.
But, my heart can't handle another child with autism. I am already on the damn brink.
Sorry to vent to you.

       So, that is where I am mentally right now. I am worried about our youngest. I am terrified she is heading down the same path as Buzzy.

       I have always been terrified of autism. It was something I worried about with each of my children. It scared me. I didn't know much about it, other than what I had read. I was scared one of my kids might have it. And, now here I am. I am living what I most feared. And some days really, really suck.

       So, since I have more time than usual (my husband has been on break) I will talk about the day of Buzzy's diagnosis.

       I mentioned before that I felt (sometimes) seeing the developmental pediatrician was going to be a waste and that I thought I might be all worried for no reason. Finally, November 1st came. I was looking forward to maybe getting some answers, but not knowing what it could be. I had convinced myself that my son wasn't autistic, so I had mostly stopped really worrying about that.

       The doctor was prompt in seeing us, and we didn't even wait very long in the waiting room. He asked us questions about Buzzy's development and he constantly referred to all the paperwork and records he had with him. There was another person in the room, and I am sure they told me her purpose, but I can't remember what it was now. She was pretty much in and out of the room the entire appointment.

       The doctor also observed Buzzy as he messed around the room. Buzzy wasn't too interested in the good doctor, but he was playing with a few of the toys and making a few noises here and there. Later on in the appointment came the tests. He had Buzzy perform some tasks, like pointing to the parts on an ugly doll's body, putting 3 shapes in a puzzle, and pointing to pictures. He failed the pictures one miserably. He couldn't point to a house when presented with 3 other options. I wasn't surprised at that, but when presented with the unmistakable evidence that your child can't do something that children younger have no trouble with, heart was sinking. And Buzzy was trying so hard.

       Then, the doctor said those words. "Your son has autism." People say things like "and it felt like all the air was sucked out of the room" and "it felt like I was watching myself in a movie, from far away". And it felt like all of those things. I remember thinking that I would remember this moment, in this exam room, looking out the small window to the dingy streets below for the rest of my life. And I will. I have no doubt about that. I didn't cry. I just felt numb.

        The doctor continued speaking. He went over the 3 areas that he needed to show deficits in to get such a diagnosis. He had a meet 6 of 12 criteria to get an ASD (Autism Spectrum Disorder) diagnosis  Only after looking at the official results did I see that Buzzy met 10 of 12 criteria - and the only reason he didn't meet the other two was because he had no speech. At this point in time, if all of the other criteria were still met, he would now have 11/12, because of the obsessive speech patterns he is exhibiting.

       All in all, we spent about an hour and half in the exam room. And then we were done. We were on our own. I made some flippant comment to my husband about my bad genes and we were in the car. As we were waiting at a stoplight my husband turned to me and said. "I just want to be able to take him fishing."

       That is the only time since the diagnosis that I cried. As I felt tears burning my lids, I quickly put on my sunglasses. I had no desire for the surrounding people in their cars, with their everyday lives, to see my pain. And I still feel that way. So, I have been pushing down the pain, ignoring the hurt, and continuing to put one foot in front of the other. But it is exacting a terrible price on me.

       I may end up calling my old counselor. I don't have anyone here - and I don't want to find another one. I want my old counselor. Perhaps insurance will cover a phone appointment.

       So, to return to the present...we FINALLY have ABA set up to start on the 3rd. Not as soon as I would have liked it, but it will have to work.

       We are waiting for the results still from the stool samples. We like to joke that it's taking so long because the EPA had to be notified.

       We also have put in place to get forward with more speech therapy (through the agency that handles the ABA). To say I am disappointed with Buzzy's speech therapist is an understatement. She rarely returns phone calls. Once I figured out she responds to texts, that made things more bearable. (But, during the time I didn't know that - well, it was a really big pain in the ass.) She has missed appointments quite often. And *doesn't* reschedule. I consider speech the most important of all of Buzzy's therapies. And he is getting far less than he needs - even without the rescheduling/no-scheduling. He was supposed to get speech tomorrow. She texted to reschedule to Friday (yesterday) because her husband was taking her out New Years Eve Day as a surprise, so could we move the time as well? I responded that we were going out of town to visit my sister. And no response back. Before that there was a sore throat - and I asked about rescheduling. She said she'd get back to me. Yeah, a week later at our regular appointment.

       I now keep Buzzy strapped in his high chair to do speech. Before he would wander around and she wouldn't get up to follow him. I burned her a copy of a DVD from when Buzzy was seeing Nancy (at KCC) and she never watched it. I gave her a list of words that Nancy suggested we work on, because he had success with those - and she worked on all words with the B sound (because "that's all I had in this car - my husand took the other car to work"). I've asked about working on his oral weakness, maybe getting him some Chewy Tubes (or whatever they are called) or bite blocks or...and nothing. She has the ability to put in an order for these things with the state and the state will pay for them. But, she hasn't bothered. Hell, if i knew how to use those things and knew more about them, I would gladly buy them and use them with Buzzy MYSELF. But, I am not a speech therapist and I just don't know enough.

       So, I am really hoping something opens up so he can get more speech. I would like him to do three times a week. I know it would help him so much. And maybe they will listen to me and work with me to best help Buzzy.

Sunday, December 23, 2012

2 Nights Before Christmas

       My husband is officially on vacation for a few days here from school and so are the older ones. So, I am just going to do to quick update. I am not sure how much I will be saying on Wednesday, either. I have a girl turning 13 on that day. So, the holidays are always busy around here, more than usual.

       We got the results of Buzzy's blood work in the mail the other day. His level of creatinine was flagged for being lower than is usual. I am not sure what significance that has, even after I consulted Doctor Google. Also, his "alkaline phos" was flagged as being high. Again, I am not even sure what that is (I guessed alkaline phosphatase) and I sure as heck don't know the significance of it being high. He also is heterozygous for the A1298C MTHFR mutation. I know a little about what that means. I am not terribly surprised at his MTHFR status, but I am glad he is hetero for it and that it's not the C677T mutation.

       When we get the results back from his stool samples, then I will call the doctor and we will discuss the next steps we need to take. I am really, really, really interested in those findings.

       We are still giving the shots and the vitamins and everything else. The shots are going a lot better since I was told about a device called the "shot blocker". It's a little plastic thing with dull teeth on the underside that you press against the skin as you give the shot. It's supposed to trick the nerves. It worked pretty well the first time we used it. We haven't had a chance to use it again yet, his next shot is on Christmas Eve. Ho, ho, ho.

       We are also (or we were) trying potty training. Yesterday went really well with only a few pee accidents (but all poop accidents). Today was not as successful. I am not sure he even understands what the potty is for. By about 4 pm we put him back in diapers. Sigh.

       Also, we are all set to hear from the people to get ABA started this week. I am really looking forward to that. I am looking forward to seeing what they can do for him.

       We have had a couple of set-backs this week with diet. Buzzy has gotten into certain girls' rooms and eaten some illicit candy. I get so frustrated sometimes trying to make sure everyone just does the simplest things: like keep their rooms locked. Sometimes I feel like I am the only person in the house this matters to. I know that's not the case, but Buzzy's diet is so important. I know we will get there, but I wish my girls could understand why it's so important.

       On one final note: A very Merry Christmas to all my readers!

Wednesday, December 19, 2012

All the Evidence I Need

I was beginning to question some things lately. In the back of my mind, I was wondering if we would have still seen all the positive changes in Buzzy even if we hadn't started him on the GFCF diet. I was starting to wonder if it was really that big of a deal.

Would we have seen the same changes anyway - with all of the supplements we were giving him? Was the diet really worth all the deprivation and trouble?

After Monday, I can definitely say that the diet is what is making the most difference. Unequivocally.

Monday night my middle daughter had a pizza party in town to celebrate the end of the traveling basketball season (yay for her parents, too!). My husband and I discussed keeping the babies at home with one of us, obviously. I didn't want to do that. I was hoping the pizza place in town might prove to be like Monical's and have apple slices the kids could eat, or a salad bar or something else. Anything else.

That was a tactical error. Oops. They had soda. And pizza. I tried in the beginning to pick off the pepperoni and just give the meat to Buzzy. But, despite the fact he had eaten a few hours before, he was hungry for the gluten and dairy fest. I wondered how bad it could be, and we let him have 2-3 slices. They were rather small pieces, maybe half the size of an iPhone. He had 4 pieces at the most. The baby got in on the action, too. She had a few bites, perhaps half a piece.

That night Buzzy was a little more fidgety when I was reading him his bedtime stories. The baby was terrible. She squirmed all night and didn't sleep in her crib at all. She kept getting up to nurse. By that time, I was chugging water in hopes it would flush all the pizza I had out of my system. My husband spent a large part of the night with the baby in the recliner. She finally settled down in the bed at 5:00 am. Buzzy woke a few times at night - crying out. He sounded like he was having nightmares.

Then, Tuesday. Buzzy had DV and OT therapies. The baby was very clingy and whiny. I watched Buzzy and he was toe-walking. Which was something I hadn't seen him do in a while. And I didn't even realize he'd stopped, until I saw him doing it again. He looked tired and like he had allergic shiners under his eyes. At times, I noticed his gaze was glassy and vacant. He was much quieter for his DV therapy and definitely less focused.

For OT, he was the opposite. He still was staring off into space, but he was jumping all over the place and was very high energy.

I wouldn't have believed it if I hadn't seen it. And neither of the little ones pooped until today. Which is unusual for the baby, for sure. And it's definitely rare for Buzzy.

Fortunately, we are back on track and Buzzy has been doing better again. In fact, tonight he walked up the stairs and tried to open our bedroom door and said, "Mama!" He knew I was in there (taking my shower) and he was looking for me.

On Monday, he proclaimed he was "all done" with eating. And then said "up" so I helped him climb into my lap. And he proceeded to eat the rice on my plate. And when it was gone, he took my plate and stood in front of the fridge and said, "more rice". If that isn't functional communication, I don't know what is. Of course, I promptly gave him more rice. And more after that.

He is developing some obsessive speech, though. Many times a day we go through the "broke light", "what did it?", "vacuum", "did Buzzy do it?" routine. And "baby cry" is another fixation of his. Never mind that 9 times out of 10, he's the reason the baby is crying (tries to carry her places, takes her pacifier, pokes her accidentally in the face, etc).

I am still waiting to hear about ABA. I called them today and they promised me someone would call me back. So far no calls.

We did receive our packet in the mail for the service dog. It was kind of overwhelming to read about the fundraising. I have about zero experience with fundraising and my husband isn't enthusiastic at all about asking people for money. To be honest, I am not either. But, it's very expensive. It would take us a long time to save up the money. And once we have enough, the wait time is about a year before the dog is placed. We, ourselves, are going to put as much as we can into it, as often as we can. But, we are also going to ask for help. I have a few ideas on how, but it is extremely hard to ask from others. And I don't like it, and I definitely don't want to do it.

But, then I think of Buzzy and I find my resolve. I think it's important enough, and I will fight for him, for this.

Sunday, December 16, 2012

Not a good week

It seems as if this last week was not a good week for many. I can't write about Buzzy this week entirely without any mention of the shootings in Newtown. My heart goes out to those families whose lives must go on without their children, their moms, their family members. Such a horrible tragedy.

I haven't been watching the news on television, but I have been reading articles in the newspaper and on the internet. I can't handle much more than that. We have just been dealing with some severe depression with one of my daughters and that has been very hard on us all.

We have been doing much better in the days since we got the news about my daughter, but I know I can't handle much more in the way of bad news in the family. So, I hope that's all we get in the way of crap news.

The main thing that made my day today? Finally getting the last of the stool samples. I have been collecting poop out of diapers and bagging up Buzzy's parts and hoping the urine collection bags don't leak since Friday. I will be thrilled when FedEx comes and picks up that box of goodies! Heh heh.

The shots are finally getting a little easier. Wednesday was the worst day, by far. It included 2 sticks, forgetting to swab his butt with alcohol, and then giving up and having my husband do the shot. And wasting some of the vitamin, because I was pressing the plunger and the needle wasn't it. Oh, and there was a lot of screaming of crying. And not all of it was Buzzy's! But, last night I decided I was going to just do it and (as dumb as this sounds) I tried to visualize it going well. Buzzy still screamed, but I gave him the shot on the first try. I did, however, stick myself as I was putting the cap on the needle. I wound up bending the needle and it was sticking out of the cap and I got nailed by it. Ouch.

Buzzy has been using more words. He likes to talk about the time he put the vacuum cleaner on the kitchen tabl e and the handle hit the glass on the kitchen light fixture and broke it. He says "vacuum broke light" and even makes the sign for "broken". I keep trying to ask him who was responsible for breaking it, but the most I get from him is "vacuum" and once "mama".

He also is saying "up" when he wants to get on my lap. I suppose that's pretty functional. He knows I can't resist when he does that. I don't care - hearing him speak and say a word anyone could understand is pretty awesome.

Wednesday, December 12, 2012

Moving Forward

       Buzzy continues to make progress with verbalizing things, which has me very excited. He said "Elmo" the other day when he was working on an Elmo puzzle with his DV therapist. And that was only after hearing it a few times. We don't watch too much television here and he's never seen Sesame Street, but his clear use of the word has me thinking I should get him some kind of Elmo toy. He also says "baby cry" when the baby is crying. And sometimes when she isn't. And sometimes he uses when he's made her cry. I'll take it.

       His eye contact has improved a lot lately, as well. He and I were having a stare down earlier in the day when he was trying to go upstairs. (Baby was napping and upstairs was strictly off-limits, and he knew it.) I told him no, fully expecting him to go right up there. He paused and looked right at me. We had a staring contest, and then he actually came downstairs. It was amazing. He also got scolded tonight at dinner for throwing a mild tantrum and he started at daddy and quit kicking and being obnoxious. He even let me read to him during the day. Granted it wasn't much (_The Very Hungry Caterpillar_), but that was something he hasn't done in a loooong time. I felt if he had his weighted blanket he would have let me read even more.

       Alas, the beginning of the week wasn't as productive. I mentioned how Sunday I was trying to get some stool collected. I had his parts bagged. And he didn't poop. So, Monday I bagged the boy bits again and waited. And waited. And waited. And checked the bag. It leaked. I replaced the bag. And waited. And waited. I had him sit on the potty and waited. The bag leaked. And at around 2 in the afternoon, I gave up. No pooping (which for him is rare) and every time I checked the bag, it had leaked. So, I was in a foul mood, realizing that we would have to wait until the weekend to do the collection. I am not even sure how I am going to do that, either. The best idea I can come up with is to attempt potty training over the weekend and collect my samples that way. Oh, and pray they don't get urine on them. I'm open for suggestions. That, or I need to figure out how to use the pee bags so that they work. Ugh.

       We also are making progress with the service dog, which I am stoked about. We got an email to give them a call for an interview on the phone. I called them this morning and once they get our two references and the doctor's note, we can move forward. I am relieved. I was worried we might get turned down. I know where the references are, and we are seeing his doctor tomorrow, so I will ask how that is coming along. After they get those things, we will get sent a packet. Once we complete that, it is roughly an 11 month wait time to get a dog placed with us. Progress feels good.

       We still haven't heard back about ABA. I am being patient, but I will call next week to check in if we haven't heard anything.

       I am looking forward to getting his goodies that OT ordered for him, as well. He is going to get a cuddle swing, a weighted blanket (the one we have is on loan from his awesome OT), something called an EduCube, and a weighted vest. Those are supposed to come right to the house, so I have been on the lookout for packages. Well, more packages, anyhow. We have been doing all of our Christmas shopping on Amazon. And ordered our GFCF foods from Amazon. And his vitamins from there as well. UPS, Fed-Ex, and the USPS are sure getting a workout from us.

       I am just grateful overall for the all of the therapies that exist and the information that I am able to get to best help Buzzy. If I had to have an autistic child, I am grateful that it wasn't until now. I am more mature, definitely have a stable life and household, and so much more is known now than 10 years ago. I can do more now and I can do it better. I would rather Buzzy not be autistic at all, but I am so much better equipped to handle it now at 33 years old than I was when I had my first at 20. It's the little things, right?

Sunday, December 9, 2012


     We have been busy with things for Buzzy since my last post. He had his first appointment with a DAN! doctor on Thursday. My husband took the day off from work, because he had to go with us.

     The whole getting everyone ready and getting there went surprisingly smoothly. The office is about 2 hours away from where we live. The funny part is a number of years ago, I used to see a psychiatrist a few minutes away from where we had the appointment. I used to live about 30 minutes away from there, a long time ago.

     First, I was surprised at how few patients were there. I would have thought it was going to be really busy. Quite the opposite. I saw only one other patient: a young boy (maybe 8) and his father.

     We met with the nurse only. She went over all the paperwork and his history. We talked about our concerns and what we wanted to do. Since I was familiar with how DAN doctors generally do things, this went pretty quickly.

     We spent time talking about the GFCF diet, which she suggested we keep him on for 3-6 months before we evaluate whether it's working or not. I was going to keep him on it, regardless of what they said, because I have noticed some positive changes. And not just in Buzzy, but in myself. I "cheated" and ate rather poorly on Saturday and I wound up with a sore throat (this morning) from coughing and mucous in my throat (just minutes after having dairy). We are also stopping his cheap chewable vitamin (which I knew was crap) and replacing it with some Kirkman Labs Super Nu-Thera. I had purchased the Spectrum Complete II, but the nurse told me that the amount of B vitamins in that may not be adequate and to try the Super Nu-Thera. So, that's what I am waiting on to show up. In the meantime, I am using the Spectrum Complete II. I am also giving Buzzy a shot once every 3 nights of methyl-B12.

     We are also going to be doing stool testing. I am just waiting on the stool for now. Ha! I had to bag around Buzzy's parts, because the urine can't touch the stool and Buzzy isn't potty trained (of course!). Of course, I let my husband talk me into waiting to deal with everything after church, so I missed one really epic poop. And one right before church. The problem is, I need to have samples all collected and sent off by Wednesday or I have to wait another week. (The samples have to be received at the lab before the weekend.) And we know how I feel about waiting. I had to stop his probiotic a few days ago in preparation for this, which I did.

     Buzzy also had a physical. She said everything looked good, and his abdomen wasn't bloated at all.

     We also decided to have Buzzy's blood drawn while we were there and just get it over with. We would have done the testing, anyway. But, I figured it would be better there and then - we were both there and they had someone who does draws on kids. My husband took him back and while Buzzy wasn't happy about things, they got their blood - about 7 vials worth. They will be looking at CBC, micronutrients, copper and lead levels, and testing for the MTHFR mutation (and probably other things I can't remember right now). I am really looking forward to seeing what the results are, particularly about the MTHFR.

     In terms of progress, I have been noticing at night when I read to Buzzy that if I stop at certain points in the story, he can fill in the final word. And it's so cute, because when he gets to one part of _A Fish out of Water _, he will say "more food". We still don't have much in the way of functional communication, but we are progressing from where we were many months ago. Hopefully the functional communication will follow.

     We also attended what I nicknamed the "congrats, your kid has autism!" presentation Saturday morning. I had gone there hoping to hear about more programs that I might get Buzzy into, but it wasn't really good for that. They did go over how autism is diagnosed, what different therapies there are, and similar things, but not much else. So, I was mildly disappointed. I did learn about their intensive "in-addition-to" preschool program, so that was good. I saw a few other parents whose kids were diagnosed, but it wasn't like there was time to really connect with them, like I had hoped.

     Oh, who am I kidding? I am socially awkward, so it's not like I would have been able to do anything. Ha, ha. My husband is the social one, I am not.

     That was utterly evident last night at the pizza party for my oldest (and her basketball team). I sat at the parent's table and I am not sure I said a word the entire night. Everyone there had lived in this town their whole life and I am still an outsider, and probably always will be. One of my husband's colleagues suggested that I would have fun trying to get to know people in this town, and I thought (at the time) what an odd thing to say upon meeting me for the first time. Now I look back and totally get what he was trying to say. Once my husband arrived (and I got up to watch over the babies) they were very chatty with him. Then again - he is the principal.

     Well, here's hoping for more progress this week, and an SLP that shows up - since she cancelled last week and never bothered to reschedule. Ugh.

Wednesday, December 5, 2012

Wasting Time

     Sooner or later I will do a re-cap of everything so far, starting where I left off a couple of posts ago. But, I am not ready for it yet. I am not really sure why. I suppose because the time I was at the KCC was so difficult and so painful. And the same is true for the day Buzzy was diagnosed. So, that particular entry will have to wait another day, when I am stronger and less frazzled. 

     We have had a productive few weeks around here. One thing I hate more than anything else is feeling like I am doing nothing to help Buzzy along. So, that's why I make so many phone calls and am trying to keep a number of irons in the fire, so to speak.

     One of the things I was told by Nancy (from KCC) was that I needed to get Buzzy more therapy.  My MIL later insisted to me that *I* was Buzzy's best therapist, and I needed to be the one to work with him. (My favorite: "A parent is their child's first and best teacher!") And that made me feel awful. I already feel like I am not doing enough with him at home (more on that later). I don't need to hear it from anyone else. 

     I will be the first to say I am depressed. I am not a great SAHM. Some days my energy level is so low it feels like a chore to get up and go to the bathroom. I change the babies, keep them fed, and keep them clean, and play with them throughout the day, and that's it. I don't cook dinner. I don't shower (until my husband gets home from work). I don't clean. The few times I've had enough energy to do those things, Buzzy starts getting into stuff - climbing cabinets, breaking into latches, spreading mess into every corner. When it was warmer, I took the babies for walks. I do manage to start and sort about 10 loads of laundry (including diapers) a week. But, they never get put away. So, I spend most of my time sitting in the living room, waiting for various therapists to show up. I consider a day a success if I don't look at my watch too much. 

     This week (after almost two months of working on it) Buzzy had his "intake" to get ABA therapy started. Last week, right before we left for my in-laws for Thanksgiving we had an hour long phone interview for ABA. They asked about family history, pregnancy history, the birth, etc. Then I was asked about what therapies he currently was getting, how old he was when he met certain milestones, and what goals we had for therapy. 

     I was thrilled to get a call on the following Monday about setting up the intake. The intake was pretty intense. It was two and half hours long. They basically went over all of the stuff I had talked about during the phone call and they also spent a lot of time observing Buzzy. He performed admirably for them: plugging various cords into electrical sockets, running around like a crazy man, and attempting (my personal favorite) to stick a drawstring from a hoodie into the outlets. (We used to have outlet covers, but Buzzy pulls them out more quickly than I can.) Wouldn't you know, I *can* move pretty quickly when I want to!

     The big thing for him, though, is that he attempted to say everything they threw at him. He wasn't very successful at some of the things, but he was at least making an attempt at making the sounds. I have to remember that over the summer he wasn't doing that at all. He was signing, but nothing much verbal. I guess I am expecting a lot or too much, and I need to keep in mind how far he has come, even within the last week. 

     They think they will be able to have someone come to the home to start services over Christmas break. They are wanting to try 20 hours a week. I am looking forward to getting started with that. I really feel he will make great progress. They also offer (on-site, not at home) speech therapy. My plan is to add speech therapy (for a total of 3 days a week) once the dust settles and we are in some sort of routine with ABA. The other great thing about all of this is when Buzzy turns 3, he won't lose all of his services. He will only lose the one hour (3 times a week) of ST, DV, and OT. And then, he will start Early Childhood Special Education with the school district in August. 

     I also (after some agonizing) decided to pursue getting him an Autism Assistance dog. Buzzy really is a wanderer and I really think having a dog will help me keep an eye on him. There isn't much to say about that, other than that it's crazy expensive, I turned in the application, a friend turned in her recommendation, I waiting on another recommendation, and waiting on his doctor's prescription. Whew. And, even after all that, they may turn us down. I really hope not. After watching Buzzy interact with my in-law's dog, that sealed it for me. 

     That is where everything stands now. There are ancillary things: like all the time I spend scrutinizing Buzzy and trying to see if the new thing he is doing means his autism is getting worse, or if I just need to have a drink (or 3). Like how baby isn't letting us sleep well at night (hello, teething!). Or how I spend more time correcting my older girls' behavior than I do managing Buzzy and the baby. (What has gotten into them lately?!!) But, just the fact that I am seeing some progress in getting Buzzy the therapy he needs does a lot for me.

     I may not need to be locked up just yet.

Sunday, December 2, 2012

Pain and Opposite

     Boy, when you hear this diagnosis and then wrap your head around it, and then suck it up and grow a pair and share it with really find out who your friends are.

     I am part of a couple of groups of moms. I guess I love being a part of due date groups! One I have been a member of for over 13 years. The other group, 3 years. I am also a part of another group, and have known those women for a little over a year. I didn't tell that final group about Buzzy's diagnosis. They are more for talking about the baby. So, I didn't really see the need to share.

     Oh, I wanted to talk about it. I guess talking about it for me is how I work things out. But, I didn't say anything. The first group kind of gets a pass. I did share the news with them and noted a few of them didn't comment, but while it stung a bit, I could see it. Many of those ladies are in a different stage in life. As far as I know, all of them are done having babies and very few of them have special needs kids. So, I could understand not having anything to say. Whose to say I wouldn't have been the same way?

     But, the due date group for Buzzy...I definitely noticed that who commented and who didn't. And maybe that's stupid or petty of me, but I did. And it hurt. If something serious (life-changing) happened to one of their kids - the very children the whole group was created for, I would say something to them. Anything. Not ignore it. So, when it was all said and done, I went and cleaned house on my Facebook. I will admit I was angry when I did it. But, I wouldn't change it. I deleted people that couldn't have bothered to comment on my post.

     I also deleted people that didn't really interact with me on FB. That's the whole reason I am on it: to interact with people. I have a lot of friends, but many of them are former students. I won't ever delete them (they get an automatic pass), because I enjoy keeping up with them. They didn't need to say anything, because they're still kids as far as I'm concerned. But, the people I thought were my friends (even if I never met them)...

     I used to feel like I didn't fit in with Buzzy's due date group. Now I really feel that way. And it won't change unless Buzzy changes drastically. Which kind of sucks, because I like most of the ladies and their kids and like to hear about (most) things going on with them.

     Yet, while I feel some people suck, some really amazing people have stepped forward. A few to commiserate and tell me about their path, a few to offer sympathy (but not in a smarmy way), and one who has given so much of her time to tell me about her son's journey with autism and to offer advice, help, a shoulder to lean on, and even her phone number to call any time. When I sent her a message about Buzzy's autism her first words were to ask how I was doing. She knew. Stacy had been there.

     And while there are times I wonder what the hell I was thinking when I went and had another baby lickety-split after I had Buzzy, I stop and think if I hadn't I would not have met Stacy and I wouldn't be where I am now without her advice. (She happens to be a member of that final due date group.)

     And I wouldn't trade her for anything.

Wednesday, November 28, 2012


Looking back, I guess the signs were all there that something wasn't right with the Buzz.

    I remember a mom in my online mom's group talking about her son at 7 months waving bye. And I thought of Buzzy, and how at over a month older he wasn't even close. I tried to reassure myself that it was because we never really went anywhere or had too many people over, so he just didn't have experience with waving bye.

    At 6 months, I started signing to Buzzy. Every time right before I nursed him, I would sign "milk" and say "nurse, nurse, nurse!" just like I did with my girls. He never seemed to notice that I was signing to him or that anything was about to happen. After a few months of no reaction, I started signing less and less, until I just stopped except for every so often. There was no point to signing to someone who just didn't even seem to see what I was doing.

     By the time Buzzy was a year, I was truly worrying. He had no words and few sounds that he made. His pediatrician did a referral to Early Intervention. The wheels of government programs move slowly, though. He turned 1 in June. In October, he finally was evaluated. He met the criteria for an expressive language delay. He tested at around 7 months, when he was 12 months. There may have been an area where he tested at 6 months. Everything else at that time was on track or even ahead for him. Receptive language was good as were fine and gross motor skills.

     Once I knew he needed speech therapy I started going nuts. I wanted him to be in speech ASAP. However, we needed a spot to open up for him. Forget someone coming to the home - I would have to drive unless I wanted to wait even longer. And that was not an option.

    Finally, after almost 2 months of waiting (and a lot of phone calls on my part) we were able to get him into therapy. I had even tried to find private therapists, but was unsuccessful. At the same time, I was also waiting to get his hearing tested. And waiting. And waiting. I found a private audiologist and took matters into my own hands. We paid out-of-pocket and got his hearing tested.

     Buzzy failed in his right ear in December. But, since he had normal hearing in his left ear that wasn't the reason for his lack of speech. He was re-tested in January and he passed in his right ear. Perhaps he had fluid in December or an extra amount of wax. I had been afraid he might have hearing loss, but now I was back to square one with no explanation.

     Speech therapy continued every other week with little to no progress in his speech. His therapist suggested we increase his therapy to once a week, which I readily agreed with. I continued to do research and started learning about apraxia. It sounded like something he might have, but his therapist insisted no one diagnosed apraxia before 3.

     Then Kylie, Buzzy's SLP went on maternity leave. She was replaced with Amy. Then an opportunity came to have an SLP give services in our home, which I jumped on.

     Chelsie was fantastic. Buzzy began to make progress and was doing so well. Chelsie was great, and I dreaded the end of the summer when we would go back to Amy. I continued to read and learn about apraxia.

    Then, the dark days. We had to go back to driving and back to Amy. I don't know much about speech therapy, but while Buzzy blossomed under Chelsie, he did nothing with Amy. Gone were him learning 2 signs a week. Gone was any kind of progress. It was at this time I learned of the Kaufman Children's Center. And I knew I wanted Buzzy to be seen by Nancy.

    I put in a phone call and arranged to have one of his sessions with Amy recorded. I then sent the video to Nancy and waited to hear from her. I figured the worst she could say was that she couldn't help us. But, she didn't say that. She said she thought they could help him. (She also asked what sort of technique Amy was using and then I snorted and said I'd wondered the same!)

     We made arrangements to have Buzzy do a 4 day intensive speech therapy program at KCC in Michigan in October - almost one year after it was determined he even needed services in the first place. Around this time he reeceived a follow-up evaluation from EI. Now he was even more behind in expressive language. And behind in receptive language. And lagging in fine motor skills. And adaptive and self-help.

     Instead of re-qualifying for just speech, we now had a couple of other areas that needed addressing. And it was at this point that on my bad days, I started to wonder if there was really something more wrong.

     I kept telling myself (and letting others' observations reassure me) that it wasn't autism. It couldn't be autism, because Buzzy made good eye contact. Looking back on that - he made better eye contact when he was younger. As he got older, that was diminishing.

     We were losing him, and we just didn't know it.

Tuesday, November 27, 2012

Here we go!

I really don't know how to start this entry. I keep typing things and then erasing them, because they don't sound right. So, I will just jump in.

I am Candace. I have two daughters from my first marriage who are 12 and 9. After a bitter divorce, it took me 6 years to come to terms with the fact I was done having children and to give away all of baby items I hung onto.

It took me 6 years and 2 months to meet my future husband and to come to terms with expanding my family and going through the baby stages again. Buzzy was born a year and a day after we got married, my first son. Not too much later we also had a daughter, born Valentine’s Day.

Buzzy is (and was) special. My first son, and I had thought I would never experience the joy of raising another baby, let alone a boy. Now that joy is somewhat tempered. My son was diagnosed with autism on November 1st, 2012. Seeing that in black and white still smarts. He also was diagnosed with CAS (Childhood Apraxia of Speech) and SPD (sensory processing disorder) prior to that. Co-morbid conditions. Lucky him.

I will get into all of that some other time. For now, I want to document where my son is right now. He is 2 years and 5 months old. Other moms with kids his age are pondering whether or not they are going to tell their kids about Santa. I am pondering which supplement I am going to get him to take next, or if I should just wait till after his first DAN! appointment.

Buzzy scored an 83 on the ATEC test* I took last week. An 83 is pretty high in terms of percentile (somewhere around 80, if I am remembering). My priority right now is getting him to communicate. At this moment, my son rarely uses functional communication. I have to remember it wasn’t all that long ago that he didn’t even imitate sounds (around this summer) and now he is. So, we have made progress. But, I want more.

*The ATEC is the “Autism Treatment Evaluation Checklist”. It’s a tool used to see if a treatment being done is having any sort of effect. It can be found here:

Buzzy was making progress over the summer with his SLP (speech and language pathologist). She was a new one, and came to our home. He was picking up 2-3 signs a week and even using them every so often. The first time he ever spontaneously signed to me, he handed me Play-Doh and signed that he wanted a ball.

Of course, I made him one. And then he made a sign. I couldn’t tell what it was, so I suggested, “Drink?” Buzzy just stared.

“Water?” No. Same look.

Ah, “thank you”. My son was telling me thank you. It made tears come to my eyes.

Unfortunately, even now, those moments are rare. However, he now will imitate sounds and say words – or word shells and approximations. This makes working with him much easier. And as long as he is contained in his booster seat and strapped in, he works hard for his SLP.

His receptive skills are still lagging, though. He can’t point to or choose a drawing of say, a banana, when there is just that picture. Or when there are two choices. I like to think he understands more than he is letting on, but that’s hard to do when he rarely signs either. I just don’t think Buzzy “gets” language. And that is a huge problem.

When we went to the Kaufman Children’s Center it was suggested that he may have cognitive issues. I think the day I was told that was far worse than the day he was diagnosed with autism. I wanted to find someplace to hide where I could sit and cry for a very long time. Instead I sat in the van while the two babies napped and wished I was at home, not over 600 miles away. The sentence Nancy told me that still haunts me is “even autistic children can do this task”. (She didn’t see him as autistic – and she couldn’t diagnose him with that anyhow.)

I love Buzzy. He seems happy most of the time. But, he is exhausting. And a lot of the time I am exhausted from running after him and his sister. He can’t be trusted alone with her for more than a few seconds. He has no concept of hurt or danger. He tried crawling in the oven today. It doesn’t matter how many times in the past he’s been told it’s hot, he will still open the door. So, if the oven or the stove is on, there has to be someone guarding it.

I have tried to set up the house so he can do the minimum of damage and be as safe as possible. But, it wears on me to have a house that is so disorganized and generally messy.

So, this is where Buzzy is today. He has a short attention span. He is, essentially non-verbal and non-communicative. He loves watching Gangnam Style on my iPhone. (PSY is the only reason I can change diapers without tantrum and tears – his and mine!) He’s not even close to potty trained. He has no sense of danger. He is impulsive. And most of the time I wonder if he even knows what is going on. He receives speech, OT (occupational therapy), and DV (developmental therapy) once a week for about 45 minutes to an hour. I have him on DHA and omega fatty acids (3,6, and 9). He takes a multivitamin, D, probiotics, and is on a GFCF (gluten-free, casein-free) diet.

It has become my life’s mission to help him get as close to NT (neurotypical) as possible. I will do anything; pay any price to reach that goal. Autism is the first thing I think of when I wake up, and it is the last thing I think of when I fall asleep at night. And while I am generally a pessimist, I am an optimist in this regard.

I have to be.