I think I accepted this yesterday

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

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liz
Posts: 168
Joined: Sat Jul 02, 2005 8:47 pm

Postby liz » Wed Feb 07, 2007 6:59 pm

MCA,

My son took basketball at the YMCA. The coach there had my son sit on the sidelines for about 45 minutes out of the hour playing time, while all the other kids spent about 45 minutes on the court. My son would be bouncing up and down the court while he was playing. (I think the sounds in the gym echoed or something, and it was a lot for him). I took him out of that group and put him in with a younger group of kids and a nicer coach and the rest of the season went OK. If you have to walk out on the court and talk to your son, I would do it. Who cares? I took my NT son to baseball on Monday and he was acting like a goofball. He was putting orange cones on his head like a hat. I walked out on the field and had a talk with him, while all the other mothers watched me. I know if it were the same situation with my ASD son, I would have been all worried about what they were thinking about him. But even NT kids need parents to step in sometimes. I think if you give up on basketball it's going to be easier to not try other things and give up on sports altogether.
When my son was in first grade, (he's in third now) I was afraid he would never have a real friend. He used to touch other kids SO MUCH that it would drive them crazy. He could play with kids for a little while, but he always got on their nerves and it didn't last long. Now in third grade he does have friends. Things aren't perfect, but I'm not looking for perfection. I asked him about recess today and he told me that boys were playing a war game that he wanted to play. They told him they had too many kids on their team and he couldn't play. He said it made him feel bad. But instead he sat down with two other boys, they were drawing pictures and he was the judge telling them which drawing was better. I can live with that. He has some playdates, some are OK, others not so great. In first grade he had trouble finding kids to sit with in the cafeteria, some kids would run away. This year that's not a problem. He is never going to be Mr. Popularity, but I think he will have friends and he's going to be OK. A few years can make a big difference, try to hang in there.

Liz

Grandma C
Posts: 1370
Joined: Sat Feb 26, 2005 9:04 am

Postby Grandma C » Wed Feb 07, 2007 9:14 pm

After I wrote my earlier post, I talked with Evan's ST. She reiterated for me how well he is doing :) ! As I rushed him to his home (about a half hour's drive) to catch his school bus, we talked about different things. I am back to feeling very optimistic. I think 4 l/2 is way too young to start to think that things might not change....things will. Maybe not everything, but a lot has to change for any 4 l/2 year old to being an adult or even an older child. All children grow in various ways in that time span. Who knows what might change? We MUST keep looking forward!!!

As I took him on the bus and gave him a kiss, he turned to me with tears forming and his little lips quivering. It broke my heart....I wanted to tell the bus driver...give me my "baby", I'm taking him home. I know he was fine, but I cried for five minutes :( !

Good luck to all of us,

Grandma C

Grace
Posts: 3910
Joined: Wed Nov 23, 2005 8:54 am

Postby Grace » Wed Feb 07, 2007 9:42 pm

here is where i am at, 18 months into this life-change:
I was in church one night and there was an autistic boy, about age 12 or 13, sitting with his parents. He had a smile on his face and was talking, but sounded like he was 5. He wasn't terribly disruptive but naturally I was drawn to him because the only other autistic children I know are 3 and under! This boy was there with a message from God to me. I know it for two reasons: I had never seen this boy at church before that night, and I haven't seen him since. (not a very big place) Also, God spoke to my heart that night, as I watched this happy boy. I knew (without God actually using words :wink: ) that He was telling me it was time to accept autism. It was time to accept that JadenGrace is autistic. That was hard for me, because He has opened every door for Jaden to get well. I could be here for two hours telling you the things that have happened in our journey to find her help--things that I feel only God could have done.
So now i have to try to figure this out--God is healing my daughter, but he still wants me to accept that she is autistic.
Hmmm....

Heather
Posts: 562
Joined: Fri Aug 19, 2005 5:41 pm

Postby Heather » Wed Feb 07, 2007 10:19 pm

I haven't read the rest of the post but I struggle with this as well. I can't imagine my son in a world without numbers.. I swear he is one of those savants. He is one of those kids that does the mind calculations in seconds, and now just taught himself how to divide. I look at his incredible gifts and wonder if he was not affected by autism, would he be just well... ordinary?
Heather

jend
Posts: 1152
Joined: Fri Mar 10, 2006 1:34 pm

Postby jend » Wed Feb 07, 2007 11:27 pm

MCA-
I peeked in and saw this thread this morning but did not have time to respond. I have been thinking about you and this thread all day. I was hoping that by the time I logged on tonight I would have something really profound and inspirational to say. But words of wisdom seem to be escaping me :oops: .
I think this is something that most of us are thinking about on some level and it's so hard to let go a little and stop feeling so entirely responsible for every good and bad possibility. I think that the range of challenges that Aidan may face is so scary that I transfer that fear and energy into controlling everything I can now. Am I doing this so that Aidan can become indistinguishable - recovered? Well, yes and no. I'm not afraid of having a child that's different. It's not at all about what "my" dreams were for Aidan. Really and truly, if Aidan had no interest in marriage or large social circles, parties - fine with me. I really and truly, corny as it is, just want him to be happy. My fear is that he won't be happy because he will want things but lack the tools to navigate the NT world and fit in to have what he wants. So I guess, yeah, if all of a sudden Aidan started learning things on his own and catching up and fitting in - I would be thrilled. Autism is so ill defined, IMO, and it is so unclear, to me at least, if all diagnosed children are autistic because this is how they are - this is how they were born - this is a part of them for life or if there are different subsets who according to criterion are autistic but present this way for different reasons and need a different kind of help initially but with the appropriate help would no longer fit the criterion. Not becuase they are trying to fake it but because they just needed to arrive there a different way. For me, this is why it would be hard to let go. I mean if I could go to the doctor and they did a scan, took some blood whatever and said, Aidan is autistic - This is who he is - I would be in a totally different place. I would still do everything I needed to help him but my mind would be in a different place. I'm not there today, but I can see myself there as life unfolds.

MCA- I'm thinking, it sounds like you want permission to say, "I accept that my son will always be different." If you are feeling burnt out from wondering about a future without autism, then I say give yourself permission. You"re still going to do everything for your son to help him succeed. Part of that will be dependent on you feeling healthy. If the wishing and wondering is draining you then I would accept it. And you know the truth is, I don't believe that wishing or not wishing will make it true or untrue. Maybe you'll accept that he's always going to be different and then in a year - 2 or 3 low and behold something changes. I don't think you'll be worrying about the fact that you weren't expecting it. But, on the other hand, maybe you'll accept it today and 5 years from now your glad you saw it sooner rather than later because it allowed you to take a breath and just enjoy your son and life a little more. I wouldn't be afraid of "driving a nail in his coffin." Your accepting or not accepting something will not make it happen or not happen. You are an amazing mother, I really admire you so much. When I first started lurking around here, your knowledge about your son's programs, your questions, comments, stories- all of it was so inspirational to me. Your boy is so lucky to have a mom that puts so much into giving him the best life possible. He already knows that. The best thing you can do for him is to ask yourself what you can do for yourself to keep feeling good and enjoying him. Only you will know the answer to that - but whatever it is - it is not going to hurt him.
Kayley, 5(NT)
Aidan, 3 (PDD-NOS)

Alex's mom
Posts: 1626
Joined: Sat Mar 18, 2006 2:11 pm

Postby Alex's mom » Thu Feb 08, 2007 12:57 am

I'm there, MCA. Speaking for ds, his developmental curve will likely never join the typical one, it's not a matter of getting him "there", to then continue on a normal path, it's a different ballgame altogether. His developmental curve and the one of NT kids just don't intersect.
Setting an arbitrary NT standard against which to judge his progress is at this juncture unfair, because it would do injustice to his wonderfully sweet and funny personality , his hard work, his intelligence.
This realization hit me like a ton of bricks over 1 year ago, now I think I sort of made peace with it, as people usually do with everything that comes their way. We are financially planning for ds as if he would always be in need of outside assistance (it took a while to get DH to come around and at least intellectually realize that ds needed for us to make some special arrangements).
I'm not asking myself these questions too often these days. I am pretty clear that he will always be on the spectrum, but I certainly haven't ruled out the possibility of him having a fullfilling life and becoming a productive and well adjusted member of society.
I really think I accept autism just as well as an "ND" person would. I just happen to think it's (in Alex's words) a "big bummer" to have to carry around.

Alex's mom
"When many cures are offered for a disease, it means the disease is not curable" -Anton Chekhov

Jeffrey's mom
Posts: 188
Joined: Wed Apr 26, 2006 9:10 am

Postby Jeffrey's mom » Thu Feb 08, 2007 10:52 am

Not my original post, but I just wanted to thank everyone for their excellent responses here. This has turned out to be a really good thread MCA. Not as entertaining as some of your plights with therapists, but very insightful. As the parent of an older child, I often wonder when I will really be at peace with my son's diagnosis. I do know that something happened between the ages of five and six and I started to shift my paradigm a little. I actually dreaded Jeffrey's sixth birthday because I knew this was the magic age when the Lovaas kids were considered "indistinguishable". How horrible to fear your child's own birthday. My son is seven and a half now and far from indistinguishable. I know I am a long way from being at peace with the diagnosis, but I guess I could say that I am closer now than I used to be. Maybe more of a resignation than an acceptance, but I am trying. Jend, maybe you did not feel particularly eloquent in your post, but I thought you were right on the money. I still try so hard to help my son improve, but he probably occupies about 80% of my thoughts now instead of the whole 100%. At this point, I don't think that the lost 20% is going to determine whether he recovers or not. MCA, if you need to shift your mindset a little to make room for the fact that R may always have autism in some form or another, that is okay. You will will still fight like h*** to do your best for him. You are not driving the final nail in his coffin by accepting his autism - at least a little of his autism. You are doing what you need to do to keep yourself sane.

Jeffrey's mom

P.S. Alex's mom - I had to smile when I read your post. Once again we are on the same page. Maybe it is because our boys are a little bit older. DH and I had the very same talk a couple of weeks ago. We are now in the process of making arrangements to ensure that Jeffrey will continue to receive some sort of financial help from us into his adulthood. Prepare for the worst, and hope for the best I guess.

david's mom
Posts: 17
Joined: Mon Sep 18, 2006 1:59 pm

I think I accepted this yesterday

Postby david's mom » Thu Feb 08, 2007 2:20 pm

I'm fairly new to this site but this one reallly hit me. My son is older (now 14) and I feel like I've been there, bought the T-shirt, the bumper sticker, etc.

My son is a joy but that 'gap' between him and all those NTs out there is considerable and gets wider all the time. He doesn't have any friends who come over, or invite him over, and hasn't since about 2nd grade :( . His communication skills are limited and he simply doesn't enjoy doing what most other boys his age enjoy. TV/DVDs/movies are primarily Disney and he can recite entire movie scripts but can't actually follow the conversations (comprehension is lacking). He isn't interested in sports either as a participant or as a fan. He is almost always very happy at home with us and his movies, and he has his weekly routine, but has almost nothing going on outside of the immediate family. And yes, especially during those elementary years, I tried all kinds of things to see if something clicked with him and others/outside interests...but nothing worked.

Right now he's happy, cheerful, and very loving, but adulthood is looming out there and many of my wishes, hopes, maybe even fantasies, of his future possibilities have definitely changed over time. I too kept thinking that we'd find a therapy or treatment that would help him make that giant communication/social leap. But he's had good, steady progress and is SOOOOO much better than he was back at age 5 and 6.

However, I also look ahead with some concern, and even fear, at what's ahead for him. My current hope is that he will find a way to be at least semi-independent and continue to be happy. So I also have had my 'basketball' moments when my dreams and hopes for him have needed to be revised. I don't think any of us see that as giving up...more as needing to take another route.

I don't know - right now this feels like I'm really rambling. Most of these posts are with people with younger kids so all of the above may not be very pertinent but hope you know that you aren't alone.(geez, that sounds so corny but it's true!)
Mother to 14yr old PDD-NOS

david's mom
Posts: 17
Joined: Mon Sep 18, 2006 1:59 pm

I think I accepted this yesterday

Postby david's mom » Thu Feb 08, 2007 2:20 pm

I'm fairly new to this site but this one reallly hit me. My son is older (now 14) and I feel like I've been there, bought the T-shirt, the bumper sticker, etc.

My son is a joy but that 'gap' between him and all those NTs out there is considerable and gets wider all the time. He doesn't have any friends who come over, or invite him over, and hasn't since about 2nd grade :( . His communication skills are limited and he simply doesn't enjoy doing what most other boys his age enjoy. TV/DVDs/movies are primarily Disney and he can recite entire movie scripts but can't actually follow the conversations (comprehension is lacking). He isn't interested in sports either as a participant or as a fan. He is almost always very happy at home with us and his movies, and he has his weekly routine, but has almost nothing going on outside of the immediate family. And yes, especially during those elementary years, I tried all kinds of things to see if something clicked with him and others/outside interests...but nothing worked.

Right now he's happy, cheerful, and very loving, but adulthood is looming out there and many of my wishes, hopes, maybe even fantasies, of his future possibilities have definitely changed over time. I too kept thinking that we'd find a therapy or treatment that would help him make that giant communication/social leap. But he's had good, steady progress and is SOOOOO much better than he was back at age 5 and 6.

However, I also look ahead with some concern, and even fear, at what's ahead for him. My current hope is that he will find a way to be at least semi-independent and continue to be happy. So I also have had my 'basketball' moments when my dreams and hopes for him have needed to be revised. I don't think any of us see that as giving up...more as needing to take another route.

I don't know - right now this feels like I'm really rambling. Most of these posts are with people with younger kids so all of the above may not be very pertinent but hope you know that you aren't alone.(geez, that sounds so corny but it's true!)
Mother to 14yr old PDD-NOS

Susan'sHope
Posts: 901
Joined: Sat Oct 15, 2005 1:46 am

Postby Susan'sHope » Thu Feb 08, 2007 4:16 pm

I've just finished reading this thread and I feel like a blubbering mess. In a way it's hard to read so many posts that mirror my own thoughts, though at the same time it is comforting that I am not alone. I love my son with all my heart and sometimes I feel like such a sentimental fool with how much I love him and how I have a hard time controling myself from kissing and hugging on him. I'm always telling him how much I love him. I do know that I try not to let myself think to much about the things he's not able to do yet and I definitely try not to think about what exactly his future will be. I continue to hold onto hope, but I do wonder constantly how much he will actullay improve. I think I hold on to the hope for my own sanity. I use to compare my son to other NT children all the time and it was very painful. My son is 7 and he is not even close to being like a NT 7 year old. He is in a special ed class and all the children are very sweet. I've always thought that I wanted him to be mainstreamed so that he would have more NT exsposure to help him develope. Now I don't worry about it so much because I think I prefer him being in a special ed class because I don't have to worry about kids picking on him. I think I choose not to think about all of it to much because I can't stand that feeling of worry and fear of an uncertain future. I get through each day by taking it one day at a time and spending a lot of time concentrating on ways that I can help him.

This summer I want to get him involved at a place called Breaking The Barriers. They have all kinds of activities where they blend NT children with special needs children. I can only hope this means that the NT children that are there, are there because thier parents want them to be compassionate and accepting to others who are different. Plus I want my son to have a chance to enjoy all sorts of different activities and be around other children where hopefully everyone will be kind and accepting.

MCA, this is such a wonderful thread that you started and I want to thank you. Even though a lot of thoughts I've been supressing have been brought to the surface again, I think it has been a good thing and I'm so glad to not be alone in this. I think it's great that we share like this, I think we help each other stay strong. Big hugs to everyone! I am just one more to add to the list of moms with these feelings. We are not alone.....
Knowledge Without Experience Is Just Information ~ Mark Twain

MCA
Posts: 2124
Joined: Fri Feb 25, 2005 9:21 pm

Postby MCA » Fri Feb 09, 2007 2:45 am

I Image you guys. Thank you all so much for treating this post with dignity and thoughfulness. I'm still kind of in a daze viewing the world through this new lens, I guess.

It was strange today looking at the therapists and realizing that none of them ever thought my son would no longer be autistic when they were so positive about him. They meant that he might be able to live an independent life, which is certainly not a given at all, regardless of the fact he's learned a lot through ABA. I guess I always thought everyone believed he might get past this. I don't think anyone thought that but me, and I think I was deluded. I have no golden ticket. The emperor has no clothes. And every other cliched metaphor I can think of for this.

I will tell you guys this, it feels like a more concrete target to try to achieve an independent life rather than the nebulous "recovered." I'm not going to change a thing in the plan, still going to be a pain-in-the-as* parent, but I think the end goal is different. If some sort of "recovery" is possible or within reach I'll change my thoughts, and I hope for a lot of "our" kids that it is. Seriously, Respect, Diane, Tami, Dana, everyone, I <3 you guys, GO FOR IT. I pray you're right about the biomedical nature and you find something wonderful. I'm not ruling out biomed, I think it's fabulous, but I am seeing it as how to make his life the absolute best it can be rather than a cure.

This does break my heart. I already feel like I'm tolerating more stim because it makes him happy, when I need to make sure he fits in as best he can.

Thanks for the kind personal comments.Image

Anne_B
Posts: 178
Joined: Sun Jun 25, 2006 11:00 am

Postby Anne_B » Fri Feb 09, 2007 3:06 pm

momtoMatthew wrote:
"If I accept you as you are, I will not help you: however, if I treat you as though you are what you are capable of becoming, I help you become that"...Johann Wolfgang Von Goethe


"To love is first of all to accept yourself as you actually are. Knowing thyself is the first practice of love." Thich Nhat Hanh

Gabesmom
Posts: 643
Joined: Mon Mar 27, 2006 10:35 pm

Postby Gabesmom » Sat Feb 10, 2007 12:27 am

I've thought about responding to his topic, but haven't managed to come up with a response that I feel is suitable. In the most simplistic terms I can think of, I think that I accept my son for who he is today and that I will also accept him for who he is tomorrow and the next day and 10 or 20 or 30 years from now. This is not the kind of acceptance which means that I think all progress and development has halted. This is the kind of acceptance that is based upon the reality of who my son is and the unique path that he is on. I truly do take one day at a time. I do not know what the future will hold for him, but neither do I know what the future will hold for my daughter. I think there will be definite hurdles for both of them, but I cannot look at a three year old and a five year old and accurately predict the type of adults they will become. I think it is futile and even somewhat dangerous to do so. One can prepare for possibilities- should prepare, but there is a difference between preparation and prognostication. I am also wary of assigning value to the different potential lives my kids might have. It is not my place to say that my son will have a better life if he is on his own or if he is married or if he can blend into society. If these are things that he wants for himself, then he will have established their value in his own life.

I know I'm rambling here, but I also want to mention the fact that just because a kid has reached the magic age of eighteen does not mean that learning has ended. We seem to have this notion in our heads that if our kids can't do X, Y, or Z by a certain deadline, they will never be able to. I don't know about the rest of you, but I am always learning. In fact, I find that I am quite a bit better at learning the older I get. I bet if I put my mind to it, I could learn many things that I thought I would never understand as a child or teen. Life goes on; people continue to grow and change throughout their lives. Societies also change, sometimes for the better. No one, and I mean no one has a right to make a determination about the future life of another. My only advice would be- accept your son- the whole of who he is. Prepare for the future, but do not allow yourself to become a slave to the future. When we imprison ourselves in fear and apprehension, we very often take our kids with us. Childhood is too short- you both really need to enjoy it.
Jennifer, Mother to Anna, 5 (NT), Gabriel, 4, Autistic

Joey'smom
Posts: 1619
Joined: Sun Jan 29, 2006 1:19 am

Postby Joey'smom » Sat Feb 10, 2007 10:24 am

I don't know about the rest of you, but I am always learning. In fact, I find that I am quite a bit better at learning the older I get. I bet if I put my mind to it, I could learn many things that I thought I would never understand as a child or teen.


Gabesmom's post expressed everything so well that I am thinking and feeling. After having raised two older children now, it's all the more true. Learning doesn't stop at all at 18 - in fact, it's just beginning. Childhood is over, but adult learning starts.

Kids just change so much throughout their teen years. I had all these assumptions when my first two were little - neither are anywhere near the people I thought they'd be. They have surprised me in many new ways I never imagined.

I am my own best example. In high school I was a mediocre student - told I had no math aptitude, etc. Now I'm in nursing school in a very demanding curriculum making almost straight A's at 43 years old! Attitude has everything to do with it - and focus. I just learn so much differently now.

I don't see how it could be any different for our kids on the spectrum. Life will make more sense to them as time goes on. I know my son is intelligent and will figure out how to get around his disability - or whatever it is, this autism.

And I can't TELL you how many kids start out as such high achievers, then burn out early. I've seen so many. Then those littel low achievers, who no one paid any attention to, come up from behind and do awesome things later in life.
Joey, 10 yrs., PDD-NOS was our last dx
GFCF, Yasko, ABA
Hoping to get to RDI

MEGPL
Posts: 180
Joined: Sat Oct 15, 2005 10:29 am

Postby MEGPL » Sat Feb 10, 2007 10:45 am

Joe's Mom
Thanks you for writing the "suitcase" example. It is how I feel.

All Moms THANKS for your words. It is a great topic.

I just recently talked to someone who has severely autistic son. She said she needs to accept this and move on. I keep thinking of her...

I just wanted to share this:
Acceptance does not mean that we will give up. I think acceptance is a part of unconditional love. But the fact that I accept the autism doesn't mean that I will not push my kid to do more ... to work on one more skill...
My sister's 3 year old eats with fork and cuts with knife ... and my 6 years old had no clue how to cut a hot-dog ...instead of feeling sorry I said "this is a skill I will work on with my son"

It is really no difference how we teach typical kids ...If I just accepted the fact that my typical 10 years old son doesn’t like to brush his teeth and all he wants to do is play video games ... who would I create ? We set up the rules for typical kids, the same way we need to push-and-pull our disabled kids, and do it with love and respect for their abilities.

Few years ago a school speech therapist told me that my son would never speak. She said right in front of him! Yesterday my son came and said "I need a hug and kiss. I love you”...

Meg
PDD-NOS son ; 7y old

Joey'smom
Posts: 1619
Joined: Sun Jan 29, 2006 1:19 am

Postby Joey'smom » Sat Feb 10, 2007 12:33 pm

Few years ago a school speech therapist told me that my son would never speak. She said right in front of him! Yesterday my son came and said "I need a hug and kiss. I love you”...


That is wonderful! Have you been able to re-contact that particular speech therapist and tell her? I would.

I can't say I've ever had a problem w/ people telling us what Joey would do or not do, except for his developmental ped who said, "He will always need help."

Well, who doesn't need help? My older two continue to need help also. Of course, the degree of help varies, but what a miserable comment.
Joey, 10 yrs., PDD-NOS was our last dx
GFCF, Yasko, ABA
Hoping to get to RDI

MEGPL
Posts: 180
Joined: Sat Oct 15, 2005 10:29 am

Postby MEGPL » Sat Feb 10, 2007 8:38 pm

Joey's Mom,

I did not. I remember telling her that at home my kid was verbal (he was saying few words back then) and she replied that she did not believe his language was functional and probably just memorized without sense...

well... when he wanted juice and said "juice" ... wasn' t that functional?

I was very scared back then. I am not a fighter by nature and back then I was so quiet and humble because of my son's dx... I just totally closed in... I guess that was my way to deal with the news... so I did not have a chance to tell her "go to hell" ...
PDD-NOS son ; 7y old

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Postby Winnie » Sun Feb 11, 2007 2:05 am

Such an interesting thread -- I’ve been reading and reminiscing.

I remember being racked with worry post-diagnosis – perhaps even more acutely prior to diagnosis. Probably the most difficult period was between age 2 and 3 1/2. It wasn’t so much the diagnosis that was difficult to accept – it was more so the very negative prognosis rendered by the “expert.” The expert’s office had a gloomy, dimly lit, funeral-ish atmosphere – and that pretty much matched what she had to say. She offered us grief counseling (it felt like…gee… should I chose the economy pine box with poly-satin, or the worm-proof deluxe model?).

I was really angry with this expert for a while.

In hindsight, if I regret anything, it is allowing worry and stress to steal the day during that time. I think we are tortured by the unknown -- at least initially -- wondering if we are doing the right thing, or enough of the right thing. We are so pressured to do enough, believe enough, hope enough, and worry enough. And I think sometimes we are afraid not to frantically respond to these pressures, as should we relax somewhat, we will somehow cast a hex of failure upon our child. Accepting the differences is not the same as surrendering hope.

I think accepting a diagnosis is different from accepting a prognosis. A child’s potential is unknown – it has not been captured and defined by the evaluator – the expert cannot own it with their words, will it so in a report, or assign a pre-determined timeline.

I don’t remember exactly when I released the typical child that I must have held hostage in my mind’s eye during that time. I think a peace and appreciation for the son I have -- even an admiration for his effort and accomplishment -- overcame that standard. And it didn't feel like giving up at all -- because it isn't a surrender of hope -- just a different perspective.
Winnie
"Make it a powerful memory, the happiest you can remember."

LittleManzParents2
Posts: 78
Joined: Thu Nov 23, 2006 10:03 pm

Postby LittleManzParents2 » Sun Feb 11, 2007 5:49 pm

This is such a great topic. MCA, I've been hearing the words "lifelong disability" ringing in my head all month as well, and I've had a couple of good cries just this past week alone.

Everyone's posts were so insightful and honest.
In general, I tend to do as Laura does (or try) - living in, and enjoying, the moments , that is, and not looking too far ahead. Most days it works OK. Then there are those times, as Winnie mentioned (hi, Pooh), when I fear that relaxing and being in the moment might be robbing him of independence down the road and that I should be working and pushing harder :| It's a horrible line to have to walk, when I just want to love my son.
The hardest arithmetic to master is that which enables us to count our blessings. ~ E. Hoffer

gtto
Posts: 752
Joined: Wed May 17, 2006 9:26 am

Postby gtto » Sun Feb 11, 2007 9:35 pm

Gabesmom wrote:I know I'm rambling here, but I also want to mention the fact that just because a kid has reached the magic age of eighteen does not mean that learning has ended. We seem to have this notion in our heads that if our kids can't do X, Y, or Z by a certain deadline, they will never be able to.


I have to agree with that. And autistic people, I have noticed, tend to be very lifelong learners, including of things that you're "supposed" to learn much earlier or not at all.
"If you're watching it, you're part of it. If you're close enough to see it, you're in it."


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