How to take breaks with a child whom has a severe processing disorder?

[Mom2J112903]

So J is not your typical child, he not only has Gastroparesis (his stomach is paralyzed for the most part) but he also has SPD (Sensory Processing Disorder), with these two combined, it can be very interesting around here.

 

We went to Disney for eight days, we ended up taking 10 days off of school. Even his OT was practically in tears yesterday, things have gotten that "off" since we returned. His handwritting is :001_huh:, he knows and acknowledges that he wrote a letter wrong, erases, but continues to write it incorrectly. That is just the tip of the ice berg, his processing has decreased *so* greatly it is heartwrenching.

 

What is really frustrating DH is J's retention of Math facts. Some he still knows with amazing speed, others it is like we never learned them. Then he has trouble with addition of 1-but he knows his doubles plus 1 with amazing ease. He even sits there and says "5+5=10+1=11" so he obviously understands the concept of adding 1, but when you ask him to add 3+1 (for example) he can not do it.

 

Right now we both agree there can not be such a thing as a week long break, much less take a month off in May or June as orginally planned. *I* need a break though! DH does not do anything with the homeschooling, he says that is my responsibility and honestly, he does get frustrated with J since he does not understand a lot of what J goes thru. I don't expect him to know my son like I do, I have J 24hrs a day-he works and is not home a lot.

 

The OT has some ideas, but that part of me is still so worried, what if it doesn't work, then what?

[FlutterbyMommy]

(((Mom2J112903)))

 

I know this is so frustrating for you. You are doing a great job of taking J's needs into consideration and adapting. That is so important!

 

I can relate somewhat because my DD struggled with some basic things while totally getting higher level things. For instance, she might confuse a K and an R but will decode rack.

 

Our OT tells me it is a lateralization issue and it will be overcome in a few years. Then there is VT and it may be her convergence insufficiency. What is the cause exactly, I don't know. I just continue with the OT, VT, and working on reading at home and reminding her of the letter with song and practing drawing them in different ways (or jumping on them, etc.).

 

Now VT, I believe, has helped tremendously to correct that with us. She has recently gone through upper and lower case again without any issues. However, it could get somewhat jumbled again.

 

Perhaps there are other approaches at home you can take, like those mentioned by the ladies on this forum, that may help your sweet J to retain some of that stuff that keeps getting lost. Has he been tested by a developmental optometrist? Have you tried some of the interesting programs the ladies here describe? Maybe one of these things might help.

 

But beyond figuring out what is happening and what will help J, I would say YOu need breaks and YOU need to take care of YOU. You are obviously devoted. Remeber, you can't be your best for J if you aren't taking care of you.

 

Don't worry about keeping firm to a schedule to cover x, y, and z. Your little one is 7. You have time on your side and those breaks can be essential for everyone!

 

I am sure more experienced mothers will have terrific ideas and advice. I just want you to know you are not alone and to remind you that you are important to be cared for as well :tongue_smilie:.

[Mom2J112903]

Thank you very much for your insight.

 

Yeah, J can read some spanish (colors, months, numbers) and can spell two grade levels above his own, but his handwritting right now has got us going :001_huh:

 

Yes, J did his letters in shaving cream yesterday, which reminds me when I send DH out for noodles he needs to get a can of shaving cream for handwritting practice today.

[chiguirre]

His handwritting is :001_huh:, he knows and acknowledges that he wrote a letter wrong, erases, but continues to write it incorrectly.

 

What is really frustrating DH is J's retention of Math facts. Some he still knows with amazing speed, others it is like we never learned them. Then he has trouble with addition of 1-but he knows his doubles plus 1 with amazing ease. He even sits there and says "5+5=10+1=11" so he obviously understands the concept of adding 1, but when you ask him to add 3+1 (for example) he can not do it.

 

 

 

I'll give you a couple of tips that work with ds10. When he gets stuck on forming a letter (and, yes, he still gets stuck on forming a letter) I help him do it hand over hand. That usually breaks the mental block and he can do it fine for the rest of the lesson.

 

Ds jumbled his math facts when we went past the facts to 10. It was as if his memory capacity was exceeded and they all melded together. We had to start over with a different program (MUS) and try again. Ds is better now and can add with regrouping, but I think he'll need to use a calculator eventually.

 

It's been hard to accept that ds can be bright in some ways and so unable to master basic skills at the same time.

 

:grouphug:

[Tokyomarie]

As frustrating as it can be to see a child seem to "lose" what they knew before a break, it's still important to take breaks every now & again. Don't forget that raising any child is a marathon, not a sprint, and it is that much more so for raising a special needs child. You need breaks for your own sanity or you will burn out. The challenge is to be intentional about how you do the breaks. One tip is to allot 30-45 minutes of review each day or several days in a week of a vacation trip. You still get your vacation, with the different scenery it offers but the child may stay fresher on their current learning.

[PeterPan]

Another alternative is to give vacationy schoolwork. For instance when we went to Alaska this year my dd kept a journal with little notes (we're talking a list of words, nothing fancy, lol). Honestly, I'm not sure I'm making the connection with the diagnoses you're listing and the things you're describing. Forgetting letter formation isn't caused by SPD or stomach paralysis. Does he have more diagnoses? My dd continued to forget formation of letters for many years (nuts, I'm not sure she's solid on all of them right now!), and it's a visualization/visual processing issue. You could have more issues going on that you haven't yet identified. I would start breaking the symptoms down and making sure you've identified the cause of each one. These practitioners all seem to specialize so much. It's sort of like you just work your way through all of them, lol.

 

As the others said, at some point you do just stop, take your break, and acknowledge that there's going to be some backtracking and reteaching when you come back to it. We used SWR for years, and although it prescribes two times through the list, it amazed me how many more times my dd needed to work through them for things to get solid. Some kids just need that. Don't burn yourself out. He's not going to be a kid who gets things with one time through. SWR has an interesting way to think of it: teach through everything this year, then go back through the 2nd half of it again next year but at twice the speed. That way you review (but faster because it's familiar, he's older), and you keep going. You may have to extend that to double or triple or whatever through over the years.

[Mom2J112903]

Another alternative is to give vacationy schoolwork. For instance when we went to Alaska this year my dd kept a journal with little notes (we're talking a list of words, nothing fancy, lol). Honestly, I'm not sure I'm making the connection with the diagnoses you're listing and the things you're describing. Forgetting letter formation isn't caused by SPD or stomach paralysis. Does he have more diagnoses? My dd continued to forget formation of letters for many years (nuts, I'm not sure she's solid on all of them right now!), and it's a visualization/visual processing issue. You could have more issues going on that you haven't yet identified. I would start breaking the symptoms down and making sure you've identified the cause of each one. These practitioners all seem to specialize so much. It's sort of like you just work your way through all of them, lol.

 

As the others said, at some point you do just stop, take your break, and acknowledge that there's going to be some backtracking and reteaching when you come back to it. We used SWR for years, and although it prescribes two times through the list, it amazed me how many more times my dd needed to work through them for things to get solid. Some kids just need that. Don't burn yourself out. He's not going to be a kid who gets things with one time through. SWR has an interesting way to think of it: teach through everything this year, then go back through the 2nd half of it again next year but at twice the speed. That way you review (but faster because it's familiar, he's older), and you keep going. You may have to extend that to double or triple or whatever through over the years.

 

It is a *processing disorder* plain and simple. I mentioned his GP because you add in a physically sicky child with a child whom has all over processing problems and you get J.

 

That is all I have nice to say. I should have just kept this to myself and the OT team whom know what they are talking about.

[PeterPan]

Wow, all I meant was to say you're not the only one to have had things like that happen, even if they're not as severe. Sorry you were offended.

[Renee in NC]

It is a *processing disorder* plain and simple. I mentioned his GP because you add in a physically sicky child with a child whom has all over processing problems and you get J.

 

That is all I have nice to say. I should have just kept this to myself and the OT team whom know what they are talking about.

 

No need to be rude. There are a lot of us here who have been down this road - isn't that why you are asking? The OT says its one thing. The psych says it is another. The DO says it is something else. Really, they are simply diagnosing the symptoms as they relate to their specialty.

 

My 9yo has multiple diagnosis from different practitioners depending on their specialty. They are diagnosing based on the same set of symptoms. The global problem is unknown at this time.

 

As another example, I have sensory issues and my ds is diagnosed with Sensory Processing Disorder by the OT. However, once the psych diagnosed him ADHD and put him on stimulants, his sensory issues went away (as did mine on the same med.) In addition, he doesn't clinically meet the criteria for ADD (any type) but there is no question that stimulants have made a huge difference. Another practitioner may have called him Bipolar or Oppositional-Defiant or something else - I don't care what they call it as long as his symptoms are alleviated. I am hoping that the neuropsych will be able to give us a definitive answer.

 

Each practitioner has to give a diagnosis, using a code that the insurance company will pay for treatment for. So, the OT says "Processing Disorder" because she knows that most insurance companies will pay for it (even if you aren't using insurance, this is what they do.) Names mean nothing, really.

 

ElizabethB was simply asking if you had looked into vision issues due to the handwriting/visual processing issue. Nothing more.

 

My question is: have you had a full work up done? IQ/Achievement, VMI tests, etc.? OT is just one part of what many LD kids need - a developmental optomotrist may be able to help as well.

[PeterPan]

Yes, what Renee said is what I meant. SPD is sensory stuff (vestibular, proprioception, etc.) and doesn't account for the visual and auditory problems. An auditory processing problem or visual processing problem can be there as well. Our OT refers off to VT regularly for the things specific to visual processing. In other words you have MULTIPLE processing problems, not just one. And different people treat each thing.

 

Renee--That's interesting that your dc's sensory symptoms changed with the stimulants. I don't know what to think of that (how/whether that would apply to us, etc.), but it's definitely interesting.

Edited December 16, 2010 by OhElizabeth

[Renee in NC]

Yes, what Renee said is what I meant. SPD is sensory stuff (vestibular, proprioception, etc.) and doesn't account for the visual and auditory problems. An auditory processing problem or visual processing problem can be there as well. Our OT refers off to VT regularly for the things specific to visual processing. In other words you have MULTIPLE processing problems, not just one. And different people treat each thing.

 

Renee--That's interesting that your dc's sensory symptoms changed with the stimulants. I don't know what to think of that (how/whether that would apply to us, etc.), but it's definitely interesting.

 

Mine did, too. I have always been hypersensitive to touch and sound, but I am fine now! Ds was hyposensitive (the opposite!)

 

Stimulants also made it so he could learn to read and do math (at least somewhat) and quieted his extreme rage and aggression (things not necessarily ADD-related.)

 

I'll be interested to see what the neuropsych says.

[Mom2J112903]

A *PROCESSING* disorder is just that a *PROCESSING* disorder, it encompesses EVERY part of processing.

 

J does *not* have LD, he has been tested numerous times and he has a *processing* disorder which is intestified by his other physical problems he has.

 

I just wanted to know how you can take a break with a child whom needs constant interaction and re-inforcement.

[VinNY]

A *PROCESSING* disorder is just that a *PROCESSING* disorder, it encompesses EVERY part of processing.

 

J does *not* have LD, he has been tested numerous times and he has a *processing* disorder which is intestified by his other physical problems he has.

 

I just wanted to know how you can take a break with a child whom needs constant interaction and re-inforcement.

 

well if that is the case, he would be exhibiting poor auditory, visual and sensory processing..my dtr suffers from this PROCESSING disorder as you say as well as dyspraxia..around here it can seem like Groundhog's Day especially teaching math and reading. Took us three years to get to 1st grade math, reading and spelling(she should be in 4th). Don't get me started with reversals, that is what PROCESSING disorder looks like and the answer to your question is no you can't take a break. I brought workbooks with me on vacation, I bring school with me in the car..we school every morning in the summer and every Saturday. I was fortunate enough this year to have my local school district provide resource room every afternoon(5x a week) so she would get more reinforcement.

 

So if you are getting burnt out, hire a tutor, ask the school for help, ask a neighbor do whatever but don't take it out on these great ladies on this board.:chillpill:

[Mom2J112903]

well if that is the case, he would be exhibiting poor auditory, visual and sensory processing..my dtr suffers from this PROCESSING disorder as you say as well as dyspraxia..around here it can seem like Groundhog's Day especially teaching math and reading. Took us three years to get to 1st grade math, reading and spelling(she should be in 4th). Don't get me started with reversals, that is what PROCESSING disorder looks like and the answer to your question is no you can't take a break. I brought workbooks with me on vacation, I bring school with me in the car..we school every morning in the summer and every Saturday. I was fortunate enough this year to have my local school district provide resource room every afternoon(5x a week) so she would get more reinforcement.

 

So if you are getting burnt out, hire a tutor, ask the school for help, ask a neighbor do whatever but don't take it out on these great ladies on this board.:chillpill:

 

The bolded part is what I feel like right now. Reading not so much, but math especially.

 

We usually school on Saturday's just because DH works Saturday's.

 

It just irks me when I state a processing disorder and people do not understand after time and time again. That is all. Yes, I am stressed and when people don't understand after being told time and time again, it irks me.

[Renee in NC]

The bolded part is what I feel like right now. Reading not so much, but math especially.

 

We usually school on Saturday's just because DH works Saturday's.

 

It just irks me when I state a processing disorder and people do not understand after time and time again. That is all. Yes, I am stressed and when people don't understand after being told time and time again, it irks me.

 

Sorry. I will refrain from posting again.

Edited December 17, 2010 by Renee in FL

[Mom2J112903]

Now J is in bed with a fever, sore throat, bruise from his allergy shot and flat red spots on his back. Yep, no school tommrow, so how on earth is one to keep up when a child has a processing disorder *and* physical health problems?!

 

Why did God in-trust me to this child?! I feel like I can not give him what he deserves.

[VinNY]

Now J is in bed with a fever, sore throat, bruise from his allergy shot and flat red spots on his back. Yep, no school tommrow,not necessarily..you can read to him, play a game so how on earth is one to keep up when a child has a processing disorder *and* physical health problems? things will get better..but slowly. My dtr just started reading cvc words this year and I know she will continue making strides but on her own timeline. How do YOU keep up? Well what helps to recharge your battery?You will need to find something to give you fuel for this journey. For me, besides prayer and living a sacramental life, I started walking and exercising. I take out my drawing pad and pastels or watch my favorite cooking show. I have other children, so I spend time with them. I make sure that my quiet time with my husband isn't spent with my obsessing about my dtr (which I did for a good two years)

 

Why did God in-trust me to this child?! I feel like I can not give him what he deserves.You can, you can't fix him but you can get yourself a good night's sleep every night, school in the morning, run to therapy, go to the doctors, make play dates ..."Start by doing what is necessary, then do what is possible, and suddenly you are doing the impossible." St Francis of Assissi:grouphug:

[Mom2J112903]

Now J is in bed with a fever, sore throat, bruise from his allergy shot and flat red spots on his back. Yep, no school tommrow,not necessarily..you can read to him, play a game so how on earth is one to keep up when a child has a processing disorder *and* physical health problems? things will get better..but slowly. My dtr just started reading cvc words this year and I know she will continue making strides but on her own timeline. How do YOU keep up? Well what helps to recharge your battery?You will need to find something to give you fuel for this journey. For me, besides prayer and living a sacramental life, I started walking and exercising. I take out my drawing pad and pastels or watch my favorite cooking show. I have other children, so I spend time with them. I make sure that my quiet time with my husband isn't spent with my obsessing about my dtr (which I did for a good two years)

 

Why did God in-trust me to this child?! I feel like I can not give him what he deserves.You can, you can't fix him but you can get yourself a good night's sleep every night, school in the morning, run to therapy, go to the doctors, make play dates ..."Start by doing what is necessary, then do what is possible, and suddenly you are doing the impossible." St Francis of Assissi:grouphug:

 

Thank you so very much. J is our only child, I comend families for having more than one child when one is special needs.

 

DH does want me to take some time, just for me, but I just don't know. He doesn't know J like I do, and yes, while he would be perfectly safe and happy with Daddy for a day or even a sitter for a few hours, I just can't do it right now. I know I need to but I just can't for some reason.

[Whereneverever]

 

Thank you so very much. J is our only child, I comend families for having more than one child when one is special needs.

 

DH does want me to take some time, just for me, but I just don't know. He doesn't know J like I do, and yes, while he would be perfectly safe and happy with Daddy for a day or even a sitter for a few hours, I just can't do it right now. I know I need to but I just can't for some reason.

 

Burning yourself out isn't going to help him, though- raising special needs kids isn't a race to the end, it's a marathon.

 

When he isn't feeling up to doing school at the table could you do a few minutes here and a few minutes there of review to keep him from back sliding?

[PeterPan]

I suggest you find a Gameboy or DS or whatever keeps him entertained and take him with you while you do something for yourself. Try massage. Most massage therapists will have a seating area where he can wait quietly, doing his thing. You can get a massage for an hour and have someone to talk with, doing something relaxing and good for yourself.

[Mom2J112903]

I suggest you find a Gameboy or DS or whatever keeps him entertained and take him with you while you do something for yourself. Try massage. Most massage therapists will have a seating area where he can wait quietly, doing his thing. You can get a massage for an hour and have someone to talk with, doing something relaxing and good for yourself.

 

J has a Leapster and a Tag Reading system, he enjoys them both :) Leaving him out of sight isn't an option and coming back with me for a massage or a pedicure isn't an option either as he is very socially shy, so he is literally a leach on me.

 

 

Burning yourself out isn't going to help him, though- raising special needs kids isn't a race to the end, it's a marathon.

 

When he isn't feeling up to doing school at the table could you do a few minutes here and a few minutes there of review to keep him from back sliding?

 

I wish I could but when J gets down it is not like your "normal" child with the sniffles. J gets down to the point he can hardly hold his head up, like he is right now. He went from playing like normal, had OT today to puking, fever and severely lethargic in a matter of 8hrs. The vomiting is part of his Gastroparesis (things can't move down, so they come up) so that is not a symptom of what is going on. Yet when he vomits like this, he becomes dehydrated *very* quickly. When J gets sick, he gets *sick* unfortunatly.

 

J doesn't like to make things easy on me :tongue_smilie:

[nevergiveup]

Not being snarky here, but how is a processing disorder not a learning disorder?

[chiguirre]

..around here it can seem like Groundhog's Day especially teaching math and reading.

 

:lol:

 

Now that I've wiped up the coffee from my screen, I've got to agree. There's a lot of slogging away at the same stuff day after day when you hs a sn kid.

 

I've found that tutors do help a lot. They've gotten ds10 over the hump in reading and now it's helping ds make real progress in math. Ds likes the attention from someone new and different and sometimes something clicks that he just couldn't get before.

[PeterPan]

Not being snarky here, but how is a processing disorder not a learning disorder?

 

Yeah, and when you don't like the term LD, you can call them 2E. Makes you feel better, means the same thing, lol.

[Whereneverever]

I wish I could but when J gets down it is not like your "normal" child with the sniffles. J gets down to the point he can hardly hold his head up, like he is right now. He went from playing like normal, had OT today to puking, fever and severely lethargic in a matter of 8hrs. The vomiting is part of his Gastroparesis (things can't move down, so they come up) so that is not a symptom of what is going on. Yet when he vomits like this, he becomes dehydrated *very* quickly. When J gets sick, he gets *sick* unfortunatly.

 

J doesn't like to make things easy on me :tongue_smilie:

 

I understand kids being incapacitated by illness- I have 2 SN kids. :) Just throwing things out there to try to help.

[Mom2J112903]

I understand kids being incapacitated by illness- I have 2 SN kids. :) Just throwing things out there to try to help.

 

And I appreciate that very much, I just wish J didn't make it so hard on me :tongue_smilie:

 

Not being snarky here, but how is a processing disorder not a learning disorder?

 

*I* do not feel it is because a processing disorder, IMO, can be over-came with OT and he *can* live up to his potentional (which is scary actually, this child is SMART when he has the right motivation/support) and *I* feel a LD is life-long, can not live up to potentional, etc. That and I feel when someone mentions a LD that my child is broken and he is not. Just a personal feeling I guess.

[peacefully]

.

[ondreeuh]

And I appreciate that very much, I just wish J didn't make it so hard on me :tongue_smilie:

 

 

 

*I* do not feel it is because a processing disorder, IMO, can be over-came with OT and he *can* live up to his potentional (which is scary actually, this child is SMART when he has the right motivation/support) and *I* feel a LD is life-long, can not live up to potentional, etc. That and I feel when someone mentions a LD that my child is broken and he is not. Just a personal feeling I guess.

 

What? I suggest you refresh your understanding of what a LD is, because my understanding is that a processing disorder certainly is one. And realize that when you dismiss LDs as something that means a child is broken, you are insulting every parent on this board who has a child with a LD.

[Mom2J112903]

What? I suggest you refresh your understanding of what a LD is, because my understanding is that a processing disorder certainly is one. And realize that when you dismiss LDs as something that means a child is broken, you are insulting every parent on this board who has a child with a LD.

 

That was never my intention, like I said that is *my* personal feelings.

[PeterPan]

Well mercifully we learn how to get over our feelings (which are very strong when we learn about problems) and come to accept them. That's really a bunch of stinkin CR*P to say a kid with LD's is broken. The most broken people I know are profoundly gifted, and some of the nicest are mentally retarded and have low IQ's. My cousin, an adult with mental retardation (they no longer call it that) and the mental capacity of an 8 yo (or less) had an astounding number of people at his funeral, way more than I will. He just touched people everywhere he went.

 

And yes, you're totally hiding your head in the sand on this. SPD is SENSORY. It has nothing to do with auditory or visual processing. A dc can be 2E, which means TWICE EXCEPTIONAL. You can be gifted or even PROFOUNDLY gifted and have processing disorders. In fact, she's not writing in this thread, but that's exactly the case with KarenAnne's dd. KarenAnne's dd is profoundly gifted and has auditory processing disorder. So your dc can be both.

 

You've got the typical view of what LD means. That's fine, but it will be more helpful to you if you start reading the books on LD's, learn the different aspects of processing, and try therapies or methods to help him. OT *isn't* going to resolve all his problems, and you're hiding your head in the sand if you think they are. If you think the OT said that, then either you misunderstood (over-read what the OT meant) or the OT is giving you a bill of goods.

 

Google 2E/twice exceptional and learn a little bit. Nobody is saying your dc is dumb when they say he has a processing disorder. We're saying narrow it down. SPD is sensory.

 

And if you really wanna rock your world, notice how many people post on both the Accelerated board *and* the Special Needs board. They occur together. LD doesn't = dumb. It's just learning DIFFERENCES. And btw, you may not realize that. A lot has changed in terminology, because words do mean so much. LD used to mean learning "disabled." Now it stands for learning *differences*. It's all semantics, but it's important because it alters how we view people. You don't say people *are* autistic, you say they *have* autism. Retarded is out, not sure what the new phrase is. Things are changing.

Edited December 18, 2010 by OhElizabeth

[Mom2J112903]

J has tested for both a SPD (which is severe) AND CAPD, VPD-the OTs we are working with have been trained in these areas. We have seen a lot of improvement but with his Gastroparesis flaring right now, things are regressing. If there were a DO around here, we would see them as well, but there is not. The OT team we have is amazing, it is a blessing they are here now.

 

I accept things more than people realize I do but I do not want someone telling me my son has a LD when it is a processing disorder. I just do not feel it is the same. Maybe I am "burrying my head" but no one is going to tell me my child is LD because everyone I know IRL (including the local homeschooling group) thinks of the child as "broken" and "slow" which J is not. There is just a different path to take to turn the light switch on is all.

 

I just want the best for my son, I want to be able to take a break when *I* need it and feel that he too deserves a break. I am seeing that this is not possible when we are dealing with what we are. It is not fair to J, not at all!

[VinNY]

J has tested for both a SPD (which is severe) AND CAPD, VPD-the OTs we are working with have been trained in these areas. We have seen a lot of improvement but with his Gastroparesis flaring right now, things are regressing. If there were a DO around here, we would see them as well, but there is not. The OT team we have is amazing, it is a blessing they are here now.

 

I accept things more than people realize I do but I do not want someone telling me my son has a LD when it is a processing disorder. I just do not feel it is the same. Maybe I am "burrying my head" but no one is going to tell me my child is LD because everyone I know IRL (including the local homeschooling group) thinks of the child as "broken" and "slow" which J is not. There is just a different path to take to turn the light switch on is all. Glad I don't live in your neck of the woods:glare:

 

I just want the best for my son, I want to be able to take a break when *I* need it and feel that he too deserves a break. I am seeing that this is not possible when we are dealing with what we are. It is not fair to J, not at all!

 

Nothing in life is fair..My whole family has sacrificed to get my dtr the help she needs..but darling I count my blessings. I focus on what she can do. Many people on this board are dealing with more difficult situations. If you want to focus on what is not fair just google what daily life is like for the tent people in Haiti .

[PeterPan]

Ok, then make absolutely sure you avoid all the helpful information about processing disorders on the LD sites. http://www.ldonline.org/article/6390

 

I'm speaking tongue in cheek, because I know you know better than that. The real issue is to educate people around you. I also think it's reasonable to be SELECTIVE about who you discuss things with and how, because, as you say, labels create instant connotations or stereotypes, whether they are accurate or not.

[ondreeuh]

Nothing in life is fair..My whole family has sacrificed to get my dtr the help she needs..but darling I count my blessings. I focus on what she can do. Many people on this board are dealing with more difficult situations. If you want to focus on what is not fair just google what daily life is like for the tent people in Haiti .

 

A lot of what you (J's mom) says really hits a nerve with me.

 

I have never, ever come across someone who treats my child as broken because he has difficulties learning. When his ADHD was out of control then I did get some flack, but the learning issues? Totally not an issue. His friends' parents are more than gracious, his fellow cub scouts help him out and he is treated just like everyone else. When something comes up that involves reading aloud or writing, I offer assistance but don't make a big deal of it.

 

My child, like J, has some complex health issues. He has had four heart surgeries to date, the last one in May affected his SA node and now he has a rhythm problem that may require a pacemaker, so I always have to watch for signs of heart failure. He has bladder neck dysfunction and low sensation meaning he has to empty his bladder on a regular schedule. His speech issues set him apart although (thankfully) he has NEVER been teased although it's a matter of time. I am well aware of the sense of unfairness.

 

When you have a child with health issues, you really need to be grateful that they are even alive. I thank my lucky stars every day that my son is gaining weight, has pink cheeks, has a loving attitude, and is secure in himself. Whether it takes him longer to learn to read or write is not so important in the grand scheme of things. It's something I spend an awful lot of time working on, but it doesn't define who he is.

 

Consider whether you have your own prejudices that you are working through. Everything you said about your son needing a different approach to get the same information describes having an LD. Do you understand the criteria that is used to diagnose LD? It's a discrepancy between achievement and potential - meaning the potential is THERE, but there is an issue that is blocking the achievement from matching up. If your son's sensory issues are inhibiting his ability to reach his potential, then he has a LD. If you feel shame about that, then you have some soul-searching to do.

 

I TOTALLY understand what it's like to have so much invested in a child who basically needs a high level of parenting. However, you absolutely must find some way to get respite. I hear you asking for advice on how to take a break, but then you list a number of reasons why it is simply not possible for you to spend ten minutes away from your child. :001_huh: Whether you train someone to watch him to your specifications or find some other way, it is healthy for BOTH of you to have a little space from each other at times. You want to give him the best, but you can't give him YOUR best if you are burned out. Consider how much of the issue is his need to be with you and how much is your need to be with him, and try to find some compromise. For both of your sakes.

[Mesa]

I have a son with ADHD, Aspergers, and SPD. To the original poster, you are not alone.

I am reluctant to post here on this thread. Some of your replies to those people who took time to post and try to help you have me shocked.

[Mom2J112903]

A lot of what you (J's mom) says really hits a nerve with me.

 

I have never, ever come across someone who treats my child as broken because he has difficulties learning. When his ADHD was out of control then I did get some flack, but the learning issues? Totally not an issue. His friends' parents are more than gracious, his fellow cub scouts help him out and he is treated just like everyone else. When something comes up that involves reading aloud or writing, I offer assistance but don't make a big deal of it. We, both J and I, have lost what we *thought* were good friends once they saw the "real" J and when they found out about not only his processing disorder but also his physical health. Yes it sucks, yes I wish people were more open, but around here people are so closed minded it is un-real.

 

My child, like J, has some complex health issues. He has had four heart surgeries to date, the last one in May affected his SA node and now he has a rhythm problem that may require a pacemaker, so I always have to watch for signs of heart failure. He has bladder neck dysfunction and low sensation meaning he has to empty his bladder on a regular schedule. His speech issues set him apart although (thankfully) he has NEVER been teased although it's a matter of time. I am well aware of the sense of unfairness. Even J's teachers when he was in Catholic school put him down because of his processing disorders. Due to his social anxiety, his speech sometimes gets jumbled or he speaks too quickly. I would be forever grateful to find a community like you are describing.

 

When you have a child with health issues, you really need to be grateful that they are even alive. I thank my lucky stars every day that my son is gaining weight, has pink cheeks, has a loving attitude, and is secure in himself. Whether it takes him longer to learn to read or write is not so important in the grand scheme of things. It's something I spend an awful lot of time working on, but it doesn't define who he is. My son *isn't* gaining weight, quite the opposite actually. His attitude is terrible most days as he doesn't feel well and we do not know how to help him. For me *personally* what a person can achieve in life *does* make them who they are. Maybe this is wrong, maybe this is still part of how I was raised having an impact on me, but this is how *I* feel.

 

Consider whether you have your own prejudices that you are working through. Everything you said about your son needing a different approach to get the same information describes having an LD. Do you understand the criteria that is used to diagnose LD? It's a discrepancy between achievement and potential - meaning the potential is THERE, but there is an issue that is blocking the achievement from matching up. If your son's sensory issues are inhibiting his ability to reach his potential, then he has a LD. If you feel shame about that, then you have some soul-searching to do. No one has ever used the term LD when describing J, they always use processing disorder.

 

I TOTALLY understand what it's like to have so much invested in a child who basically needs a high level of parenting. However, you absolutely must find some way to get respite. I hear you asking for advice on how to take a break, but then you list a number of reasons why it is simply not possible for you to spend ten minutes away from your child. :001_huh: Whether you train someone to watch him to your specifications or find some other way, it is healthy for BOTH of you to have a little space from each other at times. You want to give him the best, but you can't give him YOUR best if you are burned out. Consider how much of the issue is his need to be with you and how much is your need to be with him, and try to find some compromise. For both of your sakes.

 

What if I miss something in those 10min I am apart from him? I can't lose him, and yes, I am terrified of losing my *one* and *only* child I will ever have. Is this stopping me from leaving him with DH or a sitter (which we have never done, I do not even know how to search for one and no one I know uses one because they have family near) heck yes! DH is even nervous about leaving J with a sitter. We did have a date night back in October, and the entire 3hrs J was at the Science museum we were on pins and needles. It was miserable for both of us, and J cries every time we mention *possibly* doing something like that again.

 

I would love to be able to find someone to come in and just keep J company, for a better lack of words, for a few hours once/week. Even if I was sitting on the couch or taking a long, hot shower, *that* would be nice.

 

Ok, then make absolutely sure you avoid all the helpful information about processing disorders on the LD sites. http://www.ldonline.org/article/6390

 

I'm speaking tongue in cheek, because I know you know better than that. The real issue is to educate people around you. I also think it's reasonable to be SELECTIVE about who you discuss things with and how, because, as you say, labels create instant connotations or stereotypes, whether they are accurate or not.

 

Like I said before, no one has ever even mentioned a LD when describing J, it is always he has a processing disorder. Maybe the doctors and therapist we have seen don't use that term? And we have seen doctors and therapists in three different states.

 

It is not even the community around here, it is family as well. *They* feel like we have done J a dis-service, they feel like we have "broken" him. I don't know how to teach people that J is a loving young man whom is *not* broken, just not perfect-in their eyes.

 

I am thankful that I have gotten some very nice, thoughtful responses. I am sorry I have struck a cord with some. Maybe I do need to do some "soul searching" but honestly how do you do that with a SN child and still provide for them?

[PeterPan]

I have a friend who says hardships come our way to teach us things. Sounds like you are learning who matters and which friends were really friends. Are you connected to any homeschoolers? You might find your reception a bit different.

 

You can call him whatever you want. The reality is, problems like this don't go away, only improve.

 

And yes you can have to take time for yourself and the dc. I get massage every week, doing exactly what I said (taking quiet things for the dc to do), and I take long hot showers. That's where I do my reflection and rebuilding. Everyone has to find their own peace.

[LidiyaDawn]

What if I miss something in those 10min I am apart from him? I can't lose him, and yes, I am terrified of losing my *one* and *only* child I will ever have. Is this stopping me from leaving him with DH or a sitter (which we have never done, I do not even know how to search for one and no one I know uses one because they have family near) heck yes! DH is even nervous about leaving J with a sitter. We did have a date night back in October, and the entire 3hrs J was at the Science museum we were on pins and needles. It was miserable for both of us, and J cries every time we mention *possibly* doing something like that again.

 

I think you need to consider talking with someone (professional) about your anxiety/etc here. This does not sound emotionally healthy for any of you. :(

[Mom2J112903]

I have a friend who says hardships come our way to teach us things. Sounds like you are learning who matters and which friends were really friends. Are you connected to any homeschoolers? You might find your reception a bit different. We are but the group is small and there isn't many children close to J's age. The ones that are close to J's age either J doesn't "click" with or they live too far away. We did run into some the other day while we were at a hands-on Museum though, we allll had fun :D Too bad J and one of the boys are both chronically sick kiddos, these boys have *way* too much fun together, lol.

 

You can call him whatever you want. The reality is, problems like this don't go away, only improve. This makes me hopeful, I was very nervous that things would only go backwards. Even with intensive therapies.

 

And yes you can have to take time for yourself and the dc. I get massage every week, doing exactly what I said (taking quiet things for the dc to do), and I take long hot showers. That's where I do my reflection and rebuilding. Everyone has to find their own peace.

 

Not to be so nosey, but um, how do you afford weekly massages? Around here they are $50+ and we can not afford $200/month for a massage. That $200 just isn't there and we don't live lavishly either.

 

I think you need to consider talking with someone (professional) about your anxiety/etc here. This does not sound emotionally healthy for any of you. :(

 

We have and it is just something I have delt with my *entire* life. With J being an only child, no chance of ever having another child, and his SN, it just intensifies things.

[Whereneverever]

Can you wake up early when your DS is still sleeping and start the day with some time alone or with your DH?

 

Is there someone local you could hire as a mother's helper?

[Mom2J112903]

Can you wake up early when your DS is still sleeping and start the day with some time alone or with your DH?

 

Is there someone local you could hire as a mother's helper?

 

I do get out of bed before DH does, but due to his schedule, it could mean that DH wakes up and goes straight into work or could mean that he is home until 1130a before he goes in. We do try to spend time together, alone, it just doesn't happen often.

 

I have often wondered about a Mother's helper, but have no idea whom or where to start my search for one. I really don't want to put something in the bulletin at our church because that would mean more people having a prejudice aganist J, and I do *not* want that. It is bad enough we are thinking about changing parishes and if we can not find a Catholic church we are welcomed into, I do not know what we are going to do. J is 7yrs old now and should be preparing for his 1st Communion but has not been to a single CCD class yet thanks to everything that has gone on.

[ondreeuh]

I really don't want to put something in the bulletin at our church because that would mean more people having a prejudice aganist J, and I do *not* want that.

 

I'm really curious what you mean by this. Are you saying that people will be prejudiced if they know he is sickly? Are you trying to pass him off as a totally typical child because you are concerned they won't accept him if they know he has issues?

 

I say this gently, but if your child has processing issues and health issues, then it is probably already clear that he is a little bit different from typical. Without any explanation, people are going to form their own opinions and it may not be in his favor. For example, when my son's meds have worn off and he is bouncing off the walls, he can appear to be undisciplined and disrespectful. I would *much* rather people understand that he has ADHD because then it puts his behavior into the proper context. The same goes for reading - my son didn't read until he was 8, and there were times his cub scout group would read and write things in their meetings. Saying, "he's dyslexic and it's taking longer for him to read/write" explains why he struggles - otherwise they may think that I am neglecting his education or he is mentally challenged. People may not know a lot about dyslexia, but everyone knows one and seems to know it's nothing to do with intelligence. Giving people accurate information lets them form appropriate expectations.

 

How many kids with SPD have been judged as being "spoiled brats" because they are picky eaters or fussy with their clothing? Wouldn't it be so much better if people knew there was a reason outside that child's control for their behavior?

 

I firmly believe that being honest with a child's issues is the way to go. NO ONE has perfect children; their parents are ALL dealing with SOME issue, whether it's behavioral, medical, educational ... people are much more understanding than you think. I can't tell you how many people have told me how brave and strong my son is because they know what he's gone through and they see him working so hard.

 

You say you've lost friends when they discovered the "real J" but I don't understand how that's possible if they really understood where he's coming from. If they are so stuck-up they don't want to associate with anyone who's not perfect, then you don't need them anyway, but I suspect there's a little more to the story.

[Mom2J112903]

I'm really curious what you mean by this. Are you saying that people will be prejudiced if they know he is sickly? Are you trying to pass him off as a totally typical child because you are concerned they won't accept him if they know he has issues? They *are* prejudice once they find out about his processing disorder and are afriad to be left alone with him because of that and because of his GI issues (he can go from playing to be in severe pain in the blink of an eye) and they just don't know or care to learn about him and how to help him.

 

I say this gently, but if your child has processing issues and health issues, then it is probably already clear that he is a little bit different from typical. Without any explanation, people are going to form their own opinions and it may not be in his favor. For example, when my son's meds have worn off and he is bouncing off the walls, he can appear to be undisciplined and disrespectful. I would *much* rather people understand that he has ADHD because then it puts his behavior into the proper context. The same goes for reading - my son didn't read until he was 8, and there were times his cub scout group would read and write things in their meetings. Saying, "he's dyslexic and it's taking longer for him to read/write" explains why he struggles - otherwise they may think that I am neglecting his education or he is mentally challenged. People may not know a lot about dyslexia, but everyone knows one and seems to know it's nothing to do with intelligence. Giving people accurate information lets them form appropriate expectations.

 

How many kids with SPD have been judged as being "spoiled brats" because they are picky eaters or fussy with their clothing? Wouldn't it be so much better if people knew there was a reason outside that child's control for their behavior? Everyone we talk to about SPD still believe that it is a discpline issue, this including the faculty at his previous school.

 

I firmly believe that being honest with a child's issues is the way to go. NO ONE has perfect children; their parents are ALL dealing with SOME issue, whether it's behavioral, medical, educational ... people are much more understanding than you think. I can't tell you how many people have told me how brave and strong my son is because they know what he's gone through and they see him working so hard. We get the same thing with J, they can't believe what he has been thru and see him today. Then we get the people like I mentioned above whom think he is a spoiled brat and we are not doing enough for him in ways of therapies and behavior modification.

You say you've lost friends when they discovered the "real J" but I don't understand how that's possible if they really understood where he's coming from. If they are so stuck-up they don't want to associate with anyone who's not perfect, then you don't need them anyway, but I suspect there's a little more to the story.

 

No,that is the whole story. J made a *very* good friend last year in Catholic K but since we do not "do enough to help him, here is the list of activities and therapies we do, it would benefit him to have these as well" her Mother does not allow M to play with J any longer. There *are* people whom have stood beside us and keep in touch, those people are near and dear to my heart. I am sorry but I am not going to have my child in an acadmecially challenging school for 8hrs a day then drive over an hour, each way, twice a week, for ABA and social group therapy IN addition to two or three dance classes *and* scouts each week. No wonder your child is melting down at 8p each night!

 

I never believed people when they said this Catholic school thinks they are "high and mighty" because they can send their child and *wow* the cliques-they are awful! We sent J there because we were told they *would* help him thrive, and yet we found out just the opposite. They wanted him to fit into the mold of the school and he just plain doesn't.

 

Homeschoolers are a different breed, it is just too bad there isn't a larger group around here.

[PeterPan]

Not to be so nosey, but um, how do you afford weekly massages? Around here they are $50+ and we can not afford $200/month for a massage. That $200 just isn't there and we don't live lavishly either.

 

 

We have and it is just something I have delt with my *entire* life. With J being an only child, no chance of ever having another child, and his SN, it just intensifies things.

 

Well I think the first thing you should do is stop saying "no hope of another child". That's not true for anyone. Even people who can't have children can adopt. And you have one child, as many as others ever get. If you notice, I have a 10 year gap, so I've been there. Your words are powerful, and when you say NO HOPE, NO HOPE to yourself, you're making yourself sick. You actually depress the function of your glands with that kind of talk and physically make yourself sick. So your first task is to stop that. If you like the Bible, I suggest you look at Psalm 27:13 and read it to yourself every single day. It may change your outlook. Telling yourself there is no hope is unhealthy.

 

Next, given that you are still having anxiety despite counseling, you should consider a new practitioner or new methodology. Lots of women on the boards are on antidepressants (try doing a search). If that's not your path, then try a nutritionist who specializes in these things. Food can make a DRAMATIC difference in moods. There are certain omega oils, fish, etc. that can help. I've cooked differentiated meals for my family (different for each person) for years, so don't say you don't have time to do it.

 

And how do I have money for massage? Well one, none of your business. Two, I go without things. My husband cuts my hair, and I cut his. I buy my shoes at discount and wear them way beyond when they wear out. 10 years ago I was housebound with severe chemical sensitivities and increasing (becoming anaphylactic) reactions to many foods, so getting massage, which stimulates organ function, improves detoxification, etc. was essential for my health. My health and energy declines noticeably if I go without.

 

There's not a sob story you can make SOMEONE on the boards can't equal. We've all btdt. It's not like you're the only one with a rough time. If you've tried regular counseling for dealing with these things, I would look to nutrition.

 

BTW, have you read any books by Mary Shomon on thyroid? Many women with unresolved depression have problems with their thyroid.

Edited December 18, 2010 by OhElizabeth

[Mom2J112903]

Well I think the first thing you should do is stop saying "no hope of another child". That's not true for anyone. Even people who can't have children can adopt. And you have one child, as many as others ever get. If you notice, I have a 10 year gap, so I've been there. Your words are powerful, and when you say NO HOPE, NO HOPE to yourself, you're making yourself sick. You actually depress the function of your glands with that kind of talk and physically make yourself sick. So your first task is to stop that. If you like the Bible, I suggest you look at Psalm 27:13 and read it to yourself every single day. It may change your outlook. Telling yourself there is no hope is unhealthy. I do not want to go into great detail but for *us* we have no hope of ever having another child.

 

Next, given that you are still having anxiety despite counseling, you should consider a new practitioner or new methodology. Lots of women on the boards are on antidepressants (try doing a search). If that's not your path, then try a nutritionist who specializes in these things. Food can make a DRAMATIC difference in moods. There are certain omega oils, fish, etc. that can help. I've cooked differentiated meals for my family (different for each person) for years, so don't say you don't have time to do it. I was gluten free, on all natural supplements for over a year and no great strides were seen. The only thing that *has* helped me is powerful drugs that left me looking like I have Parkinson's now. Those are out of the question, obviously.

 

And how do I have money for massage? Well one, none of your business. Two, I go without things. My husband cuts my hair, and I cut his. I buy my shoes at discount and wear them way beyond when they wear out. 10 years ago I was housebound with severe chemical sensitivities and increasing (becoming anaphylactic) reactions to many foods, so getting massage, which stimulates organ function, improves detoxification, etc. was essential for my health. My health and energy declines noticeably if I go without. I did not mean to come off nosey, I honestly can not see a way that *we* can afford $200 or more a month for a massage. It sounds like your insurance would cover yours, now if I could get it covered, it would be amazing.

 

There's not a sob story you can make SOMEONE on the boards can't equal. We've all btdt. It's not like you're the only one with a rough time. If you've tried regular counseling for dealing with these things, I would look to nutrition. I wasn't attempting a "sob story" my OP was trying to figure out how my *child* can take a break when things seem to backslide when he does. I honsetly do not think *anyone* should have to have school 365 days a year is all.

 

BTW, have you read any books by Mary Shomon on thyroid? Many women with unresolved depression have problems with their thyroid.

Thyriod has been tested over the years, my Mother, my Grandmother, GG and so on have all delt with this. For me it is genetic. I do like to read, so I will look for some of her books. Thank you for the suggestion.

[PeterPan]

I think Mary Shomon's books will have some ideas for things to pursue naturally. No, I wouldn't do those meds either, yuck. And no, insurance doesn't pay for my massage. However medical expenses are tax deductible at a certain point. You could talk with a tax person about it. Even prescribed dietary changes, or rather the difference between what the regular and organic version would have cost, that type thing, can be a medical expense.

 

The point was not whether you can have another or not. The point was that words are POWERFUL. Your thymus gland is in the middle of your chest, under your sternum. Tap it gently and see if it's sore. Then lie down and rest and tap it for a while. This massages the gland gently and can help. Words are powerful. No matter what the truth, the things you chose to meditate and say to yourself will affect how you feel. If I listen to Glen Beck while driving (he's a nutcase conspiracy talkshow host, comes on before Rush who is slightly less annoying and fills my long drives to therapy), well if I listen to Glen Beck I feel physically SICK the next day. It creates worry and negativity and thoughts about which I can do NOTHING. You might find it helpful to read or catch on tv some thoughts by Dr. Amen. I'm not saying everything from him is right, but he has some real truth about the power of our WORDS and thoughts to make us sick. He gives a list of things to say to yourself to filter your thoughts. (Is it true? How does thinking this make me feel? etc.)

 

Supplements do no good if you can't absorb them. All natural practitioners are not alike. Mine fixed all kinds of problems on me they said couldn't be fixed. She got me off thyroid meds btw too. Anxiety can be an imbalance in your cell function (dna and rna). Mine will listen to your symptoms and make a personal food plan that brings the body back in balance, using the food to heal. For instance eating oatmeal for breakfast every day helps the RNA and can bring anxiety into check. Bet you haven't had a doctor tell you to eat oatmeal for your anxiety, eh? LOL It's not just one thing. Are you eating a large salad every night? I'd go so far as to say people wouldn't need all these meds if they ate right. We eat 3 cups of salad (fresh, no iceburg, lots of good things like tomatoes, cucumber, etc. with 1 1/2 cups lettuce or spinach alternating as a base) every night.

 

Well I've gone on enough. Back to researching visualization stuff!

[Guest illydawg]

I just found this site, so I am 2 years since this was first posted, but if you are still reviewing emails, hopefully this can help. My son has all 3 processing disorders (visual, auditory, and motor). Different docs will tell you different diagnosis. I have found a specialist that does all 3, and have seen huge improvements. Dyslexia, ADD, and alot of other "issues" all can stem from having a processing disorder. And if you have more than one, and do not realize there are issues with any of the others, your childs brain can not function properly without all 3 pathways working together. My therapist explained its like having a fish net with holes in it and trying to scope out fish. The fish will keep falling through the holes. All 3 processing disorders need to work collectively in order for the "fish holes" to stop being holes. If you have not gotten him tested for all 3, I suggest finding someone who can do so.

Hopefully that helps.