Category Archives: education
So, yesterday I donated platelets at Robert Wood Johnson Hospital, formerly known as Rahway Hospital in Rahway, NJ. Personally, I will never accept it as RWJ. I really don’t like it when they rename streets, buildings, schools, and yes, hospitals. So much of the history is lost when they do that and it upsets my stomach. I had stopped going to the hospital in Rahway because I didn’t like the treatment I got there past few times, and yes, maybe I was moody those days; but compounded by the dreary atmosphere, antiquated equipment and the overall dirty, dim look and feel of the room, I had decided to change my donation place to another location. Humph. A lot of good that name-changing thing did for the Blood Donor Room.
Anyway, Marty at the Blood Center of New Jersey called last week and asked if I could do it and though I hesitated, I agreed to donate there yesterday. I hadn’t donated since September and I was due. In October I suffered some nerve damage from getting the flu shot and stopped my donations because they come from the same arm I get pain in. It’s not just laying there during donations. You need to keep track of the “draws” and “returns”, and during the draws, you need to squeeze a stress ball to keep the pressure up. Otherwise what will happen is that the alarm will go off and there will be a problem. An important problem. Squeezing the ball keeps the blood flowing and prevents it from slowing down too much or stop altogether… NOT good.
Platelet Fact: Cancer, transplant, trauma, and open-heart surgery patients require platelet transfusions to control their bleeding.
I don’t like to say no to Marty. He’s always been a nice guy to talk to and one time sent me a little platelet guy.
Though I’ve always been committed to donating platelets, I’ve not always had a pleasant experience. It took me a few times in the beginning to get used to it; and one very specific time that I got sick from it. Not sick, sick; but I felt horrible. THE most important thing you can do for yourself is to drink plenty of water before and after your donation. Keep hydrated–very important. The next, if not more important thing to do to prevent getting sick is to eat very well before your donation. What I mean by that is that you need to build up your iron and what I do is eat generously, but not over eat, a nice steak, go easy on fats and dairy. I usually do a london broil a couple of days before donation, night before, etc. On the day of donation, you simply MUST eat well. By that I mean you must eat like a human, and not a rabbit. Eat healthy, but EAT. Yesterday for breakfast I actually ate a beef filling I had made out of chopped beef, onions, vegetables and tomatos and water. It was left over from a sort of beef pot pie…. individuals ones encased in pie dough. Then two hours later I ate salad, a beef empanada, rice and water. THEN, about a half hour before my donation, I ate a ham and cheese sandwich on a bagel with water. My stomach did not get upset at all. This last meal was eaten in the hospital cafeteria, which is probably the only redeeming value of donating at this hospital. A place to relax in. Oh, another good point. I always go to my donations early. Early enough so that I can relax sufficiently so that my temperature has a chance to settle down. Commuting to my donations always elevates my temp. and I’ve been rejected just because of that in the past. Oh, and don’t drink hot beverages right before donating as that will elevate your temp, as well. Something I never thought about. Something I never thought about, but is important is to take the time to sit and eat those cookies and sweets they offer you after donation.
Notice for Diabetics:
This is the one time you may indulge in sugary things. Just here at your donation place. You sugar levels will be lower and simply put, you need this. This does not mean that you can eat cookies for the rest of the day, just now, here after your donation. Just one, maybe two servings… but that’s it. I am diabetic and I do not drink the juices, but I do have one oatmeal cookie and cream sandwich and I take a pack of pretzels and water with me for the ride home. Of course, everyone is different. These are the things that I’ve noticed at work for ME.
Okay, so in review:
- Eat meat, preferably a good steak a day or so before platelet donation.
- Eat generously day of your platelet donation.
- Keep well hydrated all the time, but most important in the days before donation and after.
- Try to eat something right before your donation.
- RELAX. Get relaxed and stay relaxed.
- Avoid hot beverages right before your donation.
- Take advantage of the cookies! Take a minute or two for guilt-free treats.
This morning I slept like a rock and rolled out of bed on the late side, 8:00am. Usually, I wake up with the normal ruckus of the morning. Not so today, but that’s a-okay.
Last night my head was swirling around with ideas, but as always when it gets time to write them down, I’m a blank. So, I’ll do what I always do, write. Write down the strands of thought that surround my head like a maiden’s soft, light hair that moves with the breeze in a surreal kind of way. Yes, I’m awake and hope you have the inclination to stay with me.
When we first leaned that our boy was autistic, I was devastated. For him and for us. We were new parents, well not “new” exactly, but he is our first and only one, which will probably remain that way since we are in our early and mid fifties. We didn’t think we’d have him (if you’d like to read those details, you can look here) in the first place, so after seven years, I’m not so sure that God has another one in His plan for us. In a way, I’m relieved as it would be a hardship, both financially and probably physically; but I do wish that our Gabe could have a brother or sister. Not too long ago, he’d ask for one, almost constantly; and even now, he looks at my belly and asks if I’m pregnant…. oh boy. Which reminds me of a most embarrassing couple of moments over this weekend at a hotel we were staying at for a wedding. We walked by the hotel’s lounge and there was a man there with a huge gut. Quite out of the blue, Gabe said, rather loudly, “Hey MOM, that guy’s PREGNANT!” Well, I tried to ignore what he said which was a pretty bad mistake as he kept repeating himself all the louder because he didn’t think I heard him the first time, “MOOOM….” It was all I could do to muzzle him and get him out the front door. I tried to explain to him that saying things like that were inappropriate and tried to explain the concept of being insulted… think I failed with that, too. This has not been the first time he’s brought the concept of men being pregnant as he has frequently expressed his belief that HE was pregnant just because he ate more than usual, gaining a pretty big belly. He’d lift up his shirt, pointed to his belly and say, “MOM, I’m almost pregnant~!” Now, THAT was funny. Still, I had a hard time explaining that men and boys do not get pregnant, only women. He’s not asked me what exactly that is “yet”, and I’m grateful. After I thought I did a decent job explaining that men do not get pregnant, I was validated because the next day, we saw that man again and Gabe said (all too loudly), “MOM, there’s that man with the BIG belly~!” Um… Yep.
Still, the incident, not surprisingly, had me pretty upset even though I tried not to impress that upon him, I’m sure that I did. I’m maybe too obsessed about weight, or looks being singled out for laughs. I’m quite positive that wasn’t the intent, but I’m still pretty sensitive to that and don’t want Gabe growing up, insulting people no matter what the intent. He needs to learn this very differently than most kids do. Even though we know that autistic children can learn social manners, it’s not so simple. They do not pick up on social cues like the rest of us can, instinctually. They need to be presented with the concept and they learn it much like an academic lesson in school and they need to practice it over and over. They may never empathize, but they can learn to understand intellectually how important it is to learn and practice; but they may never truly “feel” that importance. I’m not even sure that Gabe will ever learn to walk in anothers shoes, which has always been important to me, in my learning. I always felt the need to REALLY understand things and, indeed, I’ve rarely followed through with anything unless I truly understood to my own satisfaction the importance of whatever it was.
WHAT ARE SOCIAL SKILLS?
Social Skills are a set of behaviors that allow a child to get along better with other people. A child with adequate social skills can adjust well to changes in his environment and can avoid verbal and physical confrontations with other people. A child who has poorly developed social skills, however, may have poor self-esteem, may display conduct problems (fighting, arguing, defying adults), and may have difficulty developing peer relationships.
WHAT IS A SOCIAL SKILLS GROUP?
Social skills groups focus on teaching children a variety of social skills to help improve their ability to make and keep friends, develop more self-confidence, and behave more appropriately. Role-plays and group interaction will give the children opportunities to practice these skills during the group session. The therapist will utilize behavioral reinforcement to promote rule compliance, participation, and use of appropriate social skills, while also encouraging and reinforcing the children to practice these skills outside of the session. Objective information regarding the children’s behavior will be gathered before and after the group to measure the children’s progress and parents will be provided with written feedback at the conclusion of each group.
We are truly blessed to have gotten Gabe into a social skills group. Please see the above for a good description. This is where they learn behaviors which are so-called socially accepted behaviors. The problem is that though they may try to interact with their peers, they never learned how to do that, as other children have learned and that is by picking up on the silent social cues and body language. They don’t intuit what is the appropriate, recognizable response or non-response to what the other child/peer displays. Also, Gabe’s group is a group of peers. They see it as play and I’m sure Gabe thinks it’s a play date.
Gabe is seven years old now and maybe that’s too young to learn about how/why a person can be insulted. I ended up repeating myself about the man maybe getting insulted, but then I realized that he probably has no what that would mean. I am dedicated to keeping open communications with him. He knows that whatever his question is, I will listen and I am frequently urging him to share his thoughts. He knows that I will urge him to just tell me his thoughts. Most times I’ve got to admit that I don’t really understand what comes out of his head, but I’ve learned to ask questions so that he’d have to elaborate on what he’s thinking. I’ve also had to learn when to just let it be when that doesn’t seem possible. Sometimes I grieve for the lack of communication and understanding. Lots of times I feel a total disconnect. I grieve because I’ve always dreamed of being a mom much different from my own mom. She was totally unapproachable and I never opened up to her or she to me. My dream was to have a totally different relationship with my children. Open communication all the way. If you can’t do that, what the heck kind of relationship IS that, anyway? I am learning that Gabe conveys more to me than words ever could. He is my teacher and has been from the first moment he took his first breath. That is a post within itself. So, Gabe is teaching me that not all relationships are the same. Huh? Didn’t I know that already? Apparently not.
One last paragraph. There are so many facets to Autism. Just like the disorder, itself, there are so many areas of specialty, so many areas that really need to be improved, that really need the attention of the professionals and people just like you. It’s totally overwhelming, so I take it in little bites. The area I find myself focusing on lately is how badly our teachers NEED to be educated about autism. Yet, our schools will fight to the death to stay in denial. They refuse to acknowledge that intervention services are needed for the autistic child to get an “appropriate” education. Forgive me, but mention the word “quality” and “education” together and you can kiss any intervention service good bye. Does that make sense? I have to ask because I’m not college educated, you know. Total idiocy! No matter how much compassion a teacher has, if he/she is not trained to recognize and deal with any problems that arise, not given the strategies they need to handle the tough situations, they will just end up feeling frustrated and might even label a child with a negative label, even… YES… even the label of BULLY. This of course, would most likely stem from ignorance, but does anyone want this to happen? I know I don’t. My own son could be labeled as a bully because he tried, in his own “socially unacceptable” way, to make friends with another boy or just trying to get someone’s attention, again in his own way. Maybe that need for attention was misinterpreted as bullying…. and I do see how that can happen. I can see my son being confused and feeling rejected and may be even push the other kid in an attempt to gain their attention and maybe friendship. Nobody and I mean nobody would see it that way in the mainstream world. I’ve been through a rough patch lately with a mainstream mother verbalizing in front of me that she would not want her typical kid in the same class as my little guy. That hurt a LOT. It was only after a lot of hurt that I realized that she was probably severely uneducated, maybe misguided even as she strives on a daily basis to project her highly educated personality. The sad fact is that EVERYONE is in dire need to be educated, teachers, typical children, typical moms and dads. So, maybe my focus should be on wholesale education for everyone… you can’t be overly educated, can you?
This morning I’m so sad and, well, pretty much upset by a post I read at a diary of a mom, a blog with a lot of love and inspiration. She is a mom of an autistic girl writing about their family’s experiences and the little joys of every day life. This morning it was on a subject that is near and dear to my heart: Education and Support for Special Needs Children, in our case, the autistic child. So now, as usual when something touches me this way, I write…..
The post in the a diary of a mom’s blog was about two women who murdered their autistic children. For the details, please link to the blog above. These mothers could not get past that first stage when you first get diagnosed. I remember it well, and I still have my days of worrying about the future; but these ladies seemed to have gotten stuck there. I know nothing of these horrible events, but one thing I am sure of is that they felt like they had nowhere to turn while teetering on the edge of a cliff. I’ve felt this way and sometimes still do, but I’ve scrounged together a good support system, partly with luck and a lot through loving, caring, compassionate individuals. Some being family and friends, but others being strangers. I believe that God has brought all these people together uniquely for us. Just yesterday I had a conversation about hope. Well, to be more accurate, I received a good tough-love, in your face smack down from a good friend about not loosing hope. Even the most optimistic person sometimes needs someone (or something) to bring them back to perspective. Maybe these moms didn’t have that.
As I said, I know nothing of these individual women, but I do know that education is severely lacking out there for both the adults, as well as all children in the school system of this country. I’ve seen ignorance color my son’s peers’ perception of him and it kills me inside as a mother and as a citizen of this city, this country. In my dealings with my own school system, I must say (and give credit) to the professionals here; BUT, and there’s always a “but”, I see a lack of knowledge and and training on the school’s part. With that said, they ARE trying, but I’m disappointed and surprised that they have no idea as to how to go about putting together strategies. They are doing so for the first time, as I’ve even been told that they are just putting things together as they go along; and that worries me. I am wondering why these professionals have not been to workshops that would educate and inspire them. No money? Hardly. I am in an Abbott District and, in general, we get more funding than other areas around here. Autism has been around a long time and there is no reason why our schools cannot meet the needs of these kids.
Getting back to availability of information. It seems that it’s very difficult to network with other parents of special needs kids and though I’ve given repeated permission to hand out my telephone number to other moms in the school, for years I have not met even one other parent, though I know that there are at least 8 other kids in my son’s class alone. A couple of weeks ago, however, through the school, I did manage to hook up with another mom of an autistic girl, two years older than my son and we had a play date and spoke a couple of times over the telephone. Just this alone, could have immensely helped these tragic moms and maybe they would’ve chosen life instead of death for their kids…. My heart is breaking.
To any desperately overwhelmed parent out there I must say STOP~!!! Stop and take the time to see the unconditional love your child has for you. For YOU alone. The love and trust found in these kids for their parents, and maybe even everyone around them, is sacred. Every single day of my son’s life has been a learning experience for ME. Wow. Here I am thinking that I am going to teach and mold my son into an admirable human being only to be side swiped because I am the one who is the student here, enrolled in a lifeclass originating not from the OWN network, but from the person of my little boy from the moment he took his first breath of life. LIFE. OMG, when I think about what what the world has lost with the loss of these little lives.
I’ve just decided to create a new page, listing the resources I come across. Please check back this time next week for that. This weekend will be pretty busy, but I will get to it right after that.
I’m writing from my heart today and when I do that, I’m not always rational or logical. I speak from a place of great emotion, and emotions almost never make any sense. I will most likely be judged as being out of line by posting but it is what it is and I write to sort of work through this myself.
Less than a year ago I had a passing conversation with a friend and her position and words are still with me today. If I remember correctly, I had initiated the topic, and at the time, accepted her opinion as just that, her opinion and she is definitely entitled to that. But her words rubbed my personal hide so much the wrong way then, but I brushed it aside because I had asked for her opinion.
My son had recently been diagnosed with autism and I was taking every opportunity to get input from anyone I could, whenever I could. We were driving together one day and the subject of education came up. My husband and I had just attended our first IEP meeting after the diagnosis and the team suggested something called a “50-50 Program”, which allows the child to stay in an inclusive classroom along side the general educated kids. This is preferable, if possible, because the children actually, for a lack of better words, they learn better. They need to have that socialization with the mainstream kids. Social behavior has a major effect on learning. More of that at another time because I feel a tangent building and we got to nip that in the bud….
So, we were pretty happy with the solution, but made a mental note to assess whether Gabe was actually benefitting from it. This program is structured to have a classroom, consisting of no more than 10 special needs kids and 10 general ed kids, with 1 special ed teacher and 1 general ed teacher. Among other things, I was wondering, however, who those general ed kids were going to be, how they would be selected and finally, if their parents needed to approve the set up. Which leads us up the to that friendly conversation with my friend. I was telling her about this whole set up and we both wondered the same things. I don’t remember if I asked her or if she just said, which I realize doesn’t matter; but she said point blank that she wouldn’t want her kids in the same classroom as a special needs kid. At the time, I felt the sting of that comment because she knows us and knows Gabe. I took it personally, though I told myself that I could not because it was just a discussion we were having and she was being honest.
Her position for not wanting her kids to share the same classroom with a special needs child is that she was concerned that time would be taken away from her own kids’ education if the teachers had to take time away from teaching the whole class to deal with a potential meltdown or whatever disturbance that would originate from the special needs kids. At the time, I agreed with her; and I do find myself concerned about that, as well. People tell me that I must only be concerned about my own kids’ education, and I am; but I am also concerned with the rest of the class and the teachers and the effort that it will be required to keep the classroom running smoothly.
In this year’s time, I have learned so much. I’ve learned that it’s absolutely necessary, if at all possible, to keep all the kids integrated in the classroom. Let me take a moment to explain that I’m talking about the higher functioning children who do have communication skills. What makes arranging appropriate education, socialization, extracurricular activities, etc., is that the children should be grouped together with those of equal levels of abilities. I sometimes think that it’s no wonder schools fail at socializing the kids. Well, not fail, but they seem disinterested and practically ignore the argument.
I’ve seen so much, first hand, too. The fear that ignorance can spawn can be avoided. I’ve just decided to begin advocating for a Social Behavior group conducted at the school. That is going to be a tall order, I think, despite the fact that there are enough kids there to get it done. Autistic kids can learn social skills from the regular kids. I’ve seen Gabe reach out to his classmates just to be pushed away and snickered at because they do not understand that he is different and that he is just trying to make a friend. I saw this specifically on a class trip last year that I had helped to chaperon. I had Gabe and two other boys. One, I recognized as Gabe’s “best friend”, I’ll call him Charlie, and another boy Gabe had spoken about, and I’ll call him Brian. It turned out that Gabe’s “best friend” was not really his friend. Charlie beamed up and informed me that Brian was his “best friend”. This stung a little, though I do realize that kids this young are still learning how to form relationships. I had to keep myself objective and I do believe I did a pretty good job of it. However, going through the day, watching the two new best friends sticking together, with Gabe on the outside of this privileged little circle broke my heart as a mother. Even more when Brian pushed Gabe away multiple times when he tried to take his hand, as we were all required to hold hands. On the bus, Gabe tried to get their attention by making sing-song sounds that grew quite annoying to them and they kept staring at me, like “he’s weird”. Hence a vicious cycle (mom’s heart talking) perpetuated itself. I recognize that Gabe’s behavior was odd and seemed very strange to these other two boys. That’s not their fault.
ALL the kids need to learn, understand and hopefully accept the autistic child. Are kids this age even old enough to comprehend? I’m thinking they can be instructed in an age appropriate way. What a tall order and I have not the slightest idea on how to accomplish this, especially with the school’s policy of keeping privacy intact and not wanting to draw attention, potentially negative attention onto the autistic child. I get that, I really do; but then how to get past this issue and create a learning opportunity? What I do know is that all through history how we’ve ever managed to affect social change was done through the young, the next generation.
Sigh. So, here I am thinking back to my struggle at the beginning of this post. I don’t hold any ill will. Indeed, do you think it arrogant of me to even say that. Well, these are my thoughts and I need to bring it all around to complete the circle. To bring all this to a close and there it is.