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Am I doing enough??

Posted by on Apr. 3, 2013 at 9:49 PM
  • 11 Replies
Seems like a silly question between the doctor appts and therapy appts and the evals that we put our son through, but after a conversation today with another mom I left feeling like what if its not enough?? I have a 3year old with Autism. He was delayed his whole life, kind of always knew something wasn't right. We had him in Speech, OT, and PT a year before he was officially diagnosed, so its not like he didn't receive help, we just got him diagnosed because of insurance purposes and being able to get him ABA therapy. He is no the GFCF diet now for 10months and its going well. We have played around with vitamins, seen a DAN dr a couple times. I felt like we were doing the right things, and my son is making gains (slowly but surely). Then today happened. I spoke with a mother in the waiting room at my son's therapy place. She told me that she didn't believe in Autism, that all of it is an Auto-immune disease, that its a swollen brain and gut disconnection. She said that her son was diagnosed with Autism at the age of 15months and then at the age of 3 her son no longer fit the criteria for Autism. She has done therapy's, chelation, the diet, Hbot. And I got to see her son, he made eye contact, he carried on a conversation with me, and in it all I never would have even believed he was ever considered Autistic. Not that being Autistic is a bad thing, I love my son he is an amazing child. But what if there was more?? What if you or I could fix it?? Am I doing enough?? I don't know anymore. And the scary thing is I don't want to later on down the road think I should have done more!! I don't know what to think anymore.....feeling sad today
by on Apr. 3, 2013 at 9:49 PM
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Replies (1-10):
JTMOM422
by Platinum Member on Apr. 3, 2013 at 10:08 PM
1 mom liked this

Could her child have been misdiagnosed? I think as mothers we all feel like we could or could have done more for our child. I don't believe it miracle cures. I don't believe there is a cure as of right now. That is my opinion. There are other moms who may think differently. I do believe that there are issues a child may have that may bring out the symptoms of Autism more. I know when my son is sick you can tell he has Autism more than on an everyday basis. You shouldn't feel sad because you love your son and are doing so much for him. Think of the positive steps he has made. Try not to let another mom bring you down. HUGS momma. Hope you get to feeling better.

kajira
by Emma on Apr. 3, 2013 at 10:40 PM
1 mom liked this
If her child was cured of autism, I don't believe he was autistic. I've done all those "theories" brain/gut combo - plus all the vitamins, special diets, and i'm still very much so autistic. I feel a hell of a lot better, but i'm still autistic. LOL
Quoting JTMOM422:

Could her child have been misdiagnosed? I think as mothers we all feel like we could or could have done more for our child. I don't believe it miracle cures. I don't believe there is a cure as of right now. That is my opinion. There are other moms who may think differently. I do believe that there are issues a child may have that may bring out the symptoms of Autism more. I know when my son is sick you can tell he has Autism more than on an everyday basis. You shouldn't feel sad because you love your son and are doing so much for him. Think of the positive steps he has made. Try not to let another mom bring you down. HUGS momma. Hope you get to feeling better.

Living with Autism - The quirky kitty.

Our autistic Family - A Dad's point of view on living with Autism

VioletsMomTown
by on Apr. 3, 2013 at 10:42 PM
2 moms liked this

Do the best you can, not everyone can afford HBOT, and you've done so much already. I would say its not going to be such a miracle for everyone, but we still can hope and try our best to help them heal any medical issues. I have these same feelings, I'm always researching ways to help. What does your dan doctor say about how your son is doing? We had to switch to the SCD diet before we really started seeing major gains. Not every child needs HBOT, not every child needs chelation, my daughter doesn't need those. Maybe you should ask your dan doc to do some more testing. It may be as simple as tweaking the diet. Don't give up, but also have patience, our kids will progress on their own timelines, as long as they're going in the right direction! He's still young, you are on the right track.

Violet's Mom

Twitter @autismnotebook

Zoeydd
by on Apr. 3, 2013 at 11:09 PM

Thank you everyone, just having a day a guess.  My husband and I were talking about this and he even said that this is why we call it life, its full of decisions and no guarentees.  We love our son he is doing amazing and we can only do what we are doing now and pray for the best.  I know things can be far worse then what they are   Thank you again to everyone

Zoeydd
by on Apr. 3, 2013 at 11:10 PM

 

Thank you, that totally just made me smile.  I loved your post earlier about Autism Awarness

Quoting kajira:

If her child was cured of autism, I don't believe he was autistic. I've done all those "theories" brain/gut combo - plus all the vitamins, special diets, and i'm still very much so autistic. I feel a hell of a lot better, but i'm still autistic. LOL
Quoting JTMOM422:

Could her child have been misdiagnosed? I think as mothers we all feel like we could or could have done more for our child. I don't believe it miracle cures. I don't believe there is a cure as of right now. That is my opinion. There are other moms who may think differently. I do believe that there are issues a child may have that may bring out the symptoms of Autism more. I know when my son is sick you can tell he has Autism more than on an everyday basis. You shouldn't feel sad because you love your son and are doing so much for him. Think of the positive steps he has made. Try not to let another mom bring you down. HUGS momma. Hope you get to feeling better.


 

Koltie6
by on Apr. 3, 2013 at 11:17 PM
1 mom liked this
My son is 6 . We just started seeing progress in the last year. We have been on a protocal with a certain Dr for 3 years. At first he had gains but slowly. When they finally determined he was not absorbing folic acid and gave him a new supplement he has amazed us daily. However I used to feel just like you . I still do when I see a child further down the road than us. But I always try to remember there are some not as far as we are. I always say this is a marathon not a sprint. Good luck!
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dawncs
by Dawn on Apr. 3, 2013 at 11:17 PM
2 moms liked this

You are doing the right thing for your son. You have to realize a disability is a list of characteristics, and some are more effected more than others. Her son was probably misdiagnosed or very mild to say the least. The mild or high functioning side of Autism tends to be more like normal except for some quirky behaviors. I should know since I have Asperger's Syndrome diagnosis. I can carry on a conversation, but it depends on the topic to say the least. If it is a topic that I am interested in, I can carry on a conversation longer than one that I am not interested in.

Dawn


Group owner of Different Learners Support Group (http://www.cafemom.com/group/118648)

KatyTylersMom
by on Apr. 4, 2013 at 1:44 AM
2 moms liked this

1) it sounds like you are doing a great job in caring for your son.  As far as the DAN doctors go my only advice is keep trying, keep getting blood tests and addressing the issues they show, and keep on the vitamins and supplements. 

2) Autism is a collection of SYMPTOMS.  There is nothing to say that your kids autism is caused by the same thing or will be helped or even 'cured' by the same thing as anyone else's kid.  So while I'm sure that mom meant well by sharing the exact things that had worked so well for her son, that doesn't mean that you are a bad parent for not doing all of those things or doing them wrong if and when they don't have as much of an impact on your kid. 

3) If one treatment works and another one does not for your child that does not mean that your kid REALLY has autism and the other kid didn't because we have NO WAY OF KNOWING what is causing autism in our kids.  There are many theories and many treatments that have worked for some but not all such as the GFCF diet, B12 shots, vitamins, supplements, HBOT, the list goes on and on and all have helped some kids and adults achieve great things.  But it actually really makes me pretty mad when a parent shares the 'ultimate success story' of a certain treatment or series of treatments helping their child 'lose their diagnosis' and the first thing said is "OH well CLEARLY he wasn't really autistic".  Maybe the kid was mild maybe he was more severe but I'll tell you what: to get a diagnosis at the age of 15 months you are NOT looking at Asperger's or high functioning autism. 

TheJerseyGirl
by on Apr. 4, 2013 at 5:28 AM
1 mom liked this

 I think we all feel that way and worry that if we just let them be by themselves, that we've let them down. You're doing all you can and should be so proud of yourself!

darbyakeep45
by Darby on Apr. 4, 2013 at 6:40 AM

I agree here.  Hugs mama!

Quoting kajira:

If her child was cured of autism, I don't believe he was autistic. I've done all those "theories" brain/gut combo - plus all the vitamins, special diets, and i'm still very much so autistic. I feel a hell of a lot better, but i'm still autistic. LOL
Quoting JTMOM422:

Could her child have been misdiagnosed? I think as mothers we all feel like we could or could have done more for our child. I don't believe it miracle cures. I don't believe there is a cure as of right now. That is my opinion. There are other moms who may think differently. I do believe that there are issues a child may have that may bring out the symptoms of Autism more. I know when my son is sick you can tell he has Autism more than on an everyday basis. You shouldn't feel sad because you love your son and are doing so much for him. Think of the positive steps he has made. Try not to let another mom bring you down. HUGS momma. Hope you get to feeling better.


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