When Charles was diagnosed with autism i of course went through the stages of grieving, and finally felt like i was able to handle this--i felt i had come to grips with it and we were taking this bull by the horns and getting all the necessary help he needed, etc.

But the past few days i have been in such a slump. My other son had eye surgery this week, which also stressed me out, but it just seems like i will never really 'accept' that my child has this burden of disability on his little life. i'm having a hard time getting past the 'why me, why him' thoughts. Some days i'm fine, others are just plain hard.

Sorry to whine, but its here that I find people that really DO understand. I meet other triplet moms and they just don't understand what its like to have triplets--and between two of them we are with a therapist of some sort for 30+ hours a week! And then of course the other moms of kids with autism don't understand what its like to have two other kids the same exact age! Other moms that i meet with one or two kids tell me how busy i must be, and how hard it must be to have three two year olds. I wish i could tell them that having 'just 3 two year olds' sounds like a breeze! but throw autism, asthma, vision problems, etc into the mix, it makes for quite the ride.

Anyway, for the most part i do fine, and i'm really good at faking when people ask how i'm doing but i just wondered for those of you who are veterans at handling a child's disabilities, does the pain ever go away? how do you continue to cope?
Thanks for letting me vent.

Meg

Hi Meg
((((()))))
You are not whining !!
"I wish i could tell them that having 'just 3 two year olds' sounds like a breeze! but throw autism, asthma, vision problems, etc into the mix, it makes for quite the ride."

I have often said something similar to that usually 'the triplets part is not the challenging part for me, it is all of the medical problems that are really taxing on me.'

I don't see anything wrong with that, it lets people know you have been through a lot and gives you 'credit for it' KWIM ??

I can relate very much to how you are feeling, although we aren't dealing with autism in the mix. I do have one good friend who has a son with major medical challenges and many therapies/surgeries/test etc and another DD who has severe asthma. She is probably the person who I can relate to the most. It is a huge challenge to deal with all of the therapies and medical issues AND triplets, and no matter how much people want to understand they just can't. I have had people tell me things like 'I know how hard it is, I hate seeing my baby cry when he gets his shots' and I am polite to them but just want to scream and say something like- you should thank God that you really have NO concept of what it is like !!!

As far as dealing with the pain of you children's problems, mine is cyclical. It sounds like that is how it is with you too. Sometimes little things trigger the pain and stress more than the big things for me. Talking about donor breastmilk really got to me the other day, because it (the lack of it) is what caused Braden's medical problems. I am usually fine when I am caught up in the middle of things ie- I am really busy with the day to day part of therapies, tests, appts etc.. When things 'slow down' is when I usually have the most trouble does that make sense ?? Braden has had a few pain free weeks and they have been wonderful, but today he was having troubles again and his latest blood test show the same problems again...

When things get bad I really try to focus on what a blessing it is (although one I would never wish in the form of pain for my child) to have a child with so many challenges, because it really can make you realize just how amazing all the 'little things' in our lives are. I don't know if that at all expresses what I am trying to say, but hope that it makes some sense ??

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

As usual Lorraine really hit the nail on the head. My grief also seems to be cyclical. Somedays the fact that I have 2 with autism doesn't faze me and other days it's like I'm just hearing the diagnosis for the first time all over again and I can't handle it. A few weeks ago, I was talking to an aquaintence about it (her grandson is currently being evaluated for autism) and she turned and said "you seem so calm about it (meaning my situation)." I wanted to say, " well you just missed my 5 hours of on and off crying today so I must be cried out for the day," but I didn't. Does the grief ever finally fade away? I don't know. Right now, I just try to be as positive as possible, and if it's just not working that day, then I try to focus on the routine so I don't have to think about it so much. ((HUGS))
-Karen

Meg, I am in no way a "veteran" to all of this...we've only had a diagnosis for the past 9 months. And I share many of the same things you are feeling! I was having an especially tough time right around the beginning of the school year. Even though I knew I was doing the right thing, it broke my heart wide open to stand in the driveway with my daughter, watching "her boys" get on the bus and ride to school without her. We both cried our eyes out. And nobody seemed to understand why I was crying. I wasn't crying because my babies were going to school....I was mourning the fact that I'd always envisioned my three children going off to school together. My DH knew exactly what to say to me that day. He said "Honey, we are doing this so that someday they will be together" and he was so right. My friends think that I have this pampered life of therapists coming in, entertaining my boys (their ABA therapy). I've been ridiculed by one friend for having my typically developing child in 5 days of preschool, because I really think she is better being around typical kids rather than being home while therapists come in and out all day. I would take my friends' issues of misbehaving of their children anyday over the unknown of my childrens' lives.

The hardest thing for me is that I expressed in an email to two of my closest friends that I was having a particularly tough time a few weeks ago, that at times, I really didn't even want to be a parent anymore. Neither said a word to me. That hurts the most. They never ask how the boys are doing, how I am doing, how our family is doing. I was telling another special needs mom this and she said maybe they don't want to know the truth. As for the pain fading, I know it goes in cycles, where I get really p***** off at the world, like why did we ALWAYS have to take the hard route. My mom called a few weeks ago when I was really in a slump, and I just cried and cried to her, saying how I never know if my children will grow up and leave us, and if they do, if they will ever be able to live on their own. My mom is older and just doesn't get it either, but she's there to tell me of course they will.

Like the previous ladies said, I go through rollercoasters of highs and lows. I am coming out of a low and feeling very good about things. The best medicine for me is to talk to our ABA consultant (who also has a son with autism). She tells me the great things her son is doing, and I instantly feel optimism. Meg, you can always privately email me.

One thing that did happen to me when I was in that slump is I got a flyer for a class called Parenting with a Purpose. Even though I don't have the time for an 8 week class, I signed up for it. I said I really needed that pep talk. I've only had one class so far, but it does help to talk about all of this on a general level, not a special needs level.

Krista
Michael, Katherine & Daniel
7/25/01

Krista
b/g/b
July 2001

Lorraine and Karen,
thank you so much for your words of support and wisdom. That is such a great way to put it: "cyclical". thats exactly how i feel my emotions are about all of this. Lorraine, i really laughed out loud about the shots thing. I have heard that a few times, how that is the biggest 'health' challenge that people's kiddos face. thank goodness for them, but that same comment from a few people has made my skin crawl.
I also feel like when we are thick in the routine of therapy, appts, etc, things go fine, but i think its when i come down off of that and 'relax' for two seconds that reality hits me and i get down about things.
Anyway, i know you guys can relate which is why i felt safe dumping on this forum today! THANK YOU!

Karen, I spoke with Marie the other day and she said they would get Charles in to see Dr. R. in the next two weeks. Good thing, because ALTCS called the other day and our evaluator said it looked grim for charles to qualify this time around. GRRRR! i may call you this week about that, i'm so frustrated. But, our hab worker is 1/2 way done with habstart at SARRC, and started on friday. i think she'll be good for charles.

Meg

That is WONDERFUL news about the Dr. appt! I didn't have a chance to tell you that I bumped into Marie about 2 weeks ago and said that you had called for an appt. She now does part time work for Dr. R and said that the other lady that helps with the scheduling must have written down your info because she didn't remember you calling (Marie). I explained again about the ALTCS situation and she said that she always puts the "little guys" first in line for any cancellation slots and that she would make sure your son would get called in ASAP. Since I new that DS could be denied, I had an extra set of applications sent to me ahead of time from ALTCS (you can call the lady that did the financial phone interview or the lady that came out and did the medical interview and request more forms). Then when the denial came the first time, I already had the 2nd app. filled out and I dropped it off that same day with the copy of the diagnosis from Dr. R. The people at ALTCS gave me a tip that it is much faster to reapply than it is to go thru an appeal. Good luck with all of this! I remember too well how stressful it is to qualify for fed. funding!}>
-Karen

karen,
THANK YOU!! I got a call from Marie today and they are getting us in on the 19th. How long did your appt. last? i'm just trying to line up babysitting for the other two.
thanks again for your suggestions and encouragement. charles had a MUCH better day today with our hab worker, he actually was happy for part of it

thanks again,

Meg

Hey Meg,
Our appt. lasted between 1-1/2 hours but I had to have someone cover for 2-1/2 hours babysitting because it was such a long drive for me. I'm so glad that your're getting in this month! Make sure you tell Dr. R about possibly being denied for ALTCS. She is very adament about children on the spectrum getting the therapy that they need and will state in her report why she thinks Charles should qualify for ALTCS. Good to hear that your little guy is doing better with his hab worker. My two had a rough 1st month adjusting to doing things that were so hard for them all day. Hope things keep getting better!
-Karen

I am going through a down part of the cycle right now, the perpetual state of uncertainty is really getting to me right now and Braden is having more problems after a few good weeks. I need to take my own advice I guess and look for the positives. I saw on the Today show this morning an 'energy coach' who said to do this 1-5 times a day (I could use @ 30 x a day but...)
take a deep breath in for 3 seconds then breathe out for 3 seconds and think of positive thoughts while you are breathing. He said it is impossible to physiologically feel stressed while you are doing this. maybe I should go try it right now !

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

Meg,
I couldn't agree more with the other posters. It comes and goes for me too. I feel as if, it is part of the grieving process. I feel so guilty when I think of Katie and grieving process as connected because I do love her so much, but back in the days before kids, I never would have dreamed that this was going to be our lives.
When going through the "down" times, I try to surround myself with positive people who somewhat understand. Katie's CD teacher is outstanding and she has this sixth-sense, she knows when things are getting rough. She then becomes a "cheerleader" for us and things start to look up once again. It seems that the "down" times happen when we are most vulnerable, too. Like now, our family is going through some imaginable pain that is probably not going to be rectified soon. It is beyond our control and it is something that will affect our lives forever. Hopefully, some day I can share this with my TC family, but right now it is too risky (you will all understand when I do share).
Anyway, this is turning into a vent for me and I did not intend it to go that way. Meg, what you are feeling is normal for parents of children with disabilities. Know that you are not alone and do not feel guilty for having these feelings (easier said than done). Believe it or not, they are actually therapeutic. Do not ever deny your emotions.
Take care,

Gina
SAHM to Spunky 7/10/94
Mojo 6/29/97
RinRin 6/29/97
Kakiecakes 6/29/97(DS)
"I looked on child rearing not only as a work of love and duty but as a profession that was fully as interesting and challenging as any honorable profession in the world and one that demanded the best that I could bring to it." Rose Kennedy

trpsn1
SAHM to Spunky
Mojo
RinRin
Bugaboo
"I looked on child rearing not only as a work of love and duty but as a profession that was fully as interesting and challenging as any honorable profession in the world and one t

Meg..
All three of my boys have special needs and you just do it every day. I am glad I know what is going with my kids, it makes life easier to handle and alo easier to get what they need. Does it make me happy all the time NO it doesn't. I have two sons effected by autism and one that has 40% hear loss and has to wear hearing aids. Life is not all fair but it does give you what you can handle. You may not think so but it does! I love my kids. I know you love your kids... so find small ways to relax in the day and find those special things that makes your family and schedule work for you. Your not alone!

Danielle
Easton, Blake & Hunter
1-24-99

meg,
i just wanted to post and say "thank you" to you and all of the ladies that responded too. just reading that i am not the only one with these crazy up and down emotions about ds makes me feel so much better. i find i go through a major "low" when i start to think about the future. as long as i can keep myself in the here and now and deal only with what i can control NOW, i do ok. as soon as i allow my mind to wander....the tears come back.
im thankful for this forum...

julia, gbb, 3.5 years and g, 18 years

julia, gbb, 19 months and g, 16 years

You all know, I was ordering one of those farm house signs for my house...saw this stand at a craft fair and just "had to have one" but was struggling on what to have put on it. I just emailed her tonight with what I want and requested "Believe in Miracles". I told her that getting pregnant was a miracle, my tiny preemies were miracles, and now I need something in my house to remind me to always keep the faith. So do you think I'll cry every time I look at it, or look at it in 20 years and just shake my head in agreement? I think the latter. (Today is a GOOD DAY!)

Krista
Michael, Katherine & Daniel
7/25/01

Krista
b/g/b
July 2001

I understand exactly what you are talking about - although my children are dealing with different health issues! It is so HARD to deal with all of the appts. and worry. I have definitely had my down days, but I try to make an effort to focus on the positive and not let all the negative get me down! Instead of feeling "why me" I try to see how my children have changed my life for the better and taught me to not take anything for granted. Although, I still have days when I feel like I'm losing it - I try hard to see only the "good" in my situation! Plus, faith and family always help, too. Good luck to you and I hope everything gets easier! Sending you lots of prayers for your family! Here's a favorite quote that helps me get by:

"Our lives are not determined by what happens to us, but how we react to what happens; not by what life brings to us, but by the attitude we bring to life.

A positive attitude causes a chain reaction of positive thoughts, events and outcomes. It is a catalyst... a spark that creates extraordinary results.

~Heather~
Mom to Kyle, (4/98) &
Brandon, Jacob & Devin, (5/00)
32 weeks
www.jacobduckworth.com

When people ask me how I do it (referring of course to the triplets) I always think to myself, gee, having triplets is the easy part. My 18 yr old son Christian has Asperger's Syndrome (finally diagnosed at age 16), which is somewhat like Autism or in the same "family". I fought for many years to get him properly diagnosed, the word autism was thrown around often but always rejected because he didn't fit the diagnosis exactly. At age 3 some clueless shrink even told me he was mentally retarded. I always thought that things would be better when we'd find out what was really "wrong" with him. He also has ADD, mild OCD and mild Tourette's.... oh and a 136 IQ which is almost in the genious range. The school system has tried to get him committed to the Emotionally Disturbed program at least three times and it has been a huge fight for me to keep him out of the program, probably a good program but not the right one for him. Having a proper diagnosis is a big step in the right direction for you and your family so this is a positive that you can count when you need something positive.

Lorraine hit the nail on the head when she said it is cyclical, it always has been for me. It took me years to finally "get" it, I used to think each time when I somehow solved a particular problem or got him the right help or whatever it would be smooth sailing from that point on, and then when we would crash and burn again I would be so incredibly depressed and surprised even. When I finally learned to appreciate the good times, but to also accept that there would be bad times then it was somehow easier, the bottom wasn't so far down.

I still haven't completely accepted that Christian is "different" and constantly have to adjust my perception, but he keeps surprising me, he is doing things that I never thought possible and has come so much farther than I had dared hope for. I mourn the fact that his disabilites won't allow him to really utilize his high IQ, I can't help but feel it is such a waste. I know that sounds mean and I don't think I've ever shared that thought with anyone else other than my husband because it makes me sound like a witch. I always wonder what I did wrong or what I could have done better. Christian is still in highschool (special ed) although he will never get a high school diploma, thru school he is also in the workability program and has an after school job with Taco Bell, he also just got his driver license (long and difficult chapter in our lives). Maybe he will even move out some day and actually have a real job and take care of himself, something I had never dared to hope for. In second grade he used to spend 90% of his school day rolling around under the desks in the special ed dept and squeak, he wanted to be a baby dinosaur, boy, he's come a long way since then.

One of my biggest worries has always been that more of my kids would get diagnosed with Autism related issues and one of our triplets worried both DH and I alot but then at age 18 months he suddenly blossomed and we haven't worried since.

Sorry this turned into an "all about me" post, that was not my intention, I simply wanted to tell you I know where you're coming from and I sympathize. Some days it's moment by moment and other days or weeks the time flies by. Break life into manageable bites in your mind, when things are bad learn not to dwell on the future and find a parent support group for children with autism. I don't post often on the special need forum but ended up sharing tonight. Don't ever give up hope, you might be surprised to see just how far your kids can go.

HUGS,

AnneLena - SAHM
-.,.-^-.,.-^-.,.-^-.,.-^-.,.-^-.,.-^-.,.-^-.,.-^-.,.-^-.,.-^-.,-
Looking for other moms with triplets the same age as yours?
www.raisingmultiples.com
~~~~~~~~~~~~
Christian 18
Savannah 12
Jacob 3 1/2
and surviving sextuplets born at 32.2 wks Dec 02:
Noah 4# 4oz
Dylan 4# 3oz
Amalie 4# 2oz
Sweet Angels ^d^ ^e^ ^f^ We'll love you forever.

AnneLena - SAHM
·.¸><((((º>.·´¯'..¸.·´¯'..¸><((((º>.·´¯'..¸.·´¯'..¸><((((º>.·´
Christian 19
Savannah 13
Jacob 4 1/2
and surviving sextuplets born at 32.2 wks Dec 02:
Noah 4# 4oz
Dylan 4# 3oz
Amalie 4# 2oz
Sweet Angels ^d^ ^e^ ^f^ We'll love you f