Joy's Autism Blog

I’ve been MIA since November…possibly my longest break from blogging since I started. Anyway I wanted to share a quick little update since a few things have happened.

First and foremost, our sweet baby girl was born on February 12, 2013. She was 7 pounds 7 ounces, beautiful and perfect. Her name is Charlotte Caroline. The kids have all adjusted wonderfully to our newest little bundle. They are so loving and gentle with her.

Here is Charlotte (or Charlie as we usually call her) on the day she was born:

This is the day we left the hospital (Valentines Day 2013):

And this one is a bit more recent, one of her first smiles:

Adrian had a first today, I heard him compliment his sister which was pretty awesome. When he got home from school he came in and told Nevaeh “nice dress.” Wow. That made me smile.

Sanura and Nevaeh are doing well, we’re still homeschooling and it’s challenging but good.

Lincoln is progressing. We have his transitional meeting for kindergarten next week. I can’t believe he’s going to kindergarten. It seems like he’s still a baby, it’s going to be tough. I’m curious to see what everyone thinks his plan should be for kindergarten. Nervous.

Glen and I are great. Same ol’ same pretty much. I’ve shared a little bit about my weight loss journey and that is still a work in progress (as it always will be for me I think). I did well with my weight during pregnancy and I have about 8 pounds to go to get to pre-pregnancy weight. Not too shabby for only being about 8 weeks postpartum. Then I will continue working and losing. I have a couple fitness goals and a weight goal in mind for myself and it’s so exciting to make these changes.

When you have children with special needs like our family does I think it makes the decision to have more children infinitely more difficult. Our chances of having another child on the autism spectrum, I think, are extremely high. Frankly, 75% of our children have issues. I’m almost positive Lincoln will be diagnosed on the spectrum, Sanura very mildly on the spectrum, and Adrian very much on the spectrum. Our chances just aren’t that great to have a neurotypical child.

So I’m sure there are some people, perhaps many people who want to ask but are too polite to ask “Why would you have more children when you have children with special needs?”

If there is anyone who understand the seriousness of autism like Adrian’s autism it’s me and my husband. It’s terrifying. I don’t know what his future will hold but then again, no parent knows what any of their children’s futures hold anyway.

I find myself thinking about the new baby, hoping it’s a girl so our chances are better for not having autism to deal with, or at least hopefully having a higher functioning autism to deal with. I find myself thinking about all the things I can do to “prevent” the autism. I’ve found myself much more emotional about autism whether that’s fear that the new child will have autism or if it’s hormones I don’t know.

I can answer why we’d want more. Each of my children have been a blessing to me. I love getting to know each of their little personalities. Autism hasn’t made my quality of life low, it hasn’t made Adrian’s quality of life low, it hasn’t made Sanura’s quality of life low. Adrian is a happy boy, Sanura is a happy young lady. Does autism present me with difficulties? Of Course! Does it make me feel depressed at times? Of course! As a mother can autism break my heart? Of Course! Is Adrian worth it? Without a doubt. Is Sanura worth it? Without a doubt. Will the new baby be worth it if there is some disability? Absolutely.

The Lord will send me exactly the child I was meant to have and God doesn’t make mistakes.

There are a few phrases that Adrian gets stuck on and he’ll say them several times a day. I’m not complaining, I love listening to whatever he has to say to me!

Lately it’s been “Tell me a secret!” and then I’m supposed to make this “pst pst pst” sound in his ear. We do that at least 5 times a day.

The other thing that he says often is “Are you happy?” Anytime I get upset with him about something like when he was in a very bad mood one morning and was refusing to get on the school bus. I sternly told him that he needed to get on the bus and he says “Are you happy?” or any time we say anything sternly he will go through the emotions “Are you happy?, Are you sad?, Are you mad?” That one he has taught to Lincoln and both Glen and I laughed, and looked at each other, and wailed a dramatic “Noooooo!”

Speaking of Mr. Lincoln…he is talking so much better. It’s really amazing how far he’s come. I’ve said it too many times but Lincoln’s development mirrors Sanura’s in so many ways. Sanura turned out ok with no intervention so the fact that Lincoln’s development looks like her’s and he’s getting intervention really puts me at ease.

I checked out a book from the library about manners and Sanura and I are reading it together during our homeschooling hours. Today we talked about introducing yourself to others, introducing your friends to each other, and shaking hands properly. I’m so glad I have opportunity to work with her on things like this. We had some good laughs when I made her pretend that we were strangers and introduce herself to me. She’s a really fun kid.

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On Saturday our whole family went to the grocery store to do our weekly shopping. Usually I just shop with the girls and Glen stays home with the boys. It’s just easier. It was a busy Saturday afternoon at the grocery store and I was trying to herd all the kids and keep them out of everyone elses way.I usually have at least one “helper” helping to push the cart and at times on Saturday I had three helpers pushing the cart (and tripping me) Adrian, Nevaeh, and Lincoln.

First of all my adorable, sweet, little Lincoln wanted to help shop by throwing random things in the cart. I got that curbed by handing every item to him and having him put it in the cart.

Adrian was extremely hyper and “stimmy” on Saturday. He kept yelling out and jumping up and down. Many times I don’t notice when he’s stimming but he was extremely loud and I could tell that Sanura was embarrassed. She kept saying “Adrian!” every time he would yell out. By the end of the trip when my patience was hanging by a thread I kind of snapped at her and said “you let me deal with him and you worry about yourself” we’ve had talks about how Adrian can’t help the stimming and that we just have to be patient but truly I’m not sure how to help her deal with being embarrassed in public. I understand why, I’m still trying to figure out how to talk with her about those feelings. It’s hard.

Anyway, as we were walking along Adrian yelled out really really loud and Glen said “Calm down buddy.” and Adrian likes to be squeezed sometimes when he’s overstimulated. Glen will squeeze his head a little bit and he started to do that in the store and I looked back and told Glen “That looks really bad” and it did! LOL He was squeezing his head which is something comforting to Adrian but to an outsider…Who knows what they thought was going on. We had a good laugh and got out of that store.

So not only was it a somewhat stressful trip….every time Glen joins in on the grocery shopping I think our bill goes up by about $50! I think I might stick to just bringing the girls next time.

Sanura has made some neighborhood friends, so has Nevaeh. I’m telling you I have a hard time letting go. I want to let them go play and make friends and I also want to protect them.

I homeschool them so this a great chance for them to socialize which I’m happy about. The problem is Sanura is so desperately wanting to be accepted, she wants to make friends but hasn’t been able to ever really make a good friend because of the social issues that Aspergers Syndrome presents for her. I just don’t want her to compromise her values to be accepted. I noticed some of the kids hitting each other (not hitting my children) and for sure I didn’t like that and Nevaeh also said one of them said a bad word (eventually I got her to tell me what it was and someone said “I hate you” to someone else) hate, stupid, shut up, and retard are all bad words in our house. I have high moral expectations from my children and I’m nervous about outside influences.

I just remind them to always do what she knows is right even other kids aren’t doing the right things. Meanwhile, I play stalker and peek out the back gate checking on her every now and then. I might need anxiety medication to deal with all this “friend making” stuff…..

This morning I had to take a quick shower and I asked Sanura to keep an eye on Adrian (he was the only other kid awake) I was brushing my hair and stuff and I heard Sanura yelling (loudly), then the pounding of a thousand elephants (oh I guess that was just my two kids running through the house), and Adrian laughing (hard).

I came to find Adrian was running away from Sanura and he was getting a kick out of her reaction of wildly chasing him and yelling at him.

Sometimes I just have to laugh. I explained to Sanura that he was acting the way he was because of her reaction to it and if she changes her reaction to what he’s doing he would probably stop.

I haven’t written in a little while. I guess there hasn’t been a whole lot going on. Kind of just doing the day to day stuff lately and preparing for Christmas. We got our tree up and I’ve started to wrap gifts. I love Christmas time and of course the kids do too.

I have had a couple amazing emails this week reminding me why I blog and share about my family in the way that I do. So thank you to the people who sent me those, I treasure them and it helps me remember why I’m doing this in the first place.

Lincoln has his follow up stuff for his hearing this week. The paperwork said to have at least 2 to 3 hours to spend at the hearing clinic so I’m hoping we really find out what is going on. I think we will. Lincoln has been talking so much more lately. Sometimes I don’t understand what he is saying but he’ll keep saying it over and usually I can catch on. Today he was running full speed through the living room and I had a newspaper on the floor that he had kind of spread out across the living room like little kids like to do and he slid on the paper and fell flat on his back. He ran up to me for a hug and he was crying a little and saying “You ok?! You ok!?” which was just precious. Then when he’s leaving for school or when we’re getting ready to leave the house I’ve heard him saying “See ya! Bye!” so I’m thrilled with the direction his communication is moving. We’re gaining words! We were at Target, I think yesterday or the day before and there was a little girl getting out of the car next to us with her grandpa and Lincoln kept saying “Hi” to her. Lincoln’s struggle has been very different from Adrian’s struggles so I am praying that Lincoln’s issues are not going to be as severe as what Adrian has to deal with. I’ve said before, his development reminds me a lot of Sanura’s so if he ends up with just mild Aspergers like her I will be a happy camper!

Adrian has had good days and not so good days at school. He runs away sometimes at recess if he doesn’t want to go inside which is terrifying to me. He refuses to go to some of his classes outside of his classroom. I question how much he’s really being pushed to work hard. It’s a delicate balance I think to keep him where he’s moving forward academically but yet the teacher is trying to keep him happy and cooperative. It’s tough, I have trouble getting him to sit and listen when I try to do stuff with him at home. Adrian is talking more at home I think, when he feels like it. He is still asking for the playdoh toy that he wants for Christmas each day which I have carefully wrapped and hidden in the basement already. We would love to put the presents under the tree but I have a strong feeling that I would wake up one morning and come down to find Adrian opening all the presents so they will stay hidden until Christmas Eve.

The girls are doing really well. Nevaeh is doing addition and starting to read more and more. Sanura is excited about science recently and has told me she wants to be a surgeon when she grows up. She asked to research what types of surgeons there are so we did. It’s fun to watch her dream about the future and watch her pretend to be a surgeon.

For me, not too much new. I’m just trying to keep up with homeschooling. It’s a lot of work, I knew it would be and it is but I really love it and I’m already coming up with ideas for next year to build upon what we’re doing this year. I keep debating starting a homeschooling blog where I can share more about what we’re doing, still deciding if I want to maintain two blogs.

I’m sure I’ll have an update about Lincoln’s hearing in the coming week.

Did you see this video yet? My friend shared this on facebook:

Happy Halloween everyone! Here are the pics of our family:

Ironman (Adrian)

Whoopie Cushion (Lincoln)

Super Girl (Sanura)

The Cat (Nevaeh)

All the kids together:

I can say autism makes it a little more difficult to trick or treat. Adrian does not understand when people just hold out the bowl of candy for him to take one. He tries to take a huge handful. He doesn’t say thank you or trick or treat even though we’ve worked on it so I try to say it for him.

The kids had a good time. We just went to a church down the road and did trunk or treat there. We usually go visit family so they can see the kids costumes but this year with the move we don’t know anyone so it made me a bit homesick.

It appears that the comments are not working on my blog. Thanks to someone who sent me an email this morning I am going to get this looked into and will note it on a post when it is fixed. Meanwhile I can always be contacted at my email, facebook, or twitter and you can see that information on my contact me page

Sometimes the mail can make our break your day. Yesterday when I went to get the mail I saw a envelope from the clinic in Iowa City that did Sanura’s evaluation for an autism spectrum disorder way back in February. I had gotten reports from almost everyone who saw her but there was no final conclusion enclosed in the packets. The impression I got when we left that clinic in February was that there would not be a diagnosis for Sanura.

Sanura has always been a quirky sort of kid. She threw some tantrums at school that sounded like a possessed child and they lasted longer into her childhood then is socially acceptable. She’s never really had a best friend and she has had some issues with teasing-among other social/emotional issues.

When I opened the envelope I was surprised by their final report. Sanura was diagnosed with mild Aspergers syndrome. When we went in I was prepared for an Aspergers diagnosis because ever since Adrian was diagnosed and we learned more and more about the various autism spectrum disorders we spotted a lot of the characteristics in Sanura. When we left the clinic with no diagnosis I felt good about it. Now that apparently we do have a diagnosis I surprised myself by my reaction which was pretty much no reaction at all. Sanura is Sanura…she has always been who she is and I just love her. Quirks and all.

When we decided to homeschool our girls we didn’t really talk to anyone about it. It’s kind of a controversial thing to do and I was nervous about my ability to do it successfully. I highly, very very highly, value a great education. It’s extremely important to me that my children live up to their very best potential when it comes to education. As I watched Sanura go grade by grade through elementary school I saw her self doubt increase, her self esteem decrease, and her need to please her peers starting to emerge. Pleasing her peers is not something I wanted Sanura to be concerned with. The best thing we could think of to do was to pull her out, homeschool, and try to build up her self esteem the best we could so she doesn’t start searching for acceptance in the wrong places.

So far it’s been a really good experience and I’m happy with the route we’ve taken.

Meanwhile, it’s hard to think that 50% of my kids have an autism spectrum disorder. Who knows about Lincoln, truthfully his development reminds me a lot of Sanura’s. Either way, one day at a time, we’ll figure it out and just keep lovin’ them.

Today is Sanura’s birthday, she is 11 years old today. She’s beautiful, sweet, quirky, funny, artistic, and best of all she’s my daughter!

I was telling her about the day I had her. How when the doctor put her on me I thanked God and said how beautiful she was. The poor thing, with her smashed to the side nose and messed up hip from being cramped up inside my belly. I was young and I didn’t know what I was doing but we got along ok and she is just an amazing little girl.

So as I always like to do on their birthdays….I’m going to share some of my favorite pictures from the past:

Being a big sis:

I’m looking forward to spending as much time as I can with her and watching her grow up. There is nothing better and there is not a thing I would rather be doing.