I’ve been pretty lax in documenting Gabe’s milestones and they have been slowly but surely coming. This morning, after about forever, he declared that he was going to keep his clothes right side OUT when taking them off. After he took off his pajamas and underwear, I said, “Oh, wouldn’t it be cool if you could do that with your socks?” (holding… breath…) Then he just whipped off his socks from the toe, keeping it right. side. out. (BIG exhale) I was so proud of him this morning, so carefully taking off his clothes, getting ready for school.
Wow, I’m wondering where this is coming from because just last week I tried to explain to him about keeping them ride side out and he seemed to disinterested to the point that he physically left the room. You just never know when, where, or how something is going to sink in.
I’ve been meaning to post for the longest time, so now here I am. I am always trying to be witty and write about things that are interesting. Well, that strategy bombed. I guess my kind of blogging needs to be inspired and will aspire to be informative; and most important of all, be positive, though that doesn’t always prevail… hee hee. SO.
Recent events have me overwhelmed, confused and muddled. So I return to my keyboard in an effort to try to sort through it all. I am inspired, but really need to get disciplined if I want to get to my goals… the goals that are starting to take shape in my mind. So many things have been going on, but right now, for this post, I will blot all of them out except one.
On December 20, 2010, my son, Gabriel, was diagnosed with Autism Spectrum Disorder. That’s quite a mouthful for my mouth and my brain. So much has changed from one moment to another. I am suddenly confronted with life changing news (for a lack of a better word). Now, I feel, I must truly live up to my moniker, “the DragonMommie”… mother bear, demon advocate. I think that the most scariest thing is that now I need to be a proactive, very assertive, if not pushy advocate for my son who has special needs.
My whole life has been spent in the background, going along with others’ decisions. Now, I need to step to the forefront and be the one making those decisions. I’m seriously not sure I can do this. BIG sigh. I. am. so. scared….. for now. When I read that over, I realize that I’ve always been right there to look out for Gabe and make sure that he’s cared for and safe, so where is the big difference between then and now? The difference is that now I need to get an education and get it quick. I need to become an expert in a whole new area with its own language, rules and laws. I need to become an expert in researching all this new material and organize it in my head and on my laptop (no small task). I need to learn the unspoken cues. I need to learn the right words to use to be politically correct. I want to be active, informed and I want to use my talents to benefit these kids.
What do I know right now? I know that my son is not any different today than he was a month ago, two weeks ago, two days ago… yesterday. He is still the same amazing, loving, affectionate, smart, funny little boy. What we have now is additional information. We can now give a name to the reason why he acts a little quirky sometimes. He is growing and my husband and I are growing also. We are growing as people and as parents every single day. This was true before, but we are now getting a higher education in love and understanding. We’re far from perfect parents, but I feel that with this added understanding will come not just tolerance, but acceptance for what we cannot change. A determination to provide the highest quality of life that we can for our son. I can say already that miraculously I have a lot more patience with undesirable behavior I previously perceived as being defiance. As a mother, I am determined to learn as much as I can about what is really behind this behavior and how I can teach my son what is appropriate behavior and what is not.
What I know right now is that this condition, disorder, disease… whatever you want to call it, I realize can be such a blessing. First and foremost, our son is a miraculous gift from God and there is meaning in everything He does. We are now officially out of the realm of being a “typical” family. So much can be missed when living a life, day after day, in the mainstream. We are now blessed with a life where we are forced by these circumstances to a heightened sensitivity to what is going on with our child. We are looking at every aspect of his life, with new eyes, eyes with a purpose. We are enjoying the little things. In an effort to gain understanding, we talk to him trying to see what makes for good social conversation. We make sure we include him, age appropriately, in some decisions. We give him choices. Well, I know that a lot of parents out there are doing the same thing and I am not trying to be critical, but it’s so easy to just take over completely and dictate every single aspect of a child’s life. My parents definitely did that and it was no fun and I came out of it with little to no self esteem or confidence. It’s so important for a child to feel at least some control over his life, his body, etc. and it’s up to us, the parents, to allow that to happen… even if it’s just a choice between broccoli and string beans… an age appropriate choice.
I feel good. I think I’ve been somewhat successful with this post. I did not want to make it fancy with links and pictures. I wanted to focus solely on my thoughts. I’m sure future posts will have pictures and links because, well, that is my thing. Next post will include some links and info.
I know. I’m not blogging as much as I should, but I’ve been honing my fiber skills! Still, something happened yesterday that I simply MUST document.
Ever since Gabriel was born, I envisioned myself as being one of those moms who will find a way to discuss anything with her child, regardless of gender. I even wrote a song and book about the WHY questions of the very young. After almost four whole years, Gabriel finally asked his mommie a direct, engaging question. It was so totally unexpected and so totally outrageous. You be the judge:
Last night I gave him a bath; and because our apartment is on the cool side, afterwards we usually spend time on his bed to snuggle to keep him warm while he’s still wet. He gets wrapped up in a huge towel and I’ll dry his hair with the end of it. Last night I unwrapped him for the ritual of slathering shea butter all over him, and I caught him playing with his penis. Well. This was not the first I saw him doing this, AND it’s very normal behavior for this age… I guess for any age. The thing is that this mommie has never handled this situation as a mommie. I’ve heard stories from his teachers about how the boys are going at it during nap time! I’ve been told about how those little beds actually slide across the room! Some teachers were freaking out, so the school had to create a workshop for them to help them understand and handle it better. Again, very normal and they treat it as such.
Even though it’s normal, however, I still need to teach Gabe that he should not do this in public… OOOH, going back a few months, he went through a phase of pulling down his pants to play with his little willy. It unfolded so suddenly that I could not think about how to handle it as I didn’t want to traumatize the kid with my ineptness as a toddler interpreter. To make things worse, he started this behavior exactly on the morning of a cookie decorating party that had about 12 other kids attending. My first reaction as to be mortified when, after all the talking I did before we got there NOT to do that, he did. I have since figured out that he was doing this when he was bored. At the party, there came a point when all the other kids went downstairs and he was left upstairs with just the mommies. Even though I had my eyes on him 99% of the time, it was during that 1% he decided to put his hands in his pants. How I found out was that I had noticed someone looking in his direction with a funny face. I looked over and there he was. Thank goodness he was basically alone, but standing in the middle of the room being pretty obvious about the whole thing. I am so grateful for those mommies who have more than just a few years of mommie seniority on me. They really helped me get my head back and gave advice on how I should be handling it. However, you know that things like this do not go away overnight, so that Monday afternoon, I was advised by the school that he had exposed himself in front of all the kids… which is not normally a bad thing, but they are more concerned about the other kids’ parents finding out, especially new parents and those of the girls, because sometimes they don’t understand that it’s pretty innocent. The teachers also gave advice on how to handle this.
I’d say that the most important thing is to keep calm and to not project negativity about the actual penis or that playing with it is taboo. Again, let me say right here that this is my own opinion and the point of this is not to criticize any one else’s parenting. For myself, I want my child to be comfortable with his body and that means I will not teach him that touching his penis, or any other part of his body, is wrong. Now, getting back to the landmark question I was asked just yesterday. Oh, I should say that Gabe had stopped pulling down his pants in front of me and I had not gotten any reports, of him doing the same, from school,.
Getting back to last night. I grabbed this opportunity to talk more about the need to keep private and decided to tell Gabe not to play with his penis. I went on to say that he should not let other people see his penis because it was a “private part”, HIS private part. For a little while he was silent, then he looked right at me and asked, “Mommie, what’s wrong with my penis?” Wow, that came on so suddenly that all I could do was to just sit there, taking it in for a bit. I said, “Gabe, there is nothing wrong with your penis. Your penis is perfectly fine, there is nothing wrong with it. It’s just that your penis should be private and it’s bad manners to let other people see it.” Oh God, I am hoping that was okay to say. There is so much more that needs to be said on this subject, for his protection, about perverts, so heavy; but I still have no idea how to convey all this additional stuff, so kept silent, for now. I don’t remember using the word “wrong” when I first told him not to touch it, but I honestly don’t remember word for word, but do remember word for word, my response… how weird that is. From the whole experience? I’m walking on eggs wondering if I handled that okay… though I think I did. I had no idea he had this on his mind, if he did prior to this interaction.
SIGH… so that is the story of the million dollar question… not a “Why” question, but it’s plenty for now. REALLY. I am still so looking forward to Gabe asking more questions. I will go into a bit of history here. When I was growing up, my parents were not open, and definitely did not project approachability. There was affection, NO communication other than various dictates, rulings and being disciplined. As we got older, I think my mother missed being close with us, but really, she did nothing earlier in our lives to welcome us into “her” world. I’ve vowed that will not be the case with my son. Yes, I’m an older mommie, but I think it’s just the right time for me to become a mother. I never could have done this if I was younger. I am more mature and more developed, myself, which makes me better mom material.
So, things have been mentally and emotionally crazy around here lately. I am starting to understand some of the powerlessness that goes along with being a mommie. Needless to say, Little Drake has some issues and I am wracking my brain trying to figure out how to just identity what they are. So many factors are playing at once and they are not playing very nice.
He’s got hearing loss. Don’t remember if it’s in one ear or both. A month ago, I took him to his pediatrician and he found an “impaction”…. meaning he has some wax in there. A week or so later, I brought him to a specialist to be examined and also to take out the wax. We go to the specialist and he took wax out of both of his ears, but really, there was not that much there and the doctor said he didn’t think the wax was the cause for the hearing loss. He also found “subtle” fluid in there and said that the major question was “how chronic” is it. In other words, he didn’t know how long the fluid was there. He wanted to wait a month, without medication, to see if it went away by itself. I didn’t know any better and just went along with the flow. We just had a follow up visit yesterday and it seems that not only is the fluid still there, but now there’s more and on top of that, it’s infected. Well, I wanted to scream. My first thought was, “Hey, if you saw it a month ago and it was not infected, then by what I saw today, that fluid must not have been there very long if it actually can get infected”. Am I making myself clear? I know that I’m not a doctor, with medical training, but am I so far off the mark? It just seems to me that this dr. let my son go home without medication knowing full well that it was possible the he’d come back a month later with an infection.
This is what is making me mad… because now, not only does he need antibiotics, which I try not to give him, but he also needs to take some type of steroid. My baby being placed on a DRUG… albeit only for two weeks, but the side effects of this helpful drug is “some <?>” hyper aggression. Exactly what does “some” mean in this case? I now know how parents feel when there is something really wrong with their babies. I realize that this is small potatoes, but now my little man will change and not be himself for two weeks…
Ugh… I’m sitting here in a turmoil of thoughts and emotions. LD has been behaving erratically in school. We have found out that he also cannot communicate very well. They say that he does try, but is not where he should be. He is also hitting his classmates and I’ve heard the teachers, too. I am beside myself wondering what is causing this behavior. I am wondering if I’ve not done as much as I could do to teach him the right behavior. His teacher tells me that she doesn’t think he is being malicious; but that maybe he just doesn’t “know” what is right and wrong. He often laughs while he is being aggressive. Again, getting back to trying to identify what exactly is causing this behavior… I wish I knew. His teacher thinks he cannot process audio directions; which could be caused by the hearing loss, but with the hearing issue still a question, I sit here still in the dark.
The other day he whacked a cactus rain stick on the floor and it cracked open, with all the gravelly bits flying all over the floor. I was mortified that Gabe broke school property… oh and he also scribbled on the table with a magic marker…. I know, kid stuff… but still. I want to replace it, but the teachers wanted to see if they could fix it first… I have to check back with them. He teacher was so good with him… I am the one who failed miserably that day. All I could do was ask him why he did that… even after we found out that kids his age do NOT understand the concept of “why” and “how”…. so how do you get information from them? Creativity, that’s how… I’m not good at this. His teacher was the best. Miss. Tracey. She simply started to sweep everything up (something I could’ve done) and Gabe was helping her… so nice…. dumb mommie that I am. A great teaching opportunity steamrolled over by my own embarrassment.
The school wants me to get him to a pediatric neurologist. The Ear Guy says that going up that avenue at this time might not be necessary, but he’s leaving it to me to decide. I figure that it can’t hurt at this point. The more information we can get, the better. I’m still just so mad at this Ear Guy! I feel that we wasted a month’s time playing the waiting game with the health and well being of my baby’s hearing. Did you know that while taking this steroid, Gabe’s immune system is weakened? He’ll be more prone to infections and sickness. The label even says to keep him away from people with contagious illness…. oh, GREAT… he only attends public school full time…. oh yeah, he’ll be safe there!
I fret that I was too hard on Gabe for stuff that he could not help. It seems that I am always jerking him back to reality with, “Pay attention!” I have to seriously examine how I am talking to this kid. How much of this due to hearing loss and how much to him just tuning me out… I KNOW he does that! All I can think about is how apprehensive I am to wash his hair, always worrying about water getting in his ears and causing an infection! Seriously, if I wash his hair once a week, it’s a lot. The doctor told me that water getting in his ears from the outside is not the same as the water, on the other side of his ear drum, causing the infection… so there you have it… WASH YOUR KID’S HAIR!
Gotta run… I really can’t think that much anyway.