Stressful Day.

This is going to be more of a venting post then an informational post. As a Mom I try to remain strong, but sometimes that doesn't happen and the stress of life catches up with me. Today was one of those days........

After being up early, scurrying all the kids out the door to go to a doctors appointment, frantically feeding them in the van and sitting in a waiting room most of the morning, then going to the store with one of the boys ( which I enjoyed by the way, high light of the day) the stress just got to my husband "Josh" and I. Being a parent is hard anyways, much less being a parent to Autistic kids. Alot of times you feel more like a caregiver then a parent. Sometimes you don't enjoy it and alot of times after it's all said and done you just have to sit down and cry or drink. As a Mom I always imagined cute little kids that played with there cars and ran around the house playing cow boys and Indians. I expected what our jaded word so often marks as a normal kid, I for expected what you can consider as " In the box" you will often hear me refer to Autism and SPD that way, anyways that's what I expected, much like any Mom or Dad would. But when you get that news that they aren't what you expected, in a way it can be heart breaking. A parent never dreams of the challenges that are ahead of them with kiddos like ours. We ended up with kids that are "In the circle", forget the box, they broke it.

Our frustration today was that we couldn't even sit down and eat... A simple basic need , this is where the caregiver comes into play. We had to scurry up the stairs several times to put our oldest twins cloths back on " Adriel" , alternating turns so one or the other wouldn't get so overwhelmed. We spent all of 40 minutes or so doing this and this is after listening to melts for a few hours because of being gone to the doctors this morning and off routine. ( thats another issue for another blog) While rushing up and down the stairs we were also alternating turns with dealing with a whiny puppy, also an investment for the boys Autism, hopefully soon to be service dog. But after doing this my husband and I finally got sat down to food that was cold and soggy, both really too exhausted to get up and warm it up we just dealt with it and ate it like it was. When it came time to get the kids up, to be truthful we didn't really want to. We felt like we had literally just got sat down, but the river of life doesn't stop moving for anyone, even if you don't want to move.

Anyways we get them up and work on supper, for a brief moment then I slipped into depression thinking about how crazy it was that we did this on a regular basis, washing there sheets almost daily because they don't want to keep diapers on. Scrubbing poop off the walls and cribs because they played in it. Barely eating and sleeping to take care of them and I remember I have to keep my head up and my heart strong. I mean after all, if I don't stand up for them and fight for them and push myself now, how good will I be to them when they really need me. Plus I think what can I do, I can't do a thing, no one else is going to do it for me. I try to remember through me the Lord can do everything I just have to allow him. But thats a hard lesson to remember when your scrubbing poop and pee off stuff. Oh well that's our life. Thats the bad side of all this.

My Shoping Trip with Mathias.

Very rarely do I get to do things like this and today I actually didn't want to take any of the kids, I just wanted to leave the screaming craziness of our day behind for a little while. But knowing my husband wouldn't get a break I decided to take the most complicated of our twins, Mathias, AKA Goo, AKA trouble maker. I took him grocery shopping with me.

We headed to the door me repeating bye bye to him and we headed for the van. When I loaded Mathias in the van he seemed excited to get to sit in big brothers car seat, a glow in his eyes.
That glow got even brighter as I closed the van door and hopped in. He looked around realizing it was just going to be him this time. He started chattering in his own language. We got to the store and I saw the spring flowers out on display, Mathias and I took a look at them carefully inspecting them. He violently ripped the head off one of the flowers, I quickly corrected him and said " oh no we have to be easy, see just like this", gently touching the flowers to show him how to touch them. We looked at each different flower, him repeating flower, oww flower over and over again as we looked at them. Next into Winco straight to the produce section where I browsed the fruits deciding what this weeks selection would be for us. I went along showing Mathias each fruit and talking about it with him. He thought the nectarine was an apple and repeated it alot, despite me correcting him. Then off to get bananas... Goo chatter bananas and apples, bananas and apples. Then we passed oranges, Mathias excitedly exclaimed ball and proceeded to throw the orange on the ground. As we made our way through the store and looked at stuff, Mathias decided to get comfortable and kicked off his shoes, a lady came buy and picked them up handing them to Mathias. As she walked away Mathias threw them in her direction and laughed, I tried my best to correct him but couldn't help but to laugh at how silly he was. We talked all the way through the store about stuff and he just seemed to bloom, his face glowing the hole time. He rewarded me by often coming close to hug me or puckering his lips to kiss me. This made my heart fly... he even held my hand at one point. Amazing how something you dread so much can become actually a very pleasant experience. I'm glad I took him. Maybe trips like this will have to happen more often.

Adriel and Mathias Genetisist appointment. January 19th 2011

Adriel ( Autistic)

Mathias ( Autism Spectrum)

In the midst of the Autism diagnosis we have been on the hunt to find out why the boys have Autism in this hunt genetic testing was done to see if there were any added or deleted chromosomes. In the boys case the test came back with a missing chromosome 10, we were told by the doctor that this was normal, but he would refer us to a geneticist if we liked. I insisted that we see one because even a portion of something in the boys genes missing doesn't seem right to me. So after a long awaited call from Dr Hood, we got things set up and running.

At the appointment again the normal weights and heights. I don't remember the boys heights but I do remember there weights. Adriel was 32lbs and Mathias was 29lbs. Then in to talk to the doctor and get questions answered. The doctor explained to us about genes and how they worked, she examined the boys and we talked for a bit. The doctor informed us that the reason why they consider the piece of the choromsome that the boys are missing normal is because they don't really know enough about it to know if it does actually cause health problems that the boys are having. They are still learning, so we proceeded to ask why the boys have Autism. The doctor explained to us some of the possible reasons but said that only about 25% of the population that has Autism know why. Most of the time it's unknown to why someone has it. With knowing those statics she asked if we wanted more tests ran, blood and urine to test for metabolic differences or vitamin deficiencies. She again reminded is this might be a wild goose chase. Josh and I agreed though and requested the testing be done. They asked if we could do it on just one and we agreed this would be acceptable, if something come back on Adriel ( the one we had the tests done on) then they will test the other. In the discussion with the geneticist she did notate that the missing part of the chromosome was the same in both kids and asked if we knew for sure that they were fraternal twins. We just assumed they were, we couldn't remember being told otherwise. So we thought they were. The geneticist is now question that as it is very odd for the exact same piece be missing in 2 different individuals. ( Keep in mind fraternal twins are basically 2 separate eggs/ separate people. Where identical is basically 2 copies of the same people or one egg that split into 2 of the same egg. ) So she believes they might be identical. I'm not sure what I think as Mom. I believe they are fraternal, but only time will tell.

So after a long discussion with the doctor the lab tests were ordered and we started the testing. They took blood from Adriel who was a trooper and then wanted us to get a urine sample. We meant to get it sooner rather then later but frantically ended up getting it a few days later during Ellies appointment, but thats a story for Josh to tell. Anyways we got the urine sample and now we wait. We were told that the tests will trickle in one by one at different intervals. But we will know the results on all of them in three weeks. We are honestly hoping to be that 25% that knows why. With all of our kiddos have developmental delays or motor delays we feel theirs something going on we don't know about and we need to know what. No matter what the results are we are a family and we are in this better or worse. We will take it as we always do, one minute at a time and keep praying.... I mean, God already knows the answers, so why worry.

The good, the bad and the melts. Introduction Blog.

Hey everyone and welcome to my blog, I started this blog because I’ve often found that there are things that I just need to address, vent about, or help people understand that I can’t do on my family blog spot page. So here it is. In this blog you will get to see an inside view of what life is like with Autistic twin boys and the struggles we encounter every day. You will also get to see a view of the struggles we endure with our oldest son who has Sensory Processing disorder and a bit of the heartache and fear we have with the newest Hodges addition Ellie, and her fine and gross motor delays. Also you will get an inside look of how it is for the whole family as well as occasional vents and blogs from a Dads perspective. So here goes. I hope this help clears up some of the misconceptions and the stress that is involved in raising kids with Autism or as the blog title states The good, the bad and the melts……