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So autism lasts forever.....

2K views 36 replies 26 participants last post by  fullofgrace 
#1 ·
I really thought I was okay with my ds' dx of autism spectrum. I thought I was doing FINE. We could just treat the yeast, eat better, sleep more, add some suppliments, whatever.... Life would go on. But lately it has been hard. I look at where we have come from and really, our progress has been remarkable. He is so much healthier, happier, and just at peace with himself. Our life is easier. But it is still hard. There are still so many challenges.

I guess he always has been different. After a while we just moved into crisis management mode. But now he is 5 and I really see how we have to change our lives permanently. Many of the changes have been for the better, we eat healthier and no tv is the best thing we have ever done, but letting go of some of my dreams of what I wanted to be our family life is not as easy.

I always wanted to homeschool. Until last week that was still my plan. I know there are lots of families who DO homeschool their SN kids, but for him I see now that he needs to be around his peers to learn from them. Letting go of that dream has been harder than I thought. I procrastinated for months, but last week I enrolled him for half days at the Montessori kindergarden. Its not just homeschooling, its everything. We can't just travel. The dietary concerns alone are mind boggling. Same with family dinners. I haven't been able to attend so many family weddings, holidays, or other gatherings in 5 years. Its just a lot of the little things I thought we would be able to do as a family are different now.

I guess I naively thought we would be past this thing by now. Sounds silly, but I never really thought this far ahead when he was dx'd over a year ago (we knew he was ASD for a long time before that). We tend to think of him as quirky, and unique. That really has worked well as a toddler, or a preschooler. Now as he gets older I can see how hard it is becoming for him as the expectations of his behavior change. What is quirky and cute in a 3 year old just doesn't work in a 6 or 7 year old.

He feels it too. He is becoming so anxious and out of sorts lately. We spent the day with my parents and my nephew yesterday. They live out of town and we made it a day trip. I had to cancel all my plans for today because he was just too stressed out and needed the "downtime". The same thing happens all the time, I generally plan a quiet day after a busy one for this reason. My nephew is just here visiting though, so I wanted to see him while I could and tried to make an exception to my day off rule.

After getting off the phone to cancel our plans for the day I broke down. Not because it was something out of the ordinary, but just because it just hit me how different we have to live sometimes. It's silly as things could be so much worse (they certainly HAVE been worse), but I guess I am just starting to think forward now instead of just trying to get through it all minute-by-minute and day-by-day.

What kind of childhood will he really have if he just can't make friends? Will he be a sad and lonely teen? Will he be able to find friends who accept him as he is? What about finding someone who loves him and who he loves?

I know many high functioning people do very well for themselves, I am just now starting to see the challenges that lay ahead for him. Autism just doesn't go away.

Thanks to anyone who reads this whole long post
I feel like I am just starting this whole crazy grieving process. I love my boy just the way he is, I just hurt for how hard things will be for him. I feel so much pressure to make all the right choices, because for him the WRONG decision can't be undone. It will be imprinted on him forever. It can be a terrifying position to be in some days and the day to day stress of it all is just overwhelming me lately.

Thanks for letting me ramble
 
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#3 ·
It's scary when you think about it, I know. I worry about ds when he gets older (we're only in the infancy of our autism journey), worry about him making friends, him being happy.

There's a book I keep meaning to get, called "Making Peace With Autism." It's supposed to be really good.

As parents, we of course throw ourselves into the "crisis mode" as you stated and work on getting treatments and therapies and read about all those. But once the dust settles and we're into a rhythm with the therapies and treatments and all that, the autism is still there, and that can be hard to deal with.

Reading Temple Grandin's book "Thinking In Pictures" made me feel better about my son's future.

I look at it this way...my ultimate goal for him is to be happy, no matter what he endeavors in life, no matter how "different" he may be. Keeping that in mind as my goal is a lot easier than a goal of him to be "recovered" or "normal."
 
#4 ·


...one day at a time, mama. smile.

and p.s.-I tend to think that w/1 in every 6 kids of this generation having some sort of behav disorder, that all the ticks, stutters, stims, and angry bouts and allergic reactions will have a certain high level of acceptance amongst same aged peers, as they continue to get older. It'll just seem normal to them b/c they will have seen it so much in so many kids for all of their lives....
 
#5 ·
Free range mama- I know exactly what you're saying. I figured therapy and working would 'fix' the problem and we'd be fine. I realized that autism never goes away when Jake ran out the front window (pushed out the screen and crawled through a huge bush we have) and was caught by 2 women about 50 ft before reaching the busy street, all before I even knew he was gone for sure. I never even posted that story b/c I was worried about the judgement that so often happens here (well, not here in s/n, but the board in general).

It doesn't go away. It ebbs and flows, but it doesn't get better.

I've said it before and I'll say it again "autism SUCKS".

Though, I love my ds and wouldn't want to change him, I'm just sad for the challenges he'll have. Of course, like dh says, ds1 is a happy kid, so we just need to be happy for him.
 
#6 ·
I understand what you're feeling. The grieving process starts all over again each time I face a big realization. In some ways, the early years are hardest -- the sleep issues, the food issues, the overload issues, etc. But in other ways, the older years are more difficult. My oldest is 7 now. Once again, I find myself faced with understanding what autism really means for his life. He's a great, happy kid, but he's a kid who doesn't really "connect" with other kids. And he's a kid you can't have a real deep conversation with (which is much better than the days when he was non-verbal, but still it is an issue when you listen to him interacting with his peers). Gone is the hope that he will "grow out of" certain behaviors. In some ways, I miss the days of thinking, "It could be autism, but it could also just be 3- or 4-, or 5-year old stuff." When he was a 3-year old who couldn't sit through church, no one thought much of it (except for the bad few you can't escape). Now that he is a 7-year old who can't sit through church, we get dirty looks even from those who pride themselves on their tolerance and *know* he has autism. I thought the adjustment period ended way back when, but it turns out the adjustment period sneaks up on you over and over again. In the early days, when nothing was guaranteed, we had a party for every milestone that parents of "typical" kids take for granted. There hasn't been anything to celebrate for awhile now. (I think I'm painting a bleak picture of our lives here. Our life isn't bleak, but it isn't what I pictured, either, and that takes some time to accept anew). Now I'm looking forward a few years and hearing about the many regressions of puberty. I'm wondering if that will be harder or easier since I'm at least expecting it.

Ah, well. That's what support groups are for, right?
 
#7 ·
Thanks for all the replies so far. I guess I just thought I was over all this. I feel like I am finally dealing with all the stress of the past 5 years. He cried for up to 14 hours a day for the first 4 months of his life, then (after I discovered he was allergic to corn and was reacting to it through breastmilk) he would only cry for 3 hours at a time. Once he grew out of that it we would just have good days and very VERY bad days. We cancelled so many plans with friends that everyone just stopped calling.

He also never slept. Maybe he would get 5 hours in a 24 hour period. I was getting 3 hours (interupted because he woke several times to nurse). That went on for 3 years. Then it was anxiety. And he stopped eating. That is when we sought out a dx. He needed OT for texture aversions to try and get food into him. His health was failing fast.

That started the journey of therapists, diet, appointments, ugh. Now life is calming down. It has been 5 years. I am worn out.

Then there is the letting go part. We just can't bring more children into our family. I wanted 4, maybe even 5. We have 3.

I wanted to homeschool, but I don't think that will happen.

I wanted to travel, we just can't be gone for more than a day or 2.

And of course I feel guilty for even thinking this way. I should just be loving and accepting. Its not like I resent all that is different, I just am finally starting to see it.

Thanks for the support
 
#8 ·
Just wanted to send a hug - and also say ramble on!
It is painful saying goodbye to some of our hopes and it is tough being loving and accepting all the time! I know the frustration of the future not necessarily being what you expect. Please don't ever feel guilty cause these feelings are real. Sometime I think we moms of special needs kids can't b***h and complain about stuff. That we have to be martyrs all the time - well i for one need to get it out sometimes before i can move on. Hang in there.
 
#10 ·
Oh man, we should definitely form a support group, I am right there with ya. AS I contemplate putting my son in Kindy in one month (school starts Aug 1st here) I just go around and around with the battle between guilt for not living up to my homeschooling ideals and the desire to send him where maybe he can get some help. I dunno, its so tough, I even tried to do a pro-con list and still cant reconcile what the best situation would be for him, me and DD. (DH of course will just go along for the ride lol).

And I can relate to the issues of him being 5. At a pool party this weekend, I was so proud that he didnt attack anyone, he was able to play in the shallow end without me in the pool, he communictaed with people. Such milestones! But then I had to be sad that he was just dancing around the pool singing nursery rhyme, alphabet and month songs to himself. Other kids just think that is weird. Especially at him age. Poor guy!

We have travelled a lot and will be taking a family vacation in Sept and I have no idea how it will go. Last sept we rented a house in Fl with another couple (no kids) and he did awesome. But then my friend came to visit us ad it just messed with his routine enough to be hell. So we never know how it will go.

Lots of hugs and support coming your way!
 
#11 ·


I can so relate to the feeling exhausted part, too. Ds's infancy was just hell on earth for us. There were good parts, sure, but most of it is clouded by all the crying, tantruming, reflux, and sleep exhaustion. Travel? HA! We have to go out of town to visit relatives, so ds travels okay. But "vacations" proper don't happen. Once a year we go to a beach house with the family, and that's our vacation. Safe. Predictable. Able to incorporate routines.

I think about the part when he'll be older and not an adorable toddler any more, and when his behaviors will start to be a "problem." Sigh. It just breaks my heart.

The one bright spot is that our counselors at TEACCH have reassured us time and time and time again, he will get better. It will get better. We have gotten him into treatment early. It will get better. That is my mantra. LOL. Those weeks when you fantasize about living on valium and tequilla make you wonder if those therapists are really telling the truth or just blowing sunshine up your orafice because they feel sorry for you, LOL.


Shellbean, you wouldn't have been flamed in this forum for such a story. I'm sorry you were afraid of being judged, but I do understand. There are people here at MDC who just hold everyone to this impossible ideal standard they have in their heads and make NO concessions and have NO concept of how much different their life would be if they had a SN child. It's maddening.

Bensmom and others, I want to stress again that there is a great yahoo autism support group that I participate in that is linked in the "helpful websites" thread that's stickied up top. No flaming or judgement is allowed in that group, and the people are very supportive and totally understand where you're coming from on the days when you want to pack your suitcase and flee for tahiti.
 
#12 ·
Ok, reading this thread has me in tears. It's so freakin' hard to let go of the 'dream'. To think that my little guy has to struggle with this his whole life is so overwhelming.
He's going through a very tough time right now. I don't know what triggered it but it's been awful for the both of us.
What is hard, for me, is that I'm single. I feel as though I'm facing this alone. My family doesn't visit. I don't have any close friends. People don't want to have playdates with us because ds isn't 'normal' like their child.
Sometimes I feel as though I'm being punished for something.

I love my dear boy. I really do. It's just so hard to deal with these feelings.

I need to go and really have a good cry now.
 
#13 ·
My dd doesn't have autism, but she does have her own little laundry list of special needs. I hear what you are saying about realizing how much different your life really is than what you thought and hoped it might be. I love dd with all my heart and wouldn't trade her for the world. Yet there are so very, very few people who understand the impact that her needs have on our everyday life. Just going out is a major undertaking, and more often than not, just not worth the effort. As dd heads off to kindergarten this year, I am really feeling the "different-ness" of our life and beginning to face my fears for her future. Preschool kids have been sweet and gentle with her, but now that she's in the big elementary school, will kids tease or exclude her? Will the embarrass her or scare her? I just want her to connect with people, especially kids, and it's so hard for her.
:
 
#14 ·
((HUGS))

With each new age and stage you have to mourn the loss of "normal" all over again. It's hard.
 
#15 ·
I got this essay by Emily Perl Kingsley from the book "The Autism Sourcebook" by Karen Siff Exhorn it is a wonderful book and this story summed up my feelings in a nutshell. I still have tough days but it is getting better and I'm learning how to weather each victory and each set back that is put before me. I've learned not to lean on my own strength because I'll never have enough. I've only been in the fight for 4 years but ever step is interesting to say the least. I think we should form a support group because just like all of you I feel at times like giving in (esp. on the real bad meltdown days), a curl into a ball and cry and I fight every day to keep depression at bay and keep a positive attitude and to see the good in all that my children do. So yes we do need a way to support one another and to be able to talk about our SN children without the fear of being judged. Not everyone is blessed with open minded friends and family to guide them. I hope you enjoy the essay and get the book if you haven't already.
Charmaine
Mom of two
:
: kids a
handsome boy and beautiful

"BE MISERABLE. OR MOTIVATE YOURSELF. WHATEVER HAS TO BE DONE IT'S ALWAYS YOUR CHOICE."
WAYNE DYER

Welcome to Holland
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. Yhou may learn some handy phrases in Italian. It's all very exciting

After months of eager anticipation, the day finally arrives. you pack your bags and off you go. Several hours later, the plane land. The stewardess come in and says, "Welcome to Holland."

"Holland?!?"you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland, and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence,famine, and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been ther for a while and you catch your breath, you look around...and you begin to notice that Hlland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of y our life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very , very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
 
#18 ·
Quote:

Originally Posted by ChristaN
That Welcome to Holland essay always reminds me of this one written by a mom of a child with autism: http://groups.msn.com/TheAutismHomePage/schmolland.msnw
I agree, but that essay and the other one (Welcome to Beirut?) always makes my heart hurt on two counts. 1) I've felt that way and even written it down -- but then I threw it away. I know that my son will one day be able to read these things. If he were to one day come across my negative ramblings, I think it would jeopardize much more than I'm willing to risk -- for him and me. Whenever I read either essay, I send up a brief prayer for the child who may one day read his mother's writing. 2) I know something about writing and publishing, so I know that a lot of rewriting and editing goes on. Whenever I have written something like that, it was a cleansing experience to get rid of the negative feelings. The thought that the negative feelings were sustained long enough to go through the editing process (either deliberately or not -- sometimes we are trapped by our feelings) causes me to send up a brief prayer for the writer.

So while I agree with the accuracy of the negative essays, I much prefer the positive focus of the Holland essay -- it's hard, but there is beauty if you can remember to look for it.
 
#21 ·
I just want to say thanks to Free Range for the OP. It helps me to read this stuff coming from other moms. I wish we were all so overwhelmed - that we could have time to get together by ourselves once a week and just hang.

If anyone out there is still on the therpay hunt I sincerely recommend that you get An Impossible Cure by Dr. Amy Lansky (she was a featured contributor in the mothering autism issue that came out a couple times back)
www.impossiblecure.com

The book is fascinating - we were given it by the homeopath who treated her son for autism successfully- who is now cured. My child started her remedy in May - while I can't know if it's a cure I can tell you it's affecting her markedly - when the dust settles we'll see. She of course is on every other protocol under the moon simulataneously - GFCF, glutathione, carnitine, B12 shots, digestive enzymes, grapefruit seed extract, IVIG, the gammut. 40 hours of behavior intervention, OT ,speech the whole thing

I just feel like this is an open doorway that warrants investigation by anyone trying for recovery.

thanks again for the OP.
 
#22 ·
WOW, OP's post sounds like my life too.. DS was doing so amazing for a while but the older he gets, the worse things seem to turn and I realize his social issues are going to be a problem for him for a long time... and it hurts.

My parents (sweet as they are) try to relay all the good things about being 'high functioning autistic' and I know they are trying to help. But sometimes I just want to vent about all the bad things! And why did this happen to MY child?

He doesn't yet quite understand what's going on when kids don't want to play with him... and the day he does it's going to break my heart. I feel bad saying this, but sometimes I want to whack a little kid in the head! Occasionally their uncaring parents too...
 
#23 ·
FreeRangeMama - I could have written your post.
About having to change plans, the pressure to do the right things etc etc.
My boy is just turning 3 but we've known for about a year and I think it is *just* starting to sink in now.

Quote:

Originally Posted by ernestholmes
The book is fascinating - we were given it by the homeopath who treated her son for autism successfully- who is now cured.
My son is being treated by John too! My dh thinks he saw changes pretty quickly but I think we've plateaued a bit.
 
#24 ·
FreeRangeMama, I'm with you. I sometimes look back on the path I thought my family was on about 9 1/2 years ago, and marvel at how far off that path we've gotten. Some things are really, really good about life right now, and other things simply feel so hard, and I think they'll probably continue to be hard. I expect I'll get better at accepting and dealing with the challenge, though.

Living with autism is such a different reality. My friends with neurotypical kids don't really "get it" at all. Why can't I bring Gabriel to the coffee house for our meeting next week? Why does he have to have all of that therapy, for so many hours a day? What do you mean, you aren't bringing him to the family gathering at Christmas? So, you homeschool all of your other kids, but not Gabriel? But he seems like such a sweeet, easy-going kid; he's not that much trouble, is he?

I think I've gotten past feeling slightly embarrased about my family when people don't understand. There's a heck of a lot to understand about us, and most people will never have a clue! It's just not always the life I had planned, and it's hard sometimes to let that other life go.

Hugs to us all in our journey,

Joni
: and kids (incl. Michaela, 9 1/2, spinal cord funkiness and spinner in a purple wheelchair; and Gabriel, 7, Down syndrome and autism)
 
#25 ·
Wow, thank you everyone for your support. I can't even tell you how wonderful it feels to know I am not alone in this. I am feeling better about things (mostly). Ds also has recurring bouts of vomitting that we think are allergy related. He has been so good for months now, but was really sick this week. And we thought we were being SO careful. I need to get things under control again and be more vigilant with the diet and suppliments.

It is hard too because my dh is a student, and he should be working too (because we need the money) but he just can't be gone that many hours. Ds needs us both to be with him and involved all the time. I need him here because I can't be the only parent to ds AND my other 2 kids.

Wwe got our gas shut off yesterday (no more hot water for us
thank goodness it is summer) and can't even think about turning it on again in the forseeable future. Yet what choice do we have. Dh NEEDS to get a degree so he can earn enough money to adequately provide for the future. Who knows how our ds will function on his own as an adult? We need to think ahead and the jobs he was qualified for before he started university wouldn't pay enough.

Yet no one understands. They think it is a selfish choice for me to be at home and dh to be in school when one of us should be providing a paycheck. My family is more understanding, yet most people in our lives think he is a typical kid (though just a little sensitive). They don't see the challenges he faces, or that we face as a family. That is BECAUSE of all the hard work we have put in to this adventure. I spend countless hours on our diet, we both spend every spare moment working intensively to help ds in difficult situations or with anxiety or whatever.

We are spread thin and we really need a therapist, yet we haven't found a program that really fits our needs. School in the fall will hopefully be a good fit (it is a Montessori school), but just getting that off to a good start will take so much work, patience, practice, and adjustment. We are already starting to deal with the anxiety (even though he is excited).

If only the people I am surrounded with in real life were as supportive as you all
 
#26 ·
I work with special needs pre-schoolers. We have 10 in our class with 3 adults. I just wanted to let you know that there are some loving, caring mommies out there in the school world who understand AP parenting, loving and teaching.


My sister just emailed me today,they have told her my nephew age 6 is Autistic.
 
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