Progress

I was in Wally World the other day (I swear I only shop there because I literally cannot get any father to get anything. Either it's a case of no money, or a case of no energy...Walmart is a block away from my house), and I saw Steven's second preschool teacher (between moving and re-zoning of school districts, he's had four). We didn't recognize each other at first, but when we did, lots of hugs and exclamations went round. I showed her a picture of him, and we marveled at how much he's grown. I still shake my head when I see pictures of him from even a year ago. The baby cheeks are gone, even though the cherubic face remains. A head full of wild russet curls replaces the semi-baldness. His chinquapin eyes twinkle with expressiveness, and he's as sarcastic as his mama. How he manages to do that without speaking, I do not know...but he does it.

This teacher is the reason why my son is so sociable now. She's the reason why he will reach out and shake hands with people; Steven was very afraid of interaction with others prior to entering preschool. Now he has friends, both at school and in our neighborhood. He plays with kids on the spectrum as well as neurotypical kids. Other children just love him, and I hope and pray that his gregariousness carries him all the way through school. I have told people many times that I do not treat Steven like he is disabled, because that is not the mindset that I want him to have. There have been (and will be) many times when I have stepped back and let him fall, not because I am cruel, but because I want Steven to understand that he has it within him to get up on his own. When my son steps in front of me to do something for himself, I feel so happy. One day I will not be here, and due to the fact that few people around us truly understand him, who will care for him when I'm gone?

He will, that's who. And even at the age of 4, still half-potty trained and non-verbal, he knows it.

I am so grateful for Steven's teachers. All of them. From the first one who came to me to suggest that he enter the Preschool Autism Class, to every teacher he has had since then. Why don't we pay our teachers the same as doctors? Teachers create doctors; the learning has to begin somewhere. What I see in my son I could not possibly have achieved on my own. And with each step taken, I rejoice.

The other morning, as we began our ritual of kisses and cuddles, I bid him good morning. I got a tiny "good morning" in reply. He gives smart-aleck answers at times to my mother's questions (which fills me with glee). He feeds himself with a spoon, can dress himself with minimal assistance (though he can be lazy about it), and pretty much has the potty ritual down. I think one day I'm just going to buy him regular underwear...and buy myself a mop and some Lysol for that weekend. I think he's ready.

When the doctor first said "autism", I had no idea what to expect. I surely didn't expect what I see in him today, not after going home and finding out that my little one exhibited all of the behaviors associated with autism, with the exception of two (which he ended up adopting later). Sure life can be difficult at times, but I truly and honestly believe I have a little prodigy on my hands. I'm not saying that because I'm his mother, I'm saying that because this kid is smarter than me. He just shows it in a different way.

You go, little guy. Mama loves you to distraction.

New School Year

So Steven is in his second year of preschool. When I went to his IEP meeting at the end of last year, I was a bit disappointed in the goals that his teacher had set out for him, but this is just a lesson in acknowleding the fact that I still have a lot to learn. While special ed teachers do not always know what it is like to be the parent of a special needs child, at the same time, most of us parents do not have the technical skills needed to teach these children in the way that they require. Yes, there are things that they can only learn at home, but there are also many things that they can only learn in the social environment that is school, and there is always going to be a give and take.

To me the goals were pretty simplistic, given what I had seen Steven do. Steven does not talk much, but he can. He's a smart aleck. He will schock you; I tell people, if you find yourself doing a double-take and asking yourself if he said something, nine times out of ten he did. Steven's vocabulary is probably much larger than I can imagine, because the receptive vocabulary is there. Steven understands everything that you say to him. Not to mention, I do not mince words as his Mother. I have never spoken baby talk to my son, and I never will. I use big words with him, and I tell him what I expect of him. I honestly do believe that this has borne fruit. As of today, my son knows how to imitate, match two like items, and identify things based upon description. Add to that progress in potty training, random words and LOTS of affection, and I am heartily pleased with the progress I am seeing.

I am grateful to Steven's teachers.

I saw his very first preschool teacher the other day in the store; we talked and reminisced a bit. Later that evening I sent her some pictures of Steven so that she could see how much he had grown. She said to me that it was so nice to see what she called a "success story" (you can only imagine how awesome that made me feel) for once, instead of parents wide-eyed with shock. I have to say that that was never me. My only concern with regards to Steven's autism has been how he would be treated by his peers. I was not, and never intend to be the parent who plans out my child's life for them. And that is where I think that perhaps some parents do themselves injury. Yes, we plan, we hope and we anticipate when little one is on the way. But that child should be allowed to determine their own destiny. The canvas of their life is blank for a reason, and that is not for us parents to write on it. I am determined not to leave many marks on my son's life past the few influences I leave as a mother. I want him to decide what and who he is to be...and I don't feel that autism is any deterrent at all. Just look at Carly Fleischman.

Last year I did a fundraiser to purchase Steven an iPad. I had seen on the news how much special needs children, especially autistic children, could benefit from the use of an iPad. I wasn't able to raise the amount needed for a new one, but I was able to get a sturdy 1st generation used one, and it works fine. Steven loves it. I hope to turn it into an AAC device for him, in case he still doesn't wish to do much talking for a while. It would be wonderful to know what's going on inside his head. But for now, seeing him do things like this is enough:

Weak Parents of Neurotypical Kids

I have decided that I am not cut out to do daycare these days. The amount of spoiled children I see screaming in stores and trying to convince their parents that they absolutely need this toy (who then break down if....IF they hear the word "no"), guarantees that I will have one of these monsters in my home, tormenting my child and raising my stress level.

It surely is not what it was when I was a nanny. I cared for indulged children, but they understood the concepts of rules and obedience. These days children have no fear of repercussion from their parents, and it shows.

For about a month I watched a neighbor's child. He showed up bawling every single day. He never spoke, refused to eat, and I had to make him go to the bathroom. But the parents swore up and down that he'd talk, he'd tell me when he had to go potty, and he was a generally happy guy. I never saw any of that. This kid felt it was okay to play with my son's toys, but would not share the ones his parents brought each morning to pacify him. Had this been a real daycare, he would not have been allowed to bring those toys, and if he didn't participate with the other children, he would have sat out. My son would try to hug him to ease his crying, and he would push my son away. And the kid's biggest gripe? I made him eat the food his parents left for him every day.

His parents came down last night and told me that his mother was now working nights with her job. As a hotel housekeeper? Yeah. Okay. But you know what, their lie saved me from having to tell one, because I was getting rid of that kid.

Children these days are pampered left and right. I understand wanting to give your kids a better life, but to me that means two doting parents, chances to go out and play, and a place where one need not feel fear. NOT tons of toys, giving in at the slightest whine, and definitely not skimping on the food issue. The child I was watching had poo that was white. That's a nutritional deficiency! You're so weak a parent that you can't manage to get your kid to eat? You need to lose them.

Parents of neurotypical kids these days really irritate me. My son is developmentally delayed and behaves better than these kids who at his age are talking a mile a minute, potty trained and able to deal with simple reasoning. Instead they are using their reasoning skills to con mom and dad into buying the latest thing they see, playing with all their gadgets, and falling out in the store. And what does mom and dad do? Nothing!

Please stop saying that the government won't allow you to discipline your kids. It is not against the law to discipline your kids. Stop saying you're afraid of CPS, let me give you a heads up. I had them called on me for a bogus reason. The worker saw that it was a bogus reason, and closed the case. Fear of CPS is not an excuse for letting your brat run wild.

My son has what seems to be unlimited energy. My body constantly aches, and I have no energy. Yet I keep up with him....every day, as he gets up at dawn. I'm constantly in pain, but I lug him and tons of groceries and other sundries around ON THE BUS, while parents of these screamers have minivans to load all their crap in. My son thinks that my every movement initiates a game of chase, and just trying to get to him to change his diaper is an event. I manage to get fruits and vegetables into a child with serious food anxiety due to his autism. What is your excuse, mom? Make a damn milkshake and take those gerber or beechnut pureed fruit veggie thingines and mix them. Serve cold to your brat.

Please be parents, not pussies! Seriously! If you have given up on trying to get your kid to eat, wear something decent to school, do chores, listen to you, and all you keep doing is buying things, then the problem is you. STOP it with all the purchases, find a creative way to involve your kid in the day to day workings of the home and stop making excuses. I read where one lady said it was tough to be a kid today. WHAT? She went on to say that it was easier to just not have them do chores because the effort you had to put into it would wear you out. Lady, maybe you need to just block out yours and your kids' "busy schedules" (they don't need to be in lacrosse, ballet, volleyball, tae kwon do and tennis all at once), and spend several evenings and weekends working on their chores. They bumble it? They fix it. They don't want to move, you fire up that butt, and they will move. Make them understand that YOU are the parent, and stop being so concerned with whether or not they like you. I don't care if my son likes me, he loves me. That's what's important.

My son does not like me when I make him try a new food. He does not like me when I take him in from the park out back because it's time for me to start dinner. He does not like me when I am sluggish when he wakes up at dawn every freaking morning, and I make him lay back down for 30+ minutes. Of course he doesn't like me. So what? I discipline my son when needed, and I do my best to keep up with him. I hold him down to get his medication, and I communicate daily with his teachers. My son hugs and kisses me, and it's not because I give him all these material things. Stop trying to buy your kids' love and approval.

I'm glad the little mongrel is gone. And the ones before him, who peed on my floor, dropped food on my floor that they didn't want to eat, fought like animals, apparently never bathed (because they hated water...um, so? DEAL WITH IT, JEEZ) and loved to have "who can eat the loudest and nastiest" contests.

I think I will stick to my kid. The parents of kids like the ones I watched do not have any real challenges. Stop using income as an excuse. Stop using single parenting as an excuse. You're a parent, you're supposed to be tired. And if you're cash poor, stop buying brand name, stop buying every little toy. When we get our son a toy, he is enamored of it for a very long time, and comes back to it regularly. That's because we're not shopping every weekend. When we do get him something, we tell him it's because he's been a good boy. And we only do it then. We do not reward falling out in the floor, throwing food, pooping in the tub (sensory issue), or general refusal to listen.

Why is it that we have a disabled child who behaves better than most neurotypical kids his age? Why? Steven hardly ever screams in the store. I can count one or two times in his almost four years of life. But each time I go somewhere, someone's brat is screaming bloody murder in aisle three.

Um, take that kid to the car and get an understanding between you. And at home, stop giving in! You subject these kids on the general population and it's because of YOU that so many people want kids banned from public places.

BE A PARENT, NOT A PUSSY. This has been a public service announcement, courtesy of Sam.

My son only wants to play with you...

Interactions with other children have been strained as of late. I honestly don't know what to think, because Steven does just fine at school, and he did fine in daycare. He is the only autistic kid that went to his daycare, yet his class is nothing but kids on the spectrum. My little boy is not a bully (except to his parents), he isn't territorial or mean. He just wants to play.

But Steven is in his second situation where he is dealing with neurotypical kids his age who freak out when he comes near them. Steven is the master of the bear hug. He likes to tackle. But even if he doesn't, it seems like these kids just want to break down and cry and run from him.

Don't do that to my child.

I fully understand that some kids are just used to being at home and around relatives. My son was the same way. And he hated daycare at first. I hated going back to work, but it needed to be done. Still, Steven has developed into a very kind and social child in spite of his difficulties. I feel like some kids don't even give him a chance. That breaks my heart, and makes me fear for when he's mainstreamed. I'd love to play it safe and keep him in special ed classes, but what will that do for his development? I can't ask that he stay there just so he won't be bullied. Especially when I see him growing and learning every day. Steven has autism, he's not a vegetable.

Still, it's hard to have that discussion with other parents. One parent just made a bunch of excuses and cited "shared play space" as the reason why her sons could practically run over mine with their bikes. The other, I don't think that her English is advanced enough to understand it yet. I sometimes feel like some of the parents I come across are just telling their kids to brace themselves and deal with my son until he goes away.

And all he wants to do is be your friend.

I have been rejected all my life. I'm used to it now. That doesn't mean that it doesn't hurt, but I don't fight the inevitable now. The path to accepting the fact that I'm different is quite muddy with tears, not to mention stony with the rocks thrown by people who seem to hate anything different from what they are.

I don't want my son to know that pain. And while I cannot protect him from every hurt in life, I can grieve with him when they come, and hopefully shield him sometimes.

I just wish there were more people out there who were actively making their kids aware that there are scores of folks out there who aren't like them...and that this is not a threat. All my son wants is to love and be loved, and thank goodness he is...by many. But I don't want him to be bullied like I was growing up, I don't want him to hate himself like I did, for just being different. I want him to keep preening in the mirror like he does now. I want him to grow up to be whatever it is that he's meant to be, and not be stifled by the judgment of the world. I hope that I can have some influence in that area.

But for today, Steven just wants to be happy. He just wants to love and be loved. He just wants to play. So you can't understand much of what he says. If you asked me what that was, I'd tell you it was apraxia. And I'd tell you what that meant. Yes, he likes to play with toys in different ways, but he also likes cars, trucks and planes like any little boy. He has the same sharing issues as other kids his age. In some cases a little less, if the kids next door are any indication. So he flaps his arms and gives bear hugs. You mean to tell me you've never made a nervous gesture or given someone you love a bear hug?

It is a blessing that children several years older than Steven (for now) seem to understand that he's different and wish to interact with him. The joy on his face when they play with him is truly divine. I just want to protect my child, and right now I don't know how. I don't want that day to come when he realizes that he's truly being rejected by someone who should know better. 25 years later I still remember when "that day" came for me.

I just want to protect my child. My son only wants to play with you.

Summer Vacation

I have to remember in the thick of things to sit back and write sometimes. Steven is growing so fast, before I know it he'll be four, and we'll be celebrating another Mickey-mouse themed birthday. Or perhaps Doc McStuffins. I have been replaced (for about a half-hour at a time) in my son's heart! It's cute, though. Except when he's giggling at 3 am for no reason. Well, that's cute...but you're so sleepy you can't really fully appreciate it. He's bouncing around the living room now.

So I decided to keep Steven home for the summer. The school he was transferred to when we moved was sub-par, and I found myself increasingly angry as he came home having lost all the progress he made with his first school. A friend of mine says I focus too much on abstract terms like "progress", but for Steven this is everything. I won't be around forever, and I surely cannot count on family to be there for him. So I have to teach him to be as independent as possible. Luckily that spirit is already within him.

I had a few reservations about keeping Steven at home first, but I'm so glad I did. He's doing much better at potty training (and I will demand that his new school take him potty, instead of telling me they don't have time!), he gets so excited when he goes pee-pee. I got some of the baby signing time videos, and he LOVES Ms. Rachel. He'll even sign "eat" from time to time. That's the only sign I can get out of him most of the time, but he has so many other ways of communicating, it's okay. I want to get him an ipad, but I can't afford it.

So many changes in Steven's life, and so many changes to come. I am keeping two young boys now, to bring in extra income. The income definitely helps, as my son and I are temporarily not eligible for the government assistance we were receiving. This evens it out I am still waiting for my disability (hence the break in assistance), and with that independence. When that comes, I'll be able to live on my own with Steven. Sadly, it has become necessary to separate from Steven's father. I feel really badly, because Steven loves his dad, and I don't know how much big Steve will be in his life after the split, but the man's issues are entirely too much for me and his child. Steven has enough challenges to face, he should not have to witness abuse or violence. Thank God I am strong enough to make my way out now. I just hope that his father gets the help he needs. I only came back because I thought it was best for our son. He hates seeing either of his parents leave, and the guilt over that is difficult. But the ramifications of living in a house full of tension are far worse for my dear child. Best to get my personal independence and peace now, so that I can continue to be stable for Steven.

Because honestly, I'm the only one who has been.

Back to the "playmates" that Steven has each day:

Steven definitely enjoys his playmates, aged 3 and 5. He gets excited if he's awake in the early mornings when they come. He engages in parallel play with them, and sometimes joins them. I so do not regret keeping him home for the summer. Still, it is difficult at times, trying to get one child who is only a week older than him, and his older brother to understand just how Steven is different. I am currently facing a challenge as a childcare provider, in which my two charges want to be able to get away with some of the same things Steven does. I have to find a way to explain to them how Steven's mind works, without disparaging my child. This world thinks in such black and white terms, and I don't know that young children (at least ones this young) can really understand. But we shall see.

My birthday was last weekend, and Steven surprised me and his father. I do so hope that Steven's father will allow us to co-parent and be friends for the sake of our child. He is so precious, this little one. Steven surprised me by first touching my birthday cake, then eating a crumb and licking the icing. He drank out of a straw. He tried ketchup. I'm so glad that he has awesome table manners. In fact, he's pretty much an angel in public. Though we did have a scene last Saturday. We were riding the bus home, and big Steve got off at Walmart to pick up something for me. Little Steve saw him leave, and how I know how the parents feel, whose kid(s) flip out on the bus. It took a couple of miles to calm him down. I don't know whether it's seeing his father leave, or just the change in "routine" (daddy's always here, I may not pay him attention but he's here) that bothers him. I hope to be able to find out, so that I can give him the comfort he needs.

Well, the day has begun. My charges are awake.

My little angel...growing up. He was smug about 

going potty in this pic...

So many surprises...

Steven playing with the train set my mother got him....

It's not about me.

It is my goal that very rarely will you read about me (Mommy) on this blog. As it stands, my support network is growing when it comes to raising my son, but on the physical plane it was non-existent to begin with, and that has been hard. I talked to a friend yesterday, because I'm battling burnout as well as anger and frustration at having people (like my son's father) near who just don't do much to help in what can be such an overwhelming situation. But I can do nothing about that, today is a new day, and my son needs me. Not to mention, he needs me happy and whole. I'm determined to be that, even if I have to turn around and tell my son I'm sorry for being an ass every single day until I get to that point of wholeness. I'm determined each day to learn from my mistakes. It is not about me.

Steven is almost three-and-a-half. His half birthday is the 4th of July, and I think I might actually do a half birthday party with him this year. He has some new friends next door (so do I, squeeee!), and I take care of them during the day while their mom works. We met because when Steven sees and open door, he will run through it, and he happened to run into their open apartment the day they moved in. Jeremiah is five, and little Ezekiel is a week older than Steven. I'm so glad that Steven has friends so close, and people who are neurotypical, so that he isn't always surrounded by kids on the spectrum. Not that that's a bad thing, but there are more NT people in the world than not, and I want him to learn to be comfortable with them. I refuse to pat people on the hand and explain them aside on behalf of my son. Instead, I plan to teach him to use his elbows. Aim for the chin son, aim for the chin. Some people can only be educated that way, anyway. Autism is not a disease. My son is not sick, he is not inferior. He looks at the world differently, and if more people did that, we'd probably be much better off.

The little guy pictured above was born only a week early, after a "complicated" pregnancy. I love Western medicine. Due to a stroke history, I went through four obstetricians only to be delivered by a fifth, because number four was on vacation. Due to being on medicaid (unmarried, so couldn't be carried on his Dad's insurance, and I couldn't work), I was put on the Ford assembly line that is the local hospitals labor and delivery unit. No ideal birth for me, as they could only bill the state so much.

Still, it was wonderful to have him here finally. Long before the word Autism was in my vocabulary, I was listening with bated breath at checkups, trying to brace myself for silence instead of a heartbeat. Praise God I kept hearing that heartbeat. And as much as he makes me want to strangle him sometimes, I still at least see evidence of that heartbeat in the fact that he scales the walls of our apartment everyday. Go Steven.

Steven's development was on track until about 18 months. He walked early, ate everything in sight, and thought it hilarious to undo every baby-proofing mechanism in the house. We finally gave up on that venture. The only thing that bothered me was how often Steven threw up.Steven emptied the contents of his stomach every day, from birth to two years. His pediatrician said not to worry, since he was gaining weight appropriately. I just started him on the Gluten-Free Casein-Free diet, and to be honest I suspect that all this time he really has had a milk allergy. I took him to get tested for one when the doctor suggested I get him screened for autism.

Autism. What is that?

Visions of my son being cornered and bullied in the schoolyard filled my head, as I drove home crying. I was tormented as a child, and I didn't want my son to suffer the same fate, especially over something he could not control. I went home and looked up autism, and realized that all of the things that Steven had started (or stopped) doing that had my now husband and I scratching our heads could be attributed to Steven being autistic. It would be 18 months before we got a final diagnosis, but we started living our lives differently almost immediately.

Steven showed many of the classic signs of autism. He lost the vocabulary he had, stopped giving kisses and making eye contact. He went from eating a variety of foods, to eating only milk, chicken nuggets and dry crunchy foods. He did not interact with other children (in fact he stepped on them at play dates, trying to get to the toy or corner of the room he wanted). If it was in abundance in our house, it got lined up. Be it water bottles, blocks or cans of vegetables. He often rocked, sometimes banging his head against the wall. He'll eat anything off the floor, but try to give him food other than what he is used to, and you'd better have a bucket nearby. He does these things to this day.

I don't belong to any support groups, though I probably should. Given my upbringing, it is hard for me to integrate with others when it comes to issues involving vulnerability. Still, I didn't really look for something to blame when my son was first diagnosed, or even in the months before when the observation was first brought up. What was the point? All I want to do is prepare Steven for whatever life he is supposed to live. I keep in mind that services for him end at 21 (may that change before he hits that age!), and I have to make the best of it now. At this point in time Steven cannot access county services because his Dad makes too much, but Dad is also more of a burden than a help. None of Dad's income goes towards services for this child. For various reasons. But all will adjust in time. School starts again in a few months. I took him out for the summer semester due to an ineffective teacher. But in the fall, I will request that Steven start up with the services he's been denied for so long.

This is Steven's journey, and Steven's story.