Guilt...

I'm hesitant to write this because I don't know what can come out of it, other than for purposes of just venting. But, once I post this, I'll probably have guilt for just deciding to blog it anyway.

We're in desperate need of a second income and I have a VERY good shot at a job opportunity that I've been interviewing for. I've got a 3rd interview coming up (yup, a 3rd one) and they seem to like me. Hey, after getting a 3rd interview, that has to account for something, right?

But, b/c of my son's challenges, I've been trying to look for daycare for special needs children. My heart just starts beating faster just from blogging this, just from the stress of the idea of it. The other day, I went to a forum, just asking what other parents do in a situation such as this, where they have a special needs child, and how do it, if both parents work, and how they get by, and what they have done for child care for their special needs child. Someone replied, "please take care of your own children". I felt HORRIBLE! I felt like I was an incompetent parent, unable to care for my children. It's NOT that I don't want to take care of them, but what can we do if we need a second income? I don't want people to come back and more so, even bashing me for even having children if I am unable to take care of them, because that is NOT the case AT ALL. I DO take care of them (and I take GREAT care of them)...like no other loving parent can, but the fact is, my children are here, and I thank the special someone above that they are here. My son didn't ask to be born with special needs. It was something that happened, and we do what we need to do to survive. It's not that I WANT to work, but for now, I think it's necessary to have a 2nd income. I think it's healthy to want to work.

No ONE likes to have other parents raising their children, but we live in the Silicon Valley, where housing and renting is INSANE and costly. There are so many things that we could have done differently, but the fact of the matter is, this is where we live, this is the situation we're in. I am NOT asking for handouts and/or pity, but I am asking for a little grace to shed some light on what we can do to survive w/out stressing every moment of the day over our financial situation.

I'm SO excited to have interviewed, as I believe it is always good to interview even if you're not proactively looking...just for the practice and just to see how much one is still *marketable*. I am a GOOD person, who is helplessly flawed, but I do believe in making each day the best I can.

I am overwhelmed, I am stressed and more times than I'd like to verbally admit, I would like to know that someone is watching over us, guiding us, and paving us to have some breathing room. But again, the guilt overpowers me b/c as a parent of a special needs child, I feel like it is my fault (although the doctors say it isn't) that my son has special needs. I feel like things I have done in my past, my son being born with special needs was my punishment. I know that's a horrible thing to say, but I'm being honest and I couldn't live my life w/out being as honest as I can. It's life, right? Nothing is meant to be perfect, just little rocks and thorns to snag our way down the path of life.

Until another day...

"Thass Nah-nah"

My son knows who we are (mommy, daddy and sister), but I never asked him about his "Nana". My folks were over visiting today and so I did the "who's that" game so he could say who we each were. When I pointed to my mom and asked him who she was, he said, "Thass Nah-nah!" very proudly! Yes, he's 4 years old, and he has been around my parents many, many times, but he has never called them by name. It was a true delight to hear my son say who exactly my mom was to him! He's speech delayed, so it is a GREAT accomplishment for him and a PROUD moment for us. It doesn't take much to bring a smile to my face.

On another note, I'm tired. I feel absolutely drained. I do have a tendency to exaggerate, but one of my resolutions in my adult life is to try to stop adding adjectives to make my life *colorful*. I could have said that I'm just *drained*, plain and simple, but *absolutely drained* definitely fits how I'm truly feeling right now. My mom suggested I take some iron to give me a little boost. I think I need it.

I do have a pretty big thing going on right now that I'm feeling pretty overwhelmed about. (There I go again, adding those extra adjectives). But, I've got a lot on my mind and I wish I could be more happy and excited about *it*, but I can't. I was hoping that 2007 would bring me great things, and I think it is about to, but I don't know how much I can be excited about something like this at the moment. I'll try to explain another day, when I feel like I've got a bit more energy.

Until another day...

He told me to Get Out...

Last night, as many nights, my husband and I discussed the possibility of our son being autistic and that *possibility* is still looming in the air without a *formal* diagnosis. Doing research and making (almost) daily calls for resources has become my most current *obsession*. I want to know what resources are available to us, and research on and off throughout the day.

My mother called me last night to let me know that there was a segment on "60 Minutes" about a family with autistic children. Right when I was about to tell my husband that my brother had recorded the episode for us, he interrupted me to tell me to watch was on "Home Extreme Makeover"...and it was a family who had 5 kids, all diagnosed with being within the Autism Spectrum.

We're still coming to grips with the possibility, but we're only dealing with 1 child with Autism. I could not imagine a family with all 5 kids being Autistic. It blows my mind with the alarming growing rate of numbers of kids diagnosed with Autism with no known cure, but only interventions and therapies. Our Development Pediatrician did mention that years and years before, many kids who were thought to be mentally challenged/retarded, were in fact, kids who were Autistic.

Back to "Home Extreme Makeover". So, after we watched "Home Extreme Makeover", where the mother was crying tears of joy for receiving a device that assists her son by pointing at pictures to tell her what he wants b/c he is not able to verbally express himself, I look over and my husband has tears in his eyes. He quietly gets up and goes to the our son's bedroom and he hugs my son and held him so tight, which my son affectionately receives and reciprocates the gesture. Although my son is speech delayed, he does have the ability of some speech, a limited vocabulary, but he does try his hardest to communicate with us with words.

Though his speech is delayed, I am grateful that from the 1 year that he has been in school, he has developed a bigger vocabulary than he had ever had or what he should have by this age. He is still unable to form more than a 3-word sentence together, but he does try very hard to communicate. He gets frustrated and we get frustrated too, but we keep working on it. We ask him what he wants, he points, we say the word, we have him repeat is, he says it, he repeats it again.

One word my son is VERY good at saying is "No" and "I can't". Great! Ha! On Friday, my son was being defiant and when he was being reprimanded, he ran into his room and shut the door on me so I couldn't get in. I managed to open the door, and he pointed at me and said "You" and then he pointed at the door and said, "Get out". I was in a bit of shock that he said that to me, but I admit I bit my lip to keep myself from laughing hard. I was just happy that he was talking. His saying "no" all the time is becoming wearisome, but he's managing to have interaction and a conversation with me (although, a defiant conversation at that), I'm okay with it. He's not the first 4 year old to say "no" back to their parents, so I'm dealing like any other parent would.

One thing that I'm VERY thankful for, is that my son longs for human touch. He loves to be around all of us, he loves hugs, he loves kisses and gives them right back. He loves to play with his sister and impatiently waits when she wakes up in the morning or from a nap so they can go create fun games together. I think in that respect, we are fortunate that should he be diagnosed or assessed as being Autistic, there are some traits that he doesn't have. Some characteristics of Autism is that they don't like to be touched nor held.

I woke up too early this morning and my usual one cup of coffee seems to have worn out. I washed/put away almost 6 loads of laundry this morning and I think I'm finally pooped. Thank goodness it's a 3-day weekend so my husband is home to help out today.

Well, until another time (or blog)...

DON'T Give me Bad News over the Phone, Lady!

Yay! A successful day at school. Whew! When my son has a great day, it means that I have a great day. No one knows what goes through my mind on a daily basis. No wonder the gray hair have been coming in. I would have to say that I have been scarred, traumatized by daycares and with my sons teachers. I guess today is a good day to talk about how we came to find out that our son might have special needs.

When my daughter was born, I was working for a while, but it turned out that the person watching our kids decided she could no longer watch both, but offered to watch my daughter if we could find a different daycare for our son. We found one, and as the first day scheduled to have him attend, he was there for not more than 3 hours and we got called to pick him up b/c he was upset beyond consoling and the first thing that came out of the daycare providers mouth was "I'm not a doctor, but I think your son is Autistic, you're going to have to pick him up".

WHAT KIND OF PERSON TELLS ANOTHER PERSON, especially when it's about one's child, OVER THE PHONE?? I know that there is NO *good* way to tell bad news, but how can one swallow that type of news? I had to drive over to pick him up, crying hysterically, shaking, and nauseous. That was a DARK day for us. We picked him up, got him home and immediately we made phone calls upon phone calls of where we would get any type of assistance in getting to the bottom of this.

We finally made it through the school district and got him assessed w/ a Speech/Language Therapist, then the school district psychologist and it was concluded that my son's primary concern was Speech/Language Impairment. He began attending Special Ed Day School in March 2006 and was w/ other kids who were also Autistic, but were in a more fragile state than my son. My son was very social and very coordinated as opposed to the other kids who cowered at my son's presence b/c they not keen on emotional and/or social aspect.

So now, every day, I have this wave of fear and or panic (even 1 year later) that overcomes me every day as to whether or not I am going to be called because my son had a meltdown at school and/or I have to pick him up. So, like I said previously, if my son has a successful day, it's a GOOD day for me too. I know that this can't be healthy to live every day in fear, but it's something I need to work through. I'm still trying to find a local support group for autistic parents, which I've been having difficulty finding.

This is my year to be proactive, as I probably sound like a broken record now, and I'm trying to get myself and my family as educated as possible.

I don't think my political affiliation is of any near importance to anyone, but I will say that I haven't been a Bush supporter for my OWN good reasons, but I DO have to hand it to him, for recently (as of Dec. 6, 2006) signing one of the biggest legislations for Autism research. It's a proud era for parents who are fighting the same fight, to assist us with children who fall within the Autism Spectrum.

Today is another day I fight, trying to find all resources that I can to educate myself and hopefully others in their quest to understand this.

Meltdowns...

Today was a good day because my son had a successful day at school and played VERY nicely and didn't have (what the teachers have named his *bad* days as) any *meltdowns*. I can't explain to anyone who knows me well enough what I go through on a daily basis. I'm still in the process of figuring this out with the school district, but at his last I.E.P. (Individualized Educational Plan), they had shortened his school day from 3 hours a day to 2 hours a day. My son has a habit of running off and not *holding on the rope* and staying with his class. If he sees a chance, my son will run for it. So, even though he is in school for only 2 hours a day, I sit and wonder if I'm going to get a call from the school because they've had to tell him *no* and whether or not he started swinging at the teachers or not or knocking things down because he's upset... is a daily and constant worry of mine. He had a bit of a *meltdown* on Monday, but has had a somewhat successful time for the remainder of the week, with 1 day left to go before he starts a 1-week holiday from school.

Well, to go back a bit further, my son is in the afternoon session at school. There is one boy (*X* as I'll call him) who my son goes to school with who is a bit of a bully. *X* can be aggressive, mean, meddlesome but most importantly he is a child with special needs, so I know that he has his own challenges (like my son) to overcome and just shy of being 4 yrs old, is as tall as my son who is 4 and already considered very tall for his age as it is, and is a SOLID kid. I really do like *X* b/c he's a kid, like my son, who has challenges to be addressed and worked on. Every day when I drop my son off @ school, *X* comes and greets me and shows me what latest character or logo he has on his shirt. I tie his shoes b/c when I go to the school, it seems that his shoe is almost always untied and he lets me tie his shoelaces so he doesn't trip.

Anyway...it almost seemed that every time they were out on the playground (as I had to accompany my son every day to the playground to try to prevent him from running off) *X* was targeting my son at school. I'd send my son to school every day with his baseball cap on. As soon as the class hit the playground a game would ensue. His classmate would immediately grab my son's hat and then run for it and keeping it away from my son. My son was VERY passive and my son NEVER had a problem with sharing. It was never an issue with him. He was always glad to share and if kids would take his toys, he'd find something else to play with. Well, the game with my son and his classmate escalated and I even caught *X*slug my son across the face. As a mother or parent, that's VERY difficult to witness someone harming your child! So, I just went over there and told them that hitting was NOT good and told *X* to go see the teacher's aides and *X* was put into time out. Then, my son started showing signs of aggression back, from what I believe was his way of defending himself. I, then, stopped sending my son to school w/ a hat. But then, *X* just found another item that my son had to take from him and turn it into a *game* of keeping it from my son.

It then turned out that *X* was switched from the morning session to the afternoon session, w/ my son. Right when that happened, I noticed my son's behavior changed at school and at homewith his younger sister. And the *meltdowns* at school began. I finally put two and two together and noticed that since *X* was switched, the dynamics b/t *X* and my son was a chaotic one. I talked to my son's teacher and just decided to bring up what I felt what was going on and if she could please keep an eye on the both of them and to please observe the interactions b/t them and what she felt. At first, of course, she seemed a bit cautious of my observations, but I think over the past few months, I believe that she is seeing what I saw. My son and *X* are BOTH great kids. They DO like each other, but they do have some dynamics going on and I was told that they (the teachers) keep the two of them apart during certain activities b/c, at times, it does get chaotic b/t the two of them, and was told recently that *X*'s behavior has seemed to have worsen after being switched to the aft. class with my son.

But...having said all this...today was a GOOD day for my son. His best friend wasn't at school today, and so my son settled for *X* and it was a successful day. They played very nicely together w/out any *meltdowns*.

There are other things going on today that I could have done w/out, but I'm surviving it. My main focus is my son and his successes in every day life. Today was a good and successful day, and that is what matters!!!

Until another day...

The "DON'Ts" of a Special Needs Child...

Okay, the kiddies are keeping themselves entertained with Spongebob, so I have a few moments to jot down a bit more.

One thing I learned from one of the teacher's aides at my son's school is to DOCUMENT everything. All I can say to any parent, whether they have a special needs child OR not, is, DOCUMENT everything. I carry around with me a little date planner and jot down notes every day of in re: to my son's day at his school. Be it that he's had a good day, or an "okay" day, or any comments, brief conversation in passing that I may have had with his teacher or someone I've spoken to in the school district, or talking to someone about resources. When it comes to IEP's (Individualized Educational Plan - for those who don't know what an IEP is), it can be a life saver when putting your notes together before your child's IEP meeting.

Another helpful tip I learned was, DON'T SETTLE w/ what anyone tells you. Don't let the school districts bully you, or make you feel like you can't ask for some assistance. It is OUR rights as parents AND taxpayers to receive services that we and our children are entitled to!

BE proactive! DO what you can now. Like I mentioned in a previous blog...don't look back regretting what you COULD have done, when you were darned well able to do it now! I waited a year doing the *minimal* and I DO regret that I didn't do more.

DON'T be in denial. I was a bit in denial, I can admit that, because NO parent wants to hear that there is something wrong w/ their child. Again, I mentioned before, I was sad, depressed, angry. Don't fault me for my honesty because this is hard for a parent to experience and/or go through. If you have an inkling that your child may be challenged in some areas, START the process of getting him assessed as EARLY as you can. Lately, there's been so much coverage on the Autism topic such as on "The View". A parent on there said, START on intervention as EARLY as possible. It's TRUE!! What we do as of this moment, will affect our child's future as well as the welfare of the whole family. While not ALL children can be *cured* (and I take that word LIGHTLY), early interventions will benefit them in the future.

DON'T be afraid to ask questions. Don't be shy about wanting to know what your resources are.

This is all new for me too, but bit by bit, I'm learning and these are processes that I've gone through.

Ok, I've ranted long enough.

Until another day (or sooner)...

Just a Rainy Day...

What a day to fit the mood I've been in.

Still continuing on being proactive about everything. I sat and wallowed in my sorrow last year. But, I promised myself that this year would be different.

Upon returning to our old beloved health care provider (my husband's company was able to get the company back on to Kaiser Permanente), I immediately began making appointments for the kids.

I was horrible last year. Upon hearing that my son would possibly be Autistic, I went through a LONG mourning period of coming to grips with what that meant, doing what I had to do just to skate by. I could have done a lot more, but as I mentioned, I was going through my mourning period, afraid I might never recover. I was horrified with the pediatricians that we saw when we were under Blue Shield/Blue cross, and they were like car salesmen, rather than people who actually listened to their patients. We had discussed with one of the pediatricians that we saw the possibility that my son would be AD/HD, and he said that he could write us up a prescription if we wanted one. Can you BELIEVE that? W/out listening to us, he offered to write us up a prescription, like that was a cure-all to what we'd gone thru the past year finding out our son had special needs. I was distraught and hated the health group we were in, and proceeded to have my infant daughter lag behind with her immunization shots.

So, going back with what I said about being back with Kaiser again, I made appointments to find the kids primary physicians, get myself checked out as well and in the process found a Development Pediatrician.

We met w/ him, and it was the FIRST time that my husband and I felt like we were being listened to. We weren't just another family to him. He really listened and answered our questions and WOULDN'T give us a formal diagnosis because he believe that our son would need to have a more thorough assessment. Even though the news wasn't great, it was hopeful and the Development Pediatrician was just overall a blessing to us.

Again, last year I was going through a mourning period. I was crying, wallowing in the "what if's" and "hoping that" and I said that this year would NOT be about "what if's", it would be about "what NEEDS to be DONE and what I am going to do about it".

My husband took the news to heart and it pained me to see him upset, but I felt that I had been the one who wasn't strong last year, and this year was my time to be strong...for all of us. We were referred by the Development Pediatrician to the Kaiser Autism Clinic. We're in the process of filling it out so we can send it off.

I could write and write about everything, but I'll try to save it for another blog.

It has been such an overwhelming experience and I commend all parents out there with special needs children. We're not alone, even though sometimes we feel like we are. I have to keep reminding myself that I'm not the ONLY parent out there in the world who is going through this. I know every day a parent is finding out for the first time that their child might have a challenge that needs to be addressed. It is hard to have friends (mostly ones without kids and ones who do, whose children are not special needs children) b/c sometimes they just don't know the heartache, the worry, the depression, the anger, the blame, the mix of emotions that we go through as parents. They DO know, but at the same time they don't know the extent of everything. We keep our chins up in public, when we're secretly breaking inside, but one thing my husband has always told me was that it is important to never let the kids see us like we can't keep it together. NOT saying to act like we're devoid of any real emotion, but to make them feel that we're ALL okay and not to let them worry. Kids are very sensitive and aware of their parents, so I agree it is important to show strength in addition to love when it comes to kids. We are, after all, our kids role models.

What I hope to accomplish by journaling this is hopefully give some insight to people who have friends or know of people who have a child who has special needs to what a parent goes through.

Until another day...