I was sitting here thinking tonight about my boys, and the conversations we have had, and the decisions we have made along the way. One day I hope that my sons will say to me, Mom, you were a really great mom, and if I never accomplish anything else that alone will make my life complete.
Its been a busy 6 months in our lives, with highs and lows. Aidan had a tonic clonic seizure back in November, and had another one last week. Pretty scary, but at least this time I was more prepared for it. We are now waiting for him to see a pediatric neurologist and don’t really know what to expect. He has been forbidden by his doctor to play video games, and I extended that to computers and tv as well just as a precaution. Its really hard for a kid these days to forgo this without feeling like its a punishment, but thankfully he is also an avid reader and has spent the time rereading the Harry Potter series.
Rowan went in today to do an initial intake interview for a long term study on a special enzyme called “LUMINENZ-AT”. They took a stool sample and will be checking to see if his body is not producing enough of a certain enzyme that breaks down proteins to create amino acids that create neurotransmitters. Forgive me if I didnt get that exactly right, but the general idea is it could help him break down food better to improve the absorption of it and thereby increase brain functioning. If is deficient in the enzyme he will be admitted to the study, which could be upto 3 years long. They will do evaluations and testing, which I hope can give us more tools to help Rowan and understand him better. He was pretty unimpressed by the whole thing, but enjoyed the free M&Ms and finally was won over by giftcards to his favorite store … Target. He wanted to go straight there, but I convinced him tomorrow would be soon enough.
In other news we finally closed on our first home purchase and as ecstatic as I am, my feelings are still mixed. After the initial elation, comes the moving process, which is a bit ill timed considering I am taking summer classes, the boys are in their last week of school and John is working the whole time (as am I, but less so). So these next few weeks will be rough, but I hope things will settle back into a routine by mid July at the latest. Buying a house is thrilling, exciting and scary at the same time, because suddenly we have this big bill we didn’t have before, and this huge long term commitment. I know it was the right thing for us to do, and I am happy, but I still haven’t adjusted yet. We are so tempted to go out and buy all this stuff for the new house, but I’m trying to rein us in because we just plopped a big sum down and need to be caution with our spending until we acclimate to the new budget.
I don’t think the boys have really mentally transitioned to thinking of the new house as home yet, partially because we haven’t gotten the furniture over there yet. John still asks me the address. The first thing we did after we got keys was go swimming in the pool. Day 2 consisted of swimming and moving a few more things over, and day 3 mostly cleaning and no swimming (much to the kids disappointment). Upon leaving Rowan decided we were not getting a new house and became very upset saying “We’re not getting a new house”. I don’t think it will be real to him until we are all moved in and I can honestly say we will all rest easier when we are settled in.
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.
9- What is the best part?
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.
10- 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.
11- 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.
12- 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.
13- 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.
14- 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 thelittleelephantintheroom.wordpress.com
X-posted in superbabies.blogspot.com