I consider myself reasonably adventurous when it comes to food. My boys and husband who only like food so hot they sweat profusely would undoubtedly disagree, but I am. Yesterday while shopping I saw a new variety of apples, and I love a good new variety of apple, that I will never try.
I was choosing apples somewhat based on price and somewhat on varieties we enjoy. I bagged up some Jazz apples - very crisp and sweet - when I saw a 4 pack of apples in a plastic container. The package was labeled "Grapples". No, not a hybrid grape/apple, but an apple infused with artificial grape flavoring.
Just what was it about naturally sweet and wonderfully flavored apples that made some genius decided it needed help to taste, better? Are there really kids who won't eat a regular normal apple unless extra flavoring is added?
To say we have a little problem with our food America is a ridiculous understatement. Can't we all agree to just leave our produce alone. I know we can discuss the organic vs. inorganically grown and that there are definitely some food additives that should be off limits. But honestly, can't we all agree that our fruits and vegetables do not need to be injected with flavoring to, well, add flavor. Either you like the flavor as is or you don't. Remember the expression, "An apple a day keeps the doctor away". I'll take my apple without injections thank you very much.
My Family
Here we all are!
Tuesday, January 29, 2013
Saturday, January 26, 2013
Why the Rush?
I rarely, as in 3 or 4 times a year maybe, go to the Mall of America. This week - twice. Once to walk with a friend, which was great as the below temps made walking outside impossible. Today after discussing several options I agreed to take Ella and Jacob to the mall and purchase a small lego toy if they walked around it with me twice which is equal to a mile. So off we went.
As soon as we entered the doors we could see that there was obviously a cheerleading competition of some sort going on. Girls in too short skirts with thick make up, including very young girls, maybe 5 or 6 yrs. old, big bows in their hair. It's an odd juxtaposition to see the girlish ponytails with little girl bows, but adult faces with their make up.
There were several disturbing scenarios I observed. One was a family who had matching T-shirts reading Jacey's Mom, Jacey's Dad, Jacey's Bro and lastly Jacey's Man. JACEY'S MAN!! These kids were maybe 16 yrs. old. What were her parents thinking? Don't even get me started on referring to this kid as a man. Sheesh.
I've never understood why some people seem to be in such a rush to have their children grow up. Childhood is an incredibly short time. We should cherish it and stretch it just as far as we possibly can enjoying every last second of it, not hurry our children into an early adulthood.
It made me oh so grateful for my level headed daughter. When we arrived today we parked and had to walk through the store Forever 21, a store that would be very attractive to most girls her age. We couldn't walk through the store fast enough for her, except maybe when she's passing the American Girl store. Nothing there turned her eye.
I had to beg her to try on hoodies in a different store, but she tried on the first one I handed to her and she said, "that's fine". There are times I wish she would take an interest in girly type things or the clothes she wears, but I'll take her lack of fashion interest over a girly girl any day and I will squeeze every last second out of her much too quickly waning childhood. Adulthood can wait.
As soon as we entered the doors we could see that there was obviously a cheerleading competition of some sort going on. Girls in too short skirts with thick make up, including very young girls, maybe 5 or 6 yrs. old, big bows in their hair. It's an odd juxtaposition to see the girlish ponytails with little girl bows, but adult faces with their make up.
There were several disturbing scenarios I observed. One was a family who had matching T-shirts reading Jacey's Mom, Jacey's Dad, Jacey's Bro and lastly Jacey's Man. JACEY'S MAN!! These kids were maybe 16 yrs. old. What were her parents thinking? Don't even get me started on referring to this kid as a man. Sheesh.
I've never understood why some people seem to be in such a rush to have their children grow up. Childhood is an incredibly short time. We should cherish it and stretch it just as far as we possibly can enjoying every last second of it, not hurry our children into an early adulthood.
It made me oh so grateful for my level headed daughter. When we arrived today we parked and had to walk through the store Forever 21, a store that would be very attractive to most girls her age. We couldn't walk through the store fast enough for her, except maybe when she's passing the American Girl store. Nothing there turned her eye.
I had to beg her to try on hoodies in a different store, but she tried on the first one I handed to her and she said, "that's fine". There are times I wish she would take an interest in girly type things or the clothes she wears, but I'll take her lack of fashion interest over a girly girl any day and I will squeeze every last second out of her much too quickly waning childhood. Adulthood can wait.
Thursday, January 24, 2013
Laughing Because I Love
This is Frankie McDonald. He has his own youtube channel. He really loves to talk about weather, but also likes dancing and holidays. He also, pretty clearly, has a developmental disability, perhaps autism. When I watched the first time I wasn't sure if it was okay to laugh. My conclusion is that it's okay if this is a population of people you really love, and I do. Frankie is passionate about whatever he's talking about. His parents are clearly aware that he's creating all these videos and likely are encouraging him. All of us who have children with obsessions knows there are some battles you chose to fight and some that are not worth fighting. I have no doubt that this obsession keeps Frankie very busy and in a much more fruitful way than many other obsessions. He also keeps track of how many hits he has, so he really wants people to watch.
Some of the other videos I saw, including several radio stations, featuring Frankie were clearly making fun of Frankie and were not laughing because they love. That is my one reservation of sharing this video at all. I don't want people to misunderstand that it's okay to laugh at Frankie. Enjoying how he sees the world is different than laughing at him. In this video Frankie clearly cares deeply that we Minnesotans need to be careful with our extremely cold temperatures so BE PREPARED!
How can you not love the extra body noises and the fantastic Canadian accent, this coming from a Minnasootah girl. Frankie - thanks for the warning and I'll be watching you.
Some of the other videos I saw, including several radio stations, featuring Frankie were clearly making fun of Frankie and were not laughing because they love. That is my one reservation of sharing this video at all. I don't want people to misunderstand that it's okay to laugh at Frankie. Enjoying how he sees the world is different than laughing at him. In this video Frankie clearly cares deeply that we Minnesotans need to be careful with our extremely cold temperatures so BE PREPARED!
How can you not love the extra body noises and the fantastic Canadian accent, this coming from a Minnasootah girl. Frankie - thanks for the warning and I'll be watching you.
Tuesday, January 15, 2013
Pick Pick Pick
One of Callie's quirks is she hates imperfections in clothing. If there's a thread she'll pull it till like a cartoon her sweater completely unravels into a pile of thread on the floor. If there's a hole she'll pick and pick at it. Sometimes, as today, she makes the hole, generally with a pencil, and then picks or pulls at it till the item of clothing is unwearable. What leads her to wreck something perfectly good I don't know. I just know with her, once it's begun there's no stopping it.
As with so many of Callie's quirks they often relate to life lessons for me. We are repurposing the recently deserted bedroom of our Christopher into an office/sewing or craft area. For, well ever, I've had to pull out my machine and then put it away, often on a daily basis due to some fingers that just can't stay away. Now I can set it all up and leave it be - close the door on it, even lock it and trust that it'll still be there when I return. We can also deal with the mounds of paperwork that this family requires behind closed doors, maybe putting all of it into some semblance of order and maybe even getting a little writing time of my own done without interruption - well, that fantasy may be taking it a bit too far.
This weekend Mark and I shopped for a good office chair and, thinking that some bright bold color would be a nice change from the standard black we purchased a royal blue chair. As we started putting the room together I suddenly realized the walls are a sea foam green. Royal blue most definitely does not go with a royal blue. The red chair we looked at may have gone better, but also could have been exchanged with the upstairs black office chair and would have matched, but not the royal blue. Suddenly the whole room was ruined in my mind because nothing would even slightly match and what in heavens name would I do for an area carpet that would go with those two completely opposing colors.
As I was complaining and chastising my tirelessly patient husband about it I realized it's much like Callie's picking. I took something that is just fine - new to me, functional, bright, clean and picked and picked until, in my mind at least, it was ruined. How incredibly unappreciative could I possibly be? I am going to have my very own space and every time I look at and sit in that very comfortable chair I will remind myself how very blessed and privileged my life is and the fact that I could get all worked up about the color of a brand new chair is just another reminder to be ever so grateful for the amazing life I live with an unbelievably patient man.
Thursday, January 10, 2013
Get to the Point
A couple days ago Chad's social worker came over for us to complete his plan for this next year. As we finished we also discussed our adult daughter and how things are going for her. She has a team of providers and e-mails are sent to all on a fairly regular basis when there is a problem that needs our attention. She said with a sly grin that she loved how blunt I was and said she sits there reading it saying, "Go Paula Go." I took it as a compliment and that it makes her job easier when we, as guardians, just state the facts and what our thoughts/decisions are. It's the power of guardianship. We get to make the decisions and generally others have to carry them out. We have that power for three adult children, including Robby who was our foster son for 14 years.
I was contemplating on whether my bluntness is a good or bad thing and why it is that I've become more curt, particularly as the years go by. I decided it's partly because I am experienced and feel pretty secure in my decision making when it's necessary and involves my kids. I also decided it's due to the number of people we make decisions for and the number of people they have involved in their lives that have to receive and carry out those decisions. They have many professionals and others involved in every aspect of their lives. There are seven completely dependent people in our lives and one who is on her way to making some of her own decisions, which is a whole other type of training. I figure there are close to 50 some professional types who ask us to make decisions regarding their care, work, living arrangements, money, future funeral arrangements - made those decisions for Robby last year, medical care decisions etc. Being blunt is simply a time saver. Making small talk takes time.
For awhile Callie had a physical therapist who was freaked out by her impulsivity and was determined that she should wear a helmet. The kid was like a bat - she never bumped into anything. She might step on kids that were sitting on the floor in her way - they might have needed helmets - but she was fine. She worried about table corners etc. My philosophy was if they had sharp corners in a special ed. room I'm not thinking that's my problem - put protectors on the table corners then. My other thought was, the kid already stands out in a crowd and we're trying to help her meld, just how weird do you want to make her look?
When Chad was in his early teens we had someone on his team suggest he needed more age appropriate toys to play with - he liked and still likes - his super heroes. My reaction was, "Really? I know a guy with an entire basement devoted to his toy train hobby. He's a pilot. I'm thinking Chad is just fine with his super heroes." The general rule is they stay at home or in the car, just like the pilot, know the time and the place to let your inner child out.
There are people in my life that I am gentler with. I know they need that care and attention and I'm happy to give it. When it comes to those who are in that "professional" realm, I tend to be the bluntest. Personally I appreciate knowing where people are coming from and I'm really good with straight forward. It makes it easier for me to be decisive, which I'm thinking helps everyone. I don't want to hurt people's feelings, but that being said, my emotional energy is pretty spent with the people I'm responsible for here at home and those in our immediate family. So for anyone who's been on the receiving end of my bluntness I won't apologize, because it's how I cope and my "work" style, shall we say. Just know it's really nothing personal. I may just be in a hurry and trying to save both of us some time.
I was contemplating on whether my bluntness is a good or bad thing and why it is that I've become more curt, particularly as the years go by. I decided it's partly because I am experienced and feel pretty secure in my decision making when it's necessary and involves my kids. I also decided it's due to the number of people we make decisions for and the number of people they have involved in their lives that have to receive and carry out those decisions. They have many professionals and others involved in every aspect of their lives. There are seven completely dependent people in our lives and one who is on her way to making some of her own decisions, which is a whole other type of training. I figure there are close to 50 some professional types who ask us to make decisions regarding their care, work, living arrangements, money, future funeral arrangements - made those decisions for Robby last year, medical care decisions etc. Being blunt is simply a time saver. Making small talk takes time.
For awhile Callie had a physical therapist who was freaked out by her impulsivity and was determined that she should wear a helmet. The kid was like a bat - she never bumped into anything. She might step on kids that were sitting on the floor in her way - they might have needed helmets - but she was fine. She worried about table corners etc. My philosophy was if they had sharp corners in a special ed. room I'm not thinking that's my problem - put protectors on the table corners then. My other thought was, the kid already stands out in a crowd and we're trying to help her meld, just how weird do you want to make her look?
When Chad was in his early teens we had someone on his team suggest he needed more age appropriate toys to play with - he liked and still likes - his super heroes. My reaction was, "Really? I know a guy with an entire basement devoted to his toy train hobby. He's a pilot. I'm thinking Chad is just fine with his super heroes." The general rule is they stay at home or in the car, just like the pilot, know the time and the place to let your inner child out.
There are people in my life that I am gentler with. I know they need that care and attention and I'm happy to give it. When it comes to those who are in that "professional" realm, I tend to be the bluntest. Personally I appreciate knowing where people are coming from and I'm really good with straight forward. It makes it easier for me to be decisive, which I'm thinking helps everyone. I don't want to hurt people's feelings, but that being said, my emotional energy is pretty spent with the people I'm responsible for here at home and those in our immediate family. So for anyone who's been on the receiving end of my bluntness I won't apologize, because it's how I cope and my "work" style, shall we say. Just know it's really nothing personal. I may just be in a hurry and trying to save both of us some time.
Wednesday, January 9, 2013
This is Life Deal With It
Who doesn't like getting new stuff. Me too - usually. The new piece of equipment that arrived yesterday - a suctioning machine - not so thrilled. We put it off for as long as possible and will use it, for Shannie, only - only when ab-so-lute-ly necessary. That being said, it'll be a good piece of equipment and really help her out and that's all the detail I'm gonna say because - gross.
Years ago one of the girls we provided foster care for had a tracheotomy. Of all the medical issues we deal with ones involving the "M" word - mucus - are the most difficult for me. I have a strong gag reflex sometimes just thinking about it. Handling that trach was quite the challenge for me. Christian's trach, thankfully, was removed long before he arrived here. Shannie just needs a little help when she has a serious coughing spell - that's manageable.
I was determined from a very young age to be a nurse, or maybe even a doctor until. One day when I was a Candy Striper in my cute pink and white striped jumper - those were the days - I had to hold the plastic dish for a guy coughing and spitting. I just about lost it there and then. I walked out of that room and thought - nope - not for me. I laugh about it now thinking about all the medically gross stuff we've dealt with since I was fourteen - if I'd had any idea I might have pushed through and gotten a medical degree from a reputable institution, but no, just the college of - This is Life Deal With It - for me.
Once we had Shannie in a local hospital for pneumonia and she needed to be fed. Mark gets the G-tube out and the nurse's eyes bugged out. From her reaction it appeared she'd never actually used a G-tube. This didn't really provide the confidence in that particular hospital's ability to handle our girl and we were ever so grateful when they transferred her to the hospital where we were generally admitted. I think they were happy to see us go as well. This is just about as much nursing as I want to handle. With every new piece of equipment or medical issue I learn and adjust - sometimes not very cooperatively, but what must be done must be done.
One last thing - for some reason they didn't send the tip attachment that would actually go into her mouth, so online we went looking for one. A package of 5 - $1.06 each - great deal. Put it in my basket - the total was $139. 04! Whaaaaaaat? Yup that was shipping and handling - are you kidding me? We tried to circumvent the whole rigamarole of a doctor's order etc. etc. and just paid for the machine ourselves - $147 total, by the way. Now Mark will have to spend a morning on the phone getting a doctor's order for our medical supply company so we can get the little attachment. Is it any wonder people dealing with medical issues are overwhelmed, not to mention broke? But, as I said, this is life - so deal with it we will.
Years ago one of the girls we provided foster care for had a tracheotomy. Of all the medical issues we deal with ones involving the "M" word - mucus - are the most difficult for me. I have a strong gag reflex sometimes just thinking about it. Handling that trach was quite the challenge for me. Christian's trach, thankfully, was removed long before he arrived here. Shannie just needs a little help when she has a serious coughing spell - that's manageable.
Once we had Shannie in a local hospital for pneumonia and she needed to be fed. Mark gets the G-tube out and the nurse's eyes bugged out. From her reaction it appeared she'd never actually used a G-tube. This didn't really provide the confidence in that particular hospital's ability to handle our girl and we were ever so grateful when they transferred her to the hospital where we were generally admitted. I think they were happy to see us go as well. This is just about as much nursing as I want to handle. With every new piece of equipment or medical issue I learn and adjust - sometimes not very cooperatively, but what must be done must be done.
One last thing - for some reason they didn't send the tip attachment that would actually go into her mouth, so online we went looking for one. A package of 5 - $1.06 each - great deal. Put it in my basket - the total was $139. 04! Whaaaaaaat? Yup that was shipping and handling - are you kidding me? We tried to circumvent the whole rigamarole of a doctor's order etc. etc. and just paid for the machine ourselves - $147 total, by the way. Now Mark will have to spend a morning on the phone getting a doctor's order for our medical supply company so we can get the little attachment. Is it any wonder people dealing with medical issues are overwhelmed, not to mention broke? But, as I said, this is life - so deal with it we will.
Saturday, January 5, 2013
Special Education - This Parent's Viewpoint
It is with trepidation that I write this blog, but it's been on my mind for quite awhile and hopefully it will be taken in the spirit that it is meant, which is to share my experience, not to criticize. I've had children in special education for a total of 22 years now. I am surely not speaking for all parents of special ed. kids, that would be impossible, just some ideas, suggestions or thoughts from my perspective.
1. Very few parents of SPED kids - short for SPecial EDucation - were expecting to be parents of SPED kids. When you're not expecting to learn about something it sometimes takes longer to learn it. Perhaps sometimes because you're hoping you don't really need to know this stuff, this is all just a mistake. That means we may need information to be repeated. There is so much for us to take in and school is only one place from which we are getting information thrown at us. Many of us have multiple health care providers to keep track of or social workers or psychologists helping us figure out what we're dealing with. We are on information overload - all - the - time. Receiving all this info. via various venues may be helpful - e-mails, phone calls, written forms or notes. Different people like to receive their info. in different ways. The first of many areas where flexibility is an essential skill for SPED professionals. Most parents are assimilating all these details while also dealing with jobs, other family members, possibly financial difficulties and lots of emotions. None of these things helps process all that is being thrown your way. By the way - watch the acronyms. Not everyone is savvy to the IEP, SPED, SPOT etc. terms - which has changed more times than I can count - and, it may just be me, but I hate feeling like the one left out of the secret society or feeling stupid. For me, that's the worst.
2. IEP - the Individual Education Plan - often an experience that is overwhelming for parents. First and foremost every person around that table should introduce themselves and yes explain what the heck you do - specifically. Doesn't matter if you've met the parent before or talked to them on the phone. When you're sitting at a table with maybe 8 or so professionals your mind may blank out and it's awkward if you can't remember someone you should clearly know. Also - who are these school rep people and what is their job? I'm still not sure I know the answer to that. I only figured out two years ago the hierarchy of SPED teachers - it was the first time I knew what a "lead" teacher, sort of the middle management teacher who supervises the SPED teachers at a certain level - was - after 20 years! That's ridiculous and I'm a reasonably intelligent person who is generally not overwhelmed by my own life issues, I can't imagine how a single parent or one challenged in their own ways handles it. Statistics vary, but some state up to 90% of parents with special needs children face divorce. Compassion seems like a quality most SPED professionals would all have and realizing the stress marriages may be under when you are dealing with your students' parents is just one area where that compassion would be essential.
3. I am a realist. This may not be true of all parents, but I am very realistic of what my kid's adult life is likely to look like. This is partly because I have parented 3 adults, all in the DCD category - Developmentally Cognitively Delayed - so I know what it looks like when they leave school and the options that are available. School is completely different from real life. In real life every 30 min. or 45 min. or whatever the time period is will not/is not scheduled and controlled. That's not how the world works. The majority of people who interact with my kids are not trained professionals who are used to their quirks and can decipher their speech. When I look at my kids I am looking for how they interact with others and how they adapt and what personal care skills they have or don't have. Frankly, if a kid doesn't learn to mind other people's personal space, i.e. stay out of their bubble, writing their name or adding numbers isn't likely to help them get a job. Social skills are everything in the real world. Academic skills mean nothing if a kid can't speak clearly enough for a complete stranger to understand them or doesn't follow directions. Every academic skill, especially by the time they reach middle school, should be a vehicle to teach social and job skills. Again, I'm a realist, only one of my SPED kids will be their own guardians so having a signature will never be needed, but waiting quietly while someone else fills out the form - very important. Learning how to act around "typicals" is very essential to their adult life and often lacking in our how our special ed. is set up today - see #8.
4. Independent - not relying on another or others for aid or support. Apparently this is a word which is defined differently in a school setting than I would at home, or frankly than the entire rest of the world would define it. An example of an independent skill is to give an instruction, say, wipe the table, and the kid would get a cloth, rinse it out, wipe the table down thoroughly, rinse the cloth and then put it away or hang it up. That's independent. I've been told my child does certain things independently at school which, in reality, seems to mean someone pointing, instructing and redirecting while the child proceeds with the "independent" skill or else they have amazing talents they express no where else. Either way, these "independent" skills are useless if they don't transfer out of the school setting. If there's really that large of a disconnect between their school abilities and their out of school abilities we may have a problem. If they way we define the word independent is the issue, then let's define it together so we're all on the same page.
5. Perhaps a continuation of #4, but I prefer my kids are praised for "real" accomplishments, not concocted ones. There was a video recently that showed a "wrestler" who had severe CP. His coach carried him to his opponent and they "wrestled". Of course the kid with CP "won" and everyone cheered. It was completely patronizing and demeaning, in my opinion. There have been times my kids have brought home art work from school I'm pretty certain they had nothing to do with. I'm fine with that, but don't want them having "their" art in a show if it's something they had very little input on. They are capable of having real achievements on their own. Just as I'm not a fan of "participation" ribbons in kid's sports, I'm not a fan of fake achievements for my SPED kids. Not everyone is a "winner" and that's just fine. It makes their real achievements even sweeter because I know they worked hard for them.
6. School is often a big black hole. My kids are not able to come home and tell me how their day was. Some because they are non-verbal, but others are not able to have a conversation which is in any way informational. Sure, other people will say their kids never tell them how their day went either. I have typical kids too, so I know about that, but I get pretty much zero info. unless a teacher takes the time to tell me. I can't even know the names of my kid's friends if they can't tell me, usually can't, and teachers can't due to confidentiality I suppose. It's a really odd position to be in. I will tell you the stories I want to hear more than anything else are not generally about their academic work, it's about the regular ed. kids who had lunch with them. I got pictures from the DAPE - adaptive physical education - teacher of my kids climbing the rock wall. That was awesome! Parents are often told they are part of the team, but the part who has absolutely no idea what the other players are doing most days. I know the end goals, but often feel left out of the game. Any stories that let me know how my kid was at school, what kind of day they had, do they have friends - anything is great to fill in that black hole. I don't need a daily phone call, but an occasional e-mail with a personal story - love those.
7. It is a shame that paraprofessionals are not considered part of the IEP team. It's a terrific shame when a teacher doesn't realize how very important those paras are in how well our students succeed in school. Most of the SPED teachers I know are very aware of what an important part of the team the paras are. The few I've known that didn't know that, well, the classroom environment suffers because of it. They are the ones who observe those reg. ed. interactions that I'm so curious to know about. They are generally the people who are responsible for teaching my child proper interactions with typical peers - an essential skill in my opinion. They are the ones that care for my child's personal cares - a very important and personal part of my child's day. A great para is priceless and often under appreciated.
8. It was thirty years ago when our son Chad moved in with us. Obviously special ed. has changed quite a bit from those days. One of the things that has changed and yet not changed is integration. In elementary school, the early years there is a reasonable amount of integration. As the years go by it lessens and in some cases becomes nearly non-existent. When Chad was in high school in the early 90's he played the bass drum in the regular school band. It was not by any means a big fight for that to happen. We just said he loved music could he do something in band and the spec. ed. teacher made it happen. It was wonderful. From what I've seen I'm thinking that would be quite the achievement these days. We seem to be much happier with keeping special ed. students in their own space and away from reg. ed. students. During lunch, to my knowledge, my kids are at a table with a para and at least one other SPED student. This is counted as integration time. Knowing what my kids look like when they're eating, it's not what I would consider really prime time for making relationships with reg. ed kids. Sometimes they gross me out when they're eating and I'm quite used to it. It's not exactly the time their best foot is forward. I assume some, if not all, of it is cost effectiveness, which teachers have no control over. When Chad went to band a para went with him. Now, any integration that happens is never one on one, therefore sort of negating the whole concept of having our kids form relationships with typical peers. It's difficult enough when they need an adult close by, but if they have a SPED peer there too, what typical kid is going to approach them then. I'm sure some do, but it would be the extreme exception.
9. Holistic - this may sum up my ideal view of special education, but, unless a holistic approach is taken our kids will not be prepared for adult life which is, after all, the goal. All of my special ed. kids are adopted and many came from difficult situations, so that's where I'm starting from. However, I believe this is true of all SPED kids. Physical, emotional, intellectual and social development does not happen individually. It happens when the child is taken as a whole. If my medically fragile child is recovering from pneumonia it may not be the best time to start a new communication program. If my child has a meltdown at school it may not be the best time to move desks. If you want to work on social skills get them out of the classroom and into a regular ed. room and work on those skills. Don't sit in a private room and make up a pretend conversation - that's not the real world and they may not be able to transfer those skills from a made up situation to a real world situation.
10. One last point. Most teachers know that parents often get the brunt of our kid's attitudes when they've worked so hard at keeping it together all day long. They're exhausted by the emotional energy of it all and can't wait to get home and let loose. Please remember that you often see the absolute best my kid has to offer and we get the leftovers to deal with at home. Often between dealing with behavior issues and working on personal care skills, table manners, social skills, going to special olympics, sports, church activities or music lessons and the emotional baggage they are carrying - we are exhausted. I'm sure that there are some parents who welcome homework for their kids. For us, it is often too stressful. I also put homework under the category of "independent". My older elementary typical kid does not need my help or gets help from friends. My SPED kids will never be able to do their homework independently. This often feels like I have homework to do and I'm often less than thrilled to have homework, especially when it inevitably will cause a massive meltdown. This is another area where it helps if you can put yourself into our shoes. Imagine the day you just had at work and then picture yourself going home to spend the evening with a cranky, if not completely belligerent kid who just wants to play and your job is to call them inside or away from their game and sit down - again - to do paperwork. How many of our kids are already struggling to sit still at school? I have a kid who generally has to stand at the dinner table because he just can't sit anymore after sitting - all - day - long. That is just asking too much. Flexibility is essential in parenting, as it is in teaching our kids and that should include the flexibility to just say no to homework when their mental health, as well as our own, is at stake. We need to have some time to positively connect with our kids before we kiss them goodnight. If that means no homework - then so be it.
My hope with this blog is not to offend or even call SPED professionals to task. I have the utmost respect for most of the professionals my children have encountered and I hope they know that. It is my attempt to express my parental opinion - mine, not every parent's opinion. Most of my kid's professionals have been just that - truly professional. Not perfect, heaven forbid that would require me to be a perfect parent and that's way too much pressure. I'm thrilled when I know my kids have a teacher who is optimistic, energetic, creative, and flexible. What more could I ask for. There's nothing better than sending your child on their school bus every day knowing they will have the best day possible because from the time they're greeted on the bus until the time they get back on that bus they will be with people who are loving on them all day - no matter what kind of day they have. For all of you, I will be eternally grateful.
1. Very few parents of SPED kids - short for SPecial EDucation - were expecting to be parents of SPED kids. When you're not expecting to learn about something it sometimes takes longer to learn it. Perhaps sometimes because you're hoping you don't really need to know this stuff, this is all just a mistake. That means we may need information to be repeated. There is so much for us to take in and school is only one place from which we are getting information thrown at us. Many of us have multiple health care providers to keep track of or social workers or psychologists helping us figure out what we're dealing with. We are on information overload - all - the - time. Receiving all this info. via various venues may be helpful - e-mails, phone calls, written forms or notes. Different people like to receive their info. in different ways. The first of many areas where flexibility is an essential skill for SPED professionals. Most parents are assimilating all these details while also dealing with jobs, other family members, possibly financial difficulties and lots of emotions. None of these things helps process all that is being thrown your way. By the way - watch the acronyms. Not everyone is savvy to the IEP, SPED, SPOT etc. terms - which has changed more times than I can count - and, it may just be me, but I hate feeling like the one left out of the secret society or feeling stupid. For me, that's the worst.
2. IEP - the Individual Education Plan - often an experience that is overwhelming for parents. First and foremost every person around that table should introduce themselves and yes explain what the heck you do - specifically. Doesn't matter if you've met the parent before or talked to them on the phone. When you're sitting at a table with maybe 8 or so professionals your mind may blank out and it's awkward if you can't remember someone you should clearly know. Also - who are these school rep people and what is their job? I'm still not sure I know the answer to that. I only figured out two years ago the hierarchy of SPED teachers - it was the first time I knew what a "lead" teacher, sort of the middle management teacher who supervises the SPED teachers at a certain level - was - after 20 years! That's ridiculous and I'm a reasonably intelligent person who is generally not overwhelmed by my own life issues, I can't imagine how a single parent or one challenged in their own ways handles it. Statistics vary, but some state up to 90% of parents with special needs children face divorce. Compassion seems like a quality most SPED professionals would all have and realizing the stress marriages may be under when you are dealing with your students' parents is just one area where that compassion would be essential.
3. I am a realist. This may not be true of all parents, but I am very realistic of what my kid's adult life is likely to look like. This is partly because I have parented 3 adults, all in the DCD category - Developmentally Cognitively Delayed - so I know what it looks like when they leave school and the options that are available. School is completely different from real life. In real life every 30 min. or 45 min. or whatever the time period is will not/is not scheduled and controlled. That's not how the world works. The majority of people who interact with my kids are not trained professionals who are used to their quirks and can decipher their speech. When I look at my kids I am looking for how they interact with others and how they adapt and what personal care skills they have or don't have. Frankly, if a kid doesn't learn to mind other people's personal space, i.e. stay out of their bubble, writing their name or adding numbers isn't likely to help them get a job. Social skills are everything in the real world. Academic skills mean nothing if a kid can't speak clearly enough for a complete stranger to understand them or doesn't follow directions. Every academic skill, especially by the time they reach middle school, should be a vehicle to teach social and job skills. Again, I'm a realist, only one of my SPED kids will be their own guardians so having a signature will never be needed, but waiting quietly while someone else fills out the form - very important. Learning how to act around "typicals" is very essential to their adult life and often lacking in our how our special ed. is set up today - see #8.
4. Independent - not relying on another or others for aid or support. Apparently this is a word which is defined differently in a school setting than I would at home, or frankly than the entire rest of the world would define it. An example of an independent skill is to give an instruction, say, wipe the table, and the kid would get a cloth, rinse it out, wipe the table down thoroughly, rinse the cloth and then put it away or hang it up. That's independent. I've been told my child does certain things independently at school which, in reality, seems to mean someone pointing, instructing and redirecting while the child proceeds with the "independent" skill or else they have amazing talents they express no where else. Either way, these "independent" skills are useless if they don't transfer out of the school setting. If there's really that large of a disconnect between their school abilities and their out of school abilities we may have a problem. If they way we define the word independent is the issue, then let's define it together so we're all on the same page.
5. Perhaps a continuation of #4, but I prefer my kids are praised for "real" accomplishments, not concocted ones. There was a video recently that showed a "wrestler" who had severe CP. His coach carried him to his opponent and they "wrestled". Of course the kid with CP "won" and everyone cheered. It was completely patronizing and demeaning, in my opinion. There have been times my kids have brought home art work from school I'm pretty certain they had nothing to do with. I'm fine with that, but don't want them having "their" art in a show if it's something they had very little input on. They are capable of having real achievements on their own. Just as I'm not a fan of "participation" ribbons in kid's sports, I'm not a fan of fake achievements for my SPED kids. Not everyone is a "winner" and that's just fine. It makes their real achievements even sweeter because I know they worked hard for them.
6. School is often a big black hole. My kids are not able to come home and tell me how their day was. Some because they are non-verbal, but others are not able to have a conversation which is in any way informational. Sure, other people will say their kids never tell them how their day went either. I have typical kids too, so I know about that, but I get pretty much zero info. unless a teacher takes the time to tell me. I can't even know the names of my kid's friends if they can't tell me, usually can't, and teachers can't due to confidentiality I suppose. It's a really odd position to be in. I will tell you the stories I want to hear more than anything else are not generally about their academic work, it's about the regular ed. kids who had lunch with them. I got pictures from the DAPE - adaptive physical education - teacher of my kids climbing the rock wall. That was awesome! Parents are often told they are part of the team, but the part who has absolutely no idea what the other players are doing most days. I know the end goals, but often feel left out of the game. Any stories that let me know how my kid was at school, what kind of day they had, do they have friends - anything is great to fill in that black hole. I don't need a daily phone call, but an occasional e-mail with a personal story - love those.
7. It is a shame that paraprofessionals are not considered part of the IEP team. It's a terrific shame when a teacher doesn't realize how very important those paras are in how well our students succeed in school. Most of the SPED teachers I know are very aware of what an important part of the team the paras are. The few I've known that didn't know that, well, the classroom environment suffers because of it. They are the ones who observe those reg. ed. interactions that I'm so curious to know about. They are generally the people who are responsible for teaching my child proper interactions with typical peers - an essential skill in my opinion. They are the ones that care for my child's personal cares - a very important and personal part of my child's day. A great para is priceless and often under appreciated.
8. It was thirty years ago when our son Chad moved in with us. Obviously special ed. has changed quite a bit from those days. One of the things that has changed and yet not changed is integration. In elementary school, the early years there is a reasonable amount of integration. As the years go by it lessens and in some cases becomes nearly non-existent. When Chad was in high school in the early 90's he played the bass drum in the regular school band. It was not by any means a big fight for that to happen. We just said he loved music could he do something in band and the spec. ed. teacher made it happen. It was wonderful. From what I've seen I'm thinking that would be quite the achievement these days. We seem to be much happier with keeping special ed. students in their own space and away from reg. ed. students. During lunch, to my knowledge, my kids are at a table with a para and at least one other SPED student. This is counted as integration time. Knowing what my kids look like when they're eating, it's not what I would consider really prime time for making relationships with reg. ed kids. Sometimes they gross me out when they're eating and I'm quite used to it. It's not exactly the time their best foot is forward. I assume some, if not all, of it is cost effectiveness, which teachers have no control over. When Chad went to band a para went with him. Now, any integration that happens is never one on one, therefore sort of negating the whole concept of having our kids form relationships with typical peers. It's difficult enough when they need an adult close by, but if they have a SPED peer there too, what typical kid is going to approach them then. I'm sure some do, but it would be the extreme exception.
9. Holistic - this may sum up my ideal view of special education, but, unless a holistic approach is taken our kids will not be prepared for adult life which is, after all, the goal. All of my special ed. kids are adopted and many came from difficult situations, so that's where I'm starting from. However, I believe this is true of all SPED kids. Physical, emotional, intellectual and social development does not happen individually. It happens when the child is taken as a whole. If my medically fragile child is recovering from pneumonia it may not be the best time to start a new communication program. If my child has a meltdown at school it may not be the best time to move desks. If you want to work on social skills get them out of the classroom and into a regular ed. room and work on those skills. Don't sit in a private room and make up a pretend conversation - that's not the real world and they may not be able to transfer those skills from a made up situation to a real world situation.
If we want them to learn bathroom skills then boys need a male para to go with them. If you can't provide that, then they are not going to learn those skills at school - period. Every skill they learn should be multi-layered. Learning the value of money should be taught more because they need to learn to follow directions and speak clearly and learn personal space. The likelihood that they will ever pay for something on their own with cash, in my experience, is next to nothing. How many of us do that anymore? Someone else will handle their funds and no cash will exchange hands. This is even more true as time goes on. Therefore if those skills are being taught it is because of the side skills they can learn with them - social skills, personal space, speak slowly and clearly, stand still, make eye contact, listen, be respectful, follow directions etc. I can tell you from my experience if those skills are not in tact no one cares if your kid can read, write, tell time, or count money. They don't want them around and there's no chance a company is going to hire someone without some decent social skills. Some of the quirks people find charming in kids, not so much in adults. Our kids need even more time to learn adult behavior - like from the very beginning. Everything takes them longer to learn, there is no time to waste.
10. One last point. Most teachers know that parents often get the brunt of our kid's attitudes when they've worked so hard at keeping it together all day long. They're exhausted by the emotional energy of it all and can't wait to get home and let loose. Please remember that you often see the absolute best my kid has to offer and we get the leftovers to deal with at home. Often between dealing with behavior issues and working on personal care skills, table manners, social skills, going to special olympics, sports, church activities or music lessons and the emotional baggage they are carrying - we are exhausted. I'm sure that there are some parents who welcome homework for their kids. For us, it is often too stressful. I also put homework under the category of "independent". My older elementary typical kid does not need my help or gets help from friends. My SPED kids will never be able to do their homework independently. This often feels like I have homework to do and I'm often less than thrilled to have homework, especially when it inevitably will cause a massive meltdown. This is another area where it helps if you can put yourself into our shoes. Imagine the day you just had at work and then picture yourself going home to spend the evening with a cranky, if not completely belligerent kid who just wants to play and your job is to call them inside or away from their game and sit down - again - to do paperwork. How many of our kids are already struggling to sit still at school? I have a kid who generally has to stand at the dinner table because he just can't sit anymore after sitting - all - day - long. That is just asking too much. Flexibility is essential in parenting, as it is in teaching our kids and that should include the flexibility to just say no to homework when their mental health, as well as our own, is at stake. We need to have some time to positively connect with our kids before we kiss them goodnight. If that means no homework - then so be it.
My hope with this blog is not to offend or even call SPED professionals to task. I have the utmost respect for most of the professionals my children have encountered and I hope they know that. It is my attempt to express my parental opinion - mine, not every parent's opinion. Most of my kid's professionals have been just that - truly professional. Not perfect, heaven forbid that would require me to be a perfect parent and that's way too much pressure. I'm thrilled when I know my kids have a teacher who is optimistic, energetic, creative, and flexible. What more could I ask for. There's nothing better than sending your child on their school bus every day knowing they will have the best day possible because from the time they're greeted on the bus until the time they get back on that bus they will be with people who are loving on them all day - no matter what kind of day they have. For all of you, I will be eternally grateful.
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