Coming to terms with our children's learning disability.

[merry gardens]

Topic prompted from another thread and my own struggles...

 

Have you come to terms with your child's special needs? If so, how did you do it?

 

Were evaluations and professionals along the way helpful, unhelpful--or both?

 

Are you still on the journey? How far along are you? How much farther do you think this journey might leave?

 

I'm still on the journey. My ds has a diagnosis now, but it took a long time. Some professionals gave me false assurance that ds was fine when I first went for evaluations before K. Ds is dyslexic and I didn't know it at the time, but I was seeing early signs of dyslexia. Ds also has memory struggles that might go further than just dyslexia. I don't know. He's never had an IQ test. He's had a few evaluations now and the results and helpfulness depend greatly on the skills of the evaluator. I suspect he's 2e, but I could be wrong. Lately I'm wishing I had an IQ score, but if it came back low, I might not push him as hard and if it came back high I might expect more than he's able to give.

 

We took a break over summer and ds seemed perfectly normal. We start back at homeschooling and academic pursuits and...:svengo:.

 

Still on the journey. How about you?

[AmyontheFarm]

I went through a grieving process. It was hard, it was long, it was necessary for me.

 

Then I fought, hard, and long to get the services my son needed.

 

It was rewarding and still is!

[MicheleinMN]

Oh, boy. This is a loaded question. Where to even begin?

 

I have run the gamut of emotions. When we were seeking the evaluation, I thought we were dealing with a "mild learning disability" like dyslexia or something. When we met with the neuropsychologist and got hit with "mental retardation", it was like a load of bricks fell out of the sky... like I had been punched in the gut... like the world came to a screeching halt.

 

For the first 24-48 hours or so, I was in denial. I was convinced that this doctor was a quack. I was sure that she tested him wrong. I was positive that she couldn't have spent enough time with him to know him well enough.

 

Then, I cried.

 

I cried for a week. Every time I looked at my child - the child that I have overwhelming love for - I cried. It's hard to put into words exactly WHY you cry, but you do. I suppose it's because you are grieving over the loss of an imaginary future that you always thought your child would have. Every parent, whether consciously or not, dreams of their child growing up, graduating, moving out, starting a job, getting married, and having an independent life from you. AND, you dream of your "empty nest" years - the traveling, the unencumbered frivolity associated with not having kids attached to you anymore, the growing old and sitting in a rocking chair watching the world go by. But NOW - well, all of that has suddenly been changed by a few simple words from a doctor.

 

And that's why you cry.

 

After a week or so of that, you start to panic. After you realize that the future is NOT what you have always thought it would be - what everyone else in the whole entire world promised you that it would be - then you start to consider what, exactly, will that future look like? Your mind goes in a thousand different directions as you start to consider that maybe you CAN'T homeschool this child anymore, so where should he go to school? What types of services should your child have? Should you apply for Social Security and Medicaid benefits? Should you apply for special assisted living accommodations NOW since the waiting list is YEARS long? What about financial considerations for the future? Should you set up a special needs trust fund now, or later? Should you change your life insurance to include your SN child? ON AND ON AND ON AND ON... your mind can't stop.

 

But then, it stops.

 

Then you start to get angry. Why did it take the doctors nearly nine years to come up with a diagnosis? Why didn't they listen to me when he was only FOUR MONTHS OLD and was banging his head repeatedly? Why didn't they take me seriously when I told them that he was an EXTREMELY picky eater? Why was it all brushed under the rug for so long? Why didn't anyone listen to me when I told them, over and over again, for years and YEARS, that SOMETHING wasn't right with my child?

 

And why did God let this happen to me? Is this some sort of punishment for making fun of mentally retarded children when I was a kid? Doesn't God realize that I'm in Mensa? I'm smart, for cryin' out loud! How could *I* have a mentally retarded child? What sort of sick, cosmic joke is this, anyway?

 

Then the guilt sets in.

 

What type of mother complains about her child's condition? I'm such a bad mother! I should love him unconditionally - and I do! - but... well... I just wish he weren't this way! But if I wish that, then I must not fully accept him for who he is, right? Guilt... guilt, guilt, guilt. Any "good mother" wouldn't feel this way.

 

And finally... acceptance.

 

You cut yourself some slack. You realize, after talking with other SN moms, that all these feelings that you don't know what to do with? Well, they're NORMAL. It's okay! You're okay!

 

And guess what? Your son is okay, too!

 

And you realize that this is a blessing in your life. And you realize that God will use this to hone your soul. And that He will use you to minister to others who are going through it. And you realize that YOU WILL BE OKAY.

 

You start to reimagine the future... with your child in it. All grown up, and with you. You start to realize that it's not everyone else's "normal", but it's yours, completely yours.

 

And it's good.

 

The process is long. It hurts. It's confusing. No one will tell you that it's not a wild ride.

 

It is.

 

Thank you for sharing this. And thanks to the OP for the original question.

[NittanyJen]

I liken it to being on a bungee cord :)

 

Like the PP, we went through years of providers telling us we were nuts, we were helicopter parents and needed to stop worrying, etc (there is a Washington Post article about our odyssey here: http://www.ndcforyoungchildren.com/docs/Wash_Po_08242010.pdf

 

Honestly, I was relieved, primarily. I already *knew* something was up before he was diagnosed. With the diagnosis of his genetic disorder came the knowledge that there was a reason for his challenges, more specific information about the nature of his challenges, his prognosis, and a path of action (and avoidance of interventions that would be unnecessary, annoying, and unhelpful).

 

Now, that said, there is the reality that he has a genetic disorder. It isn't going to kill him, and in his case, with the interventions we put in place, he is going to be fine. He is a very smart kid, and will succeed academically once we deal with his road blocks and figure out how to help him learn to help himself with some lifelong issues he will always have. But it is a genetic disorder, and with that come issues that will be lifelong. And some of the issues he lives with right now are not always easy to live with on a day to day basis.

 

It gets frustrating. It sometimes make me angry and wonder, "Well, what if . . .?" That's the bungee cord. There are up days and down days.

 

You see, his genetic arrangement also makes him who he is. He is more observant, more sensitive, sweet, gentle, and loving. He is caring, attentive, and scary intelligent. Would he be all of that without his genetic arrangement? Who knows? I would hesitate to "fix" anything in him that could change any of these fundamental characteristics of his, well, character, because virtually everyone who meets him seems to just love him. One swimming instructor already moved him to a new instructor, because she liked him too much to be strict enough with him, and she couldn't detach enough from him to make him work when he wanted to sweet talk his way out of it. Boing. Back up.

 

He is fully informed about his challenges, his genetic disorder, and all of its implications for his life. His outlook? "Well, if I have to work harder to do the same stuff as other kids, I guess I better work twice as hard, because I want to do everything other kids do. Maybe harder, because I want to be better at at least one or two things. Maybe when I'm an adult, I'll be really good, because by then I'll just be used to hard work, and a lot of kids don't seem to work hard."

 

I hate the reason why he has to think like that, but I love his attitude. He has never been negative about himself or his self-image (my heart breaks for families who have kids 15, 16 years old who still have not "broken the news" to their boys about this disorder, even though they may have had a prenatal diagnosis, for "fear" that they will accidentally tell a friend or someone who will tease them about it, or discriminate against them for it . . . all these years of missed opportunity for the child to understand his struggles and come to terms with this aspect of who he is!).

 

BOING BOING. Up/down, at the same time.

 

Life with a special child is, for us, life on a bungee cord. We'd never change who he is for even a second. But sometimes the struggles he faces, and that our family sometimes faces, do cause us pain.

 

In the end though, I'll take him and love him exactly as he is.

[Tiramisu]

I liken it to being on a bungee cord :)

 

Like the PP, we went through years of providers telling us we were nuts, we were helicopter parents and needed to stop worrying, etc (there is a Washington Post article about our odyssey here: http://www.ndcforyoungchildren.com/docs/Wash_Po_08242010.pdf

 

Honestly, I was relieved, primarily. I already *knew* something was up before he was diagnosed. With the diagnosis of his genetic disorder came the knowledge that there was a reason for his challenges, more specific information about the nature of his challenges, his prognosis, and a path of action (and avoidance of interventions that would be unnecessary, annoying, and unhelpful).

 

Now, that said, there is the reality that he has a genetic disorder. It isn't going to kill him, and in his case, with the interventions we put in place, he is going to be fine. He is a very smart kid, and will succeed academically once we deal with his road blocks and figure out how to help him learn to help himself with some lifelong issues he will always have. But it is a genetic disorder, and with that come issues that will be lifelong. And some of the issues he lives with right now are not always easy to live with on a day to day basis.

 

It gets frustrating. It sometimes make me angry and wonder, "Well, what if . . .?" That's the bungee cord. There are up days and down days.

 

You see, his genetic arrangement also makes him who he is. He is more observant, more sensitive, sweet, gentle, and loving. He is caring, attentive, and scary intelligent. Would he be all of that without his genetic arrangement? Who knows? I would hesitate to "fix" anything in him that could change any of these fundamental characteristics of his, well, character, because virtually everyone who meets him seems to just love him. One swimming instructor already moved him to a new instructor, because she liked him too much to be strict enough with him, and she couldn't detach enough from him to make him work when he wanted to sweet talk his way out of it. Boing. Back up.

 

He is fully informed about his challenges, his genetic disorder, and all of its implications for his life. His outlook? "Well, if I have to work harder to do the same stuff as other kids, I guess I better work twice as hard, because I want to do everything other kids do. Maybe harder, because I want to be better at at least one or two things. Maybe when I'm an adult, I'll be really good, because by then I'll just be used to hard work, and a lot of kids don't seem to work hard."

 

I hate the reason why he has to think like that, but I love his attitude. He has never been negative about himself or his self-image (my heart breaks for families who have kids 15, 16 years old who still have not "broken the news" to their boys about this disorder, even though they may have had a prenatal diagnosis, for "fear" that they will accidentally tell a friend or someone who will tease them about it, or discriminate against them for it . . . all these years of missed opportunity for the child to understand his struggles and come to terms with this aspect of who he is!).

 

BOING BOING. Up/down, at the same time.

 

Life with a special child is, for us, life on a bungee cord. We'd never change who he is for even a second. But sometimes the struggles he faces, and that our family sometimes faces, do cause us pain.

 

In the end though, I'll take him and love him exactly as he is.

 

I am absolutely loving all the posts on this thread, and I also want to thank everyone else, especially Kinsa for taking the time to share her story in such detail. But, Jen, you gave me a very special gift in linking the article of your journey. My dd, who has been feeling sick for so long, was just seen this week by the doctor who was so key in helping you. It was an experience like no other, and after reading your post, I have even more confidence in his ability to help us. Thanks so much!

[Grover]

http://www.ndcforyoungchildren.com/docs/Wash_Po_08242010.pdf

 

 

oh my goodness, thank you for sharing this. I am working with a family at the moment whose child you just described, almost exactly. He was screened for fragile X using a micro array, but has never had a complete genetic work up - I will suggest this as a further course of investigation as they are at a loss right now.

[Χά�ων]

My DS has seen several specialists in learning disabilities. The first was a private neuropsychologist. I was unimpressed with everything she said. Nothing fit with what I knew of my son. When I called another neuropsychologist at the local children's hosipital and I was told I could hire a private tutor and that with time my son would be able to function but would have to learn to "live with it". That did not make sense to me. I still do not understand all the doom and gloom from neuropsychologists about the future of children.

 

I finally called and set up an evalutation with a private learning disability specialist. This man got into the field when his daughter was young. He felt that she could do more even with an IQ of 65. He was right, he found several programs (neurofeedback, interactive metronome, fastforward, irlen lenses and so on) and was able to help her maximize her potential. She reads at the 4th grade level now.

 

He tested DS and found an IQ difference of 39 points. Wow! That is a big difference and enough of a difference to make specialists pay attention to DS instead of writing him off as mentally impaired. The specialist found severe visual and auditory processing problems and the two combined made it pretty much impossible for DS to read beyond early 1st grade level. That fit with my experience in trying to teach DS to read and the experience of the OT and SLP my son saw when he was 3-5 years old who tried to teach him letters and letter sounds.

 

He wrote out the test results as well as reccomendations and put them in order of importance to tackle. We started to tackle visual issues. I put DS in vision therapy (it was actually covered by insurance) and a few months later grandpa paid for irlen lenses. Within the first week DS of having the lenses DS could tell the letters apart, something he has struggled with for years. It is not cheap but I am sold on this man's methods and I plan to follow all his reccomendations. I am excited that we have a plan in place to help DS reach his full potential instead of just teaching him to learn to live with not being able to read.

 

 

You know your child best. If something deep down inside you says that the "professionals" are wrong then trust that and seek alternatives. There are a lot of different therapies avaliable to help overcome learning disabilities.

[AmyontheFarm]

Kinsa, you worded that wonderfully!

 

I knew something was different about my son when he was 2 days old. Now, when a new Mom whispers there might be something wrong, I don't poop-poop the concern away, I stand firm beside her and help her fight for answers. I don't want any mother walking this road alone! I feel like that because NO. ONE. WOULD. BELIEVE. ME. :banghead:

 

I even had one family member state to me that I just WANTED there to be something wrong with my son. Yeah, I still talk to that one.

 

Trust your Mommy gut.

 

I was told my child would never graduate from grade school, let alone high school. This is the same kid who was doing algebra this morning and can tell you what Anemographia means. Did you have to look it up? LOL

 

I knew it physically would take him longer to learn things, I knew I could learn how to teach him to learn more effectively. For my child it meant getting him a laptop and digitizing everything for him. Does his school work look different from the "normal" kid. Yeah, everything has to be typed. Very rarely does he use a pencil for anything other than Math, and even then Mom will scribe while he dictates if his hands are tired. But that's my kid.

 

Us Mothers will move mountains for our children, even if it means we have to do it one grain of sand at a time.

[Guest]

:lurk5: for now. I'll be back later :).

[GoVanGogh]

Thank you so much for this post. The replies have all been beautiful. :grouphug:

 

Right now we are still just trying to get answers. This week has been so frustrating.

Our pediatrician sent us to an OT for an evaluation, but OT is sending us back to our pediatrician for medical testing and neuro eval. Pediatrician didn't return any of my phones calls all week. :glare:

We spent the first few years of our child's life trying to get answers. Every doctor would comment on this issue, then try to brush it under the rug like they didn't want to 'own' the issue. We were then told we were over-anxious first-time parents, child would grow out of issue, it would resolve on its own, etc. When our child was ~3, we were told it had officially "cleared up."

Now here we are, with a 10 1/2 year old, having an OT tell us, "Hm. Your child has been masking this issue..." That old issue is still there. What we thought was just a quirk is actually our child's way of hiding this old issue.

I feel like I have wasted six years of homeschooling, working daily on penmanship and not getting anywhere. So I am just frustrated every which way right now. Frustrated with doctors. Frustrated that OT is so expensive and that they would be telling us upfront that they don't ever expect our child to be able to write fluently. Not sure how to go forward with homeschooling.

[NittanyJen]

I am absolutely loving all the posts on this thread, and I also want to thank everyone else, especially Kinsa for taking the time to share her story in such detail. But, Jen, you gave me a very special gift in linking the article of your journey. My dd, who has been feeling sick for so long, was just seen this week by the doctor who was so key in helping you. It was an experience like no other, and after reading your post, I have even more confidence in his ability to help us. Thanks so much!

 

That particular facility is a very special place-- I used to work there myself, and that doc is very well-loved by his patients and their parents for a good reason. You are in excellent hands.

 

I hope your daughter is feeling on track soon, and that you have some answers heading your way.

[Mukmuk]

:grouphug: These posts brought tears to my eyes. I love it that you are a strong, strong bunch of women. Sorry, where's that tissue box again.

 

Yes we were shushed away by so many experts, "specialists" who, when confronted with my son's big IQ number thought I must be some dissatisfied hot houser. No one believed his vision issues affected his reading because he hit the top levels. The 1st audiologist listened to the way he spoke and declared CAPD was impossible, and proclaimed that he must have ADHD instead. What's an aud doing, diagnosing ADHD!? Yet, day-to-day was tough! It wasn't until we met our NP at the start of this year that so many things made sense. Yes, he's PG, so he compensated for his vision and auditory processing which were at the 1-5th %tile of age cohort. This is a massive disparity. It really was critical that we found people who were not impressed with the facade, but were able to get down to the basics. I'm just glad we did!

[Guest]

I only had time to get as far as Karen's (aka Kinsa) for now and I wanted to thank you Karen for sharing your experience. I am sure it wasn't easy :grouphug:! I can't even begin to imagine how difficult it must have been, and must be for you :(, every day!

[dbmamaz]

When I started looking for a dx for my middle child, I think i was just curious why he was always in trouble at school. after 3 different attempts with three specialist over a 2.5 year period, the first dx totally threw me for a loop. adhd and aspergers. I cried and cried that my perfect, beautiful boy was not so perfect. there were other diagnosis . . . including bipolar. lots of meds. processing and executive function and mood disorders. Eventually I was able to see that the mood disorder runs in my family and I - honestly more than once - felt that i never should have had children . . . realizing that the depths of despair I went through in my younger years was GENETIC in basis . .. and i GAVE it to my kids . . . so heartbreaking!

 

Overall i've accepted it - he was first dx'd just before turning 9, shortly before the panic attacks and suicidal tendancies started. The meds made a huge difference, and the homeschooling made a huge difference, but still sometimes its so heartbreaking to see him out in public with other kids his age ... he is ticking, bouncing, waving his arms, stammering, and is totally unfocused and it really worries me if he will ever live independently . . . despite a high IQ! and sometimes when i see his 9 you brother showing more signs of maturity than the 16 yo, its still heartbreaking.

 

but yes, for the most part, you get over it. and yes, its like any other mourning . .. it comes and goes but its never TOTALLY gone and can still sneak up on you unexpectedly. But you do learn to accept the new normal and to fight for your child and to see your child and his potential, not his shortcomings, not the child you THOUGHT you were getting

[Guest]

Back for a few more minutes. I also wanted to thank merry gardens for starting this thread and everyone else for sharing a bit about their story, although I have not finished reading the whole thread yet.

 

Jen, all I can say is WOW :(! I am really happy that you at least found out sooner rather than later. Still a painful thing to know how much it will affect his life :grouphug:. Your boy's words brought tears to my eyes! What a brave and strong boy you have!

 

Kelli, so good to hear you are on your way to finding out what is going on with your girl. I have been meaning to PM you but didn't want to pry.

 

I am absolutely loving all the posts on this thread, and I also want to thank everyone else, especially Kinsa for taking the time to share her story in such detail. But, Jen, you gave me a very special gift in linking the article of your journey. My dd, who has been feeling sick for so long, was just seen this week by the doctor who was so key in helping you. It was an experience like no other, and after reading your post, I have even more confidence in his ability to help us. Thanks so much!

[Tiramisu]

Back for a few more minutes. I also wanted to thank merry gardens for starting this thread and everyone else for sharing a bit about their story, although I have not finished reading the whole thread yet.

 

Jen, all I can say is WOW :(! I am really happy that you at least found out sooner rather than later. Still a painful thing to know how much it will affect his life :grouphug:. Your boy's words brought tears to my eyes! What a brave and strong boy you have!

 

Kelli, so good to hear you are on your way to finding out what is going on with your girl. I have been meaning to PM you but didn't want to pry.

 

I'll pm you. Pry away!!! If it weren't for the open hearts I've found on this forum, this journey would have been much harder, so I hope to be the same way myself. I'm very willing to share what's going on but sometimes I wait until I process it and am certain before I give inaccurate information.

[rafiki]

nt

[GAPeachie]

Subbing so I can find this later. I can't read through my tears.

[freeindeed]

:grouphug:

Thank you all for sharing. I believe I have moved to acceptance where my dd4's needs are concerned, but there is a part of me that teeters on the brink of sadness some days.

[Guest]

I'll pm you. Pry away!!! If it weren't for the open hearts I've found on this forum, this journey would have been much harder, so I hope to be the same way myself. I'm very willing to share what's going on but sometimes I wait until I process it and am certain before I give inaccurate information.

 

:grouphug: I got your PM. Thank you! It was very nice of you to take the time to share :). This weekend is Thanksgiving weekend for us in Canada and since my hubby is working tomorrow we are having Thanksgiving dinner today so I am rushing around. I hope to be back a bit later.

[NittanyJen]

 

Then I wanted to do something, how can I fix it?

 

After researching and trying therapies and diet, everything in our day became colored by their evaluations.

 

Those weren't the lenses I wanted to see my children through. That October I decided to take a step back.

 

...<other good stuff snipped>...

 

 

I have peace with where we are. I have an amazing relationship with each of my kids. They are fascinating individuals. We are enjoying the journey together.

 

I love watching them blossom into who they are.

 

- Michele

 

This part is so important it is worth repeating!!

 

I too, got into an early mode where I felt, "Okay, now I want to fix everything!" I wanted to research EVERY needed therapy and test and rush him into all of them right away and ceaselessly and just . . . fix it. That's what Moms do, right????

 

I too realized I had to slow down. My child wasn't broken, and he didn't need rapid repairs. He was the same child he was the day before his diagnosis, and he was a child, not a diagnosis. For everyone's sanity (my husband, my genotypical child, myself, and my affected child) I had to back off and take a deep breath, and remember his first role in my life was simply as my child.

 

Yes, I needed to deal with things, but not all at once, and not to the point of taking over our life and making his challenges the center of our existence.

[GoVanGogh]

This part is so important it is worth repeating!!

 

I too, got into an early mode where I felt, "Okay, now I want to fix everything!" I wanted to research EVERY needed therapy and test and rush him into all of them right away and ceaselessly and just . . . fix it. That's what Moms do, right????

 

I too realized I had to slow down. My child wasn't broken, and he didn't need rapid repairs. He was the same child he was the day before his diagnosis, and he was a child, not a diagnosis. For everyone's sanity (my husband, my genotypical child, myself, and my affected child) I had to back off and take a deep breath, and remember his first role in my life was simply as my child.

 

Yes, I needed to deal with things, but not all at once, and not to the point of taking over our life and making his challenges the center of our existence.

My DH and I just had this conversation this weekend. He said I was being impulsive. I said, "But I'm the sort when I see something that needs done, I will roll up my sleeves and jumps right in! That is just who I am." It is doubly hard to have patience when it involves your child.

[Mukmuk]

My DH and I just had this conversation this weekend. He said I was being impulsive. I said, "But I'm the sort when I see something that needs done, I will roll up my sleeves and jumps right in! That is just who I am." It is doubly hard to have patience when it involves your child.

 

Lol. This is me too. DH says I'm an engineer at heart. I have a difficult time sitting on my hands and be in a state of "not doing". Finally, and honestly because some of the therapies have worked, I feel I can sit back and relax. These are good reminders nonetheless. My child is my child, and I appreciate him for what he is. *deep breath*

[8filltheheart]

We always knew something was different about our ds. From the time he was a baby his sleep patterns were different, his activity levels were different, his motor skills were different. But, he was smart and tender and had a heart of gold. We adjusted our family life to accommodate what he was capable of doing and life was good.

 

As he got older, his differences became more pronounced. What was just a little different at 4 became hugely different at 10. Quirks became more. Behaviors started rapidly changing w/the onset of puberty. We have spent the last 8 yrs in various modes.....actively seeking assistance for him (from therapy to meds to support groups, etc) to just trying to survive through hrs of his behaviors.

 

But, honestly, it has only been since May (has it really been that short of a time.....I thought it was longer until I had to sit here and think about when we exactly realized:sad: ) that we really and truly have come to terms with our ds's disability. For his entire life up until May we had always thought in terms of his normal and helping him be the best "him" he could be and putting all our resources (time, love, and money) into helping him establish himself. It wasn't until May that we realized that we had not accepted that ds is disabled and that, no, he can't be anyone, anything he wants to be if we just find the right way to help him succeed.

 

It was life altering more than anything else we have gone through in the past 20 yrs. We had always thought in terms of "if Temple Grandin can do it, so can ds." But for us, that "disabilities don't really limit" mentality was really not accepting our ds for who he really is and it is not our ds's reality At this pt anyway and no time in any foreseeable future, no, he can't do or be anything he wants to be. We have finally accepted ds for who he really is and that young man is more than likely going to be dependent on us forever. It wasn't until we really understood that that I think we actually embraced the truth of ds's disabilities. Now that we have accepted that, we have set up trusts for his care, established legal rights, and accepted that having an adult child living w/us is going to require special living accommodations moving forward for many yrs and most probably until we can no longer care for ourselves.

 

Even though he is incredibly intelligent, working at Goodwill sorting through stuff in their warehouse is a low-stress, routine, methodical job that he really, really loves. He is incredibly happy there. Not having a real career may sound like a minor thing to accept, but for us it was a huge mental hurdle, an interior parental block, and now we see our ds with new eyes that are far more realistic and more honest......and ultimately, far more fair and just to the young man that needs us to embrace that he is disabled and,yes, his disability disables and limits what he can accomplish. Now,and only now, have we really begun to accept our ds in his reality and not the one we were attempting to craft for him.

Edited October 8, 2012 by 8FillTheHeart

[SkateLeft]

I also knew something was different from the very beginning. I have three older kids who are normal. This one was different.

 

After 4 years, we're still coming to terms with things. There are days when I can't picture him going to college, getting a job or getting married. Last week, my son's therapist and I talked about how different cultures view difference. As part of our SOTW 1 stuff, I'd read the picture book "Kali's Song," where a prehistoric boy learns he has a gift that makes him different, and his tribe celebrates by making him a shaman. I know some people have issues with that stuff, but my point is that Kali's difference was seen as a gift. His family saw it as something that made him special.

 

So I'm working around my feelings of difference, and my relationship to the OCD, while trying to help him deal with his.

 

Ironically, I'm more okay with the medical stuff - the cyst in his brain and his growth disorder, than I am with the mental illness stuff. It's easier for me to come to terms with something quantifiable.

 

We've taken my son off of his medication twice to see what was underneath. Most recently, we took him off this summer for an updated psych eval. Some part of me has wondered all along if he'd outgrow it. When he's on medication, it's easy for us to think that he doesn't really need it. We forget the constant hand-washing, the mile-long list of contaminants, and the opening and closing doors all night long. But off the medication, things got increasingly worse this summer until we hit an OCD crisis. I realized finally that he's not going to outgrow this. It's part of who he is, and he will always deal with it.

 

I recently saw the video where Howie Mandel talked about his OCD on 20/20, and it was encouraging because his manifestation of OCD is so much like my son's, yet he's been married for 30 years and has three kids.

 

But then, we have days where the OCD is overwhelming. The compulsions are like mosquito bites. Sometimes, you scratch it and get relief right away, and other times you scratch and scratch and it just makes the bite itch more.

 

This fall, we've discovered that my son loves art. We're a science and math family, so we tend to do less art, and more science experiments. He's been producing page after page of self-portraits in oil pastel. He fills the whole page with colors, and I'm stoked that he's using his hands! His OT and therapist have emphasized that art could be an important outlet for dealing with his OCD, so I'm thinking through that at the moment.

[TippyCanoe]

nm

[merry gardens]

Everyone who shared here--thank you very much!!!

:grouphug:

You are an amazing group of women.

[Guest]

I love reading all the posts. I always learn so much! 8FillTheHeart's particularly, really spoke to me. I guess because her approach sounds a lot like the kind of person I am and I feel that I am at the beginning of her journey in a way.

 

I wanted to say here, as someone who grew up with a sn's sibling, who had my own differences, and as someone that also sees differences in my own kids, that we all process differently. I think a lot has to do with our background, personality, life experience, and the severity of our child's disability or difference if you will. I watched both my parents process differently what was going on with my sister. I witnessed various levels of acceptance at various times, and I watched them worry about what would happen to my sister when they were gone. In our case my sister has lived a pretty normal life, had a family of her own, and is doing ok. Not everyone is so lucky though. So when I see people dealing and accepting their own situation in their own time, I try to keep at the back of my mind how different each situation is. There is no right or wrong way. There are just human beings trying to cope as best they can and trying to do the best that they can for their child.

 

In our case the differences in my boys have not become a disability so far. We are finding ways to work around our situation using different approaches and targeting weak areas. I am gradually processing, every single day, as is my husband. We do not have evaluations but will not hesitate to get one if we see the need. I am grateful for some recent issues that made us change the school we had our oldest enrolled in, which lead to a discussion with some people in the new school, and we have been offered the support, should we decide to get the evaluation done. We have not decided to go that route yet but it is good to know that now we have the support should we need it :).

Edited October 9, 2012 by Guest

[RamonaQ]

Sorry, finally getting some time to respond... I am so grateful for this board and that we can offer this place to hear each other's stories and what is inside each other's hearts.

 

I think that initially I experienced a lot of confusion and isolation. Something was up with my ds, and he wasn't reading, behaving, writing like the other kids (or at all!) Then with the diagnosis there was relief that there was a name, some understanding and direction. I wish we would have found that out much earlier on in our journey, but looking back, that time when I would just sit and read to ds for hours (because he was not capable of reading the books at his intellectual level), those are some of my happiest homeschool memories. I did indeed experience the grief that many have spoke about....about feeling "not perfect", about worrying if my ds will find success in life, about how hard things can, and will, be for my ds.

 

Then there was the phase of working incredibly hard and remediating. This was probably one of the more stressful times of my life....mostly between the hard work and the worry about where we would end up. Luckily, we had incredible support and given a vision about what a remediated dyslexic kid would look like (one who still needs accomodations but could do "just fine").

 

These days I am feeling a lot less worry as I see ds take on increasing challenges and excel, along with his ability to work independently. I am even feeling some joy as we approach upper-level material-- seeing how his brain works and what he is capable. Of course, I still worry as we get ready to launch him to high school next year. I see the areas of struggle, and how easily I can accomodate those at home (extra time; typing/ speech-to-text; electronic materials to allow text-to-speech), and I wonder if he will be as easily accomodated in a school setting.

 

Mostly, these days I am just trying to have faith. Our past has shown that we can "solve" things for a better outcome, we have been able to seek out appropriate support/ interventions/ accomodations, we have been understood and supported, and ds has shown to be a gregarious, conscientious, hard-working kid (when he is not being a 13 yo :lol:). This is where I am trying to put my energy....less worry, more faith.

[MeaganS]

My daughter is only 4, and I honestly don't think I've come to terms with it yet, and probably won't for a long time. A lot of that has to do with the fact that at this point, I don't know what she will or won't be capable of. The unknowing is the hardest part, I think. It gives me reason to hope, but also to fear, rather than just dealing with it one way or the other.

 

I'm so used to her that sometimes I forget how different she is. It is only when I see other kids her age that the difference becomes striking. I do know that she is a happy girl, so if all else fails, I think she will have a happy life. She has lots and lots of family that love her and accept her. I am worried/interested to see how her relationship with her little sisters change over time. Right now she is socially about the same as her 2 year old sister. They are mostly peers, but I see dd2 going past her here pretty soon, and I hope we can help her sisters be loving towards her as they get older.

 

I also struggle with perceptions of people on the outside. She was diagnosed autistic by the highest experts in the field within hundreds of miles, but sometimes I feel like we are posers when we call her autistic. She's very high functioning and at her age, she just seems a little immature or off to people who don't know her well. I imagine this will change as she gets older, but for now, I feel very uncomfortable calling her autistic, even though she qualifies. This fact alone shows me that I haven't taken it in completely yet.

 

Mostly I'm just used to the way she is and have learned how to work with her without really thinking about it. I haven't made any long term plans because we really have no idea what she will or won't be able to do. We'll continue to take it one day at a time and see what happens.

[Lots of boys]

I wanted to say thank-you for all the wonderful posts. I have a ds 4 that has Apraxia of speech, global apraxia and hypotonia. I worry daily about him and the future and just wanted to say thanks to everyone for your wonderful posts.

[SunshineMom]

Thank you for your thoughtful posts, I really needed to hear I wasn't alone.

[dkpalaska]

An excellent thread, Merry Gardens! And thank you so much to everyone who has shared here.

 

I don't have a lot to share about my journey, which has been much as others have described (particularly Kinsa). I did get stuck in an extra-long and extra-deep grieving stage this year and part of last - in part due to ds's diagnosis and struggles - which descended into depression. (It was also due to other struggles in our family, plus apparently my personality type is prone to it.) I can't recommend highly enough seeking help if needed. I hated the thought of medication, but it's taken the edge off and I am able to be a much better mom these days.

 

:grouphug: It's invaluable to have the support, encouragement, and inspiration that this board provides. Thank you!

[Guest]

dkpalaska :grouphug:

 

I felt the need to add, for those of us that are fixers, that we are not trying to fix our kids. I am not saying that no one does. I am just saying that not everyone does. What we are trying to do is help our children in those areas that we feel they need it, in order for them to function in the world as best they can one day. There is a difference between trying to fix a child and trying to help them work out challenges. I think we all do that for ourselves also. I know I have my own challenges and I work on them. It is the same mentality I try to follow with my kids.

[Kaleidoscope]

I have 5 kids with dxs. I'm at a loss. Overwhelmed doesn't begin to cover it.

[amo_mea_filiis.]

I read this thread last night and really needed it.

 

I have accepted dd. She has aspergers, but is otherwise doing great.

 

I honestly do not think that i've accepted ds as he is. I don't know what to do with him, don't yet have an accurate diagnosis. I've been at this for just over 7 years. He has seen so many Drs, but we have not yet found that one amazing doc to break everything down.

 

I think his IQ is in the average range, but what does that even mean? His language is poor, but i have nothing to compare to because he tests well. It would help *me* a lot if i could accurately say his language and processing was that of a 3-4-5 year old, but i dont know. What is not helpful is knowing he maxed out on the speech tests for his age range, but in an odd way.

 

It's not helpful knowing he can "function" in a regular classroom, but when i observed him, he was just so lost.

 

I dont think i want to fix or cure him, because that would take away who he is, but i know there is a sweet boy under all that anger and rage.

 

There has to be an alternative to the way we do math; he sits, starts screaming i dont know, when theres nothing to not know yet. I yell, he gets away from the table, we dont do it. But then later, i "catch" him counting by 2's which is exactly what we were attempting to do, but didnt get through.

 

Anyway, i think im going to read this thread daily and kinda's post is going on my night table to remind me that we all go through this.

[3kidswild]

I think Kinsa summed it up best. I went through the same range of emotions she so accurately described.

 

It was hard because he was our oldest, my precious baby who the sun rose & set on. He memorized books at age 2. He was funny, super smart, and so cute. Yes he had quirks but, with our family backgrounds, we just thought our odd genes mixed together more strongly in him.

 

In elementary school, we started to suspect something was off but all the teachers reassured us nothing was wrong because he was well behaved, smart, and loved to read - a teacher's dream.

 

But by Middle School, it was clear something was wrong. The stress & anxiety of multiple teachers, switching classes & staying organized became too much for him. We changed school districts and the new one right away picked up on the issues and started the whole ball moving forward.

 

I struggled with guilt for a long time - why didn't I push more, why didn't I ask for testing if we suspected something, if only we had known sooner we could have gotten earlier therapy, and so on...but you know what...I have to believe we went through everything for a reason and it is what it is. God gave him to us with His plan in mind. And honestly, I've learned so much. I have done things I never in thought I could. I am in a place in my life where I never suspected or even thought I would be. Yes every day is not perfect, but isn't that the point? There is no perfect. It's about the small but simple joys.

 

I read a friend's facebook page the other week where he talked about his son's football game and how he didn't make any tackles or sacks in the game. I just sighed when I read it and looked at my son who is the same age. He told me that day, after years of wearing athletic pants, he wanted to wear jeans. For years it was "jeans are stiff" "I can't button them" "I hate the feel". I thought of it and smiled so big. A small sign of progress. A simple joy.

[Guest]

I am going on a forum break for a while. Our Calvert materials just got here :D and I have lesson planning (this late in the year) and reporting to our school, not to mention that I need the free time to spend with my kids.

 

Anyway, I just wanted to touch a bit on acceptance, at least how it worked in our home. First I wanted to say that I never cried when I realized that my kids were different. This was why I said before that acceptance depends on background, personality, life experience, and the severity of the child's sn/ disability. I would have cried if my child had a terminal illness, and I would have cried out of concern, if I had a child that would not be able to function on his/ her own after I was gone. I would be worried what would become of my child and how the world would treat him/ her.

 

I am Greek, and in my culture we take care of our own. Things have been changing these days but for us, the children living with their parents until they get married, is not uncommon. Children with special needs are kept home and taken care of by the mother and elderly parents are not put in old folks homes. I have two sisters but have promised myself that I will be taking care of my parent that survives the other. I would have done or would do the same if I had a child with severe special needs. Would it be easy? No! But it's not something that would be a shock to me since it is part of my culture. Every child is a gift from God, regardless of their needs.

 

Accepting that my child will not be able to do what others kids can do, again, was not difficult. My upbringing and life experience has brought me to a level where I don't compare my kids to others. I saw very early on that my oldest would not be into sports (primarily team sports). I was not into team sports myself. That type of competition was not my thing, but I loved any athletic activity where I had to depend on myself. I was a fast runner (did well in the 100m and 400m), good in long jump etc. I did not worry about what was not me, I just got involved in what I was good at. This is how I see my kids also. I focus on what they are good at. We are not going to be good at everything! Not even nt kids ;). It was harder on my hubby though, but he did reach a level of acceptance pretty quickly also.

 

In closing, I wanted to say that I have not set goals and dreams for my kids. I try to see what they are good at and guide them to pursue their interests. When I saw my oldest had a strong interest in trains, construction machines, etc. I helped him start his collection of trucks, trains, etc. I got him picture books since he was already learning the names of these vehicles and what they do (he was mainly into construction machines). I took him to construction sites (even though my sensory issues would go out of whack from the noise :lol:) and pointed out things to him while we lived in Dubai and had major construction going on around us. It was how I reached him when, especially with my oldest, I could see that he would often tune out about other things. I found common ground (I was into these things also :D) and I reached him. As he got a bit older, I bought him books with more facts, books on how to draw machines etc. I did the same when I saw his interest in building and especially bridges, and I am doing the same with my little guy (only his passion is animals). I love seeing them pursue their passions, mostly because a big part of my growing up had to do with living up to others' expectations for me.

 

This is what acceptance has been for me :). Have I dealt with frustration? Most certainly! The difficulty I have had, and my husband also, has been with behavioral issues. You see, both my hubby and I were the quiet kids in our family. We were the ones that followed the rules (ok, we broke a few but rarely). I hated doing things behind my parents back, so I didn't. I just argued my point and usually broke them with logic :lol:. My oldest seems to have inherited that trait. Frustrating at times but I still have to smile sometimes at how his brain works :D.

 

Sorry for all the rambling everyone. I have been on this board for about a year now (more or less) and have not had the courage to share too much until now. In my real life, I do share my concerns about my kids, and people around me do know that I suspect Asperger's in my boys and even myself (at least traits). I do take my time though. This is my kids I am talking about and I always have to think whether I am invading their privacy, also. That is always a concern in the back of my mind too.

 

See you all in a while :)!

Edited October 14, 2012 by Guest

[Rose in BC]

Oh, boy. This is a loaded question. Where to even begin?

 

I have run the gamut of emotions. When we were seeking the evaluation, I thought we were dealing with a "mild learning disability" like dyslexia or something. When we met with the neuropsychologist and got hit with "mental retardation", it was like a load of bricks fell out of the sky... like I had been punched in the gut... like the world came to a screeching halt.

 

For the first 24-48 hours or so, I was in denial. I was convinced that this doctor was a quack. I was sure that she tested him wrong. I was positive that she couldn't have spent enough time with him to know him well enough.

 

Then, I cried.

 

I cried for a week. Every time I looked at my child - the child that I have overwhelming love for - I cried. It's hard to put into words exactly WHY you cry, but you do. I suppose it's because you are grieving over the loss of an imaginary future that you always thought your child would have. Every parent, whether consciously or not, dreams of their child growing up, graduating, moving out, starting a job, getting married, and having an independent life from you. AND, you dream of your "empty nest" years - the traveling, the unencumbered frivolity associated with not having kids attached to you anymore, the growing old and sitting in a rocking chair watching the world go by. But NOW - well, all of that has suddenly been changed by a few simple words from a doctor.

 

And that's why you cry.

 

After a week or so of that, you start to panic. After you realize that the future is NOT what you have always thought it would be - what everyone else in the whole entire world promised you that it would be - then you start to consider what, exactly, will that future look like? Your mind goes in a thousand different directions as you start to consider that maybe you CAN'T homeschool this child anymore, so where should he go to school? What types of services should your child have? Should you apply for Social Security and Medicaid benefits? Should you apply for special assisted living accommodations NOW since the waiting list is YEARS long? What about financial considerations for the future? Should you set up a special needs trust fund now, or later? Should you change your life insurance to include your SN child? ON AND ON AND ON AND ON... your mind can't stop.

 

But then, it stops.

 

Then you start to get angry. Why did it take the doctors nearly nine years to come up with a diagnosis? Why didn't they listen to me when he was only FOUR MONTHS OLD and was banging his head repeatedly? Why didn't they take me seriously when I told them that he was an EXTREMELY picky eater? Why was it all brushed under the rug for so long? Why didn't anyone listen to me when I told them, over and over again, for years and YEARS, that SOMETHING wasn't right with my child?

 

And why did God let this happen to me? Is this some sort of punishment for making fun of mentally retarded children when I was a kid? Doesn't God realize that I'm in Mensa? I'm smart, for cryin' out loud! How could *I* have a mentally retarded child? What sort of sick, cosmic joke is this, anyway?

 

Then the guilt sets in.

 

What type of mother complains about her child's condition? I'm such a bad mother! I should love him unconditionally - and I do! - but... well... I just wish he weren't this way! But if I wish that, then I must not fully accept him for who he is, right? Guilt... guilt, guilt, guilt. Any "good mother" wouldn't feel this way.

 

And finally... acceptance.

 

You cut yourself some slack. You realize, after talking with other SN moms, that all these feelings that you don't know what to do with? Well, they're NORMAL. It's okay! You're okay!

 

And guess what? Your son is okay, too!

 

And you realize that this is a blessing in your life. And you realize that God will use this to hone your soul. And that He will use you to minister to others who are going through it. And you realize that YOU WILL BE OKAY.

 

You start to reimagine the future... with your child in it. All grown up, and with you. You start to realize that it's not everyone else's "normal", but it's yours, completely yours.

 

And it's good.

 

The process is long. It hurts. It's confusing. No one will tell you that it's not a wild ride.

 

It is.

 

 

This described me (kind of still on the journey) when in May we learned our 16 yr des was MR. Thanks for writing this.

[akalori]

Thanks everyone. I'm in the phase where I have more questions than answers. My son has deficits in all areas of his life - but somehow no diagnosis fits well. He is my oldest. We love him as he is. I just wish I had a clearer idea of how to make life easier for him. It is hard being a square peg in a round hole. He is only 9 yrs old so maybe I will get more clarity in time. It is inspiring to read everyone's posts.

 

Lori

[Guest]

Thanks everyone. I'm in the phase where I have more questions than answers. My son has deficits in all areas of his life - but somehow no diagnosis fits well. He is my oldest. We love him as he is. I just wish I had a clearer idea of how to make life easier for him. It is hard being a square peg in a round hole. He is only 9 yrs old so maybe I will get more clarity in time. It is inspiring to read everyone's posts.

 

Lori

 

Lori, I am on a forum break but could not help but notice your post. My oldest is almost 9 (will be later this month). I was in the same place you are at about 1 1/2 year ago. I started by researching ADD (ADHD) through the library (then later bought some of the books I wanted to keep) and when that did not fit us well I moved on to Autism (and Asperger's specifically).

 

Through my research and through these boards I have found various programs/ books to work on areas of concern. I am not sure if you have or intend to pursue an official diagnosis. In our case we have not, so far. We are keeping up well for now, without any serious concerns, just by targeting areas of weakness. We cannot afford an out-of-pocket neuropsych evaluation and (we live in Canada) there is a long waiting list for a diagnosis through our medical plan. Our school seems to have a good special needs program though and we will approach them to look into an evaluation, if we reach a point where we feel the need.

 

Anyway, I usually don't offer advice because we have not been at this long enough for me to feel like I have useful advice to offer ;) but one thing I wanted to tell you as one parent to another, let your instinct guide you on how to approach this.