He is in My Heart

Today I gave a presentation on Hezzie. It was for the children in his program to better understand him and how his brain works. I had asked that parents be present, and well none stayed. The one kids nanny was there, she is always there. I think it went pretty well, but one kid was being a bit rude.
It was hard to put the presentation together. Not technically hard, but emotionally. As  parent/caregiver I know all these things about my child, but when it's ALL there in front of you it hits you in a certain way. A way that just makes your heart kind of leap out of your chest and sink all at the same time.

I could see at some point it was becoming hard for my two children who were in class. They didn't look embarrassed or uncomfortable, just sad. They've said some of the kids have made fun of Hezzie when he is not around. It is upsetting for them. They know Hezzie is not what someone would consider an ideal student, but they have always known what he as been through. But, it's not just the kids making this transition hard. I will leave it at that.

Lately Hezzie has been extra cuddly. Oh, it warms my heart. He comes up and covers us both up with his Star Wars comforter on the couch. We will sit there and read, or just watch TV. That is another thing, he is now wanting me to read to him more. I love reading to him. Now he is trying more to read. He has already earned two awards at the county library and we are working on some other reading challenges, most of the kids are. They are actually pretty fun to do.

I am exited for the day he is reading completely on his own.

Love, Momma

You Smell

Today I had an initial IEP meeting for Hezekiah. I knew that him being enrolled in a charter school was going to change things, I just not know it was going to be so hard. That hard part has been him transitioning. He is overstimulated and overwhelmed. The program director of the enrichment site is having a hard time with him, and frankly does not seem to be understanding. He is not attending one of the days he is supposed to be because of that. He really isn't even aware he is not wanted there.

The other kids seem to be doing okay. Joaquin is often frustrated with feeling like the site director is answering questions for him. Oh, the life of someone with Autism. I hope that gets worked out soon.

The stress and anxiety of all this is very frustrating. I have thought about throwing in the towel and going back to a private school affidavit. You know hour to two hour commutes to therapy sessions. Running out of food because traffic is bad, and loads of gas money. But, then there is comfort of low stress and virtually no anxiety. It would just be another sudden change in our life.

Right now I just want some blankets, my tv and nachos. I guess I can settle for something else to eat. Time to quiet the mind and the worry.

Love
Momma

Joaquin and Baseball

Joaquin jad his first baseball game yesterday. He tried his hardest and hr played right feild. It didn't see much action. But, when it did I think he got nervous. The center feild ran to the ball and harness it to Joaquin to throw. It was sweet. 

Joaquin is certain situations is noticed my different socially and emotionally. I think a couple of the kids have picked up on it. I talked to the coaches wife about his needs. 

He likes playing on a mainstream team and I do see him improving over this season. It really is amazing his he powers through and doesn't complain, he powers through it all. Love this kid.

Tuesday is Zoom Day

I felt like I haven't been home all day. This is serious, usually I can watch 50 episodes of SVU in a day. Okay, not really. Joaquin had an AMAZING OT evaluation today. I'm beyond pleased, now waiting for approval for him and Hezzie. 

Then we had Hezzie had as speech evaluation. Which wasn't surprising since I kind of knew what they were going to say. So here is to hoping that this get approved fast. So then the hour drive home ended with picking up Dexter so he could go to Creative Writing Group at the Library. I picked up some groceries, are dinner and then went to the Girl Scout Volunteer meeting. Hip Hip Hooray I won the drawing for a free pie! 

^^^ That is the paint job for the Girl Scout House, oh how I love it! 

Tanni and Joaquin playing with Legos. Life is pretty grand today!

Make memories!

5 Things Not To Say to New Spectrum Parents

1. He/She looks normal.

     Not all challenges can be seen on the outside. This is something that is a big misconception. 

2. But, he/she talks.

   Like most challenges, there is a whole spectrum of the childs abilities. While some may never communicate, some may talk later or need a communication device, while some may ramble on about one subject or two. 

3. I think you're making this up.

   Yes, believe it or not people do say this. They either believe you're overreacting or jumping on the latest "disability fad." Most parents don't want their kids to face extra challenges in life. (I say most, because there is a controversial mental disorder where some people make their child sick.)

4. Stop using your kid as an excuse not to see me.

  You have to realize that along with this diagnosis with Autism or Aspergers the child may have sensory issues. Actually, there is a good chance that the child does. So until meltdowns can be managed, it's easier for the parent to take baby steps. Not only that, some kids have  a lot of therapy appointments. You probably have no idea how much your friend would enjoy adult time.

5. He/She will outgrow it.

  If it were as easy as waiting out bed wetting. While certain traits may subside, other traits may linger. The child may learn to make eye contact but may never learn to manage anxiety. Some may potty train later while other may never. Nothing is black and white, a lot is grey.

Sensory Sunday

My kids, even the big ones love some good sensory play. Here is this weeks theme...rice. We are going to use and play the heck out of two pounds of rice.
I dyed the rice with gel food coloring and rubbing alcohol. I put it in a little round tub with spoons and a measuring cup. Hezzie went to town. Maggie loved it and so did Tanni. Hezzie even sat naked in it. I set it up a little different today.

Salutations 2012

A few snippets of the year

Hope. 2013 is full of blessings and wonderment....


Love
Momma

How the Grouch Ate Happy

I love my son. I love him and he's only four. I love him and he is irritated by things that irritate me. I love him and he is tired of getting his head poked and stabbed. I love him and he's tired of one eye not working right. However, he needs to be kind to others when he's irritated.

This morning Jimmy is taking him back to Loma Linda for another doctor visit. I hope they don't feel the need to extract more fluid next week. There is only so much a kid can handle before they become combative.

Hezekiah is so grouchy, he can turn a happy moment into something out of a family comedy. No not that funny part, the part where you hope your kids don't behave that way. You know, where they are kicking and screaming "No!" Yep, the part where all the good parenting skills fall out of your ear. Your head spins and your voice isn't so gentle any more. Far too many of those moments recently.

Jimmy recently said he is having regrets about the surgery. This one complication is reoccurring and taking its toll. I am just praying that it's all over soon. On top of his Autistic moods, and keppra outbursts this is putting him on a whole new level of moody. I've got to put myself in his shoes and gently hold my ground. Sigh.

Here's to the weekend and hot tea!

Love
Momma

Neurosurgery Appointment

Took Hezzie to his preop with his neurosurgeon today. They explained the surgery and recovery. He will have to have his hair washed everyday until he has a smooth scar. This won't be fun for someone who is facial and cranial sensitive.
Hezzie was excited to vote in the pumpkin decorating contest that the office had. We all got to vote.
I will stay with him in the hospital for the three or four days he will be there. I may have to bring extra pillows. I want to get Hezzie a big Lightening McQueen or Mater pillow before we go so he can snuggle. I hope it all pans out.
Keep him in prayer as, the surgery is just around the corner.