Sometimes I feel like a bad mom

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Yesterday I went to see about signing my daughter up for special needs yoga. While waiting at the sensory gym I ran into the OT who had taught my daughter's Wiggle, Jiggle, Move class 2 years ago, before we realized she was so special. In talking with her I asked if she, at the time, knew that anything was up and she said "Oh, yes, deffinately." When I asked her why she hadn't said anything she said, "It wasn't my place, you weren't ready, you thought she was just wonderful."

Thinking back, I always knew my child was different, I just thought she was gifted. She was walking early, talking early, not socializing with peers, but I thought that was just because she was waiting for her peers to catch up to her.

If I had known 2 years ago what I know now, about sensory issues, gluten, social skills, I could have had early intervention services and maybe she wouldn't be having some of the difficulties she has now. I feel like I've been a bad mother, first of all for makiing excuses for so many years and even more so for being so outright in denial that I blocked out people who could have offered advice. Just thinking that for the first 3 years of her life I thought sugar was making her hyperactive and unable to nap and in my attempts to reduce sugar I ended up increasing her consumption of gluten astronomically! I was going out of my way to give her foods that made her sick!! ! I feel really bad about it all at the moment.

I understand your feelings. I've been thinking that way, myself.

That said, the fact that you're thinking about this now, and feel bad, and you're attentive to your daughters needs and give her all your love, is a step in the right direction.

Specialists, professionals, and people who spend their whole lives studying ASD/AS, still don't know much... so don't blame yourself. It's a somewhat new diagnosis (70ish years old?) and it's a difficult thing to diagnose on your own.

Start a new day. Look forward. Work with your child, and make her happy. That's all that really matters.

You certainly aren't a bad mommy.

hey, that gluten cassien thing only works if the child is allergic to that suff, it doesn't CAUSE autism. And my mom NEVER figured out I was autistic, at least you did.

Don't blame yourself, it will make you crazy and frantic to do just anything to catch up.. Just start where you are and be level headed and use your common sense.

and Relax. You do know God is in charge, right?

That is an absolutely unfair and a very "not nice" thing for her to say. First of all, unless you have another child on the spectrum, it is impossible to recognize the signs of autism/aspergers. Actually, even IF you have another child on the spectrum, people are all so different it's hard to compare. I can't believe she would say that. I actually think it's downright mean. And you still think your daughter is wonderful. Of course she is! A diagnosis doesn't change that!
It is very common for parents to guess that their child is gifted and then later they are diagnosed on the spectrum. Even so, that doesn't take away the gifted part. Your daughter is smart regardless of anything else.
Actually, you are a GREAT mom. You see the positives in your daughter and know her potential. Don't let others take that away from you or crush your spirit.

And if you get a chance, go to http://www.nlconcepts.com
You'll find interviews of people on the spectrum, and siblings and a section on the greatness of autism. It's a great "spirit lifter" when you're feeling down.

Seriously....Do not beat yourself up. The previous posters are absolutely right. Aspergers is really hard to see when your child is gifted and has language skills. The only reason that I knew about my son is because he was 4 months premature and I was already in early intervention for language. And he was watched from day one. I didn't know about autism and aspergers until I actually worked in my son's preschool inclusion class and learned about it. Had he been born full term with no language impairment I don't know that I would even know now that he is on the spectrum.

I also work for a school for kids with special needs, and I can tell you that teachers do not tell parents what they think about children. They only talk about what they are working on. Many parents are not open to the idea that their kids are not perfect, and some of them really freak out when a teacher gives their opinion. Unfortunately parents like you and I, who want to know so we can help, lose out on that really great information because of the few that cause problems. Caregivers learn to keep their mouth shut.

You know now. That's what matters. You are on this website, you want to help, you are open and willing to do what you need to do...you're a good mom.

I think your daughter got a lot more from you thinking she was absolutely wonderful at that age, than she might have from early intervention. Think of the security she had, and the self-image she had the opportunity to build at a crucial age. I've not seen much that early intervention can do for the higher functioning children, to be honest. Any professional that sees something they know can be worked on will take the risk and tell you. Keeping their mouths shut makes it clear they aren't so sure the benefits would outweigh the negatives. It still would have been a long road to discovering her gluten sensitivity; who knows if you would have. There is only forward to look at. Forget the backwards. Your child IS wonderful.

It's funny, what MommyJones said about the teachers. My son's 1st grade teacher apologized profusely for having to deliver difficult news, afraid that we wouldn't want to hear it. But, by then, it was a relief to know that someone else saw what I was beginning to fear. I had no name, no suspected diagnosis, just a growing sense that something was holding him back, and she saw the same thing. It was validating, and the first step on a road that changed everything for all of us. It was needed at that time, but I am glad we weren't on the road before that. Oh, some things could have been better, but other things not. He was just my precious, magical child. What a lovely thing to have.

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Last edited by Willard on 11 Jan 2010, 10:42 pm, edited 1 time in total.

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Last edited by DW_a_mom on 12 Jan 2010, 3:54 pm, edited 1 time in total.

I had an IEP meeting one time with a principal of the school that my son was going to go to, along with the home visit teacher working with him. The Principal looked at him and said he looked a little aspergery, and afterwards the teacher said that was innapropriate for the principal to say that because parents can really get offended from stating a "diagnosis". A month or so later she was watching my son and she said "autism, I can't believe I didn't think of that, it's hitting me like a ton of bricks". Prior to that (the previous year) I asked about certain things he did, and his teacher kept saying that was just him. Over the next week I started looking into it further. I realized after the research that he was probably on the spectrum. I told her what I thought and she swore up and down that he wasn't, and still to this day denies it even though he was diagnosed. She tried to cover herself. The teachers here at my school really don't say too much. They see symptoms in their kids but are told not to say anything to the parents "diagnosis" wise, because they can get in trouble for it. It's such a shame. That teachers comments woke me up, validated my concerns and made me pursue a diagnosis. He was almost 4.

Until age 4 all I got was language help, and really not much of it until I got fed up with the school system and went private. I started late too, and my son rocks! I have my regrets, but I agree with dw_a_mom. I don't know how much earlier intervention would have helped. He maybe would have picked up language sooner, but that's about it. Now, until you hear him talk and listen to the immature speech, you wouldn't know there was anything going on with him unless you knew what you are looking for. You aren't too late. You weren't in denial, you loved your kid the way she was. If only everyone did.

Agreed. Don't bother with it if she isn't allergic/celiac/lactose-intolerant. My mom put me on those diets and all I got out of it was a lot of psychological food issues. Actually, the years I was on them, I had my first episode of major depression... I don't know whether it had anything to do with the food; I assume it was coincidental, because I was not malnourished. I do know that useless special diets didn't help me any.

I think I can top sinsboldly's mom, if only by a little--mine knew when I was eleven, but never told me until I confronted her with an official diagnosis at age 20! Believe you me, you're not doing a thing wrong. Compared to my mom's denial, secrecy, and biomed-pushing, your not catching it for a couple of years is practically angelic. Besides, lots of gifted kids have mild autistic traits; the differential diagnosis can be hard even for a professional to make.

My guess is that deep down, you know very well that you didn't do anything wrong; and you are here because you want other people to confirm that you are right about yourself, because your feelings aren't following your logic when your logic says you shouldn't be feeling guilty. It's annoying when your feelings don't follow your logic. Mine do it all the time. But it is a part of life.

A big thank you to all the people who offered support/understanding

My guess is that deep down, you know very well that you didn't do anything wrong; and you are here because you want other people to confirm that you are right about yourself, because your feelings aren't following your logic when your logic says you shouldn't be feeling guilty. It's annoying when your feelings don't follow your logic. Mine do it all the time. But it is a part of life.[/quote]

About the gluten... In this case, and I do not think it is true for all spectrum kids, see my blog if you want the very long story on my child. She is extremely gluten intolerant. Gluten does give her severe migraine type of headaches. I did not know what gluten was and gave her a lot of high gluten foods over a long period of time. Deep deep down I think I always will feel guilty about it.

Two part post:

OP: You're a GOOD mother. You didn't do anything wrong. All mothers, all parents, will feel the guilt train chugging down the tracks now and again. You're involved with your child, you're doing all you can to help her, you're the OPPOSITE of a bad mother.

__________
The fact that these diets are even associated with a specific medical condition opens doors for critics to yell "Asperger's! It's the latest trendy diagnosis! They even have their own special diet!"

A study came out just last week debunking the gluten free diet (as if it needed more debunking). "Feeling better" is not quantifiable, and I am not directing this at a member of the board, but more at people who push these diets to the autism community. It makes the entire community look bad. It's not good science.

If a person is ALLERGIC to gluten or casein, by all means, don't use those products, but those allergies are few and far between. But oh, there is the "intolerance"! That's convenient! Guess what? I'm "intolerant" of Taco Bell bean burritos, but I'm functioning just fine.
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Don't waste your money on nonsense, and don't drag the rest of the Asperger's/Autism community down by associating it with quackery.

Hey, lactose intolerance is a well-known phenomenon. It happens when people don't produce the protein that helps them digest the sugar you find in milk. Celiac disease, similarly, is documented; it happens when eating gluten basically causes the body to attack the small intestine, creating all the signs of malnutrition in a person who is eating enough (or even eating too much). There are tests for both conditions, and the elimination of lactose and gluten, respectively, is the accepted treatment for them.

Neither condition, however, has anything to do with autism, and when they occur together (both are common medical conditions, so it's certainly not unheard-of for an autistic person to have them), it is coincidental.

Just for the record, my daughter is diagnosed as both having asperger's syndrome and being gluten intolerant. I do not beleive the gluten caused the aspergers nor do I believe vice/versa. I feel guilty that I did not understand either condition nor diagnosis sooner. There were some aspects of aspergers, such as being a picky eater and having sensory issues relating to texture and taste, as well as being unable to communicate clearly which made it difficult for me to understand her gluten intolerance. There were some aspects of the gluten intolerance, such as banging her head in response to migraine headaches, that made it difficult to understand what was going on with the aspergers. My confusion and my misconceptions about these two problems made it harder for me to get my daughter the help she needs and to feed her appropriate foods given her nutritional needs. My confusion also meant that my family was easy prey to some pretty nasty people who encouraged me to beleive both conditions were one and the same. I feel guilty that I didn't put all of this together sooner.

I know you do, but you shouldn't. NO ONE can sift through all the noise on these issues that fast. If the experts are all confused, we can't blame ourselves for going through the same. I am just glad you are now on solid footing, confident in your analysis, and able to move forward. You should be, too. Compared to so many I've heard from, you got there really, really fast.

Don't beat yourself up about it. A lot of typically developing children have quirks and strange behaviors. Several of my friends children have sensory issues that my AS son does not have. What I am trying to say is, that when they are that young, sometimes it takes awhile to piece it all together. Now that you know what is going on, it only gives you more tools to be the great mom that you already were!! !!