Friday, April 8, 2011

My son...We love him with all our heart. Before having him, we never knew how much life would change with him in our lives. He makes EVERYTHING so worth it. Our existence and everything we do is a reflection of him...for him.

This blog is to inform our family of what is going on with us at this time. Where I'm getting with this blog is sad one... but one that will be look upon one day and remember how far we have come.

Hayden has been going to West University for speech therapy- twice a week for 30 minute sessions with about 5-6 other older kids. And for various reasons...we did not 'click' with the special education teacher. She was cold in our eyes... but I'm sure in her eyes... she is just 'frank and to the point.' She would essentially ask us to drop him off crying and shut the door. She didn't feel warm and fuzzy like we felt she should have been with kids with disabilities. After a few weeks with him, give or take (approximately 6 sessions due to holidays and such) she told Steve she wanted him tested by the school psychologist for other impairments. Steve, as any other parent, wasn't receptive to this and in fact told her she wasn't with him long enough and not to give up on him and be patient. Then he asked her did she review his file and the 3 other psychologist evaluations and speech therapy notes... she was perplexed and a bit offended by his tone as if he was questioning her. Well that didn't make the matter better... Well holidays came around added with teacher in-service days... and we did not take him back. We instead went to the HISD special education department and inquired about other services available to him. To make a story short... we moved him to another school close by, Condit Elementary, equally a great school.

Transfers in hand, Hayden met with Mrs. Bailey at Condit Elementary. She meets with him one and one and he is definitely more receptive to her. She is patient and has a friendly smile. And she gives hugs :)

Talking to Mrs. Bailey she brings up AUTISM spectrum. She is concerned. My eyes quickly fill up with tears. She recommends more testing and placing him in a PPCD (Preschool program for children with disabilities). He is turning 4 soon and his speech is severely limited. In fact she notes that he has no urge to talk. AUTISM SPECTUM, it is called a 'spectrum' now because Autism is not what most people think of kids rocking and swinging their arms... its a spectrum and encompasses a broader, more widespread abnormalities. She has only been with him shortly and notices 'low facial tone' and the inability for him to say certain things. The low facial tone.... I don't know... but we know he can't seem to say things that start with "M" like mommy. That is why is calls me "Ya Ya." This is probably more of the APRAXIA (which have accepted), where essentially his speech problem is due to motor issues where the movements of his mouth muscles, tongue, palate are not developed for speech. Yes he does have many characteristic of Autism... but I'm sure I could fit in to several different profiles as well.

Navigating through this tough one. What are our options? We can let her go ahead and get the school specialist to test him... but then that will declare with a "disability." According to her, once he is tested this disability follows him for at least 3 years. Do I want him labeled and put into a class away from mainstream kids? Will it benefit him or could it hinder him more? What if we don't want him in a class with other physically and mentally disabled kids. She couldn't give me a straight answer. What scares me is urgency in her tone... "kids have a small window to develop their speaking skills" and we feel we are missing it.

Steve and I have discussed it and decided to keep his therapy separate from the school and do it privately. We have been given a great referral from our patient who's own grandchild was in the same exact situation and now "you can't shut the kid up"... Sessions are 1 hour 2-3 times a week. We could only wish the same for Hayden. We are also going to sign him up for a summer program with the University of Houston Speech and Communications Department. This seems to be a great program with graduates under the discretion of pathologist for 2 hours twice a week.

Is he autistic? In my eyes he is not... and I will not allow him to be labeled as such. In my field as a chiropractor, I may see a patient with a Lumbar Disc pathology or Lumbar Spondylosis (which are more severe diagnosis) than back pain. Does it change the way I treat a patient... NO. And I realize there are some diagnosis that need to be addressed differently. But in case of Autism versus speech disorders, the treatment is similar. So we will proceed to go forward with more aggressive speech therapy.

Highlights... Hayden has kicked the pacifier- which is the culprit in our eyes of some of his deficits. Included in this is our amazing ability to understand what he wants (not good because he doesn't voice it) and our over nurturing as parents.

This blog has been sitting on my computer for 3 days now.... perhaps over thinking it and not wanting to disclose too little or too much... but I felt this was the easiest way to let the people who care for us and Hayden know what is going on with us.

8 comments:

  1. I love you emmie. You are the best thing in the world. Hayden and I are so blessed to have you as our living parent and wife.

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  2. Thank you for sharing with us Hong. I hope you continue to. Being the sister that lives out of state and do not call often, I really appreciate your sharing this with us. Love.

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  3. I'm with Chi Tram, thank you so much for sharing. I can only imagine what it's like to have your own child and watch him go through the day-to-day routine of growing up... let alone watch him struggle through something like this. You and Anh Vien are two of the most loving and caring (AND FUN!) parents I've ever met (and don't forget I DID work at a daycare... so I HAVE met a lot of parents) and Hayden is so lucky to have you both. I know there's so much on your mind right now, and I just wanted to say thanks again for taking the time to write it down and let us know what's going on. It took courage and it shows how much you love your little Hayden.

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  4. Hello Chi Hong and Anh Vien,

    I only worked in the field for a couple of years, but all I know is that it's the parents that really shape the future of a child with special circumstances. A great teacher obviously doesn't hurt, but it's the parents that go out and find that particular teacher to begin with. I know you guys will never settle for less, and Hayden doesn't want you to either.

    I can see it in his eyes that his mind is exploding wonder, intelligence, and creativity, and I know you two are the ones to find the way to fully unlock it.

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  5. It takes such strength to open and share what is so very intimate to you and your little family.

    I know what great parents you two are.
    No questions about it.

    I may not know what to say or how to help but...
    Sometimes love is silent, but love is love and know it is always present.

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  6. Anh Vien and Chi Hong,

    Echoing everyone else, thanks for sharing this with us. I think you are doing what every parent should do, trusting your instincts, finding help when you need it, and never forgetting that no one knows your kid better than you do. Let us know if there is anything we can do to help, even if it is just to talk. Love you guys!

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  7. Hayden is a Ham!!! He's a Hunk!!Those sparkling eyes are full of wonder and imagination... He will conquer the world!!!I just know it after spending some quality time with him this weekend...
    Having amazing parents like the both of you I have no doubt all will be well...heck I envy Hayden :)...to be young..to be that good looking...to have parents like you too!!! priceless...

    love you three lots,

    Avan

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