Tuesday, January 11, 2011

Noah's AZEIP Screening

Noah had his early intervention screening today. The good news is, I'm not paranoid like everyone said I was. The bad news is, I'm not paranoid like everyone said I was. She was here for almost two hours going over everything Noah does (and doesn't do) assessing where he should be for his age. They put all the data on this chart that goes from black, grey, then white. Black is really bad, grey is okay, then white is where they should be. Noah was in the black on EVERY single area they tested. Every. Single. One. Two of them he even had a zero for his score. To be eligible they only need to have a 25% delay in ONE area, and he's at a 75-100% delay every one. She said he'll probably end up on DDD like Kassidy (which is good) and that she was amazed how observant I had been. I told her how his pediatrician felt it was no big deal and told me to wait until he was 2 to do anything (though he has not made any progress in almost a year) and thankfully she referred me to a pediatrician that knows what to look for and is proactive about this. I'm just glad that finally someone that is listening so I can figure out what the next step is for both the kids. Everyone kept telling me to wait, wait and see what happens. Well I'm done waiting. I waited 3.5 years for Kassidy's diagnosis when I KNEW there was something going on and I'm not going to wait 3 more years for Noah. Soo someone is coming next week to do another screening and we'll go from there!

Monday, January 10, 2011

because everyone is an expert - just have some tact

I've been keeping something bottled up inside and quite frankly I need to voice it before I erupt like a volcano. First I need to make something very clear. Never is it ok to talk about someone elses child in a negative manner. Ever. I do not care if you had good intentions, or if you think you are an expert on everything under the sun because you read an article online or in your class.

Recently I was told "After Kassidy's diagnosis everything made sense. All the issues she was having playing with other kids and the issues she was having with everyone else. The way an autistic child plays with another child is very different from the way a normal child plays with other normal children. But I just figured you never let her play with other kids."

At first I said, should I be offended? Kassidy IS autistic, is what she said really that wrong? Listen. The very first thing I want EVERYONE to understand is I hate the word "normal". You will never hear me say normal. I prefer "typical". My child is not abnormal, she just does things differently. Second, I'm fully aware that the way an autistic child plays with other children isn't the same that typical children play. I live this everyday, I promise you I don't need it thrown in my face. It should be understood that although Kassidy plays different, she still loves other kids. She loves to be around them and they have fun together - yes, even the typical children have fun too.

The bottom line is, no matter how you look at it, this is talking smack on my child (and my parenting if you count the snarky comment about me supposedly not letting her play with other kids.) Lets go back to preschool people, if you don't have anything nice to say don't say anything at all. If the intentions were to make me feel horrible, then I applaud you as you've succeeded. The only thing that needs to be said about my daughter is how sweet, silly, and hilarious she is. And really, that goes way beyond the fact that I'm biased. She is the most carefree, life loving child I have EVER met and if her autism has brought her any advantage thus far, it's that she is completely oblivious to how cruel people can be.

I typically stay away from conflict. I don't participate in breastfeeding vs formula debates, home school vs traditional school, stay at home mom vs working mom. What is right for one family isn't right for another. So many times I hear this competition about "my baby rolled over first, got their first tooth first, and hes 6 months old and says 300 words why doesn't YOURS!" The one thing that goes all across the board is no one needs to be talking trash on anyone, especially children. That's the one thing that is right for everyone...

Saturday, January 8, 2011

government agencies do their job sometimes

It's been awhile since I've updated on Kassidy. Certain events had transpired with her doctor and the DDD (Department of Developmental Disabilities) and I was too upset to even discuss it. The DDD wanted to put up a fight with me that one of Kassidy's papers said Pervasive Development Disorder that was dated in September even though there was a paper dated in October that said autism. She also had a fit that a nurse practitioner had seen Kassidy even though the psychiatrist did afterward and concluded diagnosis himself. I also came to find out that even though the dr had no problem giving me a verbal diagnosis he refuses to write a formal one until Kassidy is given this extremely extensive psych eval. The problem is only ONE doctor in all of Arizona will perform this evaluation on a child under the age of 6 and their office wont return Kassidy's case workers calls. Frankly at this point I felt it was a lost cause and was completely expecting a big fat denial in benefits for her.

I have to admit I was angry. Angry at the whole process, that there has to be a certain severity for anyone to do anything about it. I had fought so hard and long for this diagnosis and then here I am thinking I can't even get help for her. And really why was I fighting anymore? Just when I had put it out of my head I randomly received a letter from the DDD. "We are pleased to inform you that Kassidy Fisher has been determined eligible." I was literally shaking I was so ecstatic. FINALLY something was coming out of all this.

The next day I received a phone call from the DDD caseworker wanting to come to the house and start the next step. She informed me that Kassidy is approved until her 6th birthday, but she just needs a formal diagnosis before then to continue benefits after that. I am so happy and Kassidy deserves this so much. I really was losing hope that anyone actually cared about these kids and looked at them as anything other than a paycheck. I'm pleased that someone is actually doing something for her and cares enough to get the ball rolling!

On a side note Noah is exhibiting certain red flags that Kassidy did at his age and her case worker suggested we contact the early intervention place. They are coming on Tuesday to screen Noah and I'm really nervous about it.

Thursday, November 25, 2010

Happy Thanksgiving

Today is Thanksgiving and we have so much to be thankful for! Most importantly I am thankful for the Lord. He has always provided for us even when life's blows make it seem like we've lost everything. As weird as it sounds 2010 has not only been the worst year we've had but the BEST one. For every moment something horrible has happened something incredibly amazing has happened shortly after.

Every night I thank God that we at least have a roof over our head, food on our table, and my husband has a job that provides for us. I think these are things a lot of people take for granted but these are things so many families don't even have. I am thankful for the husband I take for granted, who really is an amazing father and I don't give him enough credit. I am thankful for my babies who brighten my life and give it meaning and purpose.

I think that we all should stop and think about what we're blessed with everyday, not just on Thanksgiving. No matter how grim things are at the moment, there is always something to be thankful for.. even if it's just the simple fact that you're alive. The little things really are the most important. I asked Kassidy the other day what she was thankful for. She said "good hands", me too! Happy Thanksgiving!

Sunday, November 21, 2010

i didn't have an autistic child to irritate you.. promise

Alright I need to get something off my chest here and I apologize in advance if I end up dropping any f-bombs. I totally understand that some people aren't comfortable hearing the "A" word especially when it comes to a family member. Hell, I know of parents with Autistic children themselves and they're even in denial. I don't have time to be in denial and I don't have time to throw a pity party. Every single second of my day is a battle. A battle because I poured the wrong brand of chocolate milk or a battle because I drew a 4 with an open top and not a pointy one.

There is a certain family member.. two in fact that instead of being supportive and accepting Kassidy's diagnosis they have instead been taking it out on us. I don't have many requests when it comes to other people and my children. I think it's pretty reasonable that all I ask is let ME discipline MY children and don't yell at them. Autism aside, no one needs to be yelling at someone else's children. After multiple times of telling them they should just let us be the parents, I suggested that perhaps they do some research and see why I say not to yell at her. They agreed. Apparently this made things worse. Said family member took my husband aside and said that Kassidy does not have Autism. It's basically my fault for everything that's "wrong" with her and they don't want to hear anymore about her appointments.

I'm disgusted. Said family member is not a doctor and I highly doubt they know more than the now 4 specialists and doctors that all agree on her diagnosis. How stupid of me to assume that family should be nothing but supportive. I think it's incredibly sick that someone even could suggest that I would make this up. Because everyone wants something "wrong" with their child. Because I totally enjoy being screamed at and hit all day long because I put the right boot on first instead of the left. I don't care if you agree with the diagnosis, because frankly your head must be in the clouds all day to not see what's right before your eyes, but how dare you treat my baby horribly and imply this is my fault. It does not make me a bad mother because I talk to her through her meltdowns instead of scream at her like you'd like. It does not make me a bad mother because I take her to doctors appointments multiple times a week. And no, I didn't "make her Autistic" for attention or to make you mad. I'm incredibly thankful for those that have been nothing but supportive of Kassidy and I will forever be grateful for them. Those two people, however, should be ashamed of themselves.

Saturday, November 6, 2010

birthday parties and my stress level do not mix

One part of growing up is having and going to birthday parties. I'm sure for most parents and children this is a pleasant experience. I absolutely dread birthday parties. The older my child gets and the older the children hosting parties get, the more I dread it.

Let me just share what happened today and at another party that was a few weeks ago, then I'll come back to my original point. A few weeks ago we were at a party and obviously there were balloons everywhere for the kids to play with. Kassidy has a thing for red balloons, and only red ones. Of course out of maybe 10 balloons available there was only one red one in the entire room. Apparently a little boy kept fighting her for this red balloon. It wasn't that he just wanted the red balloon, he was collecting them. His mother actually insisted Kassidy give up her one red balloon to add to her sons collection. Now don't get me wrong, I have no problem with encouraging her to share but why should she give up her ONLY balloon to add to his 7? I ended up having to leave that party early because my husband had to go to work soon. For days all I heard about was that red balloon. On the drive home she screamed for it. Before she went to bed she'd cry for it. The next day we even went out and bought her a $10 Dora balloon. Yeah.. it wasn't that red one and she disregarded it.

Fast forward to today. Kassidy understands birthday parties. She knows that you sing happy birthday, blow out candles, eat cake, and open presents. What she does not understand is everyone gets a birthday, not just her. As long as she doesn't start screaming on the floor in displeasure that she isn't blowing out the candles I consider it a good day. Kassidy made a comment that it wasn't fair because she wanted to blow out the candles. She was quiet when she said it and with all the kids cheering that the birthday boy blew them out I figured no one even heard her. Another mother then turns to my daughter and rudely says "when it is your birthday you can blow out the candles, but it's not." Lady, I don't know you and you sure don't know my daughter and you have no right to reprimand her and make her upset. When it got time for the birthday boy to open presents all the other kids sat in front of him and waited anxiously to see what he had received. Kassidy was playing by herself in the jump house instead. This same mother was giving me dirty looks because apparently it must be rude that Kassidy wasn't sitting with the other kids watching him open gifts.

Now back to my point. Kassidy's almost 4 and a half. She's getting old enough where her behavior can't just be shrugged off as age and other people think she's being rude when she doesn't answer their questions or do as the other kids are doing or my favorite, not wanting to leave the jump house when it's time to leave and hysterically screaming. Do I come out and tell some random stranger "Hey she's Autistic watch how you speak to her!" No. I don't know how other moms of Autistic children handle these situations but I don't feel it's any of the strangers business. I don't think it's acceptable for a grown woman to judge my child because she wants a red balloon, or because she wants to play by herself instead of watching someone open gifts. Perhaps it's wrong of me to assume that people should only discipline their own children instead of ones they've never even met before. Who knows. All I know, is the more parties we go to the more I dislike them. Why do I go? Because she has a good time, and whether some random mother likes my child's actions or not, I'm not going to deprive my daughter from the only socialization she actually enjoys, even if she's not doing it "correctly".

Sunday, October 31, 2010

a medication rave from the anti-medication lady.

Having been a pharmacy tech, I hate medications. Don't get me wrong, I loved my job. I did not love the number of patients that would come in and get 12 scripts at a time (I'm not exaggerating) for things that diet and exercise would be more beneficial. Drugs to counter affect drugs. It's a vicious cycle and apparently there are doctors out there that have no problem being apart of it. That in itself is for an entirely different blog post though. Long story short, I don't like medications and unless we're sick or feel like we're dying we don't take anything.

Even when I was suspecting Kassidy was Autistic I always told myself I wouldn't medicate her. I didn't want to "change her". I'm sure we all know people who have taken behavior medications and it almost seems to suck the life out of them. I did not want that to happen to my child. I didn't want her to be some zombie that went through the motions of the day. She's hyper and sometimes one might even say overbearing, but that's Kassi and I love her that way.

The last couple months, however, Kassidy's meltdowns have been so frequent and explosive I haven't known what to do. If you'd try to talk softly to her she'd scream bloody murder at you. If you got near her or heaven forbid tried to touch her she'd hit and kick you. I'd look in her eyes and it wasn't defiance, this was complete loss of self control. She's normally very sweet and I know she did not want to hurt us. Anything and everything started causing meltdowns. If I drew a 4 wrong, life as we knew it would end. If I gave her a different brand of chocolate milk it'd be an hour before she would calm down. If her baby brother was near her when she was having one I'd have to run to separate them so she wouldn't start blowing punches at him. Not only was this getting dangerous for us (let me tell you that little 4 year old is strong!) I can't imagine the amount of stress this was putting on her.

I agreed to try Risperdal because I felt I couldn't calm her down during her meltdowns anymore. Sometimes after an hour of her screaming and kicking me I would just cry and feel so helpless. Not only was this stressful on me this wasn't fair to her to have her keep going through this. After about an hour of her first dose I started noticing an improvement. I gave it to her at 8pm and by 9pm she was telling me she was tired. Kassidy has NEVER told me she was tired and bedtime was a battle every single day. She fell asleep around 10:30pm that night, instead of her usual midnight with a fight. The next morning she woke up in a great mood. I decided to brave shopping with her. Usually I have to take my husband with us to the store and we'd have at least 2 meltdowns anywhere we went. All by myself I took her and my son to Target, the pet store, and the grocery store. Not one meltdown. Throughout the day she would get upset but it never turned into a screaming fit, I never got hit or kicked once and her displeasure ended rather quickly. She's been on Risperdal for about 4 days now and we've only had one real meltdown and it still wasn't as bad as pre-Risperdal. Also, usually she'd be jumping on the couch all day long and she's not hyper anymore, just normal. I've noticed her sentences are better too. I think it's allowing her to slow down and say what she wants instead of trying to spit it all out really fast. I'm sooo glad we gave the medication a shot and it really does seem to be helping her tremendously.