100th Post! (sorry it's a long one)

Many of J's readers have asked questions about our family and J...so being the 100th post (YAH!) I thought I would address them.

1. When did we get J diagnosed or noticed that something was wrong?

J has always been a sick child since birth. He was a little slower then his older brother, but his older brother did things very early, so we weren't to concern. I think we thought maybe something was wrong around 2ish (my mom can correct me if I'm wrong) J wouldn't speak or basically ignored us. So we went through testing such as the B.E.A.R. to see if he was hearing us. He had the Cystic Fibrosis test done...everything was normal. So we believed we just had a very honory child! When our family moved to TX we had J tested again and a doctor (this is where my opinions of doctors took a negative direction) told us that J was a floppy child and that we would just have to help him with school work and he would be lazy...hahah! It wasn't until we moved to CO and had some therapist check him out that they wanted to test him along with a physic...once they told us he was Autistic with Mental Retardation, I guess they thought we were going to fall apart, but both dad and I were very re-leaved. We then asked what we needed to do and started becoming trained in all the aspects of having a special child.

2. When did we tell our children about J?

This was interesting.....the younger boys argued about when we told them...it's just natural...we never introduced J to their younger brothers nor to the older one..."Hi, this is your brother..J..." He was already family, so no need. My eldest tells me that we told him J was special around the time he was 7ish or 8. The oldest said he remembers he was on his grammy's trampoline with cousins and we came out and had a chat. We told him that J was special...his reply..."I already knew that"... So the answer, we think would be around the time our other children knew what choices and consequences were all about. J would never know this and so punishments were different.

3. How did we punish J for making wrong choices especially to his brothers?

This is a tender subject. We tried everything and still are. But his brothers help 100% in enforcing positive reaction and helping J understand they still love him no matter what. When our youngest was little (littler then he is now) J would vent on him more then the others. What we would do and maybe this will help others and maybe others will think we are crazy!...but, we first calmed the "normal" child and gave him the love he needed, then we explained that J didn't know what he was doing, this was the only way J could get our attention when something wasn't feeling good or when he was sad. We then proceeded to go to J and calm him down and tell him that hands are not for hitting but for giving hugs. Then we'd make J and our youngest hug and J was taught to say, I'm sorry. The incident was over and never brought up again. Our family has learned to forgive very fast when it comes to J and we all understand that there is a brother inside J's body that maybe right now J won't be able to communicate his feelings, but in the here after, the joys of hugs and loves will be worth whatever trials we have in the present.

4. What is personal space? Yah, J doesn't understand that...he tells us to "back off" and that's our clue to leave his personal space..but for the rest of us...it's an open invitation...The older/younger boys know their bodies are temples and that type of talk...and dad continues to have PPI's with them about being morally clean, but for J...yup, that's why he's not baptised! He doesn't know.

5. How did we make adjustments in our lives?

Dad and I never really went out for dates until our oldest was 16 and able to give medicines to J or to handle J. We would wait until J was put to bed and then start our date or go out. Or, Dad would go and get take out and a video and we'd watch it at home. There were alot of sacrifices our family has made. Do the boys regret it? I think a little here and there..but they get over it. We never left J when taking vacations. Sometimes it meant that one of the parents would have to stay with him and miss and activity or performance, and we still do that even with J being almost 20. If he's not feeling good or in the right mood, we sacrifice seeing a son perform and hope pictures or video's were taken. Is it fair...no, but life is not fair, so adjust! I'm grateful that my children have been brought up knowing about J. Our 3rd son has taken over the parenting position so we can go out on dates (thank heavens for cell phones) We are never gone long enough, but the boys think it's important for dad and I to leave at least once on the weekends. J has his own room. It's a peaceful room, he has his own tv/dvd/vcr. We've put locks on doors to help secure J's safety. When J has a wigg...it's a family event...the boys know what to do, we've trained them. Our children know that J comes first, and then we meet the needs of them. It's just how our family is.

6. How did we teach relatives or close friends about J?

This is a touchy subject. Some relatives respond as if J was normal, and talk to him without using "baby" lingo. Then there are other relatives that have seen J at his worse and still are a little hesitant to be in contact with him. I don't really have to teach my close friends about J. I tell them about him, and sometimes they have seen J in his worse moods or seen the effects of what might have occurred. I just have to remind them that T-shirts are replaceable and I enjoy shopping or that I really needed that DC!!!! I think through my comments and how I talk about J has helped them...maybe? You would need to ask my friends or leave a comment so I can ask my friends what they did? I basically tell them that he's a 4/5 year old big teddy bear, trapped in an adult body. When he's mad or not feeling good...J lets us know!

7. How do I respond to those individuals who might comment negativity about J?

I definitely have to bite my tongue. Sometimes I have to call my mom or a sister so I can vent and not blog about it! or maybe I change their names on the blog :) I have to think, that those people are just ignorant and need to be taught to love my child. I had one person that judged J wrongly and if I didn't have a testimony of the gospel of Jesus Christ, I might have gone off the deep end...but I know better. So I just smile and give J more hugs and kisses.

8. How do my children respond to those individuals?

They usually tell them to knock it off. I think when they were younger it was harder. They would have to endure the making fun of "retards" on the playground...and it was usually brother #3 that would tell them to knock it off or else....(fist were up)...heehee! Knowing that there were 3 watching out for J, they never had any encounters that they couldn't handle. They still get upset when people stare, I just remind them to smile back. Sometimes when we are in "fun" moods, we tell those type of people that if they continue to stare, we'll start charging admission...Humor works miracles!

9. How do I calm or re-direct J?

I was taught by wonderful therapist right when he was diagnosed at age 6ish some techniques that worked. 85% of the time, J can be redirected by using a calm voice. Verbal cues such as "quiet voice", "hands are not for hitting, hands are for hugging" are a life saver. We were just introduced to a new cue that a teacher brought to our attention, "do you need a break"....awesome!...Being positive is the key and keeping your temper in tact is a major part. Now don't think I'm quiet all the times, sometimes my temper gets the best of me and usually results in buying more T-shirts. If J is upset about something, I try and get his mind or thoughts to another subject. The more calm I am, the faster his temperament calms down. When we have to do a CPI or what they call here MAT (I think) Dad takes his legs (J is very skinny, but stronger then an ox!) and I straddle his middle with his hands under my legs...not putting all my weight on him. Then I coax his head or rub his temples and get his attention by either singing or calling his name. Once he comes "out" of it, I then tell him to take a deep breath (remember I'm not on him completely, he doesn't know this...so please don't tell J) and then we count to 20. About the time we get to 10, Dad lets his legs go and I'm still rubbing his temples or fixing his hair. At 20, I ask if he's okay, then we say sorry to whomever needs the apologizing to, and usually 90% of the time, he then lays on my lap and hugs me. There was also times where J would say "I hate you"...this hurt worse then you could ever imagine. I would just always respond with "I love you J"..eventually he stopped, but J knows he's loved! Whenever J would say something that might be inappropriate, we simply ignore what might have been said, and say something more positive or talk about something else...Swear words are the worst, but we just try to say something similar to the text or tell J that isn't something we say. 70% of the time it works. :)

10. How do I wake up each morning knowing it could be a doozy of a day?

I do have other children that need my love. I'm not perfect, I do feel down or wiped out. My emotions can get the better part of me. But, then I realize, who is going to take care of J? That's my job. Dad works and when he comes home we switch off, even when Dad has been working long hours, he takes his turn with J. I've been told by very wonderful parents, that there is light at the end of the tunnel and that my Heavenly Father knows my needs and must love me very much to send such a special spirit to our home. This is what gets me up in the morning.