An Essay from Any Mom, Any Dad
Managing Editor's Note: I read this recently and I thought it spoke to and about all of us. K
A Parent's Essay
How do you explain to someone that you spent two hours straight (your only good quality time with him after school) just trying to get your four-year-old child to say the “puh” sound? How can any normal family understand what it’s like that despite how badly your child wants the “P” snack (pecans), despite the fact that he’s very hungry, and despite the fact that he can physically make that sound, that he cannot fulfill such a simple request? It’s not that he doesn’t want to do it. It’s not that he’s being difficult. He wants more than anything to get his reward for doing it. But in two hours, he could only make the sound one time. One time. And despite his frustration - despite your frustration, it was a small victory.
You know he’s learning from each and every interaction. You know he can probably even spell the damn word you’re just trying to elicit one sound from. And you know one day, when it’s his time, his light switch will turn on and all his hard work, all your hard work will be worth it. But he has autism and nothing you or anyone else can do will flip that switch. You just have to be patient and wait for his brain to make those connections. A few prayers to his maker can’t hurt either. But you have to keep on teaching, keep pushing, and fight the urge to cry every time you bring him to tears trying to teach him to communicate his most basic needs. You have to do it because you love your child and it’s the only way. And you need the support of the people who love him, who love you, to do it day after day. You want their understanding too, but it’s not possible to comprehend the mind of a child with autism unless you live with it every day. So just support us. Share in our small victories and help us to keep striving for more.
April is Autism Awareness Month. Odds are good that in 2009, someone you know is affected by autism. Supporting research and education are great ways to help, but so is just loving, supporting, and accepting the children with autism and their parents who would give anything in this world to help their child.
Angie,
It sounds like it's time to forget the family. You don't have to blatantly sever ties, but treat the situation as if you lived across the country. Send birthday cards or gifts to the kids. Call occasionally. Just don't expect to have any relationship with them. It's one thing to have a relative who doesn't understand. It's another to have your family attack everything about your family unit at every turn. You don't need it. Your husband doesn't need it. And your children certainly don't need it. Time to let the distance grow. Don't even bother responding to BIL's e-mail. He's not worth it.
Posted by: Mom in TX | April 30, 2009 at 12:33 PM
Angie,
If you respond to the email that family member sent, be prepared for much more vituperation - judging by what he sent you, he seems like that kind of person. You might also wind up severing the relationship (although when your children are deliberately excluded from a family gathering, I think the relationship is extremely weak already). You might want to make sure your husband does not mind that happening before you email this person.
Since what he "really meant to say" was very unclear (gross understatement), if you want to send him a response you might inform him of that fact. Otherwise, it depends on whether you and your husband feel the relationship can be salvaged.
I have a female relative who has said very nasty things in front of my daughter. While my daughter's expressive language is limited at present, her receptive language is not to anywhere near the same extent; it is likely she understood what was said. I have other relatives who are supportive, so after my initial outrage I am not letting it aggravate me on my own account. I remain very aggravated on my daughter's behalf.
You sound like you are doing just what you need to do for your children. That's what is important.
Posted by: Carolyn M | April 27, 2009 at 03:25 PM
Angie, it so much easier just to focus on people who care and support you. don't get caught up in writing back to the A-hole brother-in-law. you are just slumming down to his level. You, your husband and three kids sound like a wonderful family. that's all that matters. the rest is superfluous.
Posted by: John | April 27, 2009 at 12:37 PM
One of the saddest realities about autism is finding out how shallow most of the world is, as well as how few real friends you have. I don't think our family asks for much from the NT acquaintances we have- much like Angie, a little respect, a little break now and then. There is no way to explain our lives, even to those who think they know something about autism (teachers, doctors).
Hooray for the one "puh" sound, you are more persistent than I! But then, I was up last night changing diapers on my preteen (soaks through multiple layers, will have to strip the bed today- or not) and am exhausted.
Posted by: wiser | April 27, 2009 at 11:24 AM
This is a wonderful essay. I will send a link to many of my friends and family who don't get it and think we exagerate everything that has to do with our ASD child. Some days, its not easy but let me tell you, it is so rewarding to see our son's success, some little ones, some big ones. We celebrate all of them!
Thanks.
Line
Posted by: Line Richer | April 27, 2009 at 10:24 AM
This is a fantastic post! I am SO Thankful that we have eachother here, because its just so terrible out 'here' in 'real' life (although you all are more 'real' than anyone else in our lives...)...I am always shocked (even though we experience it in our family) that it seems that you either have a VERY supportive or VERY ignorant and hurtful family, nothing in between when it comes to Autism in the family...and it sucks! I have been trying to write the biggest and most powerful "F" "U" email/post to members of our family because they are seriously ignorant, and very rude. Anyone want to help?
Here is the latest from my hubbys brother, who is responding to us asking why we were not invited to our nephews bday party, to which our oldest, Ethan (both Ethan and Alex are on the Spectrum) overheard that the party was on such a such a date at his favorite pizza/play place...and boy, did he not forget..I had to lie big time to him about the party being cancelled because we were not invited...here is my bro-in-laws response:
"Since you’re my brother I will give you some advice. Get your life together, work as hard and as much as you can to make things happen for yourself and your family. God helps those who help themselves. Not those who feel sorry for themselves. There is a difference. You were not brought up like this. We never seen dad hide behind us kids for any reason, he worked all the time and did, and still does, whatever it takes to take care of his family( you know this first hand). He never looked for handouts from family or friends. Yes you have "A" child with special needs. So embrace it, don’t use it as an excuse not to work and try to make us feel sorry for you. Its not your fault that alex has special needs, and it surely is not mom and dads or the rest of us. God gave you this challenge for some reason. So make it work.
And yes, we are both tired of all the B.S. caused by Angie and you. I will not have my family be around that and it is awkward to be around her. I just wanted to make that clear so when you forward this to mom and dad there are no mistakes on what I really meant to say."
WE never asked for handouts from family or friends, all I have ever asked of his bro (posting here) is that Andy have a shoulder to lean on because he works super hard at work and at home, and barely has any 'guy' time, so this fall I asked him to invite my hubby over for a 'game' or something, I even offered to pay for a basketball game tickets/etc, so he had a 'guy' to go with...then that became everyone in the family (hubby has 7 bros and sisters) that 'oh there must be a problem in their marriage if angie wants andy 'out' sometimes'...umm yeah, big stretch...and sure, every marriage has its ups and downs...
As far as him telling Andy to "work as hard at you can"...well that is a comment about me, because we dont 'own' our home (we rent a nice single family home, and now we surely dont even have time for maintenence, so if we could not sure if we would choose to own right now) and we have a used van, not 2 brand new cars...see hubbys family, well 'stuff' is what is important..their dad worked 130 hours per week and was at the bar the other times, and never was home....and we want the opposite for our family..sure their family had everything, the big house, a new car for everyone every few years, all designer clothes, etc...but right now in our lives, our kids are our priortity..and NEVER have we judged any of them for buying thier 'stuff' and being house poor, where they all HAVE to work 2 jobs/etc...
However, we choose that one parent would always be home with our kids, even prior to having Special NEeds in our lives....and this bro made the comment "What could Angie really even DO everyday, sit on her butt and do nothing?"....Oh that made me and hunny mad, and so we explained (God knows why) what we do everyday, why it would be almost impossible for me to also work full time, or even for Andy to get a second job, because we NEED him here!
Sure, if things got terrible and we NEEDED financially to do so, we would, but we have learned to live on a lower/limited income, we pay our rent, food, utilities, and our monthly bills...sure, more money would be nice, but right now, we have it worked to our benefit, and NEVER have had our HAND OUT to anyone...
I have no idea, and still havent heard what/why I cause so much 'BS' around where they dont want ME around their kids...because at family gatherings, who is always with the kids, Andy and I , playing watching, having fun with all of the kids, the other adults all pile in a room, talk, gossip and bitch about bills/money/etc and let their kids run wild, so we play with them, and the kids love us and we love them, NEVER have we done anything related to anything 'bad' in front of the kids...other than what he said "since I am fat and overweight, it MUST be that I am lazy on the couch everyday, there is no other explanation for that"...
TRUE story!
So, anyone want to help me write the response to this ass?
Thanks for letting me vent! I totally needed this, the article and the vent!
Angie
Mom to Ethan, Alex, and Megan
Posted by: Angie | April 27, 2009 at 09:44 AM
My feeling is the same. Anyone who is not faced with the challenges we face on a daily basis cannot fully understand what we go through. All we want is for family and friends to listen when we're having a bad day, and to understand that our children can't control their behaviour, as some tend to believe that they can. They don't realize how hurtful and frustrating it is to us as parents to experience such ignorance and lack of support. We have a small group of friends in our support group who are wonderful and we communicate whenever possible. We love each other like family and always lend an ear. Keep up the good work...that's all we need to hear
Phyllis mom to Spiro and Peter
Posted by: Phyllis | April 26, 2009 at 09:38 AM
There really is no way to explain to those not living in our shoes. This is why we are all so very important to each other. My sister...who does not get it at all...refers to my 'cyber friends' in my situation as my 'pretend friends'...they really do not get it...thank goodness for all of you...none of us are alone...thank goodness.
Posted by: Barbie Hines | April 26, 2009 at 03:31 AM
Right on, Any Mom, Dad. I explained to Ben's second Dallas Independent School District (DISD) Special Ed "teacher," who had done little for him, that his ABA facilitator and I were working with him on language two hours a day. Her response was all too discouraging: "GAWD. I see progress, but not two hours a day!" That was in 1992. The district had recently fired Ben's first teacher for using discrete trial methodology in the classroom. Now, 17 years later, DISD is attempting to implement an ABA "Star" program, a U-turn. His new teachers are trying to learn how to do real therapy. So far they are like a music teacher who knows the words to a song, but is tone deaf. Still, they are trying. And Ben is learning. As you say, every small victory is a blessing. Never give up.
Posted by: Dan E. Burns | April 25, 2009 at 10:34 PM
Wow! It's uncanny how appropriate this essay is for my day.
My sister is not speaking to me-AGAIN-because I didn't take my boys (both dxd with Autism) to her son's bowling party. A BOWLING PARTY for crying out loud!!
Oh well...I guess she can't understand, not having walked in my shoes.
So glad we all have each other to lean on in these times!
Posted by: Meg Naughton | April 25, 2009 at 09:06 PM
:o(
early tears on a Saturday morning.....
Posted by: michele | April 25, 2009 at 09:36 AM
Yep, I am also that any Mom. Both my husband and I take many teachable and learn-able moments with our six-year old several times each day hoping this time we'll here a clear word or see a complete following of the most simple direction.
Let's pray that every Mom and Dad never has to experience the moments that slip away. For those of us that are in it now, bless you, your efforts and that sweet child you are never going to give up on.
Cathy
Posted by: Cathy Jamexon | April 25, 2009 at 08:46 AM