A friend of mine over on Facebook shared this post from Scary Mommy's site. For those who don't feel like clicking through, it's a wonderful "heart to heart" post regarding labeling children and how, whether you like it or not, if you kid needs a label, your kid needs a label.
And I'm 157% behind her on this. Because I've dealt with the system both with and without a label and let me tell you, having that diagnosis, that "label" makes a world of difference.
I remember the days before Pete got his ADHD diagnosis, even before he got his SPD diagnosis. Days of wondering when the next phone call would come because of his bad behavior in his Parents' Day Out program. Wondering why he didn't like almost any food. Worrying about temper tantrums whenever we went out, or worrying that he would take his clothes off in the middle of the store. Afraid that I was a bad parents because his behavior was so bad, and desperate to know what I had done differently between Teddy and Peter. The fears that he'd never be successful in school because he was so far behind, academically and socially, what other kids his age were doing and how they were acting. Despair that I would have to figure out how to home school him, because it would be his only option.
I remember the hope I had when we got into the Regional Intervention Program. The tools they gave me made me feel so much more secure in what I was doing, even though the behavior problems were still there. He was actually worse behaved on our last day at RIP than we were on our first. But, even though there were the fears that he would still have problems in school, I knew that I was doing my best at home and I knew how to best let him know what was expected.
I remember talking to his doctor next about how far behind he was developmentally. He wasn't holding a pencil as well as his peers, he wasn't quite as social, and didn't have the knowledge that he should have by then. An evaluation at the Children's Rehab was in order, and that's where I found out about Sensory Perception Disorder (SPD). I worked with his therapist on ways to make him more comfortable, to find where his limits were and to give him a little more of what he needed for starting school.
I remember being convinced that I had everything I needed to get him the help he would need at school. I had a diagnosis, I'd requested a teacher both he and I already knew and I was ready to fill out an IEP for him. But the SPD label wasn't enough. The AAP (American Academy of Pediatricians) didn't recognize SPD as it's own separate disorder. Because it was seen so often with children in the autism spectrum and children with ADHD, they bundled it as an effect rather than a disease itself. So I had to fight to get his IEP meeting set up. He had to go through a lot of the same testing again to get the considerations that he needed, like having speech therapy or having certain items in the classroom to help when he had sensory overload. The school wanted to help, but their hands were tied because I didn't come in with the proper label. (Though his teachers were fantastic in keeping in touch with me and helping work out ways to help him be in a position to learn.)
I remember his first suspension, when his lack of impulse control caused him to poke a friend in the chest with a pencil. Not because he was angry or out of control but because he wanted to find out what would happen. The anger fits, the taking off his shoes and chewing on his toes while sitting on the rug became worries of another time. I knew that something more needed to be done. That the IEP we had and the label of SPD wasn't enough.
I remember hearing back from his doctor when I told her about this and hearing the words "He may have ADHD. If you and his teacher will fill out this paperwork, we can find out." There was fear there. ADHD brought visions of children drugged to zombiehood to mind, memories of "Ritilan Kids" when I was a girl. I didn't want my wonderfully creative boy to lose that creativity and become someone other than himself. But I knew that something needed to be done. So I passed the paperwork on to his teacher. I filled out the paperwork myself. And I turned them all in to his doctor, waiting to hear the verdict.
I remember a small sigh of relief, interspersed with the fear of "what now?!" when she told me that, based on the answers from his teacher and I, that he was ADHD. And that we would need to meet to talk about the best medication to put him on.
I remember how much easier things got after that. I was able to show the school an official diagnosis of ADHD and have it put into his file. The label would follow him all through his school career, but it would mean he'd be able to get whatever help he'd need instead of having to fight over and over for it. I was able to get him on Adderall, a drug that slowed his brain down enough that he became a fantastic student but didn't dull the creativity in the least. Finally, we'd found the answer. And if the answer came with a label, that wasn't what was important. What was important was the answer.
We all have labels. One of Pete's is ADHD. One of mine is Depression Sufferer. One of Teddy's is Gifted One of Rich's is Funny Guy. But labels are just one part of what makes us who we are. I can also label Pete as Creative. Mine as Mommy. Teddy's as Quick Tempered. Rich's as Trivia Master. The individual parts don't matter as much as the whole does. And if anyone feels like that one label can define my child, me, or anyone else, they aren't someone whose opinion matters anyway.
And a lot less fun than the other options.
Showing posts with label spd. Show all posts
Showing posts with label spd. Show all posts
27 April 2015
15 August 2014
Looking at the World Through a Different Filter
For a long time, we just thought that Pete was a difficult child. He would throw temper tantrums if he was interrupted doing what he wanted to do. He would run around, climbing on everything like a monkey. He laughed at inappropriate times. He was very picky about the foods he ate. He never wanted to get dressed, sometimes running outside in our apartment complex naked. He licked and bit a wide variety of things he shouldn't have. He still sucked his thumb.
Because of his behavior, he was told that he wouldn't be able to come back to the Parents' Day Out that he'd been going to after his fourth year. It just wasn't a good fit for him any more. I tried the Regional Intervention Program. It gave me plenty of tools for dealing with him when he was driving me nuts, but he was still throwing fits when we graduated. He'd done a little better at the new PDO he went to the year before kindergarten, but he still had times when he would act out, or get out of control. I wasn't sure where to go next, and the thought of him entering kindergarten scared me to death.
When we went for his 5 year Well Check Up, the doctor noticed that he was having some problems with his fine motor skills and suggested we have him evaluated in Pediatric Rehab. So appointments were made, then rescheduled. I took Pete in for an hour long evaluation. I mentioned, along with the fine motor skills, some of the other behaviors that concerned me - the dislike of wearing clothing, the way he would chew on things that weren't food, how he'd get out of control sometimes and it was hard to get him calmed down. After the evaluation was done, the therapist told me that, while she couldn't say for certain until all the scores were added up, she was pretty sure that Peter had Sensory Processing Disorder and they would most likely see him for therapy.
As we started therapy, I started to read up more on SPD. What did it mean? How did it effect Pete? Where did it come from? What I found out is that SPD is very controversial in the medical community. The APA doesn't want doctors using it as a diagnosis because there is still so much unknown about it, and the symptoms of SPD were most often found in children that had other issues as well, such as autism, aspergers or ADHD. But there were a lot of therapies and tools out there to help children, regardless of what the diagnosis ended up being, to get the sensory input they need.
Pete is a sensory seeker. (Though he doesn't fit all the items on that list, he does fit some of them.) He always wants to snuggle with me or his dad or his brother. He needs that closeness whenever he's doing something. He has the TV loud a lot of the time. He crashes into things because he says it "feels good". He has to have something in his mouth, especially when he's upset.
The problem, of course, is that SPD isn't an official diagnosis. So in trying to get help for him at school, we're trying to figure out how to make his case fit so he'll get the help he needs. I'm very lucky that his teacher is someone I know well and more than willing to work with me on things that will help him. I'm also meeting with the school to see what we can do to get an IEP or a 504 in the works for him. I'm very lucky that we are part of an excellent school with caring staff and teachers.
It amazes me, though, how much it's making me look at Peter differently. No. Not look at Pete differently, but at the way he sees the world. His teacher noticed that every time they are walking in the hall, he has to touch the wall. It's a byproduct of not having a good handle on the spatial world around him. Today, I realized that he has an aversion to heat. He needs bath or shower water several degrees cooler than any of the rest of my family. If I have to wash Plo, he wants to have him out of the dryer long enough to be "cool" before he'll take him (or he'll get upset with me because I dared make Plo warm). He lets his food cool almost completely before eating it. Ice cream and ice pops are favorites. Hot chocolate is not. I've noticed that when he and Teddy fight, it's most often because Pete is getting too close, not accepting Teddy's personal space. And that could be that desire for touch. (Or it could be that he's using his Little Brother powers to annoy the Big Brother.) He doesn't like socks with his shoes. Certain pieces of clothing that I think are comfortable are too scratchy. The world is a very different place for my youngest, and I'm just learning to see how different.
It's hard, sometimes, to change from getting frustrated because I think Pete's just being difficult to realizing that it could be part of his sensory issues. For so long, it was just Pete being Pete, always making things difficult. And sometimes, I suspect he still is. (Especially when he tries to tell me he doesn't know how to put on clothes and/or shoes I've seen him don 30 times before without any help.) But I'm trying to teach myself to stop and look at the world with Pete's senses first before overreacting. That maybe, just maybe, there's a pattern here and I can decode it to make life just a little easier for my sensitive boy.
Because of his behavior, he was told that he wouldn't be able to come back to the Parents' Day Out that he'd been going to after his fourth year. It just wasn't a good fit for him any more. I tried the Regional Intervention Program. It gave me plenty of tools for dealing with him when he was driving me nuts, but he was still throwing fits when we graduated. He'd done a little better at the new PDO he went to the year before kindergarten, but he still had times when he would act out, or get out of control. I wasn't sure where to go next, and the thought of him entering kindergarten scared me to death.
When we went for his 5 year Well Check Up, the doctor noticed that he was having some problems with his fine motor skills and suggested we have him evaluated in Pediatric Rehab. So appointments were made, then rescheduled. I took Pete in for an hour long evaluation. I mentioned, along with the fine motor skills, some of the other behaviors that concerned me - the dislike of wearing clothing, the way he would chew on things that weren't food, how he'd get out of control sometimes and it was hard to get him calmed down. After the evaluation was done, the therapist told me that, while she couldn't say for certain until all the scores were added up, she was pretty sure that Peter had Sensory Processing Disorder and they would most likely see him for therapy.
As we started therapy, I started to read up more on SPD. What did it mean? How did it effect Pete? Where did it come from? What I found out is that SPD is very controversial in the medical community. The APA doesn't want doctors using it as a diagnosis because there is still so much unknown about it, and the symptoms of SPD were most often found in children that had other issues as well, such as autism, aspergers or ADHD. But there were a lot of therapies and tools out there to help children, regardless of what the diagnosis ended up being, to get the sensory input they need.
Pete is a sensory seeker. (Though he doesn't fit all the items on that list, he does fit some of them.) He always wants to snuggle with me or his dad or his brother. He needs that closeness whenever he's doing something. He has the TV loud a lot of the time. He crashes into things because he says it "feels good". He has to have something in his mouth, especially when he's upset.
The problem, of course, is that SPD isn't an official diagnosis. So in trying to get help for him at school, we're trying to figure out how to make his case fit so he'll get the help he needs. I'm very lucky that his teacher is someone I know well and more than willing to work with me on things that will help him. I'm also meeting with the school to see what we can do to get an IEP or a 504 in the works for him. I'm very lucky that we are part of an excellent school with caring staff and teachers.
It amazes me, though, how much it's making me look at Peter differently. No. Not look at Pete differently, but at the way he sees the world. His teacher noticed that every time they are walking in the hall, he has to touch the wall. It's a byproduct of not having a good handle on the spatial world around him. Today, I realized that he has an aversion to heat. He needs bath or shower water several degrees cooler than any of the rest of my family. If I have to wash Plo, he wants to have him out of the dryer long enough to be "cool" before he'll take him (or he'll get upset with me because I dared make Plo warm). He lets his food cool almost completely before eating it. Ice cream and ice pops are favorites. Hot chocolate is not. I've noticed that when he and Teddy fight, it's most often because Pete is getting too close, not accepting Teddy's personal space. And that could be that desire for touch. (Or it could be that he's using his Little Brother powers to annoy the Big Brother.) He doesn't like socks with his shoes. Certain pieces of clothing that I think are comfortable are too scratchy. The world is a very different place for my youngest, and I'm just learning to see how different.
It's hard, sometimes, to change from getting frustrated because I think Pete's just being difficult to realizing that it could be part of his sensory issues. For so long, it was just Pete being Pete, always making things difficult. And sometimes, I suspect he still is. (Especially when he tries to tell me he doesn't know how to put on clothes and/or shoes I've seen him don 30 times before without any help.) But I'm trying to teach myself to stop and look at the world with Pete's senses first before overreacting. That maybe, just maybe, there's a pattern here and I can decode it to make life just a little easier for my sensitive boy.
17 July 2014
3 Weeks and Counting
3 Weeks from today, my youngest will start kindergarten. And I'm not sure I'm ready.
It's not for the reasons you'd think. It's not the thought of him growing up, or being away from me all day. I'm used to that from his Parents' Day Out program. Granted, this is 5 days a week instead of 2, but I know that the consistency of being in a 5 day a week routine is going to be nothing but good for him. Instead, I'm worried because... well, it's Pete. And he's a very different kid than Teddy, with a bunch of different issues.
It started with behavior problems and other concerns in his PDO program. He was combative with his teachers, he yelled and screamed, didn't learn his letters, couldn't hold a pencil right. We thought it was mostly behavior rather than any kind of developmental delay, so we looked into the Regional Intervention Program. It was highly recommended by both educators and other parents that I knew. And it WAS good for me. It gave me a lot more tools to deal with Pete when he got out of control. And Pete did learn a few things there. But by the time we "graduated", he was still having as many problems as he'd had before we started. So I wasn't sure where to go next.
I met with his pediatrician, and she had expressed some concerns about his fine motor skills and suggested we go to Pediatric Rehab. Ok, I figured. Let's see what we can do there. It took a couple months before they could see us and, as they were testing him, we found out that most of his problems weren't completely from stubbornness or bad parenting, but because he actually had something wrong with him - Sensory Processing Disorder. Basically, he needed sensation. He wasn't getting it the same way most of us do, not feeling things as strongly (physically) or able to feel comfortable in the space around him. So he pushed the limits to try to create the sensations he was craving. Sitting still in a chair was tough on him. He needed to wiggle and move because his body was telling him that's what had to happen. He ran into walls at full speed so he could figure out where the boundaries were. He made loud noises and acted silly because that's what he felt he needed to do. So what we needed to do was find a way to get him those things without being disruptive. So we started Occupational Therapy with him once a week, both for the SPD and because his fine motor skills weren't where they should be at 5 1/2.
They've given me some great ideas for helping him deal with SPD. Ways to help him get out the need to be active without being disruptive. One of the things I do with him is have a "Push War". He pushes against my hands as hard as he can, trying to push them back to my chest. After we do it a couple of times, he's able to calm down a little. Also, I try to give him "heavy work", like helping push the (full) laundry basket across the floor, or having to run to the dining room and bring me back one thing after another. These little things are helping.
What worries me, though, is what will happen when school starts. I'm trying to get an IEP or a 504 Plan for him so if he needs help with various things, we'll already have a plan in place for him to get that help. Today, after many phone calls that weren't returned, I stopped by the school to talk with someone about it. I need a diagnosis from a doctor - what they found at rehab just won't cut it. And then, with the diagnosis, I need to bring it to the school and get the paperwork started. Then they'll have a meeting to discuss it, and the school psychologist will meet with Pete to test him again. Only after all of that happens will be (hopefully) get something in place for him. So I have an appointment with his pediatrician next Tuesday to see what I need to do to get a doctor's diagnosis. I'm afraid that I'm going to have to go somewhere else to get him diagnosed and who knows how long that wait will be. I'm worried that it will be October or December by the time we can finally get something in place for him, and by then, he'll be labeled a "problem child".
The one thing going for me is that I know his teacher this year. It's the same teacher that Teddy had in kindergarten. I have a good rapport with her, and her teaching style is one that Pete responds to positively. (It's very similar to the style his current teacher at PDO has, which has worked wonders for him over this last year.) But for all that I know she'll be willing to work with me on some things, I also know that her hands will be tied when it comes to how much leeway she can give him for things. She will (I hope) understand that he's not meaning to be a problem. And I know she'll get in touch with me if there are problems. But the fear that he'll not get what he needs soon enough is one that won't leave me.
So now I wait, hope and pray. Wait for school to start and see if he'll be ok. Hope that we can get everything we need for him to succeed at school before it starts. And pray that he'll be able to thrive because he's got who and what he needs behind him.
It's not for the reasons you'd think. It's not the thought of him growing up, or being away from me all day. I'm used to that from his Parents' Day Out program. Granted, this is 5 days a week instead of 2, but I know that the consistency of being in a 5 day a week routine is going to be nothing but good for him. Instead, I'm worried because... well, it's Pete. And he's a very different kid than Teddy, with a bunch of different issues.
It started with behavior problems and other concerns in his PDO program. He was combative with his teachers, he yelled and screamed, didn't learn his letters, couldn't hold a pencil right. We thought it was mostly behavior rather than any kind of developmental delay, so we looked into the Regional Intervention Program. It was highly recommended by both educators and other parents that I knew. And it WAS good for me. It gave me a lot more tools to deal with Pete when he got out of control. And Pete did learn a few things there. But by the time we "graduated", he was still having as many problems as he'd had before we started. So I wasn't sure where to go next.
I met with his pediatrician, and she had expressed some concerns about his fine motor skills and suggested we go to Pediatric Rehab. Ok, I figured. Let's see what we can do there. It took a couple months before they could see us and, as they were testing him, we found out that most of his problems weren't completely from stubbornness or bad parenting, but because he actually had something wrong with him - Sensory Processing Disorder. Basically, he needed sensation. He wasn't getting it the same way most of us do, not feeling things as strongly (physically) or able to feel comfortable in the space around him. So he pushed the limits to try to create the sensations he was craving. Sitting still in a chair was tough on him. He needed to wiggle and move because his body was telling him that's what had to happen. He ran into walls at full speed so he could figure out where the boundaries were. He made loud noises and acted silly because that's what he felt he needed to do. So what we needed to do was find a way to get him those things without being disruptive. So we started Occupational Therapy with him once a week, both for the SPD and because his fine motor skills weren't where they should be at 5 1/2.
They've given me some great ideas for helping him deal with SPD. Ways to help him get out the need to be active without being disruptive. One of the things I do with him is have a "Push War". He pushes against my hands as hard as he can, trying to push them back to my chest. After we do it a couple of times, he's able to calm down a little. Also, I try to give him "heavy work", like helping push the (full) laundry basket across the floor, or having to run to the dining room and bring me back one thing after another. These little things are helping.
What worries me, though, is what will happen when school starts. I'm trying to get an IEP or a 504 Plan for him so if he needs help with various things, we'll already have a plan in place for him to get that help. Today, after many phone calls that weren't returned, I stopped by the school to talk with someone about it. I need a diagnosis from a doctor - what they found at rehab just won't cut it. And then, with the diagnosis, I need to bring it to the school and get the paperwork started. Then they'll have a meeting to discuss it, and the school psychologist will meet with Pete to test him again. Only after all of that happens will be (hopefully) get something in place for him. So I have an appointment with his pediatrician next Tuesday to see what I need to do to get a doctor's diagnosis. I'm afraid that I'm going to have to go somewhere else to get him diagnosed and who knows how long that wait will be. I'm worried that it will be October or December by the time we can finally get something in place for him, and by then, he'll be labeled a "problem child".
The one thing going for me is that I know his teacher this year. It's the same teacher that Teddy had in kindergarten. I have a good rapport with her, and her teaching style is one that Pete responds to positively. (It's very similar to the style his current teacher at PDO has, which has worked wonders for him over this last year.) But for all that I know she'll be willing to work with me on some things, I also know that her hands will be tied when it comes to how much leeway she can give him for things. She will (I hope) understand that he's not meaning to be a problem. And I know she'll get in touch with me if there are problems. But the fear that he'll not get what he needs soon enough is one that won't leave me.
So now I wait, hope and pray. Wait for school to start and see if he'll be ok. Hope that we can get everything we need for him to succeed at school before it starts. And pray that he'll be able to thrive because he's got who and what he needs behind him.
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| Graduation Day from PDO |
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