Ilicia | FirstBorn2Autism.com

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Archive for the ‘Message for my peeps’ Category

This is for you… a personal message.

Trouble may endure for a night…

Posted by Ilicia on July 20, 2010

I know a lot of us wish we had done some things differently in life. I am one of those people who believe that everything down to the hole in my underwear is there for a reason. Everything serves a purpose and we just don’t know it yet. Sometimes it’s made clear to us: “If I had been early for work I would have got caught in the rain and there was an accident on I-20…” Yet other times, things may not ever be revealed to us and we are just left to wonder.

Truth is, the thing about wondering what could have been and what should have been never seems to satisfy the ache caused by the absence of the truth. What I’m saying is that we may never know why what happened to our children happened  or what caused it… what we do know is that we are here for them to nurture, love, and support them the best way we know possible.

I’ve found in my quest for “why” continued to eat at me until I came to grips with everything. Realizing that this blessing from God that I had given birth to was a bright, beautiful individual with gifts to offer the world was kinda difficult for me at first. We focus so much on the negative that sometimes we can’t see the miracle that’s staring at us everyday. For this little boy to come into my life and share with me his askew view of the world and his genuine, pure sweetness… I couldn’t ask for a better son. His naivety and true sheer amazement with things that are so miniscule to the average person (and his ability to show me the beauty and wonder in them)  is such an adventure… I’m blessed to be his mother.

And maybe it’s because I know that because he has autism and that his mindset will be absent of falsehoods and maliciousness… that he will be sheltered somewhat more than other boys from the world, I know that trouble that typical parents might face, I may not face. Then again, who knows what kinda “ladies man” or “hell cat” I maybe raising. *LOL* The point is: We don’t know. That’s scary as hell but I love him… I love him for today and everyday that I’m blessed to be with him and no matter who he becomes I know that I am apart of molding that. It makes me proud.

I know we ask: “Well, will he be able to drive? Will he have a girlfriend? Will he go to Prom? Will he be in love or will someone love him?” We wont know these things but what I do know is I will help give him every opportunity to live life as a typical young man. If he can handle it or can be prepared for it, I’ll try it.  These questions scare us all. The future is frightening… but so is everybody’s future… we don’t know what will happen to US in the next few minutes let alone years!

We all have fears that they will be mistreated and abused but any typical child can experience all of this as well. Our children are more susceptible to this because of their innocence and disability. This is where it is our job to go the extra mile in teaching them about “stranger danger” and “good touch, bad touch” (but on steroids x100) so that they can understand or even be a little over-reactive (this is a good thing to me) in being cautious about who they can trust and who they can’t. Trust me, I, on occasion have had nightmares about my son being hurt by someone and I couldn’t get to him or he couldn’t explain to me what had happened to him. This is why I am proactive in teaching him about his body parts and the correct name for everything, where his penis is and not to let anyone touch his penis, that if someone tries to touch him scream NO!…. for a while I didn’t know if he understood what I was saying but I have come to realize that I underestimate my son sometimes and he has a good understanding of what I want. Trust your kids and that they can understand you even if you don’t get the type of response back that you think you should. They will surprise you with what they can retain.

Do all you can and spend that extra “face time” with them everyday. Don’t just be teachers… be “active listeners” too. They have some interesting things to say, especially when what they are trying to get at finally comes together. You both have that “ah-ha moment” *LOL*

Try not to worry about that aspect of things and focus on right now. What can you do for your baby today… work on tomorrow… see where it goes.

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Where have you been, Ilicia?

Posted by Ilicia on April 29, 2010

First of all, let me just give EVERYBODY a big I AM SO SORRY because I know I’ve been “slippin’ on my pimpin’“. *SMILE* I haven’t written anything in at least two month and it’s been because of my focus on school and losing weight. I would like to say that I’ve made good grades and I’m 40 lbs lighter (applause) Thank you, Thank you *LOL*.

After pic 2010I will be on here more often, I promise, due to changes in schools and career plans. It’s funny how we plan things to go one way and they tend to make a sharp turn off the deep end of a cliff. I can’t been disappointed because I am the type of person that truly believes that everything happens for a reason (from my son being diagnosed to me not being able to apply for the ADN RN program). Yes, because of a technicality, I can’t apply for that program but I’m exercising other options. I’m getting my LVN first and then doing a bridge program to get my RN. I just say, “Lord, I want to do it how you want me to do it…”. So I’ll wait for my season. I’m still shakin’ back from the sting of disappointment but I know ya’ll know how I feel.

So that’s what’s been going on with me, so far…

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What am I up to?

Posted by Ilicia on February 19, 2010

Hey, folks! Thank you for just being here and reading what I have to say. I can’t express what it feels to be heard and to help in any way that I can. I’m in school this semester and I’m taking chemistry, music appreciation, and a few other classes that are essential for my health and well-being.

I know a lot of you have experience what I have and have gone through a bout of depression and have probably handled it the way I did… with food. Food was my friend for a while and I gain a lot of weight through my grieving and trying to cope with things going on in my life. In December of last year, I got so fed up and disgusted with myself that I decided that I needed to make a change in my life and take it back. I was going into the new year feeling good and confident on the inside but it didn’t reflect what I looked like on the outside.

I’ve been in aerobic fitness, yoga, and walking since January 19th and have been officially ‘watching my weight” since January 1st. I am proud to say that I’ve lost 20 lbs and will keep on losing until I reach my goal.

I finally feel that I have control over my life and that I am making a difference everyday.

Dont let depression and sadness overtake you. Dont feel alone. Get your life back and claim victory over all. Be proactive and fight against what ails you. You’ll be surprised what will power and new purpose can do for your figure. *smile*

Love you,

Ilicia

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Temple Grandin

Posted by Ilicia on February 19, 2010

I watched this movie on HBO that recently just aired…last week, I think but I wanted to share this with you because I feel that if you have a child with autism/aspergers syndrome that you MUST watch this movie. I’m not gonna spoil it for you but basically it’s about Temple Grandin, a woman with autism, and her struggles from her diagnosis to her adult life and what she had to overcome to succeed. Yes, she is a success. I literally CRIED during this movie… there are also parts where you will laugh and be amazed (just the way the film is made with certain sounds and visuals to let you “the viewer” know what she “Temple” is hearing or seeing). Claire Danes KICKED ASS in this movie and did an amazing job playing Temple. Please… please, I urge you all to watch this movie and let your friends watch this movie and keep this movie in circulation because we have to let everyone know that our children are “different, not less”. That was the theme of the movie and I feel as though this movie should be required watching for any newly diagnosed child’s parent. It’s profound and eye-opening. You wont regret looking at it.

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Patience… truly a virtue.

Posted by Ilicia on January 8, 2010

Sometimes I sit and think to myself: Am I treating my son right? Did I raise my voice or get too aggravated or aggressive with him too quickly? Those are reasonable questions given the circumstances. We have children with autism that sometimes do things, out of their aggravation and stress, that tend to cause us as parents aggravation and stress.

One day I told my son to do something, I don’t remember what it was, but the result stayed with me and I try to stay aware of it every time I talk to him. He told me no, several times, and screamed and covered his ears (this really got me boiling). While I felt myself getting angry, I realized that he couldn’t do what I asked because something was in the way or he couldn’t do it until he did something else. It’s almost like telling you to drive to my house with no directions. You want to go but you have to know the way first. But as a parent, we want them to just “get there” and we became agitated when they just don’t move or the show they wont.

I had to realize that I must be patient (even more than a regular mother is with a typical child) because my child still has a lot of limitations. Don’t get me wrong, he’s moving fast and talking more and making so much progress but there’s still some things we haven’t arrived to. There are things that just haven’t come up yet in the “life skills” department that I can teach him.

I’m glad I have learned this lesson.  I’m a happier mother and he’s a happier child for it.

With that being said: Grown folks…you must have a different kind of patience for. The other day, I told a friend of mine my son has autism. She said, with a serious face “Does he have the kind where he hits his head?” I must have given her a strange look because she asked it again and before I could say anything she said, “It’s okay, I’ve worked with those type of children before. I know what it’s about”.

See, patience is… a virtue. I love this blog and I will continue to do it because I know if someone who knows me, that knows a friend, that knows a friend that has a child with autism gets directed this way, I’ve accomplished something. If I can tell what it is, how are they affected and so on, in an intelligent way, I’ve done my job. Did I get angry? No. That’s my friend, I love her. I wanted her to ask me: Is your child high functioning? (Answer: He was diagnosed at 3 years old with Severe Autism and was non-verbal. Now he is verbal and is no long on that end of the “spectrum”) What are his “stims”, things they do to stimulate themselves like hand flapping or bumping their heads or spinning in a circle, etc.?( Answer: When he was first diagnosed it was hand flapping and holding his ears… now he doesn’t stim).  But I can’t be mad because she didn’t know the right questions to ask.  Her heart was in the right place and that’s why awareness is so important. So I stress patience a lot with people in our community or relatives… people who in general, don’t know about autism or think they do and are ignorant to the facts or make a lot of assumptions.

So on that note: Be patient with your babies. Assess the situation before flying off the handle. Take time for yourself. Try to sit in silence for at least an hour a day. Enjoy them being little. Be patient with people. Try to educate and inform the community. Share/give of yourself so you can get some back. Hold your head up high.

Love you all.

~Ilicia

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I’m fine…had to vacate.

Posted by Ilicia on September 17, 2009

Hey ya’ll. I’m fine. I had a little health scare but I’m right as rain now. My husband and I went on a trip to Vegas and had an awesome time. I know I put on a few pounds just eating in the hotel we stayed in. I loved the plane ride, although I got sick on some parts of it. It was so beautiful…the sky and the clouds were so surreal. I can’t explain it. Beautiful.

Then when we got there it was all lit up and glowing. Jumbo screens and boobs were everywhere! *LOL* It’s definitely a trip I’ll be making again in the future.

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Been gone for a minute.

Posted by Ilicia on August 31, 2009

I want to apologize to ya’ll for being gone for so long. I’ve been sick and had to get a series of tests (ultrasounds of my thyroid and brain MRI). I’m okay, but I had to check some things out. I’m back now and ready for action! I will be back on Youtube in a little while (like tomorrow or the day after). In the meantime, please look for me to post more and please leave a lot of comments for me to read. I love ya’ll. Thanks for being patient.

~Ilicia

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Speech Therapy

Posted by Ilicia on July 28, 2009

For a lot of you busy moms and dads, you can’t take that trip to and from the doctor’s office to get that speech therapy your child needs. Sometimes it’s just inconvienent. For me it was hard because I got up for work at 245 am and still had to take my son to Downtown Fort Worth to Cook Children’s Hospital  for his therapy. The therapist there gave me a life saver and now I’m going to give it to you. Call Sante Pediatrics Rehab. They come to your house and do 30 min.s or more with your child and they do accept Medicaid. All you have to do is make the one time visit to the local office (Downtown Fort Worth) and they assign a therapist to your child and then that person comes on a regular basis. They bring their own toys and equipment and they are punctual.  I love them and my son does too. My son loves his therapist. Her name is Alice Senff (she’s wonderful). Please, if you are in the area or have a Sante Pediatrics near you, do your self a favor and check them out.

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A Big Sacrifice: Schools defend autism decision

Posted by Ilicia on July 28, 2009

HILLSBOROUGH — Orange County Schools released a new statement Monday providing more details on a court battle over a 4-year-old boy’s special education needs.

The three-page statement defends the school system’s recommended services for Owen McWhirter, a child with a form of high-functioning autism. Owen’s parents, Nicole and Arran McWhirter, disagreed with the district’s recommendation and took the matter to an administrative court in Raleigh.

The couple claim that the school system failed to provide Owen the “free, appropriate public education” required by law. A state judge agreed last month. The decision, which the school system has appealed, also said the district should reimburse the McWhirters for their educational expenses.–The News & Observer (NewsObserver.com)

Basically what’s happening is that the McWhirter’s son was going to public school and the had an ARD meeting and the IEP only recommended him to have 4 hours a week of “special instruction”. I enrolled my son in school when he was 3 years old and as a parent of a special needs/autistic child, you’re child is entitled to receive public school services beginning at age 3 under the Individual with Disabilities Education Act. It is the law. As parents, we have to know what our rights are and have the Director of Special Education’s number on speed dial when things are not to our liking. The children have a right to a free, appropriate education which means we have the power to change what our child is learning and doing on a daily basis at school, how long our child is at school, and if we dont like what is said in the ARD we need to change it. It’s their jobs!

This is why I say you can’t just leave your child’s education up to the school. Half the time, the school doesn’t even know how to handle your child and sometimes can make you feel like your child is a disciplanary problem. In some cases, the teachers dont have the necessary trainning and they make it seem like it’s a home issue when really it’s an education issue. Another thing that’s getting me is:

“The school district believes that — had they tried it — the child’s parents would have been happy with the educational program developed by the school system. If not, as has been done for many other students, the program would have been reviewed and amended,” the school system said in the statement.

The McWhirters’ legal fees have reached $200,000, forcing them to put a second mortgage on their home and borrow money. In the meantime, they continue paying for Owen’s private preschool and specialists.

Okay, the question is: Was  it worth the sacrifice of $200k, putting a second mortgage on the house, and borrowing money so your child have the special attention he needs? I think it is. I think it’s sacrifices like these, that people with better financial footing than I have make, that slowly makes change for all of us in this situation. We shouldn’t have to move to different school districts, out of state, or even  have our children in private school to get something that is suppose to be free for them.

There needs to be some kind of reform for the way the school system handles autism and there really needs to be more specialized training in that field. You send your child to public school and next thing you know you realize that the teachers dont know what autism is or how to help your child at all. They may have seminars or training sessions but that doesn’t take the place of real specialization in that field when in college.

I have my son in public school and if  I’m not satisified with something in the ARD meeting then we wont leave until we resolve the issue. That’s what has to be done. It is there job to come up with a compromise and or go above and beyond to give your child the best education that they can provide . It can be done. You have to fight just like the McWhirter’s and my hat is off to them. I just hope they win and it can be the beginning of the change that we need in the system.

The government DOES owe this  child (Owen McWhirter)  as well as your child. I support this family in there sacrifice and struggle. It’s a hard thing to do because you want to save money for your child’s future and when you’re not here anymore to take care of them but you have to realize they are fighting for us all. The average child with autism will cost on average over 4 million per child. If a child can recover enough to become independent as an adult then there is an approximate savings of over 2 million. A pay me now or pay me later thing. This is issue is the same as private insurance not paying for treatment and therapy for autism as well.  This money the McWhiter’s have spent, is being used for their son’s future as well as yours and mine. I wish them the best. I really do.

Nicole McWhirter’s blog is: http://educatingowen.wordpress.com/

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What is this blog about?

Posted by Ilicia on July 19, 2009

I asked my husband what he thought about my blog and he says that a lot of my other content takes away from the seriousness of the autism issue. I told him that was my intent. He then said, “I’m proud of you”, and told me that if my intent was to show that there’s more to life than just autism, then I have suceeded in my goal.

I didn’t want to just focus on the “doom and gloom” of my situation (our situations). I want you to be informed as well as entertained. If you look on my blog and you get inspired to try something new with your child to help them in everyday life AND you so happen to look at the WTF News and *LYAO* then I have acheived my goal.

We have to live. We can’t stop living because bad things happen to us. I am a walking disaster with broken bones and a child with autism but I try to live everyday with a smile in my heart and on my face and I hope  to be…contagious.

I love ya’ll.

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