feeling like a bad mom

[888mom]

I just posted a blog about my relatives criticizing me for being a bad mom.  I was just curious if anyone else was going through or has been through difficulties with their extended families.  What emotions did you feel?  What things were you told?  What were you blamed for your child's delays?  And how on earth to you convey reality to a bunch of pigheaded stubborn narrow minded.......  um, I mean to the people you love and care about .... how to convey what your child is really actually going through?  And that you aren't really a bad parent?  And sure, there are times when you may actually be a bad parent but they should walk in your shoes for a few months and see if they do some of the same things that you do to keep your sanity!  

Anyways, was curiuos if anyone had done a blog about these issues.  I'm in a funk right now, and am not sure how to get out of it.  I'm not in a funk because of my daughter.  I'm in a funk because of my relatives!  My daughter, I would not change for the world. Nor how I raise her.

[Sally44]

The thing is that all of us are actually doing the right things with our children.  We are understanding them and helping them cope with their environments etc.  We give them structure and supports, and although we have our ups and downs we actually cope because we have to and because we do know our children better than anyone else.  Then, in comes someone from outside, whether it is friends, family or professionals and they make their observations, judgements and criticisms.   Wouldn't it be just grand to be able to hand over our children to anyone who 'has a bright idea' and tell them, "okay you have a go."  I have another friend whose child has downs, not autism, and she was telling me about an incident when a professional visited her house with information 'on the latest communication strategies' and was suggesting she changed to his new system.  My friend said she was nearly in tears.  She had invested three years with Makaton, it is recognised and used throughout the UK in all special ed nurserys and schools.  Her son likes it and uses it, and her was someone asking her to change the system and start again.  I am not saying that we are against change because I am sure none of us are.  If something works we are more than willing to try it.  But all of us know it takes a long time to get any kind of semblance of normality.  And, so what, if our children are different and cannot do things in the same way as other people.  What is the point of stressing out everyone trying to get an autistic child to do something 'to appear' normal.  
Next summer we shall all be going on holiday to Greece to stay with the in laws.  My husband is okay with this, but I am so nervous about it because my son will be 8 and it is now so obvious that something is different.  He will be walking up and down the appartment repeating TV dialogue to himself with all his aunts/uncles and cousins looking at him.  We haven't been for nearly 3 years and I know that this year we will get alot of strange looks.  I actually know of two other children with autism in the same village my husband comes from.  But it is all secret ie. their mothers have told me and made me promise not to mention it to anyone else incase it gets out.  And they haven't even told their own families of the diagnosis.  This should be one hell of a holiday!!!!

[RickDG]

Welcome to the club.  I have heard a few pretty ignorant comments from family.  One from my mother questioning whether perhaps it was the IVF we did in order for my wife to get pregnant.  Other family members brought up the lack of breastfeeding (twins with a C-Section... she tried as hard as she could but just couldn't keep up with it), vaccines and of course everyone is shoving Jenny McCarthy's diet tips our way.  Funny too how the visits have stopped from all but a few in the family as well - actually, that is for the better now that I think about it.

[kimberlylk8]

I have had family members (my in-laws) and church members tell me that I was a bad parent. That I needed to teach my son who is the boss in the family. I knew they were wrong, but it hurt the same. I do not have any advice, but I know how you feel.

[MJIthewriter]

There are a couple different positive approaches one can make. One can decide the autism doesn't define them and that they are a person *with* autism.

Then there is another interesting view where one can say yes I am autistic. No my autism doesn't defaine me, but I am proud to be autistic even if it gives me challenges because it has also given me strengths as well.
http://web.syr.edu/~jisincla/person_first.htm

I've seen both perspectives used in the autism community. I guess it depends on the person and what they want to see. I think more likely parents are to use the person first approach.  Individuals themselves may benefit better from tha autistic person viewpoint if they use it in a more constructive way.

Here's something else written by Jim Sinclair. It's called: Don't Mourn For Us.
http://web.syr.edu/~jisincla/dontmourn.htm
This may be a good thing to throw at those relatives who just don't get it. But keep in mind it does stink... Even as an adult I still get from time to time people thinking I'm just a spoiled brat. They don't understand why I may behave in different ways at times.

That's something that one will have to live with. But I'm hoping if more people can join autism advocacy, maybe we can make a difference and help change those views.

[KD9ER]

I'm new to the whole "Autism" lifestyle.  My son just got diagnosed last month.  He's currently 21 months old and I am already being blamed for so much!  He's never been the "normal" child, suffering with severe GERD from birth to the present and was very "ahead" of the learning curve for the longest time.  He walked at 8 months, talked up to 10 words starting at 6mo old!  I mean we were amazed.  Then March of this year we lost all words, he started becoming violent (hitting, biting), and showing huge signs of aggression.  I mean where did my child go???  I have a background in Special Ed so I should be okay with this right?  No.  It's a whole other ball game when it's your child, your heart and soul.  Granted my son is on the light end of the scale.  He seems to only be in the Social Realm of the disorder currently.  However when I broke the news to my family, just my mum and dad, they were in total denial.  They told me it's all discipline and schedules.  I was so angry!  Here I am confiding in them with the hardest news I have ever had to digest and yet they laugh it off!!!!!  Wow.  Then going home for my Gramps' Funeral, well let's just say it was a rude awakening.  My son often has night terrors which last from 2 seconds to 10 minutes.  Well I have found the best way to handle them is to ignore them up to 2 minutes and then place my hand on his back if they last longer.  But if I pick him up we'll be up all night and his GERD will be so bad the next day he refuses to eat, thus making it worse.  Well he has an episode and my Mum accuses me of being a heartless you-know-what and a mean mother.  I had to walk out of the room to keep my calm.  I was more p.o'd than I've ever been in my whole life.  I was literally seeing Red and wanted to deck her.  Not something I'm proud of, but I couldn't believe she of all people would accuse me of this.  So after 10 minutes of cooling down, I marched in her room and demanded my son back and explained that he wouldn't be alive if it weren't for me fighting for his health since the day he was born.  I was the one who held him and comforted him through the seizures, I was the one who cried with him when his GERD was so bad he couldn't sleep, I was the one who spent over a year being so diligent in tracking his whole medical nightmare in a 24 hour log so the doctors would see the trend.  Where was she?  Claiming she'd be there to help me and yet would never show.  I even told her she was making him more ill by picking him up and waking him to "take care of him".  She didn't like what I had to say and we didn't talk for hours, but he is my child and I know him better than anyone.  Even her.  She had her moment when she raised me and my two brothers.  This is my child.  She and my dad are to respect my discipline and my way of raising him or they can't be around him.  He deserves better than an emotional rollercoaster.  If we aren't all on the same field then they can't be part of his life.  
The next day I saw a big change.  I don't know if it will stick, but there was no more picking him up and coddling him after discipline or my dad smacking his hand when he was having "his moment".  They started joining my side.  They still aren't accepting of the diagnosis, but I don't care.  

My husband's family does not know any of this.  They barely know who he is through pictures.  It's sad.

So my child has Autism.  That doesn't define him.  It only explains why he doesn't vocalize.  He is the child who loves to throw the ball a million times and watch it bouce.  He is the little boy who loves to organize his Little People Noah's Ark animals.  He is the child who tries to giggle and makes us roar with laughter because of his "forced" effort.  He is the child who I carried for 10 long months, was 3 weeks overdue and I love him because he's my child.  Doctors can label him all day.  But the only label I have for him is Son.  My perfect son.

Hang in there and know you are not alone in this.  We all have our adversity to overcome and it is horrible that we have to take it from our own family, but at the end of the day it's simply your own family that counts.  You, your children, and your spouse.  Thanks for letting me know I'm not alone and for letting me get that off my chest.  It's been eating away at me.  

[psycholove]

Hi

My son too has autism - and yes we have had critism from relatives, some members of my family found him difficult and have called me a bad mum. I think the way to deal with it is to say to them "try and live in my shoes for a week and then lets see how you feel". People are often quick to critisise if they dont understand what they are faced with, you need to remember you are a good mum and are probably coping better than they would xxx

[MJIthewriter]

Autism is not the result of bad parenting. Oh I found a really cool book at Goodwill. I couldn't buy it but I read through it and thought it's great. It's illustrated, simple to read and plus got lots of cat pictures. You can't go wrong with cat pictures. ;)

All Cats Have Asperger Syndrome
by: Kathy Hoopmann

[888mom]

Mmm... violent alcoholic a better diagnosis?  Yes, we are giving our children alcohol!  That's why they have developmental issues!   Sorry Sally44 that your inlaws are crazy.  But, I guess families are supposed to be crazy.  Keeps life interesting?  Thanks for sharing... knowing someone else is out there goign through similar things helps me know that some of my family isn't being the only difficult ones.  And I guess it's really only my father, my fatherinlaw, my brother, and my brother's wife.  My brother has been pretty vocal about how it's how I'm raising my daughter.  And he doesn't even have children!  He has never babysat, never been around children.  So why is he being so judgmental about how I am raising my daughter?  And blaming me for her developmental issues?

[Sally44]

I think it does take a while for the child's difficulties to 'click' with friends and relatives.  When my son was 2-3 years old, I used to get these talks from my mother about discipline and having to be consistent etc.  Now he is nearly 8, and she has seen for herself how he gets upset about something that would not phase us at all.  She can see that his reaction now is not 'normal' from an age appropriate point of view, so she can now tell that he is different and he does have difficulties.  When they are toddlers their 'autistic' behaviour is similar to their peers behaviour.  They appear very 'strong willed', even spoilt etc.  But these socialising and social behaviour abilities are just starting to emerage at that age and that is also why most children with a spectrum disorder are picked up after age 3, because it then is becoming apparent that these social skills are not developing and they are still throwing tantrums like a 2 year old would.
My other side of the family (my husband's) is in Greece.  We haven't even mentioned the word 'autism' to them.  They wouldn't understand what it was.  They would be very judgemental about me and the child.  It is a totally different culture, and eventhough we have attempted to talk to my mother in law about it, she is making it very clear that she doesn't want to know.  She says 'he is just like her husband' (who was a violent alcoholic).  She seems that is a better 'diagnosis'.  I prefer the label 'autistic' compared to 'drunk, violent, lazy' etc.
I have even heard of families where aunts/uncles stopped taking their own children round in case they would 'pick up' some bad habits from their autistic cousin!  Now tell me who is lacking empathy!
Maybe you need to involve them more and explain things more.  Because there is 'so much' information you have it could bog them down.  I would recommend sticking to just one area eg. SALT.  So, tell them what her targets are, why she is having difficulties, what strategies have SALT recommended you try, and let them know when she meets her targets!
Other than that just refuse to take the blame and tell them so in as calm a manner as you can!  These children cannot be 'fixed'.  But it takes everyone a long time to come to terms with that.  They are probably very upset about her situation too.  If they understand there is a genetic part to all of this they may even be feeling guilty.
Is there any particular behaviour they are blaming you for?