The Final 2 Survival Characteristics

Filed under:Parents Issues — posted by admin on January 29, 2013 @ 9:56 am

Hi there,

I am down to the final 2 “Survival Characteristics” for Parents today. Just to recap if you’ve not read my last 2 blog posts… I’ve been sharing my 8 Key Characteristics that I have seen, over the years, in parents who have both survived and thrived with their child with Asperger’s or ASD. So far they’ve been:

* Research

* Patience

* Determination

* Sense of humor

* A positive outlook

* Expressing emotions

And here’s number 7…

7. Being ruthless – Now this survival characteristic is a further extension on “determination”. What I am talking about here is the need, when necessary, to be as ruthless as the most hard-nosed business person when it comes to your child. To give you an example I have heard of parents who bake cookies and take other treats into IEP meetings to try and “win over” the teachers and other educators in the room. Now for a start this isn’t my favorite approach as I feel it can blur the boundaries of what can be a “battle ground” at times. However I know people who do it and get great results so who am I to argue? But my point is – what happens when the head teacher turns around and flatly refuses the extra social skills class that your child needs (whilst he’s sat merrily chomping on your best home made chocolate brownie)?

This is when ruthlessness needs to take over. If your son NEEDS that extra help then things may need to turn a little heated for you to achieve that. This may involve you a very stubborn attitude and continuing to question the school in terms of their legal and moral rights to deliver what your child needs.

It may also mean mentioning a third party agency with clout such as The Office of Civil Rights in the USA. They are a very powerful force and I got some great advice on this from an interview I did with a mom called Mary Romaniec several years ago, who told me…

“That’s something that a lot of people don’t realize how much power that has, even putting that into a letter. The Office of Civil Rights is the federal arm of the special education laws. And if by chance a school district is found to potentially be violating federal laws, the school district could have the federal attorneys come into their offices and be there, camp out for months as they comb through files and interview personnel, costing them hundreds of thousands of dollars in attorney bills. And all a parent has to do is just mention, “I believe that you violated my child’s federal rights.” And you put that in writing and you will be surprised at just how much a school district will finally start paying attention to what you have to say…”

So whether it’s mentioning an external legal or governing body, or the ability to stare the head teacher in the eye and quite openly question their commitment to your son (with an attitude that you don’t intend to take “no” for an answer) – then there is definitely a time and a place to be ruthless.

8. A good support network – Now this is clearly not rocket science; I’m sure you know the importance of good friends and family at tricky times. However there are a few important distinctions I want to point out. Firstly in today’s world there are increasing numbers of single parents (primarily moms) who are in a position of having to raise their child/children alone. This means that the “traditional” source of support – your husband, wife or partner – may not be available to many. So this changes the situation around and means that the need to look for external support is even more important. With no “significant other” to bounce ideas off, laugh, cry and experience all of those other emotions with, it can become isolating. Pretty soon situations and problems can appear much worse than they actually are – simply because you have no-one to share your burden.

This is where your need for wider family and informal/friend networks are so important. We ALL need someone to hold us close when the tears are flowing down our cheeks, or to laugh with when situations become down right comical (e.g. in the “if I don’t laugh I’ll cry” type scenario). So the parents who survive the best have these people in their life. Friends or relatives who can swoop in when life is tough and drag you off for a coffee, a cupcake and help you laugh away life’s troubles. And this by no mean just for single parents. I know many parents who are in a marriage or relationship but when it comes to caring for their child with Asperger’s, to put it politely… they may as well be on their own!

It’s the kindness of a friend sending you a thoughtful text on the morning of your child’s IEP meeting. Or a friend who’ll drop everything at a minute’s notice, and take your other kids out to the park for an hour whilst you deal with your son having a meltdown about school. These people help you get through the day. But I must also add that there are many really strong relationships and marriages out there where both husband and wife work together each and every day, and are the number one source of support for each other.

It’s just so important to have these supports in your local neighbourhood (or in your very own house); but the internet has opened up many more possibilities too. You can connect with friends, or specialist groups related to parenting at social media websites like Facebook. You can reach out and share problems with other parents who really understand Asperger’s on specialist forums (like your forum at www.parentingaspergerscommunity.com) or by adding comments on blogs (like this one). And again the really successful parents, in my experience, will often have both local contact and friends, as well as utilize online support groups and forums. So however you do it – make sure you have a good solid and , where possible, varied network of support.

Well that’s all for today and I hope you enjoyed this mini-series over the past couple of weeks. Take care,

Dave Angel

comments (23)

23 comments »

Thanks for the article. I am currently seeking a “504″ plan for my daughter and have run in to some resistance from the school. I have just had my initial meeting and because my 14 year old is on the high-functioning side, they are resistant to providing her the accomodations she needs. I am going to continue to pursue it as I am her best and only proponet for her success in school. I appreciate the words of advice, wisdom and support.

Comment by Janine Foster — January 29, 2013 @ 6:01 pm
I don’t know if this will help anyone but when we have an IEP meeting with a new school (Middle school or High school) we had our grandson signed up with the mental health dept so that we had a person of authority to back us up on what we were expecting of the school and it seemed to work. They did not say much but being there gave us more authority that the teachers would listen to.

Comment by Dottie Affayroux — January 29, 2013 @ 6:14 pm
Regarding #7 and contacting the US Dept. of Education for Civil Rights– sounds great, eh? Well… be super careful. I did exactly this back in 2007 when my son was being ‘harassed’ out of our local public school in Shawnee Mission, Kansas (Belinder Elementary) when he was only 7 yrs old– as the principal did not want an LD student in her “Blue Ribbon” award winning school. Asperger’s was a fairly new diagnosis back then. I thought that fling a complaint with the US Dept of Education was the right thing to do in this case–and that it might bring better results… put an end to the never ending harassment and bullying that was taking place. But– it completely backfired!! This incredibly egotistical woman (principal) picked up the phone, as soon as I informed her that she and her school were going to be investigated, and called SRS (Child Protective Services)– filing a slew of false allegations against me… saying I was an abusive parent. That “I” was the one mistreating my Asperger’s son. She even got other members of her staff and faculty to lie for her… and go along with it. It was a nightmare. An absolute nightmare (which is EXACTLY what she wanted)!!

In the end, she won. I had to take him elsewhere for his own protection–and my own sanity. She is still the principal there to this day (15 years later). I often wonder how many other parents and children went through the same abuse this woman put us through. I’m sure we are not the only family terrorized by this principal. In hind sight– calling the US Dept of Education for Civil Rights may not have been in our best interest. Amazing how this woman got away with this form of retaliation!!

Think twice about it. Know what you are up against. Power struggles are often a huge waste of time, and physical and emotional energy.

So… although this sounds like a great way to get assistance in getting your child’s needs met— watch out for vindictiveness and severe forms of retaliation such as this I just outlined. Don’t ever underestimate those with huge ego’s on a power trip!

Comment by Reta Saffo — January 29, 2013 @ 6:24 pm
Your site and mini series on parenting a child with Asbergers is very appreciated and valuable. Thanks for all the excellent material. Keep up the good work.

Comment by Nyla Norris — January 29, 2013 @ 6:24 pm
My daughter could use some extra social skills but her school won’t listen to me because she hasn’t officially been diagnosed with Aspergers since she doesn’t fall within the DSM criteria. She is on the mild end of the scale. Her main issue, and it’s a serious one, is social deficits and anger. But the teachers and principal will not listen to me. They tell me she seems fine to them. Here we are in the middle of our 2nd year there,Moshe still doesn’t have invitations for play dates, she cries and says she doesn’t have any friends. I’ve looked up Aspergers and she matches the social deficits to a T. She goes to a private school.

Do I have any options since she doesn’t have a diagnosis?

Comment by Cheryl W. — January 29, 2013 @ 6:35 pm
My son who is austic and is in secondary school he has been bullied since being there and now because hes hit out hes been excluded many times i have asked why hes been put in that situation in the first place i dont feel hhes getting the right help so how do i go about in talin talking to these teachers to make them hear what i am saying about my son

Comment by monica gregory — January 29, 2013 @ 7:06 pm
Whew! I needed the part about ruthlessness. Sometimes I feel as if the school is not willing to give my son the specialized training he needs, even though he has 1:1 funding. It seems to come from above the sped dept., though. This gives me courage, and with his meeting next week, timely courage. Thanks, Dave.

Comment by Deb Widders — January 29, 2013 @ 10:42 pm
Thank you so much for this information.

Comment by jt — January 29, 2013 @ 11:24 pm
I attended A conference in Greensboro NC sI attended A conference in Greensboro NC several years ago and someone gave an excellent talk on advocany for you child.
I had to meet with members of the school system shortly after that and the first thing I heard was they did not have the rescources to provide for my son. I tod them politely but firmly that that was thier problem and they needed to solve it. It worked.

Comment by .Jay — January 29, 2013 @ 11:42 pm
I attended A conference in Greensboro NC several years ago and someone gave an excellent talk on advocany for you childI I met with people fom my sons school system shortly after that and the first thing I heard was that they couldn’t provide services because they didn’t have the rescources. I informed them politely but firmly that that was their problem and I am sure they could figure out a way to solve it. They did.

Comment by .Jay — January 29, 2013 @ 11:54 pm
I have filed 6 complaints with the OCR. They have no jurisdiction over content, like whether your child should be provided appropriate silo jam functioning goals and accommodations, ONLY process issues. Content issues are to be handled through Due Process which is a failed system as it costs between $30,000-50,000 with a lawyer and then the district with their unlimited legal budget will get an I junction and appeal. If you go without a lawyer to Due Process, chances of winning are only 5%, same appeal problem. BTW, get a legal Advocate that the local autism society recommends and don’t bake any cookies, they will screw your kid over faster because they think you won’t fight. It is business, act like it is business because your child’s education depends on it.

Comment by Susie Edwards — January 30, 2013 @ 1:53 am
I have filed 6 complaints with the OCR. They have no jurisdiction over content, like whether your child should be provided appropriate social functioning goals and accommodations, ONLY process issues. Content issues are to be handled through Due Process which is a failed system as it costs between $30,000-50,000 with a lawyer and then the district with their unlimited legal budget will get an injunction and appeal. If you go without a lawyer to Due Process, chances of winning are only 5%, same appeal problem. BTW, get a legal Advocate that the local autism society recommends and don’t bake any cookies, they will screw your kid over faster because they think you won’t fight. It is business, act like it is business because your child’s education depends on it.

Comment by Susie Edwards — January 30, 2013 @ 1:56 am
Thanks is all I can say, these have been helpful, reassuraning that what we have researched and are doing at the moment is as good as we can be and just knowing that we are not the only people on the whole earth with a beautiful child who is extremely special, but have a hard time showing everyone else.

Comment by Melva Robbins — January 30, 2013 @ 2:12 am
Thanks a lot for such insightful thoughts as truly parents are at the taking end of the rough stick and hence help and co-operation are really required to sail during high and low tides with our kids

Comment by Zarina Shroff — January 30, 2013 @ 3:38 am
We live in England and have a 5 year old grandson. For about three years I have thought that there was something a little different about him, from non soscialising with other children, obsessions, hyperactivity and food problems. He is now at school, concinuing to demonstrate these traits plus many more but his parents do not seem to be concerned. He has recently been diagnosed with hypermobility, explaining his complete inability to write or draw. How can I make them see that with help he would be a happier child and his future could be brighter if he was understood and received understanding.

Comment by Judith Bowden — January 30, 2013 @ 8:12 am
You said, it Dave!!! I’m proud to be Ruthless for my son! I’m in the states, but we have similar laws in my state and I’ve gone to the Special Ed School Superintendant armed with print outs of the laws specifiying what my son’s accomodations were supposed to be, and what the school he was in at the time, was in violation of in order to have him promptly and curteously placed into the proper setting. Now he’s been doing great, and the Special Ed School’s Superintendant agreed with me that it was the right move! You definitely have to have your kid’s back, and my son know’s that I have his.

Comment by Leesah — January 30, 2013 @ 11:19 am
My son is allergic to chemicals, perfumes and other scents. How can I get my school district to stop letting them into his schools. The chemicals cause him to have extreme behavior problems that he gets punished for. The school says the environment in the school causes these problems and he needs to learn to cope with it or I should put him on the mind altering drugs.
If they can ban nuts from coming into the schools, why not chemicals that are harming all of us and causing my sons behavioral problems. It might actually help other kids who have similar problems.
I sent this message several times to different autism sites and have not received any answers. Maybe it is hopeless, I don’t know.

Comment by Theresa V. — January 30, 2013 @ 12:36 pm
This was an awesome article, applicable to any “single” parent of a disabled child, not limited to one of kids on the autism spectrum. I will be sharing this article, you can be sure. I am married and as you so simply put, when it comes to raising my challenging children, I may as well be on my own!!

Comment by Beth — January 30, 2013 @ 6:58 pm
I am a teacher with 17 year-old twins. My son has Asperger’s. All of the teachers in my district have bent over backwards for my son – even before he was diagnosed. I treat his teachers like I want to be treated as a teacher. I am proactive and talk with them before he gets into their classes. I also give them information and tips about what Asperger’s is and how to specifically deal with my son (ie. what has worked in the past, and what hasn’t). I also back the teachers if he is inappropriate or does not do his work. He has had a few teachers that he did not care for. I treated this as a life lesson: In life, you will have to deal with people you may not like. Make the best of it. Hope this helps.

Comment by Cindy — January 31, 2013 @ 9:05 am
good practical suggestions for parents!Office of the Civil Rights existing in USA I am sure will be of immense courage and power to parents and children with ASD. Unfortunately even basic amenities are not available for these children in the regular schools in Low Income countries.Any suggestions in such a situation?

Comment by Dr G V Ramana Rao — February 2, 2013 @ 5:59 am
.This is so true. I am a single parent, I have had alot of trouble with my son , the school have made him really ill.
It is very hard to get people to understand what makes my son tick, I have informed them what cxn be done and what cannot be done, but off course the school knows best. this caused my son to stop going altogether, I had to sort out a meeting , the education welfare officer attended, I was shocked to hear that she was there to fine me. Once she heard what was going on ,she decided not to fine me for my son not attending school. I am fighting all the time

Comment by Averil Siegertsz — February 3, 2013 @ 5:15 pm
I AM SO GRATEFUL O
YOU have been of help,Single mom did not know where to turn
I would love to converse with you.I have been extremely sick
This winter and
things are out of control.I will look forward to your writing s
I am filled with fear and rely on your expertise.

Comment by Michele reimer — February 5, 2013 @ 1:37 am
My son was in the catholic system with EA assistance until grade 6 we had many struggles trying to get what my son needed also trying to get them to truly understand a child with Aspergers but that was very difficult. My son is in a treatment program and for the first time he’s very happy, confident, the support he is getting is amazing to us, things at home are better less behaviors. My personal feeling about the school system at least the ones we have dealt with really aren’t ready for children like my son they still don’t fully understand how a child with Aspergers sees and deals with world. The program he’s in now would be considered more of a segregated program with some integration, my son has been there 1.5 years and the difference in him is AWESOME before he would talk and act on thoughts of suicide and that is truly heart breaking as a parent. In this new program he doesn’t talk about suicide anymore. I just want the help my son deserve I want him to be confident, happy and look forward to his future.

Comment by Laurie — February 15, 2013 @ 9:28 am