The Weber Family

Anyone who follows this blog, or my new blog "My Adventures in Autismland" knows that I like to write. I've been writing my own feelings down since I was a teenager and I feel that I express myself much more clearly in writing than I do in speaking. I hate public speaking, I am a borderline hermit and would love to do nothing but sit in my office and write all day long, but I can't exactly do that when I have a toddler who is determined to kill himself one way or another if he's not watched closely, and Braden is gone during the day, but once he comes home, things heat up. He's been especially emotional and tired lately because we're going through another meds change, but that's not what this post is about. Several months ago, I began writing a young adult fiction novel. The idea for it came from a very crazy, very vivid dream that I had. I was telling Jeremy about my dream and he told me I could write a book about it. I laughed but decided to record the dream anyway. It wasn't until much later that I decided to actually attempt writing a novel. I do NOT have a degree in English, or creative writing. I simply love to write. I started creating these characters in my head, and they started taking over everything from there, like they were real people to me. Funny huh? So I decided to tell their story, and that's how it started. Once I started writing, the book wrote itself, before I knew it, I was at nearly 100,000 words! I couldn't believe it! I've had to do a lot of editing, though, because I'm not exactly a grammar whiz. The book is for teens, and I hope and pray that I can find someone out there who believes in my story enough to publish it, and I hope the teens out there can identify with my characters and fall in love with the story too. Only time will tell, but I've finished writing the first book of the series I'm planning and I'm now beginning work on the second book. I know, I'm completely insane. I've sent out a few queries to agents, but it takes time to get responses on those things, so I decided "why not?". It might take longer to write the second book, though, because I'm realizing that I can either write, or I can sleep and a majority of the first book was written in the middle of the night, because that is the only time I have privacy and peace. It's catching up to me though. I need sleep if I'm going to survive each day and finding the perfect balance when you're borderline obsessed with something (which I am) is very hard to do. Even when I'm not writing, I'm thinking about plots and scenes and charcters; it dominates my brain, but it's made me realize that it's something I enjoy so much, that I really do want to make a career out of it. Will I make tons of money from doing this, probably not. I don't even care about that (though I certainly wouldn't complain about it either). I enjoy creating something from nothing and if I can get that put out there into the world and it makes some teen think about life a little differently; that would make all the sleepless nights worth it.

We had a great Halloween this year. There were even kids in our neighborhood trick or treating! Last year, there were only two or three houses in our neighborhood. The boys had lots of fun trick or treating. We carved pumpkins with our next door neighbors and had lots of fun having them over. I did a green and black theme for my decorations this year and I had lots of fun painting my pumpkins. It's an all day project, and I get a lot of funny looks from people as they drive by during the day and see me out on my front lawn spray painting pumpkins and other things, but my favorite part is doing the hand painting. I especially liked my skull pumpkin with the swirls on it. It took me a good couple of hours but that's because I'm a perfectionist. I also hand painted all my mason jars, which ended up looking awesome under the backlight. The white jars looked very cool with tea lights in them. (Yes, I am tooting my own horn, deal with it. 😜)


The boys getting ready to go trick or treating.


Our little skele-Jackson


Braden is doing some funny dance for the picture. One of his favorite things to do is have us video him doing silly things. These two adorable girls are our neighbor friends.


My pumpkins and jars under the blacklights.


My creepy, but pretty skeleton pumpkin


A few of the mason jars. It took me FOREVER to paint the labels on those white ones.


Our Halloween mantle. I've never had a mantle to decorate before moving into this house so it's been fun to get stuff for that too. Halloween is one of my favorite holidays (aside from Christmas) so I really enjoy decorating for it every year. We always decorate on the first weekend in October. Braden gets just as excited about decorating as I do, and I love that.

Braden did his "fun run" at school and he ran/walked 35 laps! We went and cheered him on. Jackson enjoyed watching all the kids run by. I feel very blessed that he was put in a good school with a great teacher this year. I hope he can stay there for the next few years at least. He's never gone to the same school for more than a year. He seems to really like his new classmates.

I'm testing an app that will allow me to upload photos from my phone to my blog. Hopefully it will allow me to post some more cute pics of the boys.


Jackson playing with Grammies glasses during our trip to Arizona.


The "lone Braden" exhausted from a hard days work.


The boys trying to find any way to stay cool in the AZ heat.


I got to meet my sweet niece Lauren Ruby during my visit out there. Here she is with her proud daddy. 😃

Well, it's kind of hard for me to admit this, but I'm afraid. I'm afraid I don't have the strength left in me to go through this again. I'm STILL processing the fact that I have two children with AUTISM! My brain just doesn't want to deal with it.With Braden, it was easier (not EASY, just easier than it is now). Now that we have TWO crazy kids in the house, I feel like I'm slowly going insane! I'm constantly having to tell Braden to leave Jackson alone. Braden doesn't seem to understand that Jackson doesn't enjoy being sat on, dragged around, roughed up...etc. Braden loves all those things. He just wants to play with his brother (I can't fault him for that, so it makes me feel bad that I have to yell at him all the time), but Braden is kind of like one of those really big dogs who thinks he's a little dog. He doesn't realize that Jackson only weighs 24 pounds and Braden weighs 80 pounds (I know, he's a BIG 7 year old) and he can't play with Jackson the way he wants to because Jackson just isn't big enough to "defend" himself or able to communicate to Braden that he doesn't like to be touched sometimes (Other than screaming, which Braden takes to mean "I want more"). If Braden weren't in school for half the day, I would DEFINITELY be insane by now! From the minute he gets home from school, it's like our house goes from fairly peaceful, to complete chaos! Jeremy has to try and get as much sleep as he can before Braden gets home because there's no sleeping once he's in the house! Jackson is pretty content to play by himself, so I actually have to WORK to get him to play sometimes. Not as much as with Braden when he was that age (and even now). Braden still dictates when he's willing to socialize and when he would rather "talk to himself". We will be in the middle of a conversation and he will say "I'm gonna go talk to myself!" and he's off! Jackson is a little more willing to socialize and actually seems to enjoy playing with me sometimes. But when he's done he just walks off. I can't say that it doesn't "sting" when they do that. It's hard to be a mom and have that instinct to be close to your children and they "reject" you. Even though I know in my mind that they aren't doing it to hurt me and they don't understand, it's IMPOSSIBLE not to take it personally. It IS personal! That's always been a difficult thing for me. I feel like I will never have a real relationship with my children. To them I am a tool for getting food, fixing problems, and I'm the one that makes them do all the things they HATE doing. The fun, "loving" moments are few and far between, but I take them whenever I can get them!

We got the reports and the official paperwork on Jackson's diagnosis, so now I can begin the process of finding good therapists. This is a task I HATE doing. We got a referral from the people who did the evaluations, but we're not sure if that agency is covered by our insurance. If they aren't, I'm going to have to go on a hunt for a good speech therapist that has experience with Apraxia and I will have to find an occupational therapist that is certified in working with sensory processing disorder. It sounds MUCH easier than it actually is. trust me. The FIRST step is to go to our pediatrician and get prescriptions for therapy though. Everything seems to be a PROCESS when it comes to autism. It's a journey, one that NEVER ends. And we're just getting STARTED on this with Jackson. Even though I've been through this part before, it really hasn't made it any easier. It's hard to explain why.

The thing I'm REALLY dreading, is when Jackson starts preschool in a year. not only will I have to let him go for several hours of the day (he's my last baby and to me it's too soon), but it will be MORE IEP meetings and dealing with the school district and all those same frustrations I have had with Braden's education, only now I have that times two! Can you see how I might be getting overwhelmed at this point. I DON'T want to think about the future, and there's never any way to know what the future holds, but I can't NOT think about it either.

Our visit to Arizona was nice, and here are the things I learned from it:
1. I HATE Arizona summer more than EVER and I don't know if I could make myself move back there to live in that HEAT! And I will avoid visiting in summer at all costs next time.
2. My boys are NUTS about water and swimming, maybe a little TOO nuts about it.
3. I don't think I want to drive again. It puts tons of miles on my car, and the drive is insane.
4. I really miss being around my family and I'll just have to get the most out of every future visit.
5. It will be a while till I can visit again because plane tickets for 4 people cost a ton!
6. Even though it was nice to be there for 4 weeks, when I got home, I realized that I would rather do a shorter visit and have Jeremy there too. I really missed being away from him and away from home for that long. Even though I had 3 weeks to try and make all the visits I wanted to, it wasn't enough! I think when you've lived somewhere for so long and made so many friends and have so much family around, it's just impossible to see EVERYONE during your visit, though I tried my best to do it, there were several people missed and I felt really bad about that.  It almost felt weird coming back home. (especially walking into a spic and span clean house! It felt very foreign, for about 10 minutes, before the kids messed it up properly!

So I read an article on Facebook about being your own kind of super mom and not setting yourself up for failure by setting impossible expectations for yourself from the get go. No matter how much I tell myself (or anyone else tries to tell me) I'm a good mother, the fact is, I'm not that great. I yell a lot, I lose my patience easily and while I'm being completely honest, Jeremy does most of the cleaning because I just can't motivate myself to do it most of the time. I spend most of my time trying to keep the boys from killing each other while I try to maintain my sanity through outlets like Pinterest. Pinterest. That's something that is both wonderful and awful at the same time. I love the ideas but I spend all this time pinning things I want to do, but never get around to doing them, and I actually feel guilty! It's almost like that computer game where you create another "you" and you create this whole other cyber life. That's what Pinterest is for me. It's my ideal self. It's someone who sews, paints, has an awesome house,works out like crazy, eats and cooks gourmet food that's healthy, has awesome clothes, is SUPER crafty and can do anything I want with my hair and make up. Wouldn't that be nice?  I think the only thing I can really share on Pinterest is my ability to find funny memes.

If I'm being honest with myself about my imperfections, there are too many to list. I'm NO super mom! I don't know what kind of mom I am. To tell the truth, a lot of people tell me that I must be a great mom to have God send me these two special spirits, but I wonder if I just don't have the right skills to raise a neurotypical child. Sometimes I'm pretty sure my own brain is broken to the point that I don't know if I would be a good mother to a child who doesn't see the world the way my boys do.  In fact I have no IDEA what i would do with a typical child. So am I a good mother? Most of the time I don't think so. I have a day every now and then where I feel like I'm not doing too bad, that day anyway. Today I managed to cook dinner, do some dishes, and I haven't yelled at all today! That's a pretty dang good day for me. (Especially the yelling thing, I don't know why I feel like I have to yell all the time. I guess that I just feel like its the only time anyone actually listens to me!) I promised myself I wouldn't be a mom who yells because my mom yelled a lot, but here I am. That's just another thing I need to work on.

APRAXIA: Ok, so here's what I learned about apraxia. It's a neurological problem where the brain and mouth muscles don't really communicate right and the person can try to talk but the mouth doesn't want to make the right sounds. If this is what's going on with Jackson it would explain why he  seems to have a harder time with speech and feeding and basically making sounds than Braden did. It's going to take a lot of speech therapy to overcome this, if he ever does. We wondered if Braden would ever talk, but with Jackson, that's a real possibility. He may understand more than we know because he just can't express himself. I have a feeling that things might be even tougher with Jackson than with Braden. And I didn't even think that was possible!!

Today has been long, and emotional for me. We did 4 hours of testing and evaluations with Jackson and several specialists and he has been officially diagnosed with autism. It wasn't really a shock or anything, but I think I was holding out some hope that all we were dealing with was a developmental delay and he would "catch up" eventually and be fine. The speech specialist also said he may have something called apraxia, something I don't really know much about so I'm going to get to do some research on that. We are also going to have to start the search for a speech therapist and an occupational therapist as soon as we get the official reports and go to the pediatrician and get prescriptions for the therapy (yes, you have to get a prescription for ANY therapy).  I've been feeling pretty overwhelmed and sad today. I guess that every parent who faces this diagnosis has to grieve a little for the life they had hoped their child would have.  I went through this with Braden and it still hits me sometimes out of nowhere. I will be talking to a friend or someone and I will realize that my kids may never do some of the things theirs will. Jeremy and I may never have a "retirement" like other people. We may have one or both children living with us the rest of our lives and we may never have grandchildren. The truth is, we don't know what they will grow up to be. There's just no way to predict how far they will get in their development. They can be taught social skills to an extent, but their brains don't work like a typical child's. it was painfully obvious how far behind Jackson is when they asked me to watch a video of a child doing some testing and fill out a questionnaire comparing Jackson's behavior to the child in the video. I had to ask the woman if the child was really Jackson's age, cause it was painfully obvious that Jackson is REALLY far behind. It was a little bit of a slap in the face for me.

Ok, now on to more positive things. I never thought I would be able to have children at all and here I have two boys that are ADORABLE and lovable. Braden is so funny and has such a quirky way of seeing things and is so SMART! Jackson is so shy and sweet and he has a giggle that would make ANYONE smile. I have been so blessed with these two sweet spirits. We learned so much from working through Braden's therapies that we at least know what to fight for and what we need for Jackson. We definitely have new things to learn with Jackson and I am going to be an expert by the end of my life, and I'm out to educate and help others understand autism; from my perspective anyway.

Today has been a long day, but its coming to an end and we'll get up and keep going tomorrow and the next day, and the next... One day at a time.

I just got back from a meeting with Braden's teacher and principal. We went in to meet about integrating Braden into a mainstream or "typical" class. How do I feel? Lost I guess. I went in knowing what I wanted, knowing what I thought would be best for Braden and I left feeling like a scolded child. I guess I was told exactly what I expected to hear, so why should I feel bad? I guess I just can't help it. It doesn't feel good when someone "puts you in your place" so to speak. What is my place exactly? I'm not so sure anymore. Braden has recently been preferring Daddy when it comes to everything and the other day he even said he wanted to get a different mommy. It stung. I know he doesn't really know what he's saying hurts me, but that doesn't stop it from hurting. So, I guess I'm just a means of getting food, and transportation to and from school. Oh, yeah, and I'm the meanie that makes him brush his teeth, clean his ears and belly button, and clip his nails. And I'm the one who has to go to these meetings and get treated like a child. Does every other mother in the world feel like this?

Well, it's been quite a bit more than the two months I said I would be on break from my blog (almost a year exactly!). I have a lot, A LOT going on right now. I have more going through my brain than I can put on paper (or blog). How do I feel about Autism? My feelings about Autism change by the day I guess. Today has been a roller coaster. Remember my "What If?" post? Well, it's come full circle and smacked me right in the face! Jackson has been evaluated and he has severe speech delay, and sensory processing disorder at the least. We won't know if he actually has autism (at least the doctors won't diagnose him with it) till he's at least two years old. In my heart I feel it already. I feel him pulling away, I see him slowly descending into that abyss. He's the sweetest, most beautiful boy. I fall in love with him every time I look at him. His big, beautiful blue eyes are giant windows into his innocent little mind, but every day it seems to get harder and harder to connect with him. He is definitely different than Braden, they're opposites in almost every way actually. Braden had no concept of danger, and Jackson is afraid of almost everything. He didn't walk until this past Christmas, at 19 months old. He tenses his entire body when he's scared or excited. Whenever anyone but me, Jeremy  or Braden approach him, he freezes and tenses. He clings to me like his life depends on it when we're in noisy, public situations. He's so picky about food, it takes an hour to get any calories into him, and usually I'm the one designated for that job (it gets old after three meals a day). His pal that's only five months old weighs as much as he does. How do I feel about the thought of Jackson getting diagnosed with Autism? I used to think I would be prepared for that because, "Hey! I've been through it once already!" Oh, boy! It never ceases to amaze me how stupid and naive I can be! The second time around does NOT mean easier! In fact I think it's even more overwhelming than the first time! When Braden was diagnosed, I was overwhelmed, but I had no idea what to expect. This time, I know the hard road ahead and for some reason, that's scarier than anything.

So...back to how I feel about Autism. April is "Autism Awareness" month. On facebook, every one is posting something about Autism. Myself, and a few of my "Mothers in arms" (AKA other moms with autistic children) are doing a daily post about life with Autism, or information about Autism to help educate and spread awareness because Autism isn't something we only live with in the month of April. We live with it every day of the year, every year, and we will for the REST OF OUR LIVES. Autism has become a part of me. I don't HAVE Autism, but Autism HAS me. I feel like I could fill a book (not just facebook) with my thoughts on Autism. I've actually been told I SHOULD write a book about it. But where would the book end? I haven't learned everything I can about Autism and I have the feeling that I will be learning a whole lot more as my boys grow up. The learning will never end. I'm sure I could fill several books over the coming years with my thoughts. But really, who wants to hear my thoughts? I'm only one mother out there. There are A LOT of people out there with Autism and they have mothers and fathers, aunts, uncles, grandparents etc... that could (and many have) write a book about Autism. In fact, there are so many books out there it's enough to make anyones head spin. Each book has a different story or theory. No two people with Autism are the same, and what works for one, doesn't work for another. I've been a "journaler" since the age of 13 when my mother gave me my first journal. My journals have always been my sounding board. They've been my outlet when my brain gets too full and trust me, there are A LOT of pages filled with my thoughts on everything from the ridiculous musings of a melodramatic teenager to the excitement of a newlywed, to the despair of dealing with infertility, to the overwhelming joy of finally having a baby, then finding out that baby has Autism, THEN you begin the journey of Autism. (was that a run-on sentence? ha ha!) Getting evaluations, getting answers, getting therapy, finding therapists, losing therapists, choosing treatment options, trying to educate family members. Yes, my brain has "overflowed" quite a bit and still does. There's too much to put on facebook and so, here I am. Maybe someday my "musings" will end up in a book; More likely, some will end up here on the blog, and some will end up in my journal. I just finished watching the movie "Temple Grandin". I'm in tears and again my head is overflowing with thoughts about Autism and MY boys. MY SPECIAL BOYS. There aren't enough words in the dictionary to describe my feelings about my boys. These two beautiful boys that were sent to me and Jeremy. How can I help them harness their Autism and use it to make the world a better place? They've already changed my life forever, but I want to help them get outside themselves and change the world too. I know they can.

My blog has been seriously neglected, but I have a good reason. We will be moving into our house in about 1 month, so things have been getting steadily crazier each day we get closer to it. Needless to say, I will be busy over the next month (maybe two) and will try to post again once we get moved in and a little more settled.