For real?

I have been looking at posted positions at various companies in the area. I have also been looking online for career advice and stumbled upon an article discussing inappropriate interview questions.

First came this quote:

"New college grads don't realize they [potential employers] are not allowed to ask anything about your health. Even if you walk in limping or on crutches," says Fisher. That extends into alcoholism as well. "You could walk into an interview drunk, talk about how you're always drunk, and legally they cannot use that information against you."

That's it all you new grads - go out there and tip a few before your next interview. Then this next quote nearly made wet myself:

Fisher points out that if you get asked about kids -- and if you do, indeed, have children -- be sure to mention that parenthood has not interfered with your career.

In other words - pretend you are a rug and lie. OK you mothers out there who feel that children don't impact your careers - who are you, what are you children like and what do you do for a living? I am not criticizing working moms - no way! I just think that people want us to say that raising kids is no sweat, and that is false. The only way this could possibly be true is with a lot of support, and that means a lot of money. So perhaps for those with a lot of money and support, this is true. Funny. I just don't seem to meet many of these women. And I am undoubtedly not one of these women.

I did not lose my job because of my children. I lost my job because of my priorities. Once again, I am concerned that when (notice I didn't say if because I am feeling hopeful) my kids read this blog one day, I never want my kids to feel bad that my career went down the toilet because of them. It went down because of me! I am now convinced that I was the world's lousiest engineer. OK - not the lousiest, but let's just say my heart was never in it the way it should have been. I know I never felt inspired like I should have been, although I am coming to realize this might have been the industries I worked in more than the job category. In my children, I find great inspiration. I am using every bit of education that I worked on, every work experience to deal with this crazy situation we are facing. I would almost say that I love my "new job", with the exception that I hate that Zach has some of the issues he has. But my heart is in it, 100%. It's hard, the pay stinks and I want to quit on some days, but I never will.

I have some concerns about Zach's progress. I worry that preschool is not an appropriate place for him - he seems to lack so many of the prerequisite social skills that are needed to really get anything out of it. Sometimes I feel that he is in daycare, not a school setting. The therapists that work there are top notch. I am concerned that he doesn't get the one on one and intensity that will make a difference. I am not sure if he is getting what he needs.

I hate looking at my failures. And the fact that I left his last CPSE meeting in status quo makes me angry with myself. I suck at confrontation. I suck at thinking on my feet. And those skills are the most important during those meetings. uugghhh

Zach loves going on the swings. After the last 2 years, feeling that we might have made a foolish investment in the playset we bought, I can now say it is a joy to watch him run to it every break he gets. This good weather we have been having is helping to make more opportunities for him to get out there. He loves the sand box. He likes the slip-n-slide. He picks up sticks, he plays with dirt, he gets in my garden.

Zach's language skills are still lagging very far behind. I am realizing that his receptive language (what he understands) is much better than his expressive. It's easy for a novice like myself to misunderstand that these two are separate, and should be evaluated separately. I have been trying to work on goals with him, and without the credentials or experience of an SLP or special education teacher, with the only tools that I have: my educated and trainable brain, my interest in technology, my engineering troubleshooting skills, and most importantly my never ending love which inspires me to stay the course.

I am happy to announce that Zach's alphabet knowledge is right on. I witnessed a game tell him to pick the letter that made the "teh" sound and watched him search the letters of the alphabet until he found the 'T'. He managed to do this for several letters. As we sat on the orthopedist office, he pointed to the Waiting Room D sign and said "D". While in school playing at the magnetic letters center, he grabbed a letter showed the aid at the center and said "C" proudly. He recognizes capital letters, he recognizes lower case letters. He can say the phonetic pronunciation of a letter when prompted with a: "the [name of letter] says" _____. I know this may seem out of order in that if he doesn't even understand what a word is, why do I have him learning letters? I saw a sparkle in his eye when he learned his letters. When he spelled out a word on his one game the other day - he looked at me like "Holy sh*t - this means something doesn't it? " When he spelled out some words on his one game - he stimmed like crazy. Normally, stimming would be something we try to avoid - but I know that when Zach feels pleasure/happiness/excitement this is what happens. How many kids would feel this way about letter recognition and letter usage if they didn't know it meant something?

We are working on some stuff with him. I am very excited. He is such a joy to me, even though he is such a mystery too. When I saw him seeking my eye contact out when he spelled this word on his new game, I felt a pleasure like I haven't in such a long time. It's not a wish, it's not hope, it's not the possibility. This is real.

Angels in various forms

In a book I recently reviewed about faith and specials needs, I was pleasantly surprised to read about a Muslim who helped the author and her family. I believe I commented about this in the previous post when I reviewed the book. While I am a Christian, and this story is told from the perspective of a Christian, I was happy to see that the book tells of an angel sent to the family in Muslim form. We too have had such a Muslim presence in our lives.

A family who knew little of our situation made a lovely gesture to us by spending time with Sophia. I often worry that I am not always able to attend to Sophia as I wish due to the constant doctor and therapy appointments, and that she is lacking the attention she deserves. I had always assumed that it would be my family who would come to her rescue, but things just don't always work out the way you expect them to. This family recognized that I was busy, with what? They didn't know at first.

They have a daughter in Sophia's class. They get Sophia off the bus for me, feed her, and keep her occupied. This one day every couple of weeks offering has meant the world to me. At first I was nervous, they did not know me, they did not understand what we were going through. I picked up Sophia after an initial playdate and felt the need to explain why I appeared to be always on the go and was unable to reciprocate. The mother insisted there was no need for explanation, she could see I needed help, and she was glad for a friend for her own daughter. What a lesson I learned that day.

I told her of Zach's diagnosis anyway. Then this gracious lady told me that her husband was a neurologist and to use him as a resource if I wished. When I think about this family, I often think of the lack of judgment we faced: they never asked what was going on, they just offered to help. They are a perfect mix of compassion and humility.

Now this woman was not perfect, she actually made comments to me that "he looked fine" and that he was like a cousin's son who was just a late bloomer. I knew she didn't intend any ill will when she made these comments. I let them pass.

One day, when I went to pick up Sophia after Zach's therapy, she invited us in. There sat her husband. She made me a plate of lovely Egyptian food, and her husband and I, sat eating our meal, discussing Zach and autism. Meanwhile she attended to Zach in the adjacent room, listening to our conversation.

His specialty is stroke care, so he could not offer specific medical opinions, but he gave us an opinion on sticking with it and keeping Zach engaged. He had a fellowship in Pittsburgh, where they have a terrific children's hospital and was able to see a little bit about autism care. One other interesting note he offered me was that the neurologist we went to see, prestigious as her credentials and background is, was not a pediatric neurologist. This certainly made me view her advice and opinions differently. (It also irked me that my pediatrician sent us to someone who did not specialize in pediatrics, lets alone autism.) Two things stand out from our visits to her: 1) her comment that Zach's brainwaves (as recorded in his two EEGs) were "mature", that of a child 2 or 3 years older, and that is indicative of a high IQ. 2) The other comment, was not to pursue any intense intervention with him, that he was likely a weird little math genius. I noticed that none of this made it's way into the official report. I often think about recording my visits to the various doctors we see - just to capture things I think no one would believe when I write them.

A few weeks later, this mother approached me after swim lessons, and once again offered to take Sophia, and added that she would take Zach too, so that I could have some time to myself. She went on to say that she knew she didn't understand all that we were going through, but to count on her if we needed her.

Our experience has taught me so much. Unfortunately, some of it, a self awareness that I was not the most understanding person myself. I am shameful of my past pretense of compassion and sympathy.

This woman also taught me much about myself and who I would like to be. Much like me, she is an educated SAHM (stay at home Mom) . This woman has no complaints about her nomadic lifestyle (just part of being a doctor's wife she says) and lack of career, nor of the type of work she does (cooking, cleaning, tending to children). Sometimes this SAHM thing does erode a little bit of my sense of self - so much of my identity was weighted upon my career. I have this idea of the person I want to be; I value being useful, respected, and appreciated very much. My career provided me with value for these things. I will not be given paychecks or awards for my work. When I am asked, as I frequently am, what I do for a living, I will say SAHM, and see that the doctors and other professionals do not take me as seriously as when I was a career gal with a masters degree. I am not sure if I will ever even get that appreciation since I am really working for myself, and have to learn to appreciate myself! I can still pursue my values, and now with a sense of humility, since not many people aspire to be in my shoes.

Zach's diagnosis has come with a plethora of life experiences for us that go beyond the autism itself. I am fascinated by the variations of people; that my expectations of people have been both unmet, leaving me disappointed and hurt, and surpassed, where I am amazed at the generosity and thoughtfulness of strangers.

This family has meant a lot to me, and unfortunately given me sad news that they will be moving soon, the doctor is pursuing his next fellowship, likely in South Carolina. But I am grateful for their presence, albeit short, in our lives.

What is that boy up to?

Changes. One thing you can count on in life, right? Change. The other thing to expect in life? The unexpected.

Zach is definitely been going through something, although I'll be darned into thinking I can describe it with any clarity. I try to think of him clinically - how many words is he able to say? how often are they spontaneous? any inappropriate behaviors? does he respond to requests? does he imitate behavior? does he initiate social contact? does he have repetitive motor movements? does he perseverate on a single word or activity? what are his motor skills like? how has his eye contact been? These things all whirl around me head at any given moment.

I feel that we are still under a great deal of stress, but, like many things that require more efforts, we are getting used to the level of difficulty.

Zach's speech has become more clear. He has uttered some new words and some (perhaps even most) of it can be credited to the tubes in his ears. What words you ask? Well "booger" and "bacon". I can assure you that we have not officially worked on those in any therapeutic setting.
He is also trying real hard to sing "Twinkle Twinkle Little Star". I love that he will be playing by himself and sing this to himself. Very sweet.

Zach is loving the warmer weather. LOL Yes, I have to laugh at this, since it is May 9 (Mother's Day 2010) and it snowed for over 5 hours here in Syracuse today. (Once again, my procrastination has paid off, and my tomatoes have been spared as they sit in my garage unplanted.) He really loves his playset, climbing the rockwall, sliding down the slide, and swinging, and swinging, and swinging.

Sophia does not like to swing. Never has. I remember getting a baby swing as a shower gift, and after going through year 1 of Sophia's life, thinking that swings were a total waste of $$$. Then along came Monsieur Zachary, and it's worth became a lot more valuable. Zach has taken to the swing very well, and holds on independently like a trooper (has since he was quite young). I am having a helluva time trying to show him how to pump, so for now, I just push him. I actually will grab the swing while he is up, and make him say "push" for me to give him an extra push and let him continue on. As for mechanical mobile devices, there is interest but either not an understanding of action/reaction or really bad motor planning issues. He refuses to pedal or steer his tricycle at home, although reports from school indicate he has done it, to some extent there. *sigh* As for the scooter which I know he was interested in after watching the neighbors daughter do it, it makes me laugh every time I see him get on it. I bought him a scooter with a wider base (thinking it would be easier to stabilize and balance on.) Zach will stand on it with both feet holding the handles appearing to wait for it to move on it's own, as if it were a Segway.

He is interested in balls, but has not a clue what sports are, nor can he really play a game of catch. He loves water, and I am unable to bring him to Sophia's swimming lessons, since he wines and tantrum to jump in the pool the whole time we are there. I need to get him lessons or therapy or something! Of course, I cringe at thinking about trying to get ear plugs into those little ears without a fight.

He is eating well, as usual, broccoli, carrots, corn, peas, strawberries, raspberries, melon, cucumbers, apples, bananas, chicken nuggets, turkey, beef and chicken hot dogs (organic, no nitrite/nitrate varieties) , bacon, pan fried ham, rice, mashed potatoes and french fries, gluten free pastas (I really like the quinoa), coconut/almond/rice milk. We make homemade breads and baked goods for him (to die for chocolate chip peanut butter cookies and very yummy waffles/pancakes) and he eats a host of gluten free casein free snacks such as pretzels, potato chips, fruit snacks, Tings, faux graham crackers, crackers. I think that reducing the amount of grains/carbs he is getting really helps to create a healthier diet for him - he is so much more interested in fruits and veggies than so many other kids, and especially his sister Sophia. He eats a variety, but we have noticed that he is still set in his ways - only eating the store bought GFCF chicken nuggets, and not my homemade for instance. He won't eat my meatballs (Sophia gives them a thumbs up.) Steve and I are short order cooks around here.

We are still not even close to the potty training. It exhausts me to just think about it. He attempts other self care activities, including brushing his teeth and flossing, taking his socks off and attempting to put them on, unzippering and zippering various items of clothing, but he has a way to go in terms of dressing himself. I am always amazed during evaluations of what they consider to be normal for dressing - Sophia still cannot do buttons or snaps!

Zach is doing well with letter recognition and the associated phonetics. How he is managing to learn letter recognition prior to him knowing how to speak fluently just makes me shake my head. I know this gestalt thing is likely the culprit, but it still messes with my mind to see him accomplish some things that he does in the order he does. It's a great reminder for me to never give up on him when it appears he doesn't get it.

Socially, he still prefers adults to other children, with the exception of small groups of NT boys around Sophia's age. I only wish we had more access to boys for him to hang with. Most of the typical kids in Zach's classroom are girls. He seems to really like to watch them engaged in sports. I still find it funny that it is apparent every once in awhile, for his preference to males over females. I suppose if I had all these daunting chicks hovering over me all the time, I would need a little testosterone presence in my life too.

I would never had guessed that a kid on the spectrum could smile as much as Zach does, nor to show so much affection to his mother. I have to tell you that I feel he loves me and is happy as much as I do Sophia - actually, I might even know it more for him! Sophia has become rigid and occasionally mean to me. Almost like a young teenager. She tells me what to do, rather than ask, and fights me on just about every request I make of her. I have had it out with her a few times the last month. I also know that she is currently really stressed out.

Sophia has begun to bite her finger nails. Might not sound like too big of a deal. But it gets worse. She is chewing on everything, like a teething toddler. Mind you, she is losing teeth and getting adult teeth (she has lost 3, and 2 adult teeth have come in). I am wondering if this is creating a lot of sensory issues for her. I have given her chewy tubes, no interest, and chewing gum, she swallowed it. I have found a cool whip container chewed on, a cup, a few boxes we had, towels around the house, and of course those nails. When I ask her if she is OK - she says yes. I question her specifically, and nothing stands out, with the exception of a falling out with her previously known best friend. Heather has begun to make remarks to Sophia like "purple is boring", trite to you and me, but basically denigrating my daughter's 5 year old identity. SOphia loves purple and to a 5 year old girl, such a thing as a color preference is such a huge part of their world. Heather also makes fun of Sophia's other choices and wants to dominate their playtime together. Sophia is often left in a ball of tears. I originally thought to let them work it out between the two of them, I am sure Sophia is no angel, and likely contributing to their discord too. She needs to learn social skills. But this chewing thing, and the stress the family is under has me rethinking that tune. I know a little bit about what Sophia is like - I see a bit of myself in her, for better or worse. I know that she is a pretty sensitive kid who lacks social understanding. That was (is?) me. It breaks my heart to think that she will likely have her heart broken a few times, long before any boy comes around. I would become very attached to friends, but was not good at keeping them around. My interests were rigid and narrow, my academic interests were a turn off. And my ability to relate, understand what was being said to me, especially in social circumstances, lacks such depth. Furthermore, I have a hard time acknowledging a person's thoughts and feelings without getting totally wrapped up in my own emotions which is a huge turn off to people. I hope she can find her way better than I did.

For now, there is ballet, swimming, soccer starts next week, the occasional play date, the never ending birthday parties ( I am convinced that September/October is peak mating season in Camillus) and all the day to day things like homework, learning site words, riding our bike around the block, reading books, etc.

I was glad to hear at the Mother's Day family round table today that a sibling of mine attended some sort of autism awareness training at her place of employment. She recalled learning that many children on the spectrum do not have mental retardation and some other facts. She said a few times to me "It was like you said", which left me wondering "Did you think I was making this stuff up?" LOL Of course, I am grateful that she is trying. My other sibling passed along a local family life publication from this month in which the whole edition was concentrated on special needs. She also passed a telephone number for a nurse at the hospital where she works who has an 8 year old with autism and was a parent advocate at one time. I appreciate the efforts of both of my siblings to try and understand what we are going through. I didn't receive any tangible gifts for mother's day, but these were more significant to me anyhow.

The house is a mess, two of my tomato plants are dead (damn snow), tomorrow we are off to Rochester to get Zach evaluated, again, and life just keeps on moving forward. Oh yeah - in other big news, received a phone call a few weeks ago from my dear MIL (mother-in-law) and she sold her house (finally) in NC. She is moving up here in a few weeks! That's sure to change the dynamics around here. Here's hoping!

Our current motto: Expect change, expect taxes, and expect the unexpected.

It's just not me

I walked a mile with Pleasure,
She chattered all the way;
But left me none the wiser,
For all she had to say.

I walked a mile with Sorrow
And ne'er a word said she;
But, oh, the things I learned from her
When Sorrow walked with me!
Robert Browning Hamilton

Throughout April, I periodically posted on Facebook, facts regarding autism for Autism Awareness Month. Last week was the end of April. And I was foolish.  I decided to try and really catch people's attention and be a little provocative and wrote something "catchy".  My previous posts had included the definition of autism, prevalence rates, treatment efficacy.  I was going to write something about increasing autism diagnosis rates.  But I scratched that.   (*Idiot*, said to myself.)

I have recently decided that as strong as I appear to some, I am incredibly wimpy, and have been struggling how to deal with my deficiencies, in particular, in dealing with the school district regarding Zach's services.  I feel very alone in this fight, and when I was pushed, I fell down.  And I am still struggling to get up.  

I am so impressed with some of the other mother's I read about and witness.  They probably take for granted their strength.  I do not.  There was a post that someone put on facebook quoting something about standing up for what you believe in, and that a person with only friends and no enemies has never stood up for what they believe in.  I cannot even remember the quote, which makes this story all the more pathetic. 

Anyhow, in wishing to be someone that I am not, I posted a provocative post as my last installment for Autism Awareness 2010:

Ever see that Mom with that kid tantruming in the grocery store and you think: "Why can't she control that brat?" Fluorescent lights, loud sounds, strange smells; a child on the spectrum? Quit staring. Better yet, go ask that Mom if she could use a hand. Your choice, but stop being ignorant about autism.

Well, a small firestorm ensued.  People were upset, including me.  And I lit the match.   I was not happy with the way I felt about this.  I realized that this just is not my style.  I was not happy with the results.  It is not who I am.  Wimp.

In the end, I guess I am not the in your face sort of person that others are.  I was happy that some mothers spoke up and stated that in their pre-autism and pre-parenting days they too were judgmental.  Indeed I was too!  I am very lucky to have had a friend going through much of this before we did, and I read with open eyes her experiences in her own blog.  I scanned much of it, not understanding the technical stuff, only to reread much of it in with a closer eye when we began our own journey.

Our journey is still our journey.  Just as each child on the spectrum is an individual with their own symptoms, our family is unique too, like any other family.

My heart still aches for our situation.  I wonder if I am still in grief.  I wish I was more surefooted about what we are doing.  I wish I didn't feel like the system has taken advantage of us in our grief and our own ignorance on how things work.   

At so many steps in our journey, I have had various professionals tell me how smart I am. Why do they tell me this?  Because I have read a few books, read a few articles on the Internet, and talked to some others who have been through this before me? I feel patronized.  I don't want to feel good about myself, I want to feel that the right decisions are being made for Zach and that he is getting what he needs. 

We are going to Strong Hospital in Rochester to have Zach evaluated.  I prefer to go out of the area for these evaluations.  I have serious concerns that intentionally or not, local professionals have concerns more than my son when they give recommendations.  First off, they may limit their recommendations to the local resources that are available to the child.   And then there is the matter of their reputation:  if they give recommendations for needing lots of resources, school districts and local government agencies are likely to squawk at using them.  I just feel that going out of the area is more of an independent evaluation of what is needed. 

Mother's Day is coming around the bend.  No one could love Zach or Sophia more than I do, and I do try to take care of them best I know how.  For this, I hope I can be deemed a good mother.   I am still working on the advocacy part.