Thursday, July 17, 2014
A lot has changed in 3 years since I last posted.
It is sad for me to look back at the posts on this blog- it was the most difficult time in my life. B was so incredibly ill and in chronic physical and emotional pain. Watching him suffer- watching my family and self suffer- was indescribable. I think I had to give up writing about it because it was that overwhelming.
Good news!! B IS DOING AMAZING!!! He has really grown so much!! We are ALL doing amazing. We have moved. In the summer of 2012. This was the best decision I could have made. The school district where we lived would never have been able to meet B's needs. Little did I know that this move would be great for all 5 of us! The daughter has met a bunch of great friends- people in our church- she is going to start high school in a few weeks. The older son has done terrific in school and he'll be starting 6th grade in a few weeks.
B has been attending ABA therapy full time for the past two years. His behavior is much much improved. He knows how to walk next to me in a store; he's not constantly wandering off or walking away. He has far fewer aggressive episodes. He is talking so much more! He is eating a wider variety of foods! He can read and spell and do a little math. He is learning to tell time and count money. I am so proud of this boy I could just bust. He is the hardest working little guy and he is my hero.
We have met new friends. We bought a house this summer and it has exceeded my wildest dreams of a house I could ever own. The husband has a shiny new job that he loves. I have enjoyed mentoring new autism families on the journey.
I have built up a lot of things that I'd like to say, so I expect them to come streaming out in new blog posts soon. ;)
Thursday, December 15, 2011
Letting go.
Wednesday, December 7, 2011
Hearing no.

I'm pretty sure one of the most depressing parts about parenting a child with significant disabilities is hearing the word "no" with unbelievable frequency. No, he cannot do that. No, he is not welcome here. No, your insurance doesn't cover that. There are NO available slots. That service is NOT available. I know this is a program for children with disabilities but yours has too much need. We do not have funds. Or there is the yes that is really a no: Yes, your child can be in this program and that will cost you $$$$$ which you cannot and never will be able to afford. Before B. I don't think I ever heard the word no. Pretty much I set goals, worked hard, then I achieved my goal. Autism doesn't roll like that.
Monday, September 26, 2011
Finding what has been lost.

Sunday, September 11, 2011
The Others.
I have two "others" and they are both older than their autistic brother. These two have seen more in their young lives than many. They have seen miracles and they have seen deep ugliness, and many shades in between. Though I have shielded them from much, still they see and hear. And how could they not? The number of hours they have spent in the car, at therapy appointments, at doctor appointments, with people invading our house (oh, the number of people who visit our house!!) is innumerable. Trust me when I tell you: this was not how I had envisioned raising children would be.
My own life growing up was chaotic. I always said to myself that you have two chances to have a family: the first one is given to you, the one you are born into; the second you create from your choices. How I wish that were true! It is somewhat true. I had such a strong desire to have a happy family as an adult. I wanted to have 4 or 5 kids and I wanted for them to have a happy, carefree childhood. I knew nothing was perfect and I knew I couldn't be a perfect mom. But I was determined to have that family. I wanted it for me, I wanted it for my children. It didn't happen like that.
I cannot speak for my children but I can tell you some things that they have said:
"Now that B is 3 years old, he will probably start talking" :(
"B. hates me and I hate him, that's just how it is."
From hiding under the table at Chick-fil-a "I am so embarrassed, everyone is staring"
"Can I be the one who gives him that cookie, then maybe he will like me and stop hurting me"
"AWWWHHHH waaahhhaaa, he pulled my hair out!" *tears*
Those are all from my 8 year old, who is 18 months older than B. It's hard to believe that they are so close in age. I just had a little communication with the social worker at his elementary school the other day. I asked her if there were scholarship spots in an after school art class (and I explained that we were on a limited income and plus we spend any extra money on T's brother's therapies and medicines). She said that T. was not really on her radar. The Others should always be on the radar for school social workers. They should be on all of our radars. I was angry about it and I'll admit some of it was unresolved issues with me. Namely that this is the school that serves kids in our area, the school my daughter attended for 6 years and now T is in his 4th year there. Do they even remember that my autistic son should also be going there? Have they forgotten or was he so far off their radar that they just simply never gave it a thought?
Then there is my daughter. She will be 11 next week, going on 50. She is a wise old soul. She is patient and compliant. I wish I could have a quarter of her patience. She knows so much about autism, but is never indignant and pissed like me. She goes with the flow, she will forgive you over and over. B loves her like nobody else. And the feeling is mutual. I do think she would be this compassionate even if she never had autism in her brother because she truly came to me this way. But there is no denying that having a brother with autism has touched her and changed her mostly in positive ways.
I have two Others and I'm still learning how to deal with them, especially since they are both so different. I have to always remind myself that these Others are constantly there. They watch me and take cues from me about how to treat their brother. I feel in the future that it will be The Others around the world that make some changes for autism. They are the ones that have seen the painful side of autism, not just the Temple Grandin movie or the savant who can play piano by ear. They know the suffering and can work for a cure and treatment.
Monday, August 8, 2011
Victimology.
I've been thinking a lot about how special needs children are so much more vulnerable to becoming victims than the rest of us without special needs. We have certainly heard in the news about children being bullied in schools. These victims are not often popular, intelligent, athletic, and smooth students. The victims a lot of the times are children with special needs, not always autism but often possessing social deficits and/or behavioral challenges.
Special needs children are more frequently abused as well. Let's face it: they can be challenging to deal with and that challenge can lead to frustration and push people to their tipping point. (Please understand that I do not mean this to be ANY kind of excuse for inexcusable, not to mention illegal, actions. Nor do I mean to "blame the victim.") I'm devastated to hear stories in the news about murder/suicide when a parent kills their child and then commits suicide. I cannot really even fathom the kind of despair that drives that act.
Special needs children are more frequently the victims of other crimes, violent or not. Because their developmental level may be younger than same-age peers they can often be gullible, overly-trusting, and generally show poor judgment.
Lastly, children with autism are more likely to be victims of accidents, sometimes leading to death. It seems like in the summer we hear a story or two PER WEEK of a child with autism wandering away to their own death- drowning being the most common end. Until you've experienced a child who is a "runner" firsthand, it really is impossible to understand how difficult it is to keep these children safe. I've also heard of autistic children falling to their death, jumping out of a window, getting hit by cars, dying in a fire, being left in a hot car.
It's heartbreaking to hear these stories. But I feel it's important to tell these stories so that people know how fragile our children are. How vulnerable they are to predators, bullies, accidents. Vulnerable even to themselves and their own lack of judgment.
Tuesday, June 7, 2011
Endings...
The girl child is graduating from elementary school and after much deliberation and many pro/con lists (and many objections from said child) she will be attending middle school at our church's school, starting in the fall. More about that some other time....
The middle is doing well, growing in his own ways, made lots of good friends this year.
And then there is B. Summer really can't come fast enough for him. He probably just had the most stressful school year yet. Some of it could be because he's just more aware now that he's older, because some of those preschool years certainly would have had me running for the hills. This year I learned that he can have a pretty good school team but still have a miserable year. How, you might ask? Trying spending a 8 hour days (including 2 excessively long bus rides) with 5 boys with severe autism, all the while having autism yourself. Yeah, so that's why.
Right in the new semester, B was pinching and pulling hair many many times per day. Mind you, this is a kid who was never aggressive before starting kindergarten. He could certainly throw a tantrum that would bring everyone to their knees and the OCD and the eloping and... he had a lot of behavioral issues. But never was he aggressive. But by January, I could no longer trust him within 3 feet of another child, including my own.
I guess the school took all the right steps. They observed, took data, wrote a behavior plan. The sad reality is: That behavior worked for him. We can do lots of things to reduce it whether it be positive reinforcement or some punishments. But it will never be totally gone; it will always be in his bag and he could pull it out at any time. That makes me feel sad. Actually, it's not really sad that I feel, it's more like supremely pissed off, but let's just go with "sad" because it makes me sound less crazy.
Thursday, January 27, 2011
I've been gone (i.e. getting my ass handed to me)
We had some inevitable and expected changes. For one thing, B's usual medicaid worker left us after 9 great months. No one is ever perfect, but she was damned near close. The holidays. Or as I now call them: days I used to love and I still try to make awesome only to be disappointed. Christmas is my favorite holiday; notwithstanding, the break and having the kids home was AWFUL. Like jump out a window bad. I could see all through November and December, it was building. B's anxiety, then the OCD, then the little bit more OCD. Next thing I know I see my sweet 10 year old daughter asking her autistic brother's permission to make a bagel FOR HERSELF. That was the proverbial straw. We were all tiptoeing around the 6 year old. The doors, the lights, the endless rituals, the tv hum, repeating the words "red circle button" over and over- I have no idea what that even means. This, alternating with ear-piercing screaming, basically is what my house was like for 2 weeks.
Did I try to go out? Yes. (Stop shaking your head, I had to try!) I thought maybe it would help. Maybe we just had bad cabin fever. The husband was home, we decided to try the mall: it was free, we could make a quick exit, it was indoor. The good news is that we are all still alive. The bad news is that there might have been some blood, definitely there were tears and sweat. B had several tantrums but saved the best one for the crowded food court. Who do we run into but our landlord, the one I've been trying to hide my crazy destructive hazardous child from. Ugh. Well the cat's out of that bag. Good thing we signed a two year lease.
I really could go on and on about break, but really the worst part was when we got a new medicaid worker, who by all accounts has loads of experience in the field, and after two days she quit saying she just could not handle his behavior, the screaming, the tantrums, etc.... On the one hand, I wanted to beg her to take me with her to the place where quitting is an option- by that point I was ready to quit. (I might have googled leaving an older child at a fire station, not because I was going to do this but I was curious whether or not it was an option.) On the other hand, I was highly annoyed. I mean, we are talking about a 6 year old who is maybe 45lbs dripping wet- get a grip! He has autism, stop taking it all personally. Easier said than done. Now we have virtually no help. So that's not good. <---- also understated.
Tuesday, November 2, 2010
Suck it up.
Sometimes I wonder if it's my attitude that is really the problem. After all, attitude is everything, attitude is the minds paintbrush, [insert your own cliche attitude quote right here]. I try to be optimistic. But it's difficult when you are faced with a situation where it is a given that the end will not be good. Or the end will not be what I wanted. And it's also difficult to feel positive when I witness such ugliness and discrimination toward my child with autism. If you want to get a sense of what I'm talking about, just bring my child to a mall, playground, or out to eat- you will be turning heads, receiving glares, and hearing parents whisper to their child "I am sooo glad you don't act like that."
On the flip side, maybe autism really does suck and it's not my attitude. Most parents I know with an autistic child, especially a child who tends toward the severe end, are hard pressed to find blessings in this mess of smeared poo. I'm not saying there are none, but just that there are extremely few. I often wonder if it's the autism that makes us jaded or what. In between the medical appts, the head-splitting tantrums, getting kicked punched and bitten, the paperwork, being pissed at the school for being shitty, the judgment from "the public", the worrying about the future... there is little time for thoughts of sunshine and rainbows and puppies.
But today I am just here. Everything is settled and calm. I just need an outsider to look in and tell me if I've changed or if things are truly better. This is the normal. Perhaps acceptance isn't too far away.
Friday, August 13, 2010
School is almost here. Kindergarten.
Ben is going to start Kindergarten in a couple weeks. It's big and it's no big deal, at the same time. I generally try not to over-think things like this. But it's certainly not lost on me that every other 5 year old that I know is gearing up to go to our neighborhood school.
Literally, the school is in our neighborhood- the neighborhood that on that fateful day in Dec 2004 I brought a tiny 7lb perfectly healthy newborn home from the hospital. Then we did the playgroups and picnics and the birthday parties. We even tried the preschool that Ben's older sister and brother attended. I don't have to tell you how that ended, but I will share that it was a painful few years watching those babies and toddlers fly by him. And then watching kids years his junior pass him.
I'd like to say I'm over it, but of course, I'm no where near over it. The pain doesn't really diminish, it just changes. Now it is hard to even imagine how things should have been- what it would feel like if Ben were going to that school and we were sitting by the mailbox to find out who his teacher will be and how many classmates we know. And he'd be talking. And I'd still be talking to those other parents about all-things-kindergarten. Hard to envision because that is so far from the reality? Anyway, thinking about the should-have-beens is not all that productive.
So I will vow to live in the present as best as I can. I like the school that he will be attending. I am looking forward to a good experience and positive changes that I see happening with this transition. I will drop off my "big kids" at the neighborhood school and I will focus on them and their teachers and classmates. But I will not be stealing a glance down the kindergarten hall. And no, I don't want to hear how upset you are about how your kid didn't win the teacher lottery or didn't get to be classmates with his best friend. Think about it.
Monday, February 8, 2010
Autism: God, seriously WTF?
I have asked the question "why?" many times but usually it's because I really want the answer so I can help Ben get better. Very rarely have I entertained the "why me? why ben? why us?" questions. I don't feel that I need an answer to that. But I still am reserving my right to pity parties.
Saturday, February 6, 2010
What does it take to get a little respect? Where respect equals alarm.
Here’s a big question: Is this what it takes? What does it take for people to start panicking? Autism is a national health emergency. This kid had public insurance, health care reform won’t stop this from happening. This is about autism and how in 15 years there won’t be anywhere for our kids to go. The federal and state governments cannot handle supporting the ever increasing numbers of people with autism. Scientists and doctors continue to feign exasperation while doing million dollar eye gaze studies, meanwhile our numbers are exploding out of control. I will say again what I’ve said many times before- I support research into causes, prevention, treatment, and potentially a cure for this devastating medical disease that literally stole my son’s life away. Don’t misunderstand, I will continue to advocate for services and supports- my child will certainly need those forever. But only focusing on supports and services is like attempting to stop up the new orleans levees with bubble gum.
Autism organizations need to get real, get out there and start flipping out about these numbers. ASNC hasn’t even changed its website to reflect the latest numbers. We should be out there shouting it from the rooftops. We should bring our kids. We should tell people- autism is not a psychiatric condition- it is a multi-system illness that deserves dedicated wings of hospitals to treat. True autism insurance reform is meaningless unless we can have treatments that help our kids get better. (Though I’m disgusted daily that my husband works for UNC hospitals and the insurance they provide does not cover evidence-based treatments for my son’s medical condition.)
No, I refuse to support more tax increases. I did that last year and they paraded our kids around saying “we need to help poor people with disabilities blah blah blah” and then they slammed our community with the biggest hit. Until these legislators can show some more fiscal responsibility to fund things that matter, then I will not support me paying more when people with disabilities get less.
Tuesday, January 26, 2010
This ain't Holland.
Ben was diagnosed when he was 23 months old- it was scary, for sure, but I thought we could just get the recommended therapies and all would be well. Four months later, it all hit me like a two ton pile of bricks. Previously his main symptom was developmental delays- things that he did not do- no talking, no pointing, little joint attention. But when the stimming and hand flapping started, I lost it. I brought him to the doctor sobbing asking for help. (To be fair, it was not his regular doc that we saw that day, so to her I'm just a hysterical mother.) She was sweet and kind but she said that having a child with special needs is "just different" and that I needed to look at the bright side- he was healthy. And maybe I should think about taking some meds (for myself!) She ended the visit with saying that there is a poem about raising a special needs child. I already knew about this poem because I have a degree in psychology and had previously worked with families- heck I probably handed it out to some poor unsuspecting mom. I went home that day to google the poem and read it again. The optimist in me felt so much better. I could do different!
Three years later, I'm pretty sure this is nothing like Holland. I still have a good outlook on life. I'm still an optimist. I still believe people are generally good. I still have lots of hope for the future. I still believe my son is awesome in many ways. I adore his quirks and his smile and I love him to the depths of the ocean and up to the moon just the same as I do my other two children. But mothering a child with autism is 5 billion times harder than raising a child with no autism. It is not just different, it is really really hard.
Monday, January 25, 2010
My favorite poem

“Hope” is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—
And sweetest—in the Gale—is heard—
And sore must be the storm—
That could abash the little Bird—
That kept so many warm—
I’ve heard it in the chillest land—
And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me.
