Want to see me?? (967 hits)
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Submitted by <okiwilltellyou.at.yahoo.com> (View user info) at 2004-01-23 11:55:17 EST
I haven't had a very warm reception here for attempting to write outside of my realm. So this is true life, like it or leave it-- but I will write about it.
By the time my son Ryan was six months old, I knew in my heart that he was not "normal". Something was wrong here, but what the hell was it?? Every doctor I took him to, every experienced mom I asked advice from, all said the same thing--"Don't worry yourself so much..all kids develop at different rates".
By the time he was a year and a half, he still wasn't talking, smiling or walking--most things that other parents of children this age were experiencing and sharing with family and friends. Hell, I couldn't even share the COMPANY of family and friends without Ryan screaming and crying the whole time. God, he was so distant, so very hard to get through to!! I felt like somehow I was failing this poor child miserably as a mother. Maybe I should have worked with him more, maybe I should read to him more, maybe I should have.....done so many things different.
Why shouldn't I feel that way?? Besides, a couple of my own family members have said that it was because I made him a Momma's boy that made him not "like" them. I cannot even begin to count how many times his own grandmother has said that Ryan wouldn't hug her because it was my fault. I didn't take him out enough and visit with her so he could get to know her..."Ryan doesn't like me, because he doesn't know me". But I don't know of many parents that would enjoy taking their child out and about when from the time they left until the time they returned, all the child did was scream horrifically. On the first attempts that I did try to go places with him, I would have my family asking me what was the matter, what did he need, etc, etc. But almost always, my answer was the same. I just don't know. God help me if I needed to get something from the store and had to take him along. I heard everything from-"YOu should spank that little brat's ass!!" to "You know, you should pay more attention to your kid". Goddamned judgemental people have no clue and are the most cruel.
Well, by the time Ryan was almost two, I had enough. I was going to find SOMEBODY who would give me an answer to what was going on. After many more exhausting physicals, hearing tests, blood tests and etc. (too many different tests to even remember now), I was referred to a neurogical specialitst at Children's Hospital. It was weird, because he didn't seem to really do much. Although, I felt at least relieved that he worked around Ryan's screaming rather than try to get him to stop. He then took my husband into another room and asked him many questions that nobody had before. After about twenty minutes, they came back into the room where Ryan and I were waiting.
That is when he said it.
"Ryan is a severly autistic child. Autism is neurogical disorder that at this time, we have no idea how it is caused and in many cases, we don't know how to actually break through to the child who has it. There is information that I can give to you that will put you in contact with people that can help you, but it is still going to be much more of a difficult trial and error system than what you have ever dealt with before."
My husband and I were now sobbing as much as Ryan was. To this day, I still can't say if it was from sadness of what we found out, or from joy that we actually had someone tell us what it was that we were dealing with.
He was right though. Even though we had an answer to Ryan's disorder and some wonderful professionals to help us through, much of this past year and a half has been finding more about what doesn't help him rather than what does.
There have been a few breakthroughs....wonderful moments. At the age of three, Ryan called me mama for the first time--THAT was MY most rewarding. Because for the first time it made me feel like just that--a mother worthy of this wonderful child's recognition. I know Ryan's situation isn't about me, but autism affects the whole family system. In order for the parents to be able to effectively help their child, they have to deal with the self-pity, anger and confusion it causes them first. Because with a child wtih autism, they know no different, that is their world and they will experience the self-pity, anger and confusion only when we try to alter that world.
Our days are spent here at home trying to find the right key to unlock what it takes to get through to Ryan. Just about everything we do revolves around how it might help our son. Some can say I don't have much of a life, but it really doesn't matter. I live my life through and for him. It is very demanding, but I live it with acceptance now at least. We didn't ask for this, it is just the way it is.
We are very fortunate enough to have a couple of the most kind and patient professionals that come to our home that work together with us to do what we can to stimulate Ryan's growth. Without them, we would be lost.
I have no idea as to what to expect for my son's future or how far he will be able to come. All I know is that whatever happens, he is my son and I love him with all of my heart.
User Reviews
Submitted by okiwilltellyou (user info) at 2004-01-26 11:47:05 EST (#)
Ranking: 0
Jarret, you made me cry some wonderful tears!!! Your love and understanding of your brother is BEAUTIFUL. Well, from what I read Ryan doesn't seem to be as severe as your brother. The only reason I say this, is it really seems like he has been picking up on a lot of things since we had him "diagnosed" and getting help for him. He is most challenged in the areas of social aspects and speaking.
My husband has said that he believes people are "given" a child with autism, because they are the ones who would love them with everything they have. I now believe this for fact.
I have written down the email address of both you and lana..thank you so much, I will keep you in mind when I really need help with something. But also won't use it to bother you either.
God bless you and your family. Your mother especially has a place in my thoughts and prayers....if there is a God--lol. I'm gonna keep trying anyway.
Submitted by Gillespie (user info) at 2004-01-26 01:24:10 EST (#)
Ranking: 0
If you would like more information on Autism, or maybe talk to a woman who has spent her entire life in and out of hospitals with my brother, and myself, doing experimental therapy for autism and letting them test us through and through, I can get you in touch with my mother, and believe me, I know A LOT, about it. My Mother is a registered nurse, and knows autism better than any doctor I know. Lemme know, here is my email. jarretttai.at.hotmail.com
How severe is your son? My brother was one of the most severe cases doctors had seen, and right now, at 18 he can speak short sentences and follow most commands, ie.. "Take of your seatbelt and go in the house." He still goes to my room every morning and tries to wake me up... kinda breaks my heart, cause the kid can't see that I'm gone for a long time. Anyway... lemme know
-J
Submitted by Gillespie (user info) at 2004-01-26 01:17:51 EST (#)
Ranking: 2
Hi, and nice post.
When I grew up, my smallest brother was severely autistic as well. I know what it is like to take care of someone with this disease, and it can be challenging. Let me tell you now that if someone where to come up to me tomorrow and say, "I have a cure for autism and I can cure your brother." I would have to really think about whether or not to cure him. He's an extremely happy, fun loving kid (he's 18) who brings light into any room he steps in, and if he were to become "normal" he'd just be a different person, not to mention a very confused individual. My brother being autistic was one of the most profound changes to my life that I will perhaps, ever experience, but I wouldn't change it for the world. I don't believe in God so much, although I believe there is a higher power, and he is definetly a gift from that higher power. Take care, be strong, and enjoy your gift. I envy you for all the great times you have ahead of you. Autism to me is not a disease, but rather, a state of living. I think autistics are in tune to another part of the world that we can't see, and they in their own way, are normal as you and I. Good Luck, and God Bless
-Jarrett
Submitted by LaNa (user info) at 2004-01-26 00:51:26 EST (#)
Ranking: 2
Not a problem for the link! I hope it helps in some way...
I'd love to keep in touch and see how things are with Ryan or if you just need to vent. Feel free to e-mail me at lil_lana.at.yahoo.com.
~LaNa :)
Submitted by okiwilltellyou (user info) at 2004-01-24 00:39:42 EST (#)
Ranking: 0
Ryan is three and a half now Loki. He has done quite tremendous things for himself since we, and many wonderful others, have started working with him.
I found it very interesting that you weren't informed by the parents of this kid's situation beforehand. Makes me wonder why. I also found your handling of his information and adaptation of the class..well, wonderfully done. It is great that you didn't just give up on him like many others would out of frustration.
P.S. to LaNa...thank you for the link--IS ONE OF THE BEST I HAVE SEEN YET!!!
Submitted by Yes (user info) at 2004-01-23 14:38:21 EST (#)
Ranking: 2
No Comment
Submitted by loki (user info) at 2004-01-23 13:55:12 EST (#)
Ranking: 2
How old is he now? This is a really tough situation. One of "my" kids at karate is autistic, it's not severe but he has good days and bad days - you know how that is. He's 11 now, I've known him since he was 7 and his parents have gone though a wide variety of medications and therapy, it is all trial and error. I don't think the doctors really know what to do about it.
What I see is that he just doesn't seem to be able to pick up on what is happening around him. A lot of martial arts training involves watching what other people do and emulating it. This does not work for this kid. I used to get really frustrated with him until I found out that it is something beyond his control. I can have 30 kids all lined up doing the same thing. Beginners can see what the other kids are doing and figure out where to stand and what to do and then for no apparent reason, he just wanders off and starts making faces at himself in the mirror.
He doesn't like learning new things. We have these routine kind of things called katas. He knows three of them, there are ten that are required for black belt so we generally go through all of them at the end of class. He does the ones he knows and sits down. All the other kids try to stumble along with the class and pick them up as we go, but he gets really agitated at the mere suggestion that he stay on the floor and just try it.
There was a huge article about autism in Time once. I read it and got some of the older kids to read it to so we could figure out what was going on in this kid's head. The kids have done better with dealing with him than I probably would at that age. We call it "taking a break" when he leave us. As in, "seimpi Andy and I were working together and he is taking a break now."
I worry about him and what is going to happen when he grows up. He's a really bright kid when he's not on break, but sometimes you can just look at him and tell that he's just in his own little world.
Submitted by Heimdallsman (user info) at 2004-01-23 13:33:57 EST (#)
Ranking: 2
Strength, to you, your husband, and your son.
--HeimdallsMan
Submitted by DrunkMonk (user info) at 2004-01-23 13:28:54 EST (#)
Ranking: 2
I spent several years working with kids and adults with autism. I won't say "I know what you're going through," not being a parent, but I do understand.
Submitted by esso_merda (user info) at 2004-01-23 13:14:43 EST (#)
Ranking: 2
I can't even begin to imagine. This world needs more people with the strength and patience you seem to posses.
Submitted by Goldeneyes (user info) at 2004-01-23 13:13:06 EST (#)
Ranking: 2
We have good friends with an autistic child, but he doesn't seem to be as severly affected as your son. However, he's come a *long* way in recent years - due mainly to lots of therapy and hard work and love. Keep up the good work and never give up - it's a life-long committment, but things can get better over time.
Submitted by LaNa (user info) at 2004-01-23 13:00:36 EST (#)
Ranking: 2
Here is a link where you can search for local support groups. "Cure Autism Now" is a great foundation whose goal... well... it's pretty obvious by their title :)
I hope this can be of some help.
http://www.cureautismnow.org/kb/subcat/index.jsp?catId=3219&type=111001
~LaNa :)
Submitted by Mr-Boo (user info) at 2004-01-23 13:00:30 EST (#)
Ranking: 2
Wow, I applaud your patience and understanding. I would have never been able to deal what the things you are/have been dealing with. It is people like you, not me, not most of the other retards on this site, that make the world a better place to live.
Submitted by Slopster53 (user info) at 2004-01-23 12:59:05 EST (#)
Ranking: 2
This I can say for certain, with a caring family and nurturing autistic kids can grow up into self-sufficient autistic adults. Don't give up!
Submitted by Nicole3 (user info) at 2004-01-23 12:40:28 EST (#)
Ranking: 2
Good luck. Though we may not be able to offer any advice, we're always here if you need someone to vent to.
Submitted by Phinch (user info) at 2004-01-23 12:37:23 EST (#)
Ranking: 2
start here loren-
http://www.ubersite.com/m/23827
and here-
http://www.ubersite.com/m/23819
and here- oh. never mind.
Submitted by okiwilltellyou (user info) at 2004-01-23 12:37:04 EST (#)
Ranking: 0
Lana, thank you so much for your encouragement....I only dream of the day to hear Ryan speak more than in one word phrases. Perhaps that day will come as it did for Matt. God bless you and your family for their dedication to this young man.
Submitted by Loren1 (user info) at 2004-01-23 12:33:34 EST (#)
Ranking: 2
Very unfair. I'm sorry this is your family's situation, but I applaud your strength.
I'd like to hear more in the future regarding Ryan and *hopefully* his continued progress.
(Sorry if I sound like a bad Hallmark card, it's wasn't my intention.)
I need to go rip apart some teenagers now to make myself feel better.
Submitted by Anansie (user info) at 2004-01-23 12:32:29 EST (#)
Ranking: 2
No Comment
Submitted by okiwilltellyou (user info) at 2004-01-23 12:31:32 EST (#)
Ranking: 0
well vergedor, we don't have any local access to any actual support groups. But we have been on a few chat rooms and forums for parents with disabled children. Doesn't give any of us many answers, but at least we can vent our frustrations and share in our small triumphs.
Submitted by okiwilltellyou (user info) at 2004-01-23 12:26:56 EST (#)
Ranking: 0
No we don't live in California, but makes me want to check to see if they've done any studies on that.
Submitted by LaNa (user info) at 2004-01-23 12:21:43 EST (#)
Ranking: 2
this is just because you can't give +4...
Submitted by okiwilltellyou (user info) at 2004-01-23 12:21:38 EST (#)
Ranking: 0
Thanks Christpuncher we'll have to inform the experts on this new theory.
As for ridalin....I only wish the solution could be as easy as taking a pill.
Submitted by smokymtcsw (user info) at 2004-01-23 12:20:45 EST (#)
Ranking: 2
I have an older brother who was born with Spina Bifida and I know our whole family has learned and grown in a lot of ways we never would have if Paul had been born without his disability. I will pray for strength and patience as you continue to love your child!
Submitted by LaNa (user info) at 2004-01-23 12:19:37 EST (#)
Ranking: 2
I applaud you for your strength but I know what you mean about "thats just the way it is".
My younger cousin was diagnosed with Fragile X syndrome when he was 2. They trace it back to a defect into his chromosomes (hence the name) and the way he responds to various things are similar to someone who is severly autistic. There are many other complications that come with it on a physical level that I won't get into here... but from watching Matt grow up and my aunt and uncle raise him I can see how hard it is.
Matt is now 16 years old and is almost speaking in complete sentences. He tends to repeat himself often and stutter a bit.. but a lot of the noise issues that were a problem when he was younger don't bother him as much any more. He can now also handle going to the store with his mom for short periods of time. He still can't handle when our family sings happy birthday (we know that's just because we're all off key) and the sounds of loud trucks or trains still scare him.. but he's come a long way.
Thankfully, there are many people out there today to help you in this journey. Be sure to lean on them and remember that is what it is - a journey.
I wish you and your family all the best,
~LaNa :)
Submitted by vergedor (user info) at 2004-01-23 12:19:32 EST (#)
Ranking: 2
In Quebec, we now have a TV show hosted by the mother of an autist child. Parents of autist children share their pains and joys and help each other out while educating the public about this neurological disorder.
Do you have access to such a network of parents that face the challenges of taking care of an autist child?
Submitted by GodChicken (user info) at 2004-01-23 12:15:38 EST (#)
Ranking: 2
the "silicon valley" of california has the highest concentration of autism in the entire US.. You're not from there, are you?
Submitted by OrEoBandiT <BrownEye.at.hotmail.com> at 2004-01-23 12:11:54 EST (#)
Ranking: -2
Very nice, but you have to get at least ONE -2
Submitted by Natophelia (user info) at 2004-01-23 12:11:03 EST (#)
Ranking: 2
No Comment
Submitted by ChristPuncher (user info) at 2004-01-23 12:11:00 EST (#)
Ranking: 1
I blame your kids autism on the Chicago Bears poor performance this season.
But please don't sue the Bears, they need the money for new talent
GO RIDALIN WOO!!
Submitted by okiwilltellyou (user info) at 2004-01-23 12:05:56 EST (#)
Ranking: 0
No Tom, this is not fiction. And thank you for your kind words.
Submitted by Tom (user info) at 2004-01-23 12:00:29 EST (#)
Ranking: 2
Sounds to me like you're a wonderful parent. Er, this isn't fiction, is it? I've been fooled before.
Submitted by WillZone (user info) at 2004-01-23 11:59:31 EST (#)
Ranking: 2
serious. good luck.
Submitted by Phinch (user info) at 2004-01-23 11:59:01 EST (#)
Ranking: 2
also, its VERY hard to get a warm welcome on uber.
Submitted by Phinch (user info) at 2004-01-23 11:58:33 EST (#)
Ranking: 2
i bid you strength.