13 or so years ago I use to blog regularly. Sometime I don’t even know what I spend my time doing these days, that I can’t find time to write.

My boys are not babies anymore. This makes me both very sad and very proud. Rowan is nearing me in height and passed me in the show department last year. He is a proud middle schooler, and as much as he has changed, so little has really changed in the last few years.

At home we have very few meltdown, but at school they are still pretty regular. Thankfully the teachers are pretty good at managing them, I’ve only had to go get him and handful of times this year.  As far as I know, he has never faced any bullying, but his social skills are still severely lacking. I know that he wants to meet people, but he just can’t seem to get how to hold a conversation. He will ask “What is your name?” and leaves it at that. No exchange of information, or further dialog. I want to get him in some social skill training classes, I think the would really help him.

He is also hitting puberty, along with most boys his age, and we are learning how to deal with modesty and age appropriate topics. Heaven help me, I wasn’t quite read for this. I still think of him as 7 or 8, and at 11 going on 12, the teen years are approaching rapidly.

That’s it, all I got for now.

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Rowan has been distant this last week, especially this weekend. Since i started my new job about 2 months ago, I have had less time to spend with the family, and have gotten home much later than before. I can really see the difference it has made with him. He is more effected by this and everything else just adds on to it. Like having my 2 nephews over. I know that he enjoys them for short periods of time, occasionally. But he gets a little jealous of the baby for taking up the adults time & for Joel for taking Aidan’s attention (I cant totally blame Aidan for this …. to him its great to get an active participant who understands you to play with you … the play he has with Rowan just isn’t the same or as stimulating) Lately they have been here between 3-5 days a week, all day long. Then add being out of school (his ss ppcd class has a 2 week break before the regular school year starts back up), and out of therapy for the last 2 weeks. Life is rough for him right now,

Yesterday we had these random weird crying jags (melt downs?) he would be standing there and out of no where he was inconsolable. Nothing set it off, just boom tears & howls. In addition to that he was stimming and non-responsive to direction and his name. Stuff that we have mostly out behind us, but flares back up when he has a rough patch. I am soo ready for school to start back!!

Today was much better. I had my  1st legible phone conversation with him. He said Hi, bye, Mommy, and answered my question of what he wanted for dinner (what else … Pizza) yummy yummy.

This is a video by PhilCommander2 on YouTube on negative word association and autism. He explains way better than I have ever been able to why we have to be careful about the words we choose to use because they set a pattern in the way we think of people.

I have mentioned this frequently when talking to people about my son. I’ve told them that he is not “broken”, just different, so don’t treat him that way. Just they other day I ran into an old friend who I had found out he was an ABA therapist. We were talking about ABA and he asked why I was so interested in it. Well the last time we had talked was before I had children so I told him that my youngest son was autistic. His first response was “I’m sorry”. Just like that … immediately he was offering condolences as if I had said he died in a tragic accident or something. I looked right at him and said don’t be, I’m not.

Yes, my son has difficulties, but we all have difficulties. It just goes back to one more time were he is viewed as less, and someone to pity. I wish my son could really talk to me. I know one day he will and I will ask him why he laughs and why what he loves what he loves. I long for the day so I can better understand him. But no matter what I wan him to know he is not broken, damaged, disabled, flawed or impaired.

Jan 21 2008

It was a Bach support group night tonight. Aidan still maintains that it is his favorite place to go, despite the fact he never received therapy there, only Rowan. Maybe that is why, a slight bit of jealousy? Not overly but nonetheless its there. It was mainly an open discuss night. I wasn’t feeling to extroverted or forceful tonight so I didn’t say too much. It’s funny how I can be extremely extroverted some time but not others. We had a list of questions we were working off, but we didn’t get very far down them. I though it would be a good starting point for a blog entry.

1) When did you realize something was wrong?

Maybe I am getting to hung up on semantics but I still don’t think something it “wrong”, different yes, wrong yes. But to answer the question and be really honest with myself, I didn’t realize it till it was point blank pointed out to me by my sister-in-law’s mother-in-law (who is a special needs teacher) right before he turned 2. It took a while to sink in and actually get services started. In hindsight I see where I should have seen it coming, but I guess I really didn’t. First of all no parent wants to look for something to be wrong with their child, second of all, when you have 2 children you worry about comparing them. So I was so busy telling myself that kids are different and are suppose to be different that I forgot that different is not always good, sometime its warning signs.

2) What was your reaction when your child was finally diagnosed?

Well that’s easy to answer because we just finally got that. A little bit of relief to finally have it in writing, but mostly residual frustration and confusion. Where do we go from here, there is not road map and no expert but us to show the way.

3)What resources did you find most helpful? Least helpful?

There has been a lot of websites, blogs and forums that have been helpful on many levels, but there is also a lot of negativity and misinformation, bias opinion touted as fact out there to be wary of as vulnerable newly diagnosed parent. However outside of anything web based the best resources I have found by far has been BACH and other parents. Nothing else comes close to a living breathing person who has been there and is positive. BACH has been a lifeline. I can always relate and touch base there and I know that no matter how old Rowan gets they will always support me, even if he isn’t receiving treatment from them.

4) How has your life changed?

In reality, not much. Emotionally I have a lot of guilty (although I know its unrealistic) feelings about not realizing it sooner, of expecting too much of Aidan, not as much from Rowan, feeling like I never do enough for them all. But really, I think I would have that anyways, some portion of that is just my personality. On the outside, we are aware of certain things now so we mold our life subtly around those things. For example, Rowan has sensory issues so we do a lot of heavy rough play, and work on his little issues in our everyday life. Potty training is more difficult, manners less stressed. Ultimately our life goals and family goals are the same, the things we do along the way just may be different.

5) How has your family’s life changed?

As for immediate family, it’s hard to say since we only had 16 months with Aidan before Rowan came along. Your life moves and changes as you go so subtly, you don’t realize until later that it has changed. I could speculate how we would have been had we had 2 nt kids, but its just speculation. It took a little doing to convince John that there was anything there, and way more to convince my grandmother. But now it’s just a part of our life. As for the rest of the extended family, most everyone is understanding and somewhat sympathetic, I guess, if that’s the right word for it. I’m not sure they all really understand what autism is, but they adore Rowan and relate well with him.

6) How has your marriage changed?

I guess I am just really fortunate, but I don’t think my marriage has changed at all. Once John figured what I was saying has some validity to it he has been just as active and supportive as I am. I’ve heard of horror stories of other families where that’s not the case and I read somewhere that the divorcé rate in families with autistic children is something ridiculous like 50%.

7) What are your fears? Hopes? Dreams?

I try not to dwell too much on the further, and just live it one day at a time. Making little goal and meeting those before setting the next. But my real fears are things like, what if Rowan is never able to hold a conversation? How will he be able to be independent? Will his brother always have to be his guide and protector? Will Aidan resent Rowan and us for the way things are? I fear not doing enough for both of them, or doing things wrong. I hope that Rowan will learn to fully communicate and we can have conversations about what he thinks and feel. I hope that he will be able to understand how others feel. I hope he can be fully independent and successful at something he cares about passionately, like music or whatever it maybe.. Regardless to whether it is monetarily lucrative. I hope to have another child, no matter whether it is a girl or a boy, nt or not. I dream of having both my boys in college doing fabulously well studying something they have a real lust for.

8) What is the hardest part of having a child who is diagnosed with autism?

A lack of answers and facts. So much of autism is guess work and trial and error. If you have an infection they give you antibiotics, if you break an arm, they give you a cast. Sometimes it seems with autism they give you a smile, a paper and pat on your ass as you leave. All thing things he does, the symptoms, sure they are challenging at times, but that doesn’t bother me so much. I am only terrified of that I should know something I don’t that could help him.

Rowan is his own person, totally genuine and unpretentious. I don’t think that will ever change and I sure hope to god it doesn’t! He has always been a generally happy little guy, content to himself and totally engrossed in what ever he is doing. That ability to focus on what he likes and is doing in the moment, if channeled correctly could serve him well later in life. He sees things differently and I wish I could see from his perspective.

9) If you had it to do over what would you do differently?

Shoulda, coulda, woulda’s wont get you far, but to pass on to others … I would have listened to my gut and done something sooner. I would have been more informed on childhood development so I would have recognized he wasn’t where he should have been and started asking questions. I let too much time pass dragging my feet thinking I was paranoid and being a hypochondriac mother. I would have gotten a medical diagnosis sooner too, because it opens doors that are harder to get in without that slip of paper. I would have worked harder to prompt him to do for himself, to ask for things instead of just trying to anticipate his needs and wishes.

10) What about your relationship with friends and parents, and how have they changed?

My parents (mom & dad) I don’t think they get it, but since neither is around much it doesn’t really matter. My grandmother is protective and supportive, but often sees things that aren’t really there, passing off things like oh he’s just fine on this and that, when he’s not. John’s dad is supportive, but doesn’t really understand very much. But relationships between them and us haven’t really changed. As for friends for the most part things go on as they did before. Sometimes people will say things like, I don’t know how you do it I could handle that. I hate it when people are all feeling sorry for us like we have a sick child or something. Our life is really not that hard or different that any other family with 2 kids. Our biggest problems stem from things that have nothing whatsoever to do with autism. The only thing I cab say about our relationship with our friends that has changed is it’s not as easy to talk to them about the kids. Even the ones that have kids just don’t understand the way a parent who has an autistic or at least a special needs child does. The last thing I want is sympathy, the way I see it there is nothing to feel sorry for us about. It would be like saying I’m sorry your son was born, and I am not sorry he was born or that he is autistic. Its part of who he is, it is not who he is, and it makes him different, not broken or sick. He will live a happy and full life, we just don’t know or understand the details yet.

11) Where do you go for support? Who provides the most support?

Again, BACH has been the greatest support by far and all the people there from OTs, volunteers etc., Mendy, Dana, Monica, Dee … everyone has been wonderful. Since Rowan moved to his new school the support there has been great too. They do a wonderful job keeping us informed and involved. But closer to home, my grandmother is invaluable in her encouragement and soothing presence with both the boys and us.

12) How do you feel about your child’s current level of functioning?

He is not where he should be, but I fear I have handicapped him by allowing him to lean on us when he could do many things with more prompting and support. I have allowed him to be babied and I have to stop. Right now he still is not spontaneously communicating very much and is not potty trained, those are things I want to work with him on. We are working on telling people with a prompt his name and age. I also what to work more on his self help skills like dressing, brushing teeth, using utensils, blowing his nose.

13) Describe a vivid memory or experience with your child that other parents of children with autism could relate to.

Where to begin there are so many. As a baby Rowan hated the car seat so much that he screamed and cried himself into hysterics each and every time we put him into it, well past the age a baby should out grow it … like 6+ months. We got use to it; there was little we could do about it. But of course we had a nosy neighbor who made it her business to question me about him. I’ll never forget her accusing tone when she asked me if he was OK, really OK? As if I had done something to him to cause the cries every time we walked to the car.

Also as a baby he hated baths, as some do when they are infants. But he didn’t out grow it; it only seemed to get worse as he got older. Feeling like a bad mom I would let more and more time pass between baths because I just couldn’t take the hysterics that were involved in trying to clean him. Even at 1-½ years old it took literally one person to hold him somewhat still and anther to try to clean him as quickly as possible. It was awful, the tears, sobs, heavy breathing and the look of desperation, betrayal, terror as if we were actually hurting him. I’ll never forget that as long as I live. To work him through it we tried at different times different things. Once I took him with both of us in bathing suits to sit in the tub with only a few inches of water. We lasted maybe 15 minutes before I gave up because he was so upset. We had a couple of moments that were OK, but it he wasn’t ready yet. Both John and I tried that a few times, till one day John took him and stayed in the bath for like an hour or more till Rowan really began to enjoy it. He was around 18 months old and that was our first really big break through, and our biggest to this day. Back them we didn’t even have a clue he was autistic. Now he loves water and baths, though we have had water issues we still had to work through, like water in the face and pools. He still has some issues regarding water, but nothing we can’t handle with time.

In essence Rowan being autistic doesn’t really change much for us, any more than my being a vegetarian does. He is still the same boy he was before we had a diagnosis, and it just fits into our life. I’m not trying to downplay its significance, but I feel like it’s a handicap only if you let it and are too negative about it. Just like anything you can’t let it eat you alive. I try to let him and everyone around him know that he is normal, different in some ways, but normal. I mean what the hell is normal? Its what ever you think it is, so is he. I want him to know that he has to learn some things that are hard for him, but there will always be things that are hard no matter who you are.

x-posted in superbabies.blogspot.com

x-posted in ididntstartouttired.wordpress.com

I haven’t been very diligent on writing here lately. I always kick myself and feel let down when I don’t do what I intend to do, despite it being as choice I made. I’ve been doing more private journaling, nothing really will ever top a good pen and a leather bound journal.

I last wrote about the start of school, and now we are at winter break. So much has happened, I guess I need to go back to Sept and start from there. Rowan was going to school outside our zoned school because last year when he turned 3 they were over full. The school he when to was alright, but it was far away and I felt a difficulty with the department there in regards to communication. At any rate I called the Special Services department for the school district over the summer to see if I could get him back to his zoned school for this year. The answer was that they were still over booked but would let me know if they got any openings.

Around 1 month into the school year the head of special programs called me. Seems that they had an opening, but I was worried what effect it would have since we were just getting our routine down. There were a lot of pros & cons, transition after school ad started, all new teachers school, kids. My older son was in preK there and we weren’t sure if it would be a bad or good thing for either of them, since ppcd does some inclusion w/ preK. I also knew that the teacher was leaving after this year, which means a new teacher next year. The other fear was if we turned down the spot in order to take it at the beginning of next year , that there might not be an opening then. After much deliberating and soul searching (it was a bigger decision than you would think) we decided in the long term it was the best decision even if the first few weeks were rocky.

Low and behold he walked in there on a Monday just like he had walked out of there Friday . The transition that brought me to tear just thinking about it was scary perfect. Mean while ever since Rowan started school at 3 we had had to keep him home or pick him up a lot because of illness. He has allergies, just seasonal I think but they effect his eyes and the school are always afraid of pinkeye so they send him home. Incidentally he has never actually had pinkeye, but we always see the doctor to be sure. Usually it an antibiotic for the ear infection, and antihistamines till he is better. Since he hate medication if is very difficult to give to him. However we this time we talked to the doctor about an allergy medication and ended up putting him on claritan. I didn’t tell teachers when exactly he started it, but we began to see from there notes increased difficulty following routine, and meltdowns were more frequent. At home I saw a drop in spontaneous communication and an increase in echoing. I have also seen more difficult in making choices (although its always been difficult), and increase in stimming, and less responsive to his name. I didn’t put it all together- immediately.

I first called for a parent teacher meeting will both regular & the speech teacher present in preparation for upcoming annual ARD and our evaluation for diagnosis (we are currently working with at a medical diagnosis.) In talking with the teachers we noticed a correlation between the time he began the allergy medication and his seemingly regressive behavior.

Well I talk to his pediatrician and we have changed the medication, but currently I have stopped all of it just to see if he really needs to be on a daily. So far allergy wise he hasn’t actually gotten sick. A little minor sneezing, tiny bit of runny nose but nothing like before during their height of fall. Unfortunately though I haven’t seen any decrease in the regressive behaviors either.

Back to the evaluation, we have made it past 2 rounds of hearing test (1st of which was a real trial and a story all its own) and the round one with a interview with the pediatric physiologist (which wasn’t what we wanted, I want him seen by a developmental pediatrician). We are scheduled to go back for a eval Jan 3rd. More to write but I am done for now.

So the day has finally come that both of my babies, oops I mean, big boys are in honest to god real school. Of course I approach this with a bit of mixed feelings. Momentarily wishing that they were both still my cuddly babies, and part of me so proud of how mature and grown up they are.

Rowan is beginning his 2nd year of PPCD at his old school, and Aidan is starting PreK at his new school by our house. Now that they are both in they same ISD, I can begin to think about volunteering and PTA stuff. I hope that this year is a good one where they make lots of friends and develop, or I should say retain a love school and learning. I’m not worried about them making a good impression, Rowan’s teachers already know and care for him, and Aidan is as always irresistible.

We took a few pictures, but they will have to wait till we have they developed since our last digital camera died on St Patty’s day this year. I decided to take a 1/2 day off today so I could be with them on their 1st day of school. So now I am just waiting for 11 when they get out of school to pick them up.

Now our days will work like this … 6.30 wake up, 6.45 wake kids, 6.50 breakfast, 7 dress, 7.15 leave the house, 7.30 drop Aidan off, 7.45 drop Rowan off, by sometime before 9 Mamma will drop me off. Then 10.45 pick up Aidan, 11 pick up Rowan, go home eat lunch, 4 leave to pick me up at work, 5 pick me up, 6.30 start dinner, eat by 7, play till 8, 8.15 bath time, 8.30-8.45 story & bed time. That is the most routine I have had in years!

Xposted at  Superbabies

Since I had a c-section we were kept a couple of days longer that a typical deliver, but the plus side to this was that I was able to get the hang of breast feeding with the aid of a lactation consultant and nipple shields. As a result I actually nursed Rowan for 2/3 weeks, as opposed to one with Aidan. But ultimately my milk did not come in fast enough to satisfy his appetite and we began supplementing. He got the benefit of the colostrum, but ended up with nipple confusion and preferred the bottle because it was easier to nurse. After only a couple of months on regular formula we switched to soy because he had so much gas and we figured that was why he was colicky. It didn’t surprise us too much, Aidan had had the same problem. After the switch our house was much more peaceful.

I can’t say with a certainty just when we began to notice something was different about him. We expected it, we had prepared our selves to accept each of our children as special and unique beings. All the advice I had been given about raising multiple children said that they are all different, don’t compare them, and accept them for how god made them, and most of all … what ever worked for the first won’t work on the next.

So we spent much of the first year marveling in how Aidan & Rowan were so very night and day. I attributed everything to personality. Even as a small infant Rowan hated to be swaddled, or cuddle or be held for that matter (although Aidan had), but it didn’t strike me as a cause for concern, I just though it was different. Because Aidan had loved it as most babies do, and we swaddled him till he couldn’t stay swaddled in those little receiving blankets.

Rowan slept mostly in his swing or in a vibrating bouncer. They seemed to give him a security and comfort I couldn’t. The crib and bassinet for the most part when unused, at least till he out grew the bouncer and we were forced to move him to a safer place to sleep.

Where I left off, we had just been told we would need a c-section and I was being wheeled down to the OR.

I remember getting a local for the lower half of my body, and an IV of something else. I’m still not sure if I was suppose to have been put totally under, but I was. I remember feeling hot & cold, tingly with icy veins. The last thing I could recall was the white sheet going up and some tugging sensations at my stomach. John was at my side and they were asking me if I could feel anything and I said yes.

When I awoke there was 2 figures in masks and scrubs and I didn’t know either of them. I was so afraid something had gone wrong and asked “wheres my baby, wheres my husband?” I had no idea how much time had passed. But everything was fine, Rowan was in the nursery being bathed and weighed, and John was with him photographing and recording everything.

When I first held him I could see the mark left on his forehead from where he had been stuck against my hipbone. Apparently his head was cocked sideways as he tried to enter the birth-canal. He was a somber beautiful 9lbs 4.4 oz baby boy.

To begin this story I have to begin before Rowan was born, before he was conceived, back for the short time that we were 3.

In March of 2003 I received a job offer to be the resident manager of a 2 month old, ~300 unit 2 story storage facility in Texas City. this came a time I was fed up with where I was, and i had a little experience in the storage industry, having been an assistant manager for a while. While the location was far from friends and family, the pay and proposed benefits seemed too good to pass up. Aidan was a healthy, happy, advanced 6 month old, and John was willing to make the commute back to Clear Lake for his job. My grandmother was a blessing and agreed to drive down to us to continue to care for Aidan while we both worked. After Aidan was born I tried the Ortho patch for birth control, but I have always had problems with birth control, and ended up discontinuing it after a few months because it made me so ill. I didn’t plan to get pregnant, but I had not been taking anything to prevent it, so it was a big shock, and we were thrilled, if a little scared at the prospect of two in diapers.

I was not one of those women who thrived on being pregnant. I didn’t glow, I just grew. Considering what some women go though with morning sickness and all, you could say I had an easy pregnancy. I never had a bout of morning sickness with either child, and I always figured that was why I put on so much weight. Even so, this second pregnancy was not like the first, I felt more run down, and dental problems, and lots of sinus infections. I was bloated, and Rowan seemed to res funny in my stomach just hitting nerves that left me with this horrible numb tingled in my hands and aches in my hips.

Just as with Aidan, my due date came and when with no end in sight. At first the doctor did not want to induce because she believed he was too small, boy was she wrong. A week went by and the night before I was due to go in and scheduled to be induced, I went in to labor. January 19th at 1am we made the trek down to Clear Lake. I labored all night and much of the morning. I was having back labor, which means he was laying with his spine against my spine, which isn’t really dangerous, but it is painful. By the time it was time to do the pushing my first round of drugs had worn off and the second had not yet kicked in. Rowan it seemed to be stuck, unable to get his head down past my hips into the birth canal. The monitors started showing an erratic heart beat and we began to think that the cord might be wrapped around his neck. I was so tired, drugged and out of it that much of this was a foggy blur. They decided to do an emergency c-section.

To be continued . . .

Elep Greater Houston & Brazoria County Autism Related Events

The story behind the blog title.

3 reasons: 1) For me, it seems that we always knew something was different with my son, and so did everyone else. But it was like the proverbial elephant in the room that no one talked about, and no one gave it a name, gave it a voice. 2) It also brings to mind the blind men and the elephant, each who described it in very different ways. 3) The last reason I chose this name is that for some reason, even before he was born I identified him as my cute little elephant, and having nothing to do with size, it still fits him today.
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