I owe an apology to my fellow bloggers. I missed my blog day last week. At first, it was because I had completely lost track of the days due to the holiday pressures. But then, it became broader “personal” issues. And, that is the time I should have most embraced writing a blog. When we set up the idea for this website, our intention was to speak on topics of relevance to women. The idea was to be as genuine as possible and talk about our real problems. And, we do. We have topics like cleft palates and autism. But, I have not been completely transparent in my issues. You see, my marriage is a wreck. Nobody who knows me would realize that. I don’t talk about it. I think it is part of the status quo syndrome. If I acknowledge the issue, I will need to do something about it. Plus, I think when I write about this, I just sound whiny. I actually wrote a blog on this several months ago. It has never been published because I didn’t really want to acknowledge how bad things are.
I will try to give you a flavor of my marriage. Please realize that this is only a sampling. The reality is more a death by a thousand small cuts. But, that is really too much to rehash.
My husband thinks he is passive. And, I have been reflecting upon that. I wonder, if he is so passive, then why is everything always done his way? I felt certain there was more to the story, so I started looking for stories like mine online. This is part of the reason why I am sharing now. These stories (while depressing) validate that I am not alone. My story is not unique. There are others who have lived through similar relationships. As I reviewed these stories, I realized that my husband is not passive, rather passive aggressive.
Every event is a battle. I never realized it before, but he is always jockeying for the most advantageous position. He is always setting up his “battle field”. It appears that he takes pleasure in making me angry. Because when I get angry, he goes on attack mode. And, I think attack mode makes him feel powerful. It makes me feel sore. Like physical abuse without any outward signs. I only ever say 1 sentence before he attacks. And, I shut down.
Let me give you an example of how he sets me up… he is working this week. That means he works from 9 pm to 9 am every day. I am off this week (holiday break). We have 3 kids. My daughters have sports lessons. I intentionally scheduled their lessons at 10 am so that I would not have to drag my 5 year old son with me every day. And, there are some things that I would like to do that I really can’t do when dragging kids along (think haircut). About a month ago, his work said they wanted him to do some training. It was scheduled for his week off. He told me this, and that he moved the training to his work week. He did not tell me which day, nor week. So, yesterday, he didn’t come home until after 3. I know he wanted me to question where he had been. But, I had been reading about passive aggressive behavior and knew I was being set up, so I didn’t say a word. But, I could tell that he was looking for an argument, so I just kept going to other rooms when he came near. Eventually, he gave up and went to bed. But, because I didn’t bite on that, he didn’t come home today until 11:30. Once again, knowing that I am being set up gives me some insight, so I didn’t question it at all.
Here are a couple examples of the more egregious behavior. Last spring (March), we were talking with my son’s counselor. I forget how the topic came up, but I ended up explaining to her how my husband had (2 years previously) not given me any gift for my birthday and about how hurtful that was to me. My birthday was in May. Guess what he gave me this year? He sent me a text in the morning that said “Happy Birthday”. That was the only acknowledgment of my birthday from him. There was no dinner, cake, present. Nothing. I do have to say that my fellow blogger Queue Murphy had arranged a luncheon to celebrate my birthday. I’m sure she had no idea the depth of my appreciation for that. It gave me something positive to hold on to that night. I didn’t say anything about it at the time. I was so hurt, I couldn’t come up with the words. I finally brought it up months later. And, he very aggressively replied, “I gave you a Mother’s Day gift, that counts for both.” I told him in no uncertain terms that I never wanted any gifts from him.. EVER. And, that I would also not give him a gift. It was wonderful at Sweetest Day. No gifts – expectations fulfilled. But, he bought gifts for our anniversary in November. I refused to accept them. I don’t want to be lulled into having any expectations. But, at Christmas, he took our son shopping to buy gifts for me. And, I love the gifts Brock picked out. He gave me a Picachu pillow and Candyland (so we could play it together). But, my husband also wrapped the gifts that he had bought for our anniversary. And, he wanted me to know they were the same gifts…. he wrapped over the existing gift wrapping. When I got to that, I looked up at him. And, he gave me the most malicious look I have ever seen. It seems to say, you will do what I want whether you like it or not… I am the boss of you. And, the gifts were very “girly”. Perfume and facial products. If you knew me, you would know that I would never use these kinds of things. I asked him later why he picked these items for me. He answered that his female co-workers suggested them. This told me that he didn’t get them for me, he got them to show the people at work what a caring spouse he is.
Here is another example…. he is diabetic. He was having problems regulating his blood sugar (it kept climbing). He has a pump, and the reality is that he probably didn’t have the line in properly. I told him to go to Urgent Care. I went to work. He went to Urgent Care, and they took him to the hospital. He called me from the hospital. I immediately found my boss to tell him why I was leaving, then I went to the hospital. A couple months later, I was not feeling well. I left the kids with him and went to Urgent Care. Urgent Care thought it was my gallbladder and sent me to the ER. I called him to tell him that I was going to the hospital. This was morning. I finally called my brother to go wait with the kids and tell him to go to the hospital (basically shaming him into coming). He got there just before I had to sign all of the paperwork to get operated on (around 10:30 pm). And, when I was finally released from the hospital a couple of day later, I had to wait to leave. Because he wasn’t there to pick me up. Even though I told him the time I was being released.
So, now you have a flavor of my story. I’m at a point now where I realize something has to change. Perhaps it is because it is New Year’s Eve and a time for reflection. Perhaps, it has just built to the point where I cannot bury my head in the sand anymore. But, what to do is the real question. Divorce is the easy answer… for me. But, as you know, my son has emotional issues. So, I’m not sure how this will affect him. I’m looking for any solutions. Comments?
A friend, the single mother of an autistic son, posted the Big Reveal of her son’s birthday present on Facebook. There was a t-shirt, there was the themed toy… They were going to Disney! And when the camera panned to his face, it was a determined ‘oh no!’ shaking of his head. Change was in the air, and it wasn’t going to come easily.
Those reading this blog who have differently-abled children, can well relate to this. Who among you has given the special child in your life a trip or experience that most children would delight in, only to have to coax, encourage and push the child into that activity? And then, once there, who has had their hearts sink as you watch him or her fall apart or withdrew into their own worlds?
Happily, in this case, the trip went well due to some upfront planning. My friend, active in her local autism chapter, had contacted the Mass Port office at Logan Airport, who worked with her and JetBlue to schedule a dry run of what would happen on flight day. Her family showed up at a time the airport wasn’t crowded, and lined up to pretend to go through the check in process. They were escorted through security (and were greeted by very friendly TSA agents), and then they went to a gate where an empty plane was waiting. Her son was shown how to find his seat, how to buckle in, and was told what would happen when the plane took off. He even got to see the cockpit. It was a fantastic example of advocacy, autism awareness and community support can rally around a family.
And even better, for the next few days leading up to the big trip, her son was excited, not frightened. Once at Disney, the entire family, son included, had a magical time.
Ten years ago, a friend with an autistic daughter was relating the story of their Disney trip. My friend was a huge advocate and had worked ahead of time to secure the special disabilities pass to bypass lines. However, once there, as she used her pass, she and her daughter received dirty looks and heard many a muttering from lots of adults who was waiting in the long lines. When her daughter had her meltdowns, which was frequently, she got even more looks and overheard lots of comments about ‘parents who can’t control their kids.’ My friend, being a well-educated New Yorker, promptly turned around and calmly told the annoyed adults that her daughter was autistic, and she was terribly sorry if her disability was ruining their day. Once back at home, she immediately printed up small cards that she carried going forward, that stated that her daughter had autism and could not control herself in certain situations. She handed them out frequently: at the supermarket, at child-friendly events, at the county fair.
Some disabilities are obvious. Others are not. For parents of kids on the autism spectrum, life can be tough. Their beautiful children don’t have wheelchairs, hearing aids, crutches, Tourette’s. Their disability is largely hidden at first glance. They cling a little closer, rock a little, melt down easily. And their parents are often judged, much as my friend was, as bad or indifferent mothers and fathers who spoil or can’t control their child.
In May 2013, the New York Post broke a story about wealthy Manhattan moms who were ‘renting’ a disabled child to escort their families on their perfect trips to Disney. They too, could cut the line! What a bright, shiny future their flawless families have. What wonderful lessons in humanity that they are teaching their perfect children. When interviewed, one mother said there was absolutely nothing wrong with this; they were giving employment to the handicapped. As the New York Post wrote, they are the ‘1 percenters who are 100 percent despicable.’
We all know someone who has a differently-abled child. Every child is special, and every child is a gift… but unlike the wealthy Manhattanites, we know that having children with special needs, is not a joyride around Disney.
Autism awareness has come a long way, but there is still room for improvements. I’m heartened by stories of community support, such as was found at Logan Airport last month, and am looking forward to a future where compassion, not judgment, rules.
I helped at Brock’s Halloween party at his school last week. The specialist was telling me that she didn’t believe he was autistic, that she saw no evidence of it. And, as a parent, I want to hear these words. I want to believe they are true. But, I know they aren’t. She sees the evidence. But, she also sees the loving side of Brock and thinks this means he is not autistic.
Here’s the one thing I know. Autism is a big spectrum. And, no two children are the same. Brock has a great capacity for love. He is now having positive friendships and interactions. These appear to be normalizing. However, he has tantrums that are autistic. And, his specialist sees these. She just doesn’t understand their difference from a normal tantrum.
Let me describe a normal tantrum. I am familiar with these, I have two other children. They wanted something. If they didn’t get it, they threw a fit. I let them. After a while, they learned that their fit did not get them what they wanted. They now beg, or argue their case about why they should receive what they want. But, they don’t throw a temper tantrum.
Brock is different. Most times, we cannot tell what started the tantrum. There isn’t something he wanted. It could be a loud noise or a large crowd (both of which are triggers). But often, we cannot tell what started it. And, he isn’t good at articulating this, either. But, once it starts, he cannot regain control. It is like a switch is flipped, and he is powerless to stop. With most of these, he just goes until he runs out of energy. He isn’t looking for some object. And, even if he was, giving it to him would not stop the fit. I have learned to not give him anything during his tantrum. Because even if it is his favorite toy, iPad, candy, he is going to throw it. He cannot help it.
I have been able to talk him out of fits. I have even done it over the phone. I try to reconnect the rational part of his brain. I will bombard him with choices that he likes. At first, he will emphatically say “no” to everything offered. But, as he regains control, his “no” becomes less forceful…. Do you want to go outside to play? Do you want to watch Peep Wide World? Do you want to play with the dog? Do you want ice cream? Eventually, he regains control and picks one of the options that was offered. “Yes, I want to go outside.” And, the episode ends.
I also do better than most because I see his body tensing and redirect before it gets out of control. Large crowds are unnerving to him. He needs space to regroup. Loud noises are also a problem. We go to a County Fair parade every year. I try to leave before the fire trucks go by. They all think it is great to put on their sirens for such a cute little boy. The problem is, their sirens are really loud. They bother me, and I don’t have sensitivities. But, to Brock, they are unbearable.
I don’t know if these tantrums are a forever thing. Maybe he will learn techniques to help him keep control. I hope so. But in the meantime, I will do the best I can to teach him calming techniques and to remove him when I have the chance.
As we sit in the purgatory between insurance approval and wait list for further testing, life continues. Today was not a grand day for my son. I was at work when I got the call. He was in the middle of a melt down. It was so severe that they could not get him on the bus to take him from daycare to school.
He has had several adjustment issues due to the new school schedule. His doctor was adamant that he needed to be placed in a mainstream class. I approve of this as his IQ is high. So, he is in kindergarten, and the days are long. Which means he gets tired.
I'm not sure what exactly set him off this morning. But, I doubt it took much. You can see the anxiety rising off of him lately. I try to make sure that I have him laugh every morning. I think that if I can get him to laugh, he will be better positioned to greet the day. He did laugh today. But, apparently that did not help.
The Director of the daycare called me. She was trying to help (enabling him to hear my voice). But, he thought he would be in trouble, so became even more frantic. When he locks up, it is like his mind cannot process normal thoughts. He becomes irrational. If you try to focus on the issue/what occurred, he will clamp up tighter. I asked the Director to put me on speaker phone, and I calmly set about talking him back to normality (at least to where his brain could think rationally again). I started by telling him to put his arms around himself to give himself a hug from me. His answer: No. I asked him if he wanted me to blow him a kiss. No. I asked if he wanted to snuggle me later. No (but a little less forceful). I was starting to make headway. Did he want to help me make dinner later. Uggg. At least not No. Eventually, he could talk with me. My job was done. And, I did it over the phone. This is a big accomplishment. But, I will not always be available to calm him. I need him to learn self-calming techniques. Hopefully, that starts soon.
He went on to school. And, I expected a bad day. But, he was able to reset and have a decent day. Not always perfect, he didn't always follow the rules, but he tried. And for someone (even without the "A" word), isn't that all I can ask?
Today, we finally had the appointment at the local University. They spent hours evaluating my son. And, they still need time to process the testing. But, the Psychiatrist was preparing us for the "A" word. Now, I hear the "A" Word a lot. Many of my friends have autistic kids. But, my son doesn't behave like they do. 99% of the time, he acts just like everyone else.... a smart, happy (perhaps intense) kid. But that other 1%....
It isn't definite. Just preparations. But, hearing the "A" word associated with my precious little man is hard. I don't want him boxed by society's perception of autism. I don't want people to think of him differently... to this of him as lesser. He is so special... my little man who snuggles me, who challenges me with hard to answer (sometimes unanswerable) questions, who is beautiful and bright and wonderful. I don't want his future defined by what others think he is capable of.
Right now, I don't know what the future holds. I don't know the final diagnosis. I just know that I would do anything to help him have a "normal" life.
My little guy was around 3 when there were the first signs of trouble. I chalked it up to his daycare He used to come home with unexplained bruises and bite marks. The teachers told me he was aggressive, and I worried that he was learning from other kids. We switched daycares. The new one was more expensive, but it was supposed to be one of the best. He had trouble transitioning. He was aggressive compared to the other kids. And, certain triggers would set him off... loud noises, too many people. We were very fortunate to have a teacher who was willing and qualified to work with us. We came up with strategies: stress ball during circle time, hugs from the teacher, more pleasing sounds. And, he improved drastically But, the school also suggested two things: counseling and being evaluated by the school system to see if he qualified for special programs.
The counseling was a bust. The counselor would talk to him one on one but never told us what she did or what she was trying to accomplish. We were never left with follow up actions to reinforce or even a game plan in general. After a few sessions like this, I decided that this was not the relationship he needed. I researched the best programs, and the best program is at the local University Hospital. We inquired about evaluations for him. Their waiting list is months long. Even getting on the waiting list is challenging. After having his primary care physician call, we were able to make the list.
Concurrently, we had him evaluated by the school system. They evaluated him and said he had "social issues". That meant two things: he qualified for a 1/2 day program within the local school system, and he would have to change daycares. The daycare he attended was not in the district. For him to receive busing to and from daycare, it had to be located in the school system.
The first new daycare was awful. We explained the situation to them, and they said they were qualified to handle it. But 6 weeks (and 4 different teachers later), we moved again. High turnover is a sign of real problems at a daycare. These teachers were not qualified nor willing to help.
We moved to a national chain. Once again, we explained the situation. And, it has been a positive experience.
He enjoyed the school's program. But, he is going in to kindergarten shortly, so we pushed to have him continue receiving special treatment. He will be in a mainstream classroom, but with resource support. He will not attend the elementary school that he would naturally attend because we deemed a different school has better support for his needs. I am happy to have him in this program and look forward to what the year brings.
Frenzied Femme is a workaholic mother of 3. She has reluctantly conceded membership in middle age, however is not yet a member of AARP. In her spare time, she feebly tries to maintain the house.
By: Queue Murphy
The non-disabled residents of condominiums in a city named Clawson, have a mantra – ‘This is not a disability facility.’ They have also been very vocal in stating this to their disabled and elderly residents. Twenty-eight year old JW has a debilitating disease that has put him in a wheelchair for the last 2 years. His mother, who is a dear friend of mine, has struggled to get the condo association to accommodate he and other disabled senior citizens in the complex with ramps, railings and pool access. The board continues to throw up association rules as to why they cannot accommodate these residents – mainly - it will lower the property value.
After continued pleas by his parents, one resident built a temporary wooden ramp so that JW could get to the parking lot so he could drive to his job in his specially made vehicle – but it stopped there. JW’s mother continues to push for this access so JW can have a life beyond his condominium walls, including the ability to get to his job at Walmart, where he has been a valued, hard-worked employee for the last 3 years.
Not only are the Condominiums homeowners association despicable, but they are also breaking Federal laws. This ignorance and total disregard for other human beings, is not uncommon in many condominium and apartment complexes throughout the US. Many turn a blind eye to what they are required to do, and many disabled people suffer because of this. JW and others do not deserve this. Let’s send out a message to these condo associations. Tell them we will not stand for their disregard of Federal laws and the disabled. Their civil rights are being violated! Let’s make public all associations who do not value the disabled and elderly by publishing their names in blogs and on Facebook as well as reporting them to the following state agencies: Fair Housing Centers, Protection and Advocacy Services, Civil Rights Departments. I know I will!