Hmmph. Need some perspective!

[Twinmom]

I've had both my twins evaluated by an Orton Gillingham reading tutor over the past month, and both are surprisingly deficient in phonetic skills despite my best efforts at home. Not totally surprising, as one has APD with decoding issues and they were both diagnosed with neurodevelopmental brain delay due to meth exposure (approx. mental age of 7 vs. chrono age of 9). They both have fine motor issues as well, which I knew. Handwriting is atrocious unless I sit by their elbows and watch each letter...not always possible. They are bright kids and doing well across the board but have some definite skill areas they need to work on. So, here we go again with another round of therapy for both...to the tune of $500 a month. Will have to drop other therapies to do this...$300 a month neurofeedback will need to come to an end for both of them to afford OG, DD will have to give up some things and we will have to find time and possibly $$ to squeeze in an APD treatment program for at least one of them as well. Paid off van just died and we had to take on a new car payment, DH's company in its infinite wisdom decided to pick this moment to hold back part of his comp plan until the end of the year, leaving our month to month down 25%. Hmphh.

 

I guess I am somewhat depressed about the whole thing. The OG tutor who evaluated them is my buddy from two houses down, and it is a perfect situation for ease of use and all that...I guess that the problem is that she has managed to hit all my buttons in terms of feeling like a failure as a teacher and parent. After listening to her kind of freak out about whether or not they have dysgraphia (don't think so) and not knowing whether the one twin has problems with phonics as a result of an undiagnosed APD or inadequate teaching (meaning, not teaching in the way he needs to learn vs. lack of effort...she knows how hard I try), I am having trouble putting this all into perspective. DH feels like a failure as a provider, since we cannot afford every therapy needed, despite a six figure income. Stupid, I realize, but that is where we both are at for the moment. We have spent thousands and countless hours on different therapies, countless hours on teaching and coaching and they have improved dramatically. Yet, here we are with kids who are still significantly behind in language development...this is just what they are capable of right now. I know it is not my fault, but I feel like it is. They are 7 year olds in 9 year old bodies...they are not going to be on grade level for language any time soon. Perhaps math, as they both excel at it, but language is a big ole boondoggle for them. I'm sorry if I am not the perfect teacher for them...that is the reason for hiring a tutor for reading. I am not reaching them in the way they need to be reached.

 

I guess I am depressed about it and have no perspective at the moment, so I am just venting. Not much to advise me about, I'm sure. I guess what I am asking is this: am I right to believe that they are just fine the way they are? Personally, I don't really care how long it takes them to get there...as long as they are working at their own pace to get there. Their current reading level is a problem but not a failure on their part or mine. Their writing level is even less on my radar at the moment...I am trying to develop happy, healthy, well rounded little people here, not little scribes. They will write when they are ready. Glad to have the reading help, for sure. Just not in the mood to freak out because they are not able to be "on grade level" (ie, like everyone else) right now. I like them fine the way they are!

 

Thanks for listening to this long vent. I will try to leave the grumpiness here with those who understand, pick my chin up off the floor and keep on truckin' now! ;)

Edited July 21, 2012 by Twinmom

[fiddle]

:grouphug:

 

Just sending a big hug. The veterans with older kids can help to ease your mind some. The best advice that moms gave me for kids with LDs is " slow and steady wins the race." I try to focus on that in the hard times with my dyslexic/dysgraphia dd. hang in there!

Paula

[MomatHWTK]

Your kids are who they are. Teach them not some perfect model test subject. Give them the best foundation you can and let them be who they are going to be. :grouphug:

[VinNY]

My girl s/b going into 6th gr. and is working at a 3rd grade level, math and reading. But she is making progress. Your twins will,too...with time and help. It is great they are good at math. Two years ago, my older dtr copied the Serenity prayer for me to meditate on. It was the best thing I did besides getting outside help. And yes it stinks that some kids do not respond to just Mom doing O-G. But it isn't about us..it is about the child:) Now my dtr works nicely with me and the other teachers and therapists.

[PeterPan]

Jennifer, it seems like there are no limits on what you ought to provide or how much therapy ought to accomplish, kwim? It could be that they won't progress that much better even WITH the expensive OG. When we started into our therapy stuff, someone wise on the boards told me only to do *2* things at once, no matter what. It keeps life in balance AND the finances.

 

Sometimes when you impose some sanity limits on what you're attempting to do, you find out that the therapies could have been doing differently and still been effective (like people who spread out VT and do more homework). Sometimes you find out that expensive therapy wouldn't have been as great as you had hoped. And sometimes it's that the therapies staggered and done over a period of time will be just fine. Your kids are only 9. I know it feels awful. But if you've hit their max and your financial max, pick 2 things, do what you can, and when those are done pick 2 more things.

[Priscila]

Your kids are who they are. Teach them not some perfect model test subject. Give them the best foundation you can and let them be who they are going to be. :grouphug:

 

:iagree:

[Twinmom]

Jennifer, it seems like there are no limits on what you ought to provide or how much therapy ought to accomplish, kwim? It could be that they won't progress that much better even WITH the expensive OG. When we started into our therapy stuff, someone wise on the boards told me only to do *2* things at once, no matter what. It keeps life in balance AND the finances.

 

Sometimes when you impose some sanity limits on what you're attempting to do, you find out that the therapies could have been doing differently and still been effective (like people who spread out VT and do more homework). Sometimes you find out that expensive therapy wouldn't have been as great as you had hoped. And sometimes it's that the therapies staggered and done over a period of time will be just fine. Your kids are only 9. I know it feels awful. But if you've hit their max and your financial max, pick 2 things, do what you can, and when those are done pick 2 more things.

 

Very, very good advice...thank you for sharing. Never thought about keeping it to two things at once, but that makes a lot of sense. We always have so much going on...four kids with special needs will do that to you! Seems that someone always is needing something that costs big bucks, and needing it NOW. I am tired of it. I want to go back to enjoying my kids and my family and trusting God to provide what they need, when they need it. I have lost part of that somewhere in the OG eval process. Just reached my limit, I guess. Two things at a time might keep it that way, and it might just be better for them in the process.

 

Thanks so much to all who have taken the time to reply! Each one of you has offered me something to hang on to!

 

:grouphug:

Edited July 22, 2012 by Twinmom
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[herekittykitty]

I guess what I am asking is this: am I right to believe that they are just fine the way they are? Personally, I don't really care how long it takes them to get there...as long as they are working at their own pace to get there. Their current reading level is a problem but not a failure on their part or mine. Their writing level is even less on my radar at the moment...I am trying to develop happy, healthy, well rounded little people here, not little scribes. They will write when they are ready. Glad to have the reading help, for sure. Just not in the mood to freak out because they are not able to be "on grade level" (ie, like everyone else) right now. I like them fine the way they are!

 

I couldn't agree with you more! I have been thinking about this very thing so much lately. IMHO you are not at all wrong to think they are just fine how they are! They will develop in their own time.

 

This is a bit of a rant, but I have been very irritated by standards lately. Yes, I know they are necessary. But they really box children in to developing on a certain timeline, and no, not everyone does!

 

I feel similarly irritated when moms of neurotypical kids freak out (on my behalf) if they become aware of my son's handwriting difficulties. Oh my goodness, aren't you worried about how BEHIND he is? Well, it's not great, but he's dysgraphic, so it is what it is! Yes we work on it, but no I'm not freaked out. He is still very bright and a great kid.

 

Recently a mom friend of mine with kids in public school was lamenting about how BEHIND her DD is in one subject, despite working grades ahead in all the others. She's been working with her nonstop this summer and the poor girl is miserable. All I could think was, really? Are these standards worth stressing your child out? She will get there in her own time.

 

Okay, end of rant....

[eoffg]

But if children were allowed to progress along their own developmental timeline?

This would mean that in 20 years time, the twins would be 29 year olds, but have the mental age of 27 year olds?

Which highlights the absurdity of using a timeline as a benchmark.

The real issue, is with the factory production line model of education, that groups children by age, rather than recognizing that each child develops along their own unique timeline.

[PeterPan]

But if children were allowed to progress along their own developmental timeline?

This would mean that in 20 years time, the twins would be 29 year olds, but have the mental age of 27 year olds?

Which highlights the absurdity of using a timeline as a benchmark.

The real issue, is with the factory production line model of education, that groups children by age, rather than recognizing that each child develops along their own unique timeline.

 

I'm sorry, but I must be incredibly grouchy this morning. We're a homeschooling board and no one here groups kids by ages or employs a factory mentality or misses that with patience each dc will have a unique outcome. We also know that being behind in an area is not just a linear thing, a game of patience, but sometimes a %% problem, that the dc is always going to be behind by that percentage and that it means INCREASINGLY behind age-wise. Good therapies can nudge that % sometimes, so she tries.

 

The real issue is finding peace with what can and can't be done and feeling like you did all you humanly could to help them without burning yourself to a cinder in the process. Once you've crossed over into burnout, it's time to back off and let some reality just be reality. But to say we should just let them proceed on their developmental timeline, that ignores the reality of how much we CAN bump things with good therapy. I think it's the constant battle of mothers here, deciding how much intervention to try and where to just back off.

[Lecka]

My son had some thing where he couldn't tell some consonant sounds apart. Seeing what he did in speech therapy -- I don't think I could have done it at home. He was in some serious speech therapy.

 

I still have done a huge amount with him at home. It takes a lot.

 

But if your son is anything like mine -- it is a lot more than just going through an OG program.

 

Plus my son started his when he was 6, and it was very difficult for him to do the sounds. It was not a great time.

 

I don't think you can compare it to kids who can be more easily successful with OG.

 

There are not OG tutors where I live, but there is speech therapy. He even had two years of speech therapy with no progress, and had to go in to the more intensive speech therapy.

 

But what I think is -- it is not your fault he has not really done well with OG. He is probably really more severe with the APD. That is what I have come to think about my son. People report programs working for their kids that I DID try and didn't work, and I don't think the problem was me or him, it was that he happened to be more severe in this little area.

 

I hope that the OG tutor can be what your son needs. But I don't think that mean you have wasted time, either. YOU have brought him to his current level, and anyway you are his mother, separate from also teaching him. I don't think other tutors should ever discount that.

[Dmmetler]

But if children were allowed to progress along their own developmental timeline?

This would mean that in 20 years time, the twins would be 29 year olds, but have the mental age of 27 year olds?

Which highlights the absurdity of using a timeline as a benchmark.

The real issue, is with the factory production line model of education, that groups children by age, rather than recognizing that each child develops along their own unique timeline.

 

 

I wish it worked that way. But it doesn't. I had about a 3 year delay in motor skills when I entered K-that is, I was 5, but was more like a young toddler motor skills-wise. I entered high school with about the same level of delay-with skills of about a 10-11 yr old. And when I was reassessed to get a 504 plan on entering college, I still had about the skills of a 10-11 yr old. At age 21, as I was finishing my college degree, my adaptive PE instructor (the college football team's PT-having adaptive PE on my 504 in a small college was awesome) said that I had about the skills of a 12 yr old-and that I'd have to work to keep those because, basically, it was as good as it was going to get.

 

The same is true with other developmental disabilities. Yes, the child will continue to develop, but eventually, development stops, and when that happens, basically, what you have then is all you're going to get. And since skills build on skills, eventually such disabilities affect ALL academic areas, not just reading.

 

To the OP-you're doing a great job. Insecurity and feeling like you're not doing enough is what all parents (and teachers) of kids with learning challenges deal with-but ultimately, you do what you can, and pray/hope a lot!

[Twinmom]

Just to clarify...I was not doing OG with the twins at home. Haven't tried to do it myself at all, as I am not superwoman! ;) No time to learn to teach OG style...instead, I've been teaching basic phonics ala OPGTR while carting them to and from distant cities multiple times a week for expensive neurofeedback, SPD therapy, auditory evals and whatnot. So, when I say they have improved, I mean that they have improved across the board rather than improved in language, reading, etc. I have seen incremental improvement in reading, spelling and handwriting, but not as much as I would like, thus the OG. I have debated trying to do it myself, but the challenges of juggling four special needs kids and their multiple therapies means I don't believe I could do it well.

 

My angst is really about the OG therapist insisting that they are dangerously behind and upsetting me. I wish I could just celebrate how far they have come for at least a little while, and perhaps pat myself on the back for just a minute for all the success they have experienced with all the interventions we have chosen! They are light years ahead of where they were two or three years ago. I hope that adding OG will get them farther. I just don't want to be beat up in the process and I want to enjoy them for what/who they are (awesome, cool kids, really!). My OG friend just needs a little better bedside manner, and I need to get a grip and we will all be fine.

 

In the case of my kids, I have been assured by neuro-psychs who have examined them that they have the genetic ability to catch up and possibly be perfectly normal (even maybe above average in performance) in the future. So, I do have that reassurance, so perhaps I do not feel as alarmed as she does when she notes how behind they are now. I feel pretty confident telling the boys they will be just fine, even if they don't catch up. I need to keep my internal focus on that message, as well, or the mommy angst thing really gets me down.

 

It's not all about me and what I can offer them at which point. No matter what I do, they will be who God designed them to be and that is just fine.