Being okay with being happy....

This little boy seems to get it, why is it so hard for me? That smile...that face...this little boy. He is the reason for so much in my life...the source of a ton of sleepless nights, worrying myself sick and a lot of unresolved guilt. But he is my light...my purpose...my joy. This little boy has taught me so much...I think he has taught a lot of people a lot. For one, don't underestimate him...

So...this has been a week we have waited for... Zachary has been in school nine weeks. Last week we had his parent teacher conference and got great reports. While we were thrilled, not surprised. He is a smart boy, loves school and is doing great academically. At the first school ARD (IEP in normal states - individualized education plan for kids with special needs), we agreed to have him completely re-evaluated and to meet again in 8 weeks with results...then create an ARD around that. We have also taken him to BAMC (major military medical center) for the same tests to be run. We had an idea of some things, but really a lot was a shock...

They did a lot of the same tests as CA. He was given the ADOS to test for Autism. Zach didn't qualify here. His language skills are too good and his social. While he has deficits in social, he has the desire to be social. He was tested for Aspergers....he was scored as highly probable, but not conclusive and will be retested in 2-3 years. We are on the fence with this one. He has a lot of the criteria for this one....very smart, great memory, interested in single subjects and topics...ones that are "abnormal" for a child his age (maps, GPS, weather). This is referred to as restrictive behaviors and interests. His social skills again trip us up...he is lacking in this area, but he has a desire. So that leaves us with the glorious label of PDD- NOS again...basically he has some but not all of the characteristics of Autism or Aspergers. The big change is according to the school and the battery of tests they did on him, he no longer qualifies at the school as a child with Autism. PDD is a diagnosis that will stand and does put him on the spectrum, but basically they are saying it isn't impacting his ability to go to school and perform at this time. HOLY CRAP! We didn't see that coming.

He will still be getting speech two days a week to work on issues in his speech that are still behind or not well developed...also to work specifically on social skill building. He is still tagged as in special Ed as a child with PDD. But, he will receive no special accommodations. He is functioning in a regular kindergarten class with 19 kids and doing well....no, I can't lie, he is doing great!

So why am I not happy? Because for two years I was living with a lot of fear, guilt and worry. Living under the cloud of Autism and what that meant for him and really for us. The hours and miles of driving for therapy and school. The therapy in home. The schedules, charts, transition work. I could go on. I didn't see the light, I just kept going because I knew I had to do what I could to help him. To me there was no choice. He is my baby and I love him...that is what you do when you love someone, you go to the end of the earth for them. In that, I never really saw that he was going to be able to do this. I just couldn't see past so much.

At age 3 when he was diagnosed it was a lot all at once. A sweet, loving, beautiful little boy was told he had a problem we couldn't fix. We had little to no services where we lived and I had no idea where to start. I had a newborn and a husband gone a lot. I wasn't in a place of seeing rainbows...Zach was primarily echolalic...he repeated what you said to him back to you or repeated phrases he heard somewhere else. He walked the perimeter of the yard and park looking out of the corner of his eye. He could watch water all day. He had tantrums and outbursts if we went a different way to the park or if we went to the commissary and he thought we were going to the BX. He never played at playgroups and it became too painful to go.

His test results in CA weren't good. His IQ was 71, borderline Mentally Retarded (below 70). It wasn't a pretty picture.

I knew we had a lot of work to do and so we did. He was potty trained on Columbus weekend. He started a private preschool in Palmdale in the 2 room as a 3 and moved up after the above mentioned...he started speech therapy at the public school and then entered their special ed speech program...then one on one speech with Miss Gerry. He went to summer school. I tried things like gymnastics...We finally got him ABA therapy at the end of our time there. We worked a lot in the house on things. I struggled with play groups and things with friends because I didn't have a ton of friends and I never felt like anyone was willing. But regardless, we did what we could. And we had great people that helped us on this journey...

When we moved here this summer I thought things were going to be awful with school, but he has adjusted so well. One meltdown in 9 weeks that the teacher said was bad...otherwise he hasn't cried or flipped out at school. He has been able to do the work without modifications. Eats in the lunchroom and even goes through the lunch line. That is huge considering he is the pickiest eater. He handled the fire drill with no issue...goes to the specials and never complains that one day is computer and the next it is PE. All things have been positive...

We did hear over and over that he is distractable...wiggles, fidgets, impulsive. They can't diagnose ADD at school because it is a medical condition, but they said they think he has it according to the tests they did and we also had BAMC do it...we will seek medication if he does to help him keep that distraction in check.

The big part of the testing was academic...they did a complete IQ....He beat his CA score by 41 points. I won't go into the details on here of the breakdown...off the charts in some areas. Especially reading at 133! They then did a comprehensive reading test on him because he scored so high...he is five and the test is designed for 6-18 year olds...again above average. When they compiled his tests he was equivalent to a 7-8 year old in most areas except spoken language (his pragmatics and syntax are not the best).

In other words this little boy is very bright. All that know him, already knew that, but none knew how much. Kinder doesn't have gifted classes, but he will be tested in the spring and all signs say placed in gifted in 1st. I think that will be a huge help too.

So...

Why not happy? I think I am in shock. I am so used to hearing the bad...the concerns...the issues we have to work on. I have never had a group of people tell me he is doing so well we can't qualify him for things. What? Really? I am waiting for the other shoe to drop. I am trying to be happy at his success and knowing all the work we have done, he has done, therapists and teachers has paid off. He has learned how to control some of his problems and we have helped teach him ways to cope. He is learning the correct ways to interact and that it is fun. He has matured. He has flourished in areas that have given him confidence and independence. He is now getting occupational and speech therapy 2 days a week here privately, in soccer and swimming...so many things to see and do here and keep him active. NO, he isn't cured. He still has a diagnosis and is on the spectrum. He might also now have ADD. But he is able to function with it!

I am so thankful tonight for now knowing that he has come so far...seeing it in black and white. I watch him every day and I am amazed at this child. I couldn't have asked for a more incredible person to have as a child. He is remarkable. I am so lucky. And I wouldn't change him even if I could. I hope I can take a step back and just enjoy him more now...not stop working, but now I can know that the work is paying off and we see the light.

That little boy with the big smile knows that there is a lot to be happy about and to everyone that has helped get us here....THANK YOU.

Pumpkin Patch....

Well we got out of the house today finally and headed to the pumpkin patch...it was in a small town called Garden Ridge, close by our town of Cibolo. We had a great time at this cute patch at a church. Nice people, safe and lots of pumpkins! The kids both were so excited and ready to go bright and early.

We enjoyed our Waffle Sunday breakfast...new tradition here. Had some time to enjoy the pretty weather and open windows (I get that from my Noni, I love it). We had a fun time and no issues, which is always a plus. Got a trip into Target as well...Zachary needed a new watch...the one I bought him on his birthday last year wasn't holding a battery and kept dying....and that isn't something that he deals with well, so we thought replacing it would be best. They didn't have the one he had, so we got a new one...Do you know how hard it is to find a real watch with hands for kids these days? Hard!

We then came home, Erin napped, I read some in my book and the boys played a bit outside. Brandon and I had a yummy steak dinner and the kids ate on the deck since it was so nice...we then topped it off with ice cream out...seriously way too much excitement! It was a nice day and we tried to fit in a lot since we hadn't been out in about 9 days. Another busy week ahead with appointments...doctors, Zach's second ARD (IEP), therapy, and so on...so I best get to bed! Enjoy the photos!

As always last to first...

Perspective...

A few weeks ago I heard about this family who had just moved to this area...the wife was battling breast cancer and pregnant...this is a link their blog and the tearful, brave story of their life...it isn't a happy ending, but it is a testament to survival, love and strength. I have followed it and continue to pray for them and draw strength from them....today the husband talks about another military family suffering loss while still grieving his wife's death. Pretty remarkable...Gives me perspective when I have had a hard day and need that perspective...

http://bandssullivan.blogspot.com/

Today...

Outside my window...cooler temps and a breeze today...no fall colors on the trees yet, but we are hopeful!

I am thinking... about how many fun things I want to do once I am 100% again...pumpkin patch and outings with the kids.

I am thankful for...Erin so far (knock on wood) feeling okay and that we are hopefully at the end of this bug.

From the kitchen...chicken, rice and zucchini soup...

I am wearing...a brown jogging suit and white top...

I am going...to start dinner in minute and get the kids busy on something...

I am reading...Traveling with Pomegranates by Sue Monk Kidd

I am hoping...to get some scrap booking done soon....I am so far behind that it is scaring me to think of working on it....get organized and feeling less frazzled.

I am hearing...the kids asking me a million questions in the other room...

Around the house...there is a lot undone things...a week of being sick can make for a lot of work. Need to clean, organize, grocery shop...long list.

One of my favorite things...the change of seasons and start of fall...wish the temps here were a bit cooler, but excited about the fall....I am loving watching Zach love school, learning and doing his work. He is excited to do his homework and reading. He is showing some good improvements in some areas...He even goes to his room and pretends to teach school to a pretend class or makes us be his class. Erin is talking up a storm and able to communicate really well. She is starting to enjoy school and making her own friends there, which is super sweet.

A few plans for the rest of the weekend...pumpkin patch!!! We are hoping to go this weekend!

Oink Oink!

So the swine flu paid us a visit...BLAH!

We aren't quite sure how this all happened. Zach was sick for a few weeks off and on and was diagnosed with several ear infections...but in the end we are now wondering if he had this mystery flu. Well I know for sure I did. I started to feel bad last Friday...nothing awful just the start of a cold...thought it wasn't too bad...Sunday I felt pretty darn awful and Monday I woke up feeling like ASS. No other word people...I felt like I had been run over by a bus...headache worse than the worst hangover in college (not that I ever drank in college mom and dad :) ) Bad sore throat...lots of stuff being coughed up as well...sorry to share...neck ache, earache...fever, the works. Brandon told me I looked like crap and I headed to the BAMC ER for my 4.5 hour wait to be told, yes you have H1N1. No tamaflu for me...I had it apparently longer than 48 hours in my system...so if you think you are sick and get a fever, go early to get drugs! HA HA. I got tamaflu for Erin though in case she gets sick...she isn't taking medicine well, so this has been fun. I threw up all Monday night, which was a great bonus. I was laid up in bed the rest of Monday and most of Tuesday feeling just plain awful. Poor Brandon got sick Tuesday...he had been feeling ill all weekend too, but the bad day hit him Tuesday....boy were we a pair of pathetic people. I can't even tell you how sad it was to see us that day. I still can't clear my left ear...In the end I survived and am no worse for the wear. It just wasn't fun...

My heater didn't work when we tested it out last weekend....so that was a repair we had worked on Monday and Tuesday...$275 later that we will deduct from our landlords rent check...oh he left for Turkey with no forward info for us...lovely. My washing machine in making noises in the fill part of the cycle and flashing F1...apparently it is a recall....fabulous. For those of you that know my washer history...not good...I had a lemon before and now this one seems to be acting up as well. Thankfully we got the extended warranty because of the above mentioned issues...so that man is coming tomorrow to work on that...thankfully. I hate being without my washer.

All in all this week has been a blur....I know it is sad, but it has come and gone and I am just glad to be up and about today a bit...I had an appointment on base with a doctor....all went well with some medical issues and concerns I was having and I liked this doctor. Next week I am off to the neurologist to look at my crazy right leg that has been partially numb for 11 years...if you don't know, long story...so we shall see what comes of that. I am glad to be part of the living right now and looking forward to my ear popping so I can hear again. :)

Wash your hands!!!! No pig flu for you!

cupcakes and painting...

Here are photos of the kids making Halloween cupcakes the other night before illness struck the house...

Here is Zachary painting the yellow guest room into a nice tranquil green! He did a great job helping dad....

Here's hoping to healthier days here for all of us!

Lately around here...

Just wanted to throw on some recent photos of life here and some updates from us...

We have had lots of sick and yuck around here. Zachary was sick a few weeks ago with a double ear infection, cold and fever...then Wednesday night he was up crying several times saying his ear hurt again...took him to the Doctor and they said it was swimmers ear in his left ear...he does swimming each Wednesday so we thought that sounded right, but still he seemed too sick for that...and sure enough he had a fever by the time I was at school to pick him for speech on Thursday....I usually get him at 2:30 and he was already up front with a 101.9 fever. So Friday we took him to school only to be told he couldn't stay...not fun since he wanted to go do the big jump rope for heart thing they had been working on...he then went to BAMC (brooks army medical center) yesterday because he still had a fever and was still saying his ear hurt, but it was the other ear...turns out he has an middle ear infection in the ear they said was swimmers ear. UGH! I am a bit under the weather myself and so is Brandon, but we are trying to keep Erin healthy and not let it show. I woke up with a sore throat and head ache and Brandon has felt yucky. I also have something going on with my knee that literally makes it sound like snapping celery...awesome I know....It happens to be in the same leg though that I have had issues with for about 11 years now...my right foot has been partially numb for that time and after numerous tests no answers so I chose to ignore it...well now I can't ignore that it feels more numb than normal and me knee is making strange noises and is a bit painful...so I am hoping to get the Dr. to give me a referral...I have a neuro one for the 20th, but I think it will require orthopedic too...who knows. It could be worse, so I am not stressing about it too much at this time....

I met with Zach's school psychologist on Friday...got some great info on the testing they are doing on him....they are almost done and have been quite complete in their testing...which is awesome. Right now it is a matter of getting the right diagnosis for him to then get the therapies in line with it. I am curious to see what they end up with. He didn't test as having autism by their testing of him, but when myself, Brandon and his teacher all separately filled out forms about him, they came back that he does have autism...so they will continue to look into what is the best diagnosis. Asperger's is being tossed around a lot right now...so we will see. They did redo his IQ. Two years ago it was tested and came back at 70...which is borderline MR (mentally retarded). We were thrilled that they retested him and it is now 112. Yeah! He did very well on the reading part, no shock...and they are doing further testing in that area as well. So...I am feeling much more hopeful than I have in a long time that he is being evaluated by people that care and they will find the best diagnosis that fits him.

All in all we are doing well...just hoping to feel healthy for a while and enjoy the fall! I am desperate to hit a pumpkin patch...maybe next week we will be healthy enough. :)

Went back to my new hairdresser...still very pleased. He is bound and determined to go short and blonde. I laugh at him!

Miss Erin in her new Cheerleader outfit from Aunt Amy...she loves it and the pom poms of course.
Happy smiles...
Sick Zachary having a meal in bed...he really loved the room service!

Autism info...

Just thought I would share this with you...interesting stuff!

http://www.myfoxhouston.com/dpp/health/090923_military_families_autism_help

Updates...

Well I haven't been great at updating my blog lately, because there hasn't been a ton of fun things to update. I was sick last week with the crud...low grade fever, head cold, yuck...Doctors appointments for the next two weeks on my days without the kids for issues that I have had for some time...good to be getting them checked out! We have been busy with the usual...Our weeks get a bit crazy with the schedule of things...Tuesday, Wednesday and Thursday are quite busy to be honest...Zach is in school from 8-3 daily, so he leaves our house at 7:45 and I got to pick him up at 2:45...Zach has soccer Monday and Wednesday nights at 6:30...way too late if you ask me, but then again no one asked me. Erin has KDO on Tue/Thr from 9-2, but I usually pick her up early because they let them nap on mats on the floor from 12:30-2...so what is the point? She can nap at home in her bed instead and the actually be rested! I try during those times to do appointments. Tuesday afternoon Zach has OT (occupational therapy) and Speech therapy at the same place from 4-5....it is 20

minutes from here, so I get him from school (around 3:15 is when we actually get our kids after waiting in line from 2:45) and then drive 20 minutes to New Braunfels for the appointments....a far cry from the 45 in CA, but still hard since I do all this with Erin now. She has to be woken up from her nap, thrown in the car for carpool, then off to this appointment where she and I sit in the waiting room and then back in the car and home around 5:30. Wednesdays Zach and Erin both have swimming at 5 and 5:15...leave there around 5:50 and head home for a quick change and then off to soccer...I hate Wednesdays. The Thursday he has OT/Speech at 3-4...so early pick up from school...early or no nap for Erin since we have to get him earlier than normal. Blah!

But...It isn't awful by any means. I am thrilled here he is getting OT...We chose to wait on ABA (applied behavioral analysis therapy) for a while and see what the testing results were on him and what they recommended. ABA is a great tool, but with him being in mainstreamed school and extra curricular activities we have no time for it honestly. And what he learns in it isn't always applicable to a child in a mainstream setting...always weighing pros and cons here I tell you. So in order to help him be more normal, we had to make some decisions on what to go and for the most part I think we are doing fine without it.

Zach is very fortunate in some areas that might seem strange to say...he is very cute...not because he is my child, but he is a good looking child and doesn't look like he has something wrong. So in first meeting, it goes unnoticed most of the time. He is sweet, lovable and happy...again masks other issues when people first meet him. He is super smart. The boy is reading well beyond his years and knows things that really a 5 year old shouldn't. So in school he is doing quite well in academic areas. His struggles though are there...His fine motor and gross motor skills are very week. He struggles with simple tasks, zipping, buttoning, running...He is super smart and loves things like weather, space, etc...what other 5 year olds in his class what to hear about the weather channel updates? What other 5 year old knows who Bill Marrow and Jim Cantore are? He has a hard time making friends that stick because other kids don't know how to play with him any more than he knows how to play with them...his interests are odd. He tries...really hard...but it often isn't enough. It is painful as a parent to watch and know there is nothing I can do. When he is at school I can't help him...I can't know all that happens and how to help him know what to do....I can't shield him from the bullies that he already has to deal with. I can't make the world more accepting. I have to have faith that he is able to do this...that it isn't too much and he can and will be okay....relatively speaking.

NO result yet from the testing places...school or BAMC. I am anxious to get this part done and move on to treatments and therapy changes, etc.

I do love this area and I am so thankful to be here. The rental house is awesome...the neighborhood is great. The school is great. We area meeting people and trying to get involved and busy. Sadly I signed up for a stay at home moms play group and most days they have things are when I can't do them because of Zach's schedule...But I am trying. :) And I am a ton happier here than I have been in a long time...so that is a very good thing!!

Purple Ribbons...

This is Domestic Violence awareness month and as many of you know I spent a few years in Abilene working at Noah Project, a domestic Violence Shelter. Prior to that I worked at another place in Abilene, Family Outreach where I did supervised visits for parents that had lost custody of their children and exchanges between parents that needed a mediator because they had violence in their relationship. In college I had interned at CPS and always hoped to work there when I was out of school...the Air Force life changed a lot of that, but my passion for helping victims of violence is there still and I hope one day to return to helping them first hand. I miss that work...I will forever remember the women and children I met...I often wonder about many of them and how their lives are today. Noah Project was a place that changed me...what I saw there and learned, no school books can prepare you for that reality. I don't think you ever become comfortable with seeing it. I am so grateful for that job. I learned so much and I felt helpful, purposeful and useful in ways I hadn't before. It opened my eyes to a lot...

There are many videos that portray Domestic Violence and Child abuse out there, but one artist has several on the topic and also has an amazing voice...Martina McBride. This one is geared toward Child Abuse and so moving...I know this is a sad topic, but if all of us take the time to think about the victims and in some small way to something to help people in this situation...it does help. When I worked at Noah the volunteers and donations meant the world to the shelter. I hope here to get involved with out local services in the coming weeks and do what I can to help...

So here is the video and food for thought...what can all of us do?

http://www.youtube.com/watch?v=Cmy1V1YGQe4