Survey says...Delayed!

I have been filling out an online version of the Ages and Stages Questionnaire every once in a while for about a year now. I do it to check what G is supposed to be doing from month to month. It's less stressful than some of the other tests and it is designed to be completed by parents. G really loves doing the items on the tests. It's a fun little bit of playtime for both of us.

I typically exclude the gross motor section because I know it would show a delay. I was feeling pretty confident this past time though, so I filled it out. I mean, he was discharged wasn't he? They said he was age-appropriate at about 18 months. So, I got to that section and started filling it out. At the first question/statement, I knew we were in trouble.

My child runs easily, stopping and starting smoothly, changing direction and rarely falling. Yes, Sometimes, No.

Ummmm...my child doesn't run at all? He also does not go up or down stairs on his feet while holding the railing. He does not climb onto the couch. There are toddlers his age who do this stuff? I was not surprised when I got the survey back and it said that perhaps I should call early intervention.

I find myself racking my brain trying to remember what M could do and when. She was certainly no star, but I think she was running by now. A slow run, to be sure, but a run all the same. But he climbing on the couch thing was very late for her too. Our ped expressed some astonishment that she could speak in multi-word sentences but could not get on the couch.

It's amazing to me that I am going to write this, but I am not worried. To paraphrase one of my friends, "He walks, he talks, he's fine." We'll see how I feel at the end of the summer, but for now I am not calling early intervention.

What if Mama isn't ready?

M has two choices for preschool next year. She can go 4 times a week for two and a half hours, or she can go 5 days a week from 9 am until 2 pm. I wish there were some sort of middle ground. One option seems like it's not quite enough and the other seems to be only minutes shorter than a kindergarten day.

I don't know what to do here--she seems to be excited about the idea of going to school every day and REALLY excited about having lunch with her friends. But I confess that I feel unready for her to be in school all day. She will be in school all day, five days a week for years. Why start earlier than necessary? Why miss out on those impromptu trips to the zoo? I tell myself all of this and stand firm on my decision on the four-day-a-week program.

Then that little competitive voice starts whispering to me about kindergarten readiness, about all the other mothers who sent their four year olds to a longer program. I don't like that voice, but it's there all the same. It's the same one that makes me want to call the other mothers in M's class and see who is writing his or her name, who can identify the sounds that letters make. I confess that I have seriously considered finding a more academic school for her.

I just don't know what to do in this case. I have two weeks to decide and it will be difficult to change after that. It just feels so final.

A Hallmark moment, brought to you by McDonald's

Scene: A quiet afternoon in the family room

G: (rests head on his mom's knee) I luv ew, Mama.

VC: (completely choked up and thrilled) I love you too, G.

G: I luv Papa

VC: Ohhh...that's nice.

G: (bats eyes at me) I luv...chicken nuggets.

Well, at least we rated fractionally higher than a fast food item.

New direction

I feel a little bit lost now that G will be out of therapy. What will I write about now that he is getting kicked out?

This blog had been going in an angry direction, fueled by the speculation of a few online denizens that G has never had any issues, that they were all figments of my imagination and anxiety. I still feel very strongly that I was mistreated and it still hurts. Yes, G is doing wonderfully, but there are times when F and I lie quietly in the dark and wonder about what his quirks mean. Why does a simple bath make him scream like a banshee? Why does he bonk his head repeatedly on things (mostly me)? But I am done worrying about people who have no place in my real life, who will never know my child.

I have enjoyed the few commenters on this blog and I hope that my past posts have not driven them away or convinced them I was truly crazy.

So, if anger and therapy are out, what to discuss? Books? Movies? I think that I will just strive to be honest and interesting about my life and my family. And try to do it more often...

Getting kicked out

Well, after a year of work, worry and fervent wishes, our hopes are about to come true. G is about to get kicked out of the local infants and toddlers program. His progress over the past few months has been astounding and I just don't feel that it's right to take therapists away from other clients who have greater needs.

The OT did the Mullen scales with him and he scored at least age-appropriate on almost everything. It was great to watch, though a little nerve-wracking. We have our last session in a few weeks. We are going to work on spoon use, something that gives him a lot of trouble but not enough to justify therapy. I hope she gives me some good hints I can use.

The PT did some testing with him and he is just about age-appropriate in gross motor. She did say that she thought his walk still looked pretty immature and that we should keep watching it. I think it will improve now that he actually seems to like being in motion.

It's amazing to me that at 13 months everyone was really panicking because G was not mobile in any way. It really seemed that we were looking at a long-term issue. In 5 months he has gone from pretty delayed to pretty much age-appropriate. I can't say right now whether he will eventually need more therapy--I can't say the same about M either. Writing, reading or riding a bike may prove to be very challenging for both of them--or neither of them. Right now it feels like we are in a pretty good place.

I am not sure what to get G's therapists as parting gifts. They have been such a huge help and source of encouragement. If anyone in my tiny readership has ideas, bring 'em on!!

The Curse of 100blessings

It was bound to happen. I have my first internet stalker/harasser. She is a rabid anti-vaxer who took offense at something I said about 35 posts ago. Since that time, she has made it her mission in life to mock me, call me hurtful and apparently, monitor my posts on multiple boards. I am getting concerned that she might show up on my driveway one of these days. I angered her further this week by giving my opinion on Jenny McCarthy. According to her, only a mother of a child actually diagnosed with autism can have an opinion on vaccines.

Her whole point seems to be that her child is one of the most severe and therefore, she can monitor who can go on what boards and ask what questions. It's pretty amazing that she can appoint herself judge, jury and executioner so easily. At the end of her last diatribe, she said that she wouldn't go on a prematurity board as the mother of a 36 weeker. Well, what if that 36 weeker had problems related to prematurity? It can and does happen. I have a good friend with a former 28 weeker. She has had few of the expected problems over the years--does that make her ineligible too? The competition for the worst-of-the-worst is disgusting and this woman is heavily invested in it.

I have definitely decided that the asd board is just not for me (or G for that matter). The atmosphere there is just bizarre, bordering on abusive. Now, off to change my screen name for every single place I have ever posted, just to make sure.

Thanks for the "support"

To all the lovely, kind, supportive women on the Babycenter asd board:

I am not sure where you got the idea that my son has always been typically developing or that my question was posted to "rub salt in your wounds". He has received therapy almost since birth, something his doctors are in agreement that he needs. We have had some spectacular developmental gains over the past month or so and that has led me to wonder if they indeed cancel out some of his past issues.

G was extremely hyperreactive after birth and would scream at unbelievable decibels with each diaper change. He had poor eye contact at 8-10 weeks and terrible tracking skills. They were bad enough that the ped asked us to see a pediatric opthalmologist to make sure G's vision was normal. The first time the neuro saw him he was really worried by how blank and expressionless G's face was. He got us set up for an MRI and EEG as soon as humanly possible. My child's pediatrician called me in tears after her phone conference with him, thinking they were going to find something wrong. We were surprised and grateful to get clean labs and a normal MRI.

After the tests, the ped. was worried enough during one of his well-baby visits to call in a favor and get him seen by the developmental pediatrician the following day. She described him as delayed and wanted us to get a lot more therapy.

I got the Floortime book to try to improve his issues on my own, whatever was causing them. I worked daily with him, rocking him on the porch swing for hours while singing silly songs to try to gain eye contact. Little by little, his capacity improved. However, when he looked at us, it was more likely to give us a glare. He was late to both smile and laugh and both strangers and relatives alike commented on how serious he was.

During the period between 2 and 8 months, G's head circumference percentile went from the 60th to well over the 100th. That's fast, ladies and gents. Rapid head growth is a fairly well-established phenomenon in autism, and we were understandably worried. Both my husband and I have big heads though, so we hoped to write it off as genetics. We still don't know whether the head growth is an issue so the docs will continue to monitor it.

While I worked on the eye contact and object tracking, the EI team tackled his newly diagnosed hypotonia. His reflexes were bad to non-existent in some areas. At 8 months, if he got knocked over while sitting, he just fell on his head. All of the "catching" reflexes are still not fully developed at 17 mos. This is also a "soft sign" for asd. His gross motor skills were delayed. He finally crawled at 13.5 months after almost a year of therapy. Because he did not move for so long and his endurance was so poor, we discussed additional testing and muscle biopsies. We have opted against both at this point. He has just started walking within the last two weeks.

He talked on time, yes, but had a few dozen words before it ever occurred to him to say "Mama." He pointed on time, but dropped it for weeks. In their notes, the therapists all say they were unable to elicit a point and wanted to monitor that situation. Thankfully, he started up again. He was late for both waving and peek-a-boo, but once he did it, he did it. He has a start-and-stop history with milestones that I have really not bothered to post on here.

The past few months have held an explosive amount of progress for G. We are thrilled about it, but not sure whether his rocky past will have any impact on further development. With all of the new positives have come some quirky little things. Red flags? I doubt it, but with every thing else going on they are worth noticing. He has gotten more sensitive to sensory stimuli. The private PT had to take away a Wiggles car because he was so afraid of it. He will still go to any length to avoid touching grass. He flat out refused to touch a Koosh ball when the OT held it out to him. He still struggles with some fine motor items--after months of daily work the spoon still seems to be a mystery to him.

Yes, I was terribly depressed after my pregnancy but it's become a chicken-and-the-egg kind of thing. Was I depressed because of hormones or because my baby was not typically developing? Either way, my earliest posts on this board were no doubt hysterical and for that I apologize. I am sorry that I offended so many people with this post. But I think most of the offense was because of Jenny M. anyway. I have every right to have an opinion on her, diagnosis or not. And hurtful is not defined as "an opinion which differs from mine."

I enjoy my son, I am thankful each and every day for him--no worries there. I do not present him as a prodigy, but instead as a baby who has improved much faster than expectations. Do I think my son has classic autism? No. Do I think he has enough quirky traits to be monitored? Yes. Do I think his rocky history might predispose him to regression? I am not sure. I think the most reasonable answer is that his low tone has affected a lot of things but not his speech. As it has improved, he has improved. Does my questioning still make me the crazy lady?

Believe me, IN, I am not the skinny girl with the yogurt, LOL.

And that's all she wrote (and ever will)

The liars among us and how to combat them

There is a terrifying series of posts on my favorite "support" board today. A frantic mother posted that her sons, who were just diagnosed with asd, were not going to be allowed in preschool unless they had been fully vaccinated. She wanted to know how to get an exemption.

Well, all of the usual suspects jumped on board with their advice about claiming a religious exemption. One particularly helpful woman posted a long letter filled with drivel and supposedly pertinent Bible passages to illustrate the point. They were all just aghast at the preschool and the state in general for requiring such things. The mother who originated the post copied the sample letter, substituted the names of her sons ans submitted it to the school. Hours later, she ecstatically posted that her kids were in school without their vaccinations--it was so much easier than she thought it would be. Oh, there is a place in heaven for you, true believer!

My tongue is getting bloody from biting it so much when I read the messages in that forum. I want to scream at these people, to make them realize that what they do puts my children at risk and sets critical thinking back by about 100 years. The ignorance and stupidity they post seems to spread like a virus, making the site actually dangerous for newcomers to read. When I posted once that G had a large head, someone I'll call Aluminum Woman responded that heavy metal poisoning was known to cause swelling of the head. I'll tell you what causes swelling--banging your head in frustration at having to deal with such ignorant people.

I wonder why I hesitate to say something. What is the worst thing that could happen? I guess I could get kicked off the site and that's not really something I care much about. I do frequent other boards on the site, but not so often that they make a difference in my life.

Size matters

Yesterday I took the kids to the big playground, one of their favorite places on earth. G loves it because it has the highest proportion of fake steering wheels of any playground in our area. He starts chanting, "Drive, drive, drive!" every time we approach. Then once he has the wheel in his hands, he makes all kinds of appropriate vroooming noises. I don't know where he is going, but he is going there fast. M, daredevil that she is, heads immediately for the highest slide out of my line of vision. It's our system, and it works.

As soon as we arrived, both kids took their appointed spots and the fun began. Things were going so well until I opened my big mouth. Another little boy approached the steering wheel while G was playing. He looked to be about the same height as G with roughly the same skill set. Well, except for the fact that he was actually walking unaided. I once again made the mistake of assuming they were the same age. The conversation went like this:

VC: They look to be about the same age. And the same white-blond, curly hair too!

Other Mother: Well, they might not be the same age. My son is really, really big for his age.

VC: (eagerly) Yes, mine too. How old is he?

Other Mother: Well, he's only 23 months old.

(she pauses for me to exclaim about how her son certainly is very big)

Other Mother: How old is he?

VC: (kind of embarrassed now to respond) Uh, well...he will be 16 months old tomorrow.

Other Mother: (eyes widen in surprise) Oh!

This encounter was my fault. I have been right about one baby's age in the past year or so and I should know better than to ask. But I have had many encounters that I didn't initiate, that were brought on by someone's innocent question.

The worst example was the Japanese family at the mall play area. The mother asked me how old G was. I said that he was eleven months old and she actually ran over to her other relatives to tell them. They all came over to see the giant baby for themselves. They spent several minutes looking at him and chattering excitedly in Japanese with an occasional nod to me.

Nobody means anything by it. They have no idea how old he is when they ask and most of them go away feeling better about why he is not walking. He is admittedly one of the biggest kids around and people cannot help but be a little curious. But I have started to get a complex about it. I wonder anew about overgrowth syndromes or other issues that may be making my little guy so big. Most of them have been ruled out, but as is always the case with me, I still worry.

If only I could be sure that we were going to end up with the linebacker and not the tall guy with the cane and braces.