Autism and Us

The Fascination

2012-02-15T12:19:00.000-05:00

I often wonder why my son has such a fascination with spoons and straws. He has a couple of favorite toys. His number one is his toy guitars and then there are his toy cars. But for some reason he's also drawn to spoons and straws.

As I sit and watch him at play they seem to bring him some sort of happiness and peace. They keep his interest. At times he uses them as his microphone to mimic singing and at other times he just has to have one or both in his hand no matter what he's doing, even at bed time. I've had to put up a few straws and a couple of spoons just for him. If I hadn't, lol, he would just goes right into the kitchen drawer and grab a spoon and a straw. I've actually had to replace spoons because he's lost them. So putting away his own special spoons and straws was a must. He knows right where to find them when the need arises.

I'm fascinated at his fascination for these two things. I guess maybe because it's these type of things he chooses over his toys. hmmm...fascinating.

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Happy Is As Happy Does

2011-12-27T15:40:00.000-05:00

Yes, Happy is as Happy does...he's just a Happy Happy boy. :)

My lil man has two favorite things and that is toy cars and guitars, especially the guitars. If he get's into one of his "guitar playing" modes and there isn't one around, he will grab anything that he feels will do, lol. He will use broom's, combs, his toy golf sticks, straws, spoons, brushes...seriously, anything that will help him mimic playing the guitar. Sometimes we have to hide them from him and I truly believe he goes into "guitar withdrawals".

If he's listening to a television theme song or a song on the radio and hear's a guitar he gets so so excited and rocks to the beat. After a few times of hearing a song, he can't actually play it but he can sure mimic the movements on his guitar and go into rock star mode, as if he were really playing. One example is the theme song from CSI - Miami, he has that down, lol.

So this leads me to, why it amazed me so much Christmas morning when he noticed the new guitar under the tree. It was as if he got something he never had but always wanted. He went into his "happy dance" then immediately grabbed it to start stringing his own music, lol. The look of excitement on his face was priceless. I wish I had the video camera going to capture the moment. The whole family was excited because he was excited.

He was so excited about the new guitar he wasn't really interested in the other gifts he received, at least not until later on. He played it and played it, then made me and his dad play it while he acted like he was singing in a microphone (btw...he will also use anything as a pretend microphone if he can't locate his). We are definitely looking forward to getting him guitar lessons...real soon and hopefully one day we will be able to hear him sing along as he plays. :)

Now I wonder which one will be his favorite guitar. Hmmm...

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He's Getting There

2011-11-22T18:57:00.001-05:00

We take so many things for granted in life. Like some of life's lessons that should be known and learned by a certain age. Since DeAndre has come into this world and my life he's taught me patience. Such as with potty training.

Potty training was so much easier with my older kids. My oldest son had the potty mastered before he reached 2 years and my girls both took a little longer but had it down before 2 1/2 years. Of course they weren't living with an ASD and were able to communicate their needs clearly. DeAndre is another story. He's 5 years old now and we are still working with him and the potty training. I will admit I do have my moments of frustration, as does the rest of the family, but I know he's getting there. Patience with him is important.

In the mornings he knows to head straight to the toilet, he lifts and uses it, then flushes and goes straight to the face bowl to wash his hands. I'm thankful he knows to do that much. When he's at school they have their bathroom breaks and his teacher has reported that he does good and goes with no problems then other times he doesn't (thank goodness for Pullups). It's the same when he's at home. I have to watch for his signals and if I don't catch him in time he goes, Pullup on or not. He has the morning pee thing down to a science but it's getting him to realize he has to do this throughout the day when he has to go.

The other potty issue is the bowel movement. When he was a bit younger he would go in his sister's (my now 11 year old) closet (why he chose her closet we could never figured out) and close the door. If none of us were around to catch this he'd do his do and have it spread all over her closet walls and OMG not to mention if he got to close to her clothes. No it wasn't a pretty sight and I always insisted to be the one to clean it up (mommy will do it), so an added chore or chores for me it was. In time he learned that that was not a good thing to do. No he hasn't mastered sitting on the toilet to do his do yet so we also have to watch for his signal when he's ready to go for this to. For some reason he has to go in any room in the house as long as the door closes. When I hear a door close I know instantly that its time. I guess the close door thing when he has to have a bowel movement is his way of saying he wants some privacy. Of course if we don't catch him in time he goes right in his underwear or Pullups but thank God he doesn't spread it all over the place anymore.

We've tried doing the reward thing and scheduled bathroom times. When he goes he always gets praises for going or even making the effort. I'm investing in a new e-Tablet since he seems to enjoy his InnoTab (touch pad for stories and games). Then I can down load the communication apps I've heard about and maybe this will help be able to communicate his need to go before hand. He'll like the idea of being able to press the buttons anyway, lol. I'm also taking any and all suggestions that may help with this. He doesn't talk but uses certain gestures to tell us what he wants or needs. Please don't hesitate to share what worked for you or may work for me by commenting.

No my baby doesn't have it down but he's getting there slowly but surely.
All I have is patience and love :)

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The Upside Down Trick

2011-11-13T19:30:00.001-05:00

My son can go in hyper mode at any given time. It seems at times the moment his feet touches the ground from the bed he's in overdrive. It makes me tired just watching all the energy he gives out, ooo wee. He's at his best usually on the weekends when he's off his weekday routine. While discussing this with his occupational therapist, she suggested turning him upside down...of course in a playful manner. It seems some kids on the spectrum respond well to this type of play as it gives a calming effect.

So of course we were willing to try anything within reason and now we make it a part of his daily playtime routine at home. His father, while standing puts him up on his shoulder and dips him in front of him while holding his back and head, DeAndre holds on with his legs on dad's shoulder. Dad calls out 1...2...3 GO and dips him then back up about 4 or 5 times. DeAndre loves this. Because I'm smaller then his dad, I have to do this with him while sitting down. He faces me with his legs around my waist and I secure him with my hands behind his head and DIP, upside down he goes. I think he really likes and prefers the way dad does it, lol, but responds well to both ways. He has even come to us with gestures that this is what he wants to play. Maybe it's the blood flow going to the head. I don't know but it really does work for us. After a dip or two he's ready to sit still for a moment.

Now if I could only find a way to make the calming effect last a little longer :)

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A Month Later...No Progress!

2011-10-17T20:30:00.000-04:00

Well now we've reached a month from the last phone call about cab transportation and an aide for my son. More phone calls and still no progress. This time, I was told, once again that they don't provide aides for cab riders. Once again there was really no explanation as to why they don't it's just a DPS policy which really sucks. But I would really like to know why this is.

On a brighter note they will once again place him in scheduling to see if they can get a bus routed to his pick up/drop off location. This will ensure he has an aide to accompany him. I already know what's coming...just waiting for the phone call back.

So what it boils down to is: 1.) If he rides the cab to school he cannot have an aide. 2.) If he rides the school bus he will be provided an aide BUT because his pick up/drop off location is not in the schools routing area there will be no school bus to pick him up ( I was already told this and I know it's coming again unless they make things happen)

My only other solution would be to hire an aide, at least for drop off time. Ease of mind and less stress on the fam.

Hmmm....I wonder could I get reimbursed if I do hire an aide... **thought** and definitely another area I have to do more research on.

So how was your day :)

DPS Special Needs Transportation Passing The Buck

2011-09-17T12:32:00.000-04:00

** DPS - Detroit Public Schools

School just started good this month and immediately the frustration settled in with me concerning my son. His IEP meeting earlier this year went really well. DeAndres' father and I were very satisfied that his needs would be met this school year. This included getting an aide to ride with him in a cab provided by the school.

My son is non-verbal, he is a little fella' and just the idea of him riding in the backseat alone with a strange driver...with my childs issues, as a parent I would feel more comfortable with a school provided aide. Because his school is out of his school routing district there are no school buses available to take him to his school so cab service provided by the school is the only other option for transportation.

So here's where the problem started. I called the transportation office to let them know that the first week of school my son wouldn't need the cab because we would be taking him the first day and my parents would take him and pick him up the rest of the week. (had to make sure my baby was ok with his new surroundings :) ). I also made sure to ask when the cab does start coming the following week would a school aide be there to ride with him to and from school. I was told yes and it was noted. Thanked the rep I spoke with and hung up the phone feeling good that everything was good to go.

The next week comes, I'm at work. My mother calls me and tells me the cab came (he goes from her house). She went out to greet the driver and the aide before bringing DeAndre outside and guess what...NO AIDE! So of course my mother said no go to the cab driver, explained why and dismissed him until we were able to get in contact with someone. She took DeAndre to school and picked him up for me (my parents are such a blessing).

As soon as I got a chance I was on the phone calling the school transportation department to see what was going on. One person after another I spoke with and all said they seen it noted and don't understand what happen. I was finally told they would make an aide was in there the next day. The next day came and it was the same thing. I was back on the phone asking to speak to above heads. I received a call back that I missed but the lady that called did leave a message that basically said...I would have to call the cab company to see if they would provide an attendant for the ride...SCREEEEEEEETCH...HOLD UP...WAIT A MINUTE!!! The cab company???? I tried to immediately call the number that was on the caller ID and guess what...It was an unreachable number. WTH!!!

So I called the transportation call back center and requested to speak to the lady that just called and left me a message. I had to answer a lot of questions of why and what's the problem. So let's just say I was back and forth with this til last Friday morning. I spoke with someone else who told me that DPS only provides aides for school buses and not the school provided cabs but I could request one from the cab company. HUH??? That doesn't make a bit of sense to me. Why would you not provide them for cabs??? Especially cabs??? Further more, IT IS NOT THE CAB COMPANIES RESPONSIBILITY, IT'S THE SCHOOL SYSTEM'S!. And if this were the case why wasn't I informed of this at his IEP meeting or even contacted by someone from the school district way before school started???? She gave me all kind of reason's which of course didn't satisfy me and I wasn't trying to hear. I hung up with her and picked up the phone again.

FINALLY, I got someone to HEAR me. I called the special needs placement center directly and demanded to speak with someone about my son's IEP and his transportation needs. I explained all the back and forth phone calls and how my son's IEP is not being met. She took time and went over the information then there it was an answer...The system doesn't have enough aides "right now", she told me. She couldn't understand why no one informed me of that and I couldn't understand that either. I was told that more aides were in the process of being hired and that as soon as one becomes available DeAndre would have one provided for him.

WOW! I can't believe they first tried to pass the buck to the cab company then only to find out they just don't have enough available. This situation is not over because we still don't have an aide but I will be calling weekly to see how the hiring process is going and how far DeAndre is from getting an school aide to ride with him. We are going into week #3. We shall see how it goes.

It would be such a beautiful thing if I didn't have to work and could take him and pick him up myself but I just can't everyday. My parents have been beautiful, working around their schedules to make sure he gets to and from school but although they don't say it, I know they are tired.

Okay so this is my rant for today ... whew! got it out :) ... Have you had a similar situation? What did you do about it? Has the school system ignored and not complied with your child's IEP?

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A Mom's Cry of Injustice of Her Autistic Son

2011-06-28T10:28:00.003-04:00

I seen this story posted on Facebook and decided to share it on my blog. My heart and prayers go out to this young man who is autistic and his mother who is being the voice for her son..."A Voice For Neli." Please view the video and listen to what has taken place. Be sure to also visit the links below and help spread the word.

Show your support

Read the Huffington Post article:
http://www.huffingtonpost.com/ken-reibel/teen-with-aspergers-arres_b_610530.html

Visit the website:
www.avoiceforneli.com

Follow her on twitter:
@lotusessence

Sign the petition:
http://www.change.org/petitions/pardon-wrongfully-convicted-autistic-youth-neli-latson

The Grinding Has Turned Into A Brrroom Brrroom

2011-04-10T10:41:00.008-04:00

DeAndre has been grinding his teeth before they even came out the gums, lol. Then suddenly one day he found a interest in his toy cars and the sounds some of them made...."brrroom, brrroom" (that's the best I could do when trying to describe with wording, lol).

I'm thinking this is now a comfort to him whereas before he would use the grinding to comfort himself or just because he could do it. And oh my, this used to drive me crazy. When everything was quiet in the house and he was relaxed all you heard was the grinding of his little teeth. Now all he wants to do is make the toy car sounds and insist that who ever is near him at the time participates. And of course he must have a toy car in his hand to roll along. If he doesn't he just makes it into a game...him first "brrroom, brrroom"... your turn "brrroom, brrroom". It's so cute. I think he has the whole family instantly saying "brrroom, brrroom" as soon as they see him...lol. By the way, his bedroom theme is Disney's Cars.

A few good things have come out of this...1. he no longer grinds his teeth 2. it's a new sound he's making 3. he associates the sound with something he's interested in 4. and he doesn't do it as often as grinding his teeth.

Okay Okay, maybe just maybe by coincidence the teeth grinding stopped just as he started doing the toy car sounds. I'm not sure exactly what happened there but I can only assume he has substituted one for the other. As well he has let us know that he can mimic sounds when he's really interested in something...he's adding to his communication skills. So "brrroom brrroom"...Let's Keep It Moving!

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It's Time To "Light It Up Blue"

2011-04-01T18:31:00.003-04:00

To kick start the April - Autism Awareness Month I have once again joined Autism Speaks "Light It Up Blue" Campaign, for World Autism Awareness Day this Saturday. I will also do my part by keeping this blog a tad bit more lively this month. I was going to try doing a daily post but realistically I think I can handle a once or twice a week posting. Daily I will post on my Facebook profiles and page dedicated to my son a quick Autism Fact of the Day.

I was once ignorant of "Autism" until I had my beautiful son DeAndre. When he was diagnosed I immediately started learning all I could and am still learning to this day. Now that I know what I know it is most certainly and without question my duty to support Autistic community by sharing what I know and in all other ways I can.

Awareness is key ... Knowledge is powerful

Take time to learn about autism and what you can do to support the community.

Start here:

AutismSpeaks.Org

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Twitter: @Autism_And_Us

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BE AWARE!!!

Private Insurance and Autism

2011-01-29T16:01:00.003-05:00

Well we knew it was going to come sooner or later and it has come. We went to DeAndre's P.L.A.Y therapy session earlier this week only to be sat down and told that our insurance carrier will no longer pay for the sessions. Wow, what a blow to the head.

I was given 2 options...

Option 1 would be to pay out of pocket...definitely can't do that. The cost for that type of therapy is way beyond what we can afford right now.

Option 2 would be to apply for Medicaid as a supplement to my insurance. If I qualify, DeAndre will receive Medicaid assistance which will cover the therapy.

Right now option 2 is my best option. The only thing I worry about is to qualify you have to meet certain income guidelines. I am going for it...it definitely doesn't hurt to try. I just hope I'm eligible otherwise it's bye, bye to something that has been working for us. As mother always says..."If ain't one thing it's another."

It really baffles me that most private insurance company don't recognize the need for some Autism related services, those behavioral services. I haven't had a chance to speak with my Insurance company as of yet but I am interested in the reason they will give when I do call and ask that "why" question. I guess this is also a que for me to get into more research regarding private insurance and autism. I definitely have to look up information on insurance laws and autism for Michigan. This has just given me another reason to get mad...hey, sometimes you have to get mad to get things moving. *sigh*

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A New Year and All is Good

2011-01-22T20:09:00.006-05:00

It's been a while since I last blogged but as usual this thing called life always calls for other important things, one being rest.

Since my last entry the lil man has been making some notable improvements. One we are most happy with is his willingness to try new foods. His appetite has gotten so much better even to the point he eats his vegetables...that's something to go WOO HOO about, lol.

We made it through his IEP meeting and I was thankful that it went well and everyone who was involved were on the same page. I just knew I was going to be upset about something when I walked into the conference room and was readily prepared but it was just the opposite. I walked out relaxed and with a smile on my face.

My main concern is his communication and speech which was talked about and noted. He will continue receiving daily help from his teacher and will work weekly with the speech/communication therapist. The therapist gave us a device that allows him to listen at his own voice. Hopefully this will help prompt him to make more sounds. As well, we were given information about DPS ATTIC...which offers helpful equipment on loan for special needs students. Anything that will help make life a little easier we are willing to give a try.

The next meeting will be the placement meeting for the new school year from his ECDD class. It was agreed that he will be placed in a classroom for ASD students which will be a small setting of 6 to 8 students. He has been doing so well in his ECDD class, much thanks to his teacher and her assistant, I almost hate to move him :). But for the most part I'm glad my concerns were addressed this time and this meeting was not rushed like the very first one.

I'm still learning a lot about Autism and ASD's. I know this is going to be a long journey but I'm optimistic about our future down this road. DeAndre is such a joy to the family and I couldn't imagine life without him. :)

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Oh My...The Laugh

2010-10-31T19:19:00.004-04:00

I had read about other families experiencing this uncontrollable out of no where laugh their autistic child had but I hadn't experienced it...yet, anyway.

Well a couple weeks ago I put lil man into bed and pulled his door up. I went and sat on my bed which is right across the hall and there it was...laughter. I looked towards his room and at his door and thought, ok the light is out maybe he seeing some shadowy thing or something. After about a couple minutes of him laughing I decided to go investigate. I pushed his door wide open and turned on the light and there he was rolling in the covers cracking up. I pulled up one of his chairs from his play table and sat next to his bed and tried to talk to him asking him what was so funny...he kept at it. I talked, he laughed...I touched him, he laughed...I took the cover off him, he laughed...I laughed, he laughed harder. LOL, all I could say was go figure.

Starting from that day he has been having these periodic laughing spells that just seem to come from out of no where. I can't help but wonder what is going on in that little brain of his. I also see what those other parents were experiencing and understand how it can become so annoying. It starts off cute but if you don't jump right in and try and enjoy the laughter of whatever it is that is funny to them it can become very annoying...very. Especially when it happens late in the night. Yesterday I was so tired I couldn't jump in with him...I had to walk into the other room and leave him to his funny time. I laid across my bed and as I am now baffled by all this...Is this part of the sensory issues he has? hmmm

I'm still learning and I'm determined to figure this out before I pull all my hair out my head. I just want to know...what is so funny?

Another Meeting

2010-10-14T19:06:00.004-04:00

Today went rather well. I had another 20 minute meeting with the school's social worker. It was interview time with me. She also told me about her time observing DeAndre and her thoughts which are on the same page with The Autism Centers diagnosis..."Mildly Autistic" or "ASD/PDD NOS".

She and I both were trying to figure out why this wasn't obvious during our first evaluation with DPS Intake. They had DeAndre as "Specific Learning Disability" with no diagnostic specifics listed. That is a totally different classroom setting. My own personal opinion is I believe they were so backed up with paper work which caused each eval to be spaced out (home teacher, speech therapist, psychologist, occupational therapist) along with my constant calls, they just rushed to put something together...anything they thought would satisfy us. I'm so glad I didn't sit on it and looked for answers elsewhere. I am now starting to feel good about this evaluation even though he still has a few to go before the final determination... Diagnosis/IEP meeting.

The main thing is to get my baby in the proper class room setting and all the therapy he needs. It's my job to get and ensure things keep moving as they should. So as of now I'm starting to mentally relax a little. Frustration from the waiting has settled and I am hoping things will continue to fall in place.

A New School Year

2010-10-06T20:08:00.004-04:00

We are into our first full month at DeAndre's new school. He has adjusted really well with the help of his PK teacher who also transferred over to the new school from the old school. This made the adjustment so much smoother, because he had a familiar adult face who he was comfortable with right there to greet him. Although, leaving school at the end of the day is still an issue, lol. He's always happy to see me and ready to get in the car and jump into his car seat...but just as soon as we get in the house the tantrum starts and I have to just put my wall up and let him have his moment. It's not long until he is back out of it and into the "at home" routine again.

Now although I believe the teachers and aids are doing a magnificent job and I have nothing but love and respect for them, I still encountered a little frustration with the school system itself trying to get a re-evaluation for DeAndre. It is truly a lot of bull you have to go through just to, first get an appointment with the Social Worker who has to start the whole procedure. This appointment should have happened at the end of the last term but for some reason after a few excuses and school ending it didn't. Well finally just when I was about ready to put on my boxing gloves the phone rang. (My feeling is I should have been first on the list when school started back and shouldn't have had to keep requesting a meeting) The other thing I just can't understand is why they just couldn't accept the paper work received from the medical professionals who even have a plan laid out for DeAndre in which I am in full agreement with. This whole process just seems like such a waste of valuable time and valuable time should not be wasted in cases like this. But I'm learning as I go along.

Now, the next step is another IEP meeting and this time I am a little better prepared to speak up about what my son needs, mainly to do with his speech and communication, if we aren't all on the same page. Plus we have a great team of support standing behind us. The first IEP meeting, the more I think about it was just so rushed. Me nor my husband at that time were prepared and we just accepted the program they offered not fully understanding his rights and our rights. But again, now I know better.

Well anyway, while I was waiting for the meeting with the Social Worker I had an opportunity to sit in DeAndre's classroom and observe their routine. He's in a PK ECDD class so all the other kids have special needs also. It was about 7 of them and they all knew the morning routines. The teacher and her aid seem very comfortable and showed a beautiful display of patience with the kids and that is important. DeAndre didn't seem to notice me at all sitting there... he was so into it and that made me feel real good. He really enjoyed the song and dance they did during circle time and knew just what to do, as did the other kids. During the ABC song, although he is non verbal I can tell he was singing in his head...his attention was dead on the teacher as she sang to them and his expression on his face said he was in a moment of enjoyment and understanding. I will be making more trips to sit in his class sessions throughout the school year to learn more from his teacher and the other kids like him. This is going to be a ongoing learning process not only for him but me as well....and it's a beautiful thing :)

Now back to waiting for the phone to ring and get the new IEP together and working for the rest of the school year.

The Walk

2010-10-05T06:24:00.008-04:00

We Did It!!! This was our first year walking with "Walk Now For Autism Speaks" in Auburn Hills, Mi on October 3rd and I am looking forward to doing the walk each year. I really appreciate the support of my best friend Karen along with my oldest son's girlfriend Alex and a few of her friends from U of M who came out to support DeAndre and Autism Awareness by doing the walk with us...much love to all of them.

It felt good knowing that this walk helped bring awareness about autism, as well as, a way to gain support for research and related autism programs. Such a beautiful thing.

I enjoyed meeting other people who were also there to support the cause, which included people who are affected by autism in one way or the other...it's always nice to know you are not alone. Autism is a big issue that affects so many, every little bit of support helps. I was also able to get lots of great information and the kids enjoyed a time of playful activities. It was a great way to celebrate my birthday. :)

To view the pictures of our day visit the Autism And Us Facebook page: CLICK HERE

We Will Be Joining the Walk Now For Autism Speaks Oct 3

2010-09-14T15:58:00.005-04:00

Here is an updated video of me and DeAndre (lil man) taped today. We will be joining the "Walk Now For Autism Speaks" on Oct 3rd (my birthday) and I am asking for your support.

http://blba.us/i.asp?id=347937-298442594-2

This video is also available for viewing on my Youtube Channel. My channel will not totally be dedicated to our Autism journey but he loves the camera, so there will definitely be more of his smiling face and adventures on camera to come :) ...You can subscribe and/or friend me here: http://www.youtube.com/SociableNita

Before The ASD-PDD/NOS Diagnosis Video

2010-08-30T19:03:00.007-04:00

In September of 2009 I created a quick video with DeAndre to share with a few special friends. This was shot before the diagnosis (Autism Spectrum Disorder-PDD/NOS). I've decided to share it now with the world.

I'm still asking for everyone to continue praying for us as we make our way through the autism journey.

DeAndre And I - September 2009

You can keep up with us on YouTube...My channel will not totally be dedicated to our Autism journey but he loves the camera, so there will definitely be more of his smiling face and adventures on camera to come :) ...You can subscribe and/or friend me here: http://www.youtube.com/SociableNita

Help Me Reach My Goal

2010-08-01T00:04:00.006-04:00

I am joining in the "Walk Now For Autism Speaks" on October 3rd 2010. Which also happens to be my birthday :). What a beautiful way for me to celebrate.

The more I learn about Autism the more I have become passionate on doing something, anything and all that I can in an effort to "help". I was invited to join the "Connecting the Missing Pieces" team by my son's P.L.A.Y Project therapist, Amanda...Thanks Amanda :).

My main reason for joining the Walk is for of course my son DeAndre who was diagnosed on the spectrum earlier this year. I will also Walk in the hopes that someday there will be a definite reason why Autism affects so many lives and in hopes that there will one day be a cure for all those who suffer with Autism, young and old.

So with that said I am asking for your support. I am including a link in this post to my "Walk Now For Autism Speaks" personal donations page, where you can donate to the cause...(all donations go directly to Autism Speaks and are tax deductable). You can also register with our team "Connecting the Missing Pieces" and join us in the walk if you'd like :). If you are unable to donate or walk, your thoughts and blessings are appreciated, you can share that just by commenting on this post, I'd love to hear from you.

CLICK HERE to donate to the "Walk Now For Autism Speaks" cause and help me reach my goal.

The P.L.A.Y Project

2010-07-15T19:13:00.005-04:00

This week we went to our second P.L.A.Y Project therapy meeting for DeAndre. P.L.A.Y is the acronym for Play and Language for Autistic Youngsters and is based on the D.I.R/ Floortime model. I think this is something that will be enjoyable for the whole family because we are incorporating something that we already do with DeAndre but only during these times he is allowed to initiate what he wants to do...he'll be the boss :).

I'm really excited and looking forward to the next sessions to come. As this will allow a little more closeness with him and we will get a better understanding of his wants and needs. As they put it, we will be entering into his world...it'll take out most of the guess work.

The other thing I like about this is as part of The P.L.A.Y Project we have someone else there to support us, help with school issues, answer our questions and give us valuable resources and information

I am interested in others who have used this model and their success with it. Please feel free to comment if you or someone you know has or is still using The P.L.A.Y Project Therapy model. I definitely want to hear your stories.

If you are interested in receiving more information about The P.L.A.Y Project please visit:
http://www.playproject.org/

If you are in the Detroit/Wayne County area visit:
http://www.thechildrenscenter.com

A Beautiful Day Spent

2010-07-05T01:52:00.006-04:00

Yesterday was the Independence Day Holiday. I celebrated with the family out at Waldenwoods Resort. DeAndre suprisingly was not too hyped up as he usually is, lol. He of course did his usual thing, like mimiking the guitar playing and singing on his pretend mic, which is usually anything he can hold in his hand. So the family got a show. I will definitely need to start video taping those moments.

His birthday is coming up on the 7th, so we did as we have for the last couple of years since all the family was together (except for his dad...he'll have his day this week :) ) and gave DeAndre a pre-birthday celebration as well.

I am so sorry that I didn't get the pic right after he blew out his candles and by the way, he didn't need any help this year...Yey!. As soon as the cupcake was set on his plate he dove right into it, lol...his face was red, white and blue before I knew it...oh but what a beautiful face it was...priceless. :)

Even after all that sugar, he remained rather calm and started to yawn not too long afterwards. So I knew after this beautiful day of time spent with the family, play and a nice walk to the beach to play in the water he would be nice and ready to fall right off to sleep with no problems. Yes, its a beautiful thing. He was sleep by 9:30pm. The ride home helped.

I'm still going to cross my fingers with hope that we don't have a "wake up in the middle of the night" episode. I'm trying my best not to use the meds because of course the doctor doubled the dose. She told me they start them on a low dose then raise it if needed, just to see what works. Which makes sense to me. But for now I'm going to hold out a little while longer until I can do some good research on the meds and natural alternatives for my own peace of mind. I also want to wait til my next visit with the doctor so I can talk to her face to face. She wasn't available when I called so I spoke with the Nurse Practitioner.

Non the less, today was a beautiful day spent with DeAndre and the rest of my beautiful family. Now its time for me to get in my bed. It's after 2am...so far, so good...GOODNIGHT!

Not a Good Night

2010-06-21T20:36:00.003-04:00

Last night was just not a good night for little man or me. Just when I thought his sleep was all together...BAM! I gave him his meds as usual about 7:30pm, he finally drifted off to sleep around 11 (yeah, I know...lol). This was after being up all day without a nap. My alarm usually goes off at 3:15am but at about 2:30am I was startled awake by his loud screams and kicking his walls. When he goes through that I usually have to wait for him to want to allow me to touch or hold him otherwise he just gets louder. Until then I just go sit on his bedroom floor and watch him go through his motions to make sure he doesn't hurt himself.

After about 25 minutes him going through his motions he finally got out of the bed to look for me...I was right there. So I held him and sang to him for about 15 more minutes til it was time for me to get ready and get out of the house for work. My daughter took over from that point. I'm so glad I have an older daughter who is here to help me take care of her brother while school is out and I also thank GOD for my mother who is on call when I need her.

When DeAndre goes through these night spells it almost seems as if he's having a very bad dream or he's hurting. I feel so helpless cause I don't know what to do. I have read a couple of books that say to check gastrointestinal problems. So that may just be my next move to see a specialist for this.

I was hopeful the Risperdal his Neurologist proscribed was an answer but the calmness affect didn't last but a couple weeks. I have a funny feeling when I call her office tomorrow she may tell me to up the dose. Since I only give it to him during bedtime I think I will tell her I want to try some sort of natural solution first before I up the dose and while I'm in the process of seeing if there are any gastro problems. Also, since the meds don't seem to be working I am skipping the dosage tonight and see what happens...(wish us some good sleep :) )

Anyhoo...You can just imagine how my work mornings are after he goes through his spells. Nope, the night was not a good night. Hopefully tonight will be better.

How Cool Is This - Sensory Friendly Movies

2010-06-18T21:24:00.004-04:00

I was just looking through my paperwork of information and discovered that the AMC movie theater offers Sensory Friendly Movie Time. This information can also be found on the Autism Society of America's website. Now how cool is this.

This is a great way for families affected by autism and other disabilities to have an enjoyable time at the movies. The lights will be dim and the sound turned down. What's really cool is the children will be able to walk around and make as much noise as they want without worry of someone saying could you please shut that kid up, being asked to leave or trying to make your child sit still or down. You are even allowed to bring snacks for those who have special dietary needs. Now how cool is this.

They have been offering this for over a year now and from what I gather it's been a great success. I am definitely going to take advantage of this opportunity with my lil man, DeAndre.

This months showing is Toy Story 3 on the 26th...it would be on the very day I have planned for me and the girls to go to Cedar Point but there will be other times.

I just wanted to give two thumbs up for AMC and The Autism Society for partnering together to offer these Sensory Friendly showings for our families.

It's The End of the School Year

2010-06-16T17:08:00.008-04:00

So the school year is just about over for my "at home" three. My oldest daughter has just graduated high school this past Saturday...A Big Hooray for her...I am proud of her for keeping that determination and finishing her high school career...she is ready to move forward. DeAndre's last day was Monday and my 10 year old daughter, who is an honor roll student and determined she's going to be a Doctor for animals, as she puts it, has just enjoyed her end of the school year field trip to our states Capital...her last day is Friday.

Although DeAndre only had the opportunity to take part in just one month of ECDD class this school year I can tell he enjoyed the experience and notice little behavioral changes. His teacher was very helpful and seemed to enjoy working with special needs preschoolers. She even took the time to show me a few techniques I can use at home with him during the summer. Transition from school back home everyday has been a challenge for both him and I. I'm laughing about it now. He'd always be happy to see me when I arrive at the school and willingly ready to get in the car and into his car seat, but as soon as we pull up in the driveway of our home and I open his door he would have a fit. I usually had to calmly talk him out of his car seat, out of the car and into the house. Once he was inside and I closed the door behind me, the fit continued, so I would just sit on the sofa and let him have his moment. Now we have a summer break from this routine and I can only wonder will he miss it.

For the summer I have enrolled us at "The Children's Center" to get started with their P.L.A.Y program (Play and Language for Autistic Youngsters). This will help to keep things moving while schools out this summer, as well as help the family learn ways to help DeAndre more at home. What I also like about this program is they will also do their own assessment of DeAndre's needs and the therapist that is working with us will attend his next IEP meeting with the school which is to be at the beginning of the new school year. At his very first IEP meeting, I felt rushed and really didn't know what I know now. My main focus then was just to get my baby some help. After realizing that I wasn't comfortable with the Detroit Public Schools diagnosis of "Specific Learning Disablility" and what they offered I went after a private diagnosis and now along with The Children's Center's evaluation, I'll have more to work with and will move forward to have changes made to his IEP and hopefully without fail get what's most appropriate for him.

I'm also on the hunt for a speech therapist for the summer. We are currently on a waiting list with Children's Hospital, which they say can take up to 4 - 6 months before we can get in. I was warned before I called that there would be a waiting list, but didn't know it would be that long of a list...WOW.

So there is much to do and look forward to. :)

DeAndre's Very First School Picture
PreSchool 2010

The Autism Spectrum Disorder Diagnosis

2010-06-14T18:44:00.006-04:00

From what we had read and were told by others who have dealt or dealing with someone on the autism spectrum, we already knew DeAndre would probably be somewhere there to. We had also learned that every child on the spectrum is different, they may share some of the same symptoms but not all. So when we were told at our meeting after his evaluation that DeAndre had ASD we were not suprised...maybe just a little hopeful it was something that would pass fast.

DeAndre was diagnosed with Pervasive Developmental Disorder/ Not otherwise specified because he shows most of the typical signs of autism but he still is social most of the time. Meaning he will interact with others and smile most of the time. I should add he loves giving "mommy" sweet little kisses too :).

Some of his symptoms include;

- Stemming or Stereotypical Behaviors: teeth grinding, raises hand to face
- Temper Tantrums
- Non Verbal: Regression. Makes sounds and loves to hear himself scream
- Sleep Problems: Has issues staying asleep. Will wake in the middle of the night screaming and kicking at the wall.
- Sensory issues: At times he doesn't like to be dressed. It's almost as if the clothing is hurting him. During these times if you put something on him he takes it off.
- Transition Problems:
- Limited Diet: I can count on my hands just about all the foods he will eat. When he was a small baby he used to like to try a little of everything. Now if you make him put something in his mouth he doesn't want he spits it right back out. Here's what he'll eat now, include, Ravioli, Spaghetti (Plain Sauce), Peanut Butter Sandwich, Toasted Bread, Hot Dog (no bread and has to be cut in pieces)
- Appears Not To Hear You When Name Is Called At Times/Doesn't Respond to Instructions
- Doesn't Want To Be Held Or Comforted At Times
- Sensitive to Light and Certain Sounds
- Obsessed with his toy Guitars and mimicking a Guitar Player. (So you know what he got for Christmas...not 1 but 4, lol)
- Difficulty with Potty Training

He has a few other issues but that is the core. The two things that drive me crazy are the teeth grinding and the temper tantrums which happen usually when we are in transition from one place to another...ooo wee. And then there are times he will cry out so loud I'm not sure if he's in pain or not...sometimes it makes me cry because I just don't know what to do to make him feel better.

His sleep problems had gotten so bad I took the suggestion of his Neurologist and give him a small dose of Risperdal during the weeknights when I have to work and he has to get up for school. She also suggested I give him a dose in the morning before school but as of now I won't do it. I would rather him be alert during class time and not too relaxed. The medication helps him to sleep soundly and me too at night. If he does happen to wake up during the night now he's not screaming and kicking the walls as if he's had a very bad dream or something is really hurting him.

And our lives continue living on the spectrum of Autism.

And So Here We Are

2010-06-13T00:23:00.003-04:00

I guess when things started to become really noticeable I was sort of in that denial stage. I didn't want to believe that anything could possibly be wrong with my little man.

DeAndre was a vibrant and happy baby. He'd always flash a smile and he loved for you to smile back at him and take notice. Although, very few, he did have words. My favorite was when he'd walk up to me and get dead in my face with a big smile and say "HI". You would have had to hear it...it was so cute.

At around 15 months we took him in for his check up. He was to get 4 shots this day. I couldn't bare to watch so I walked out of the room leaving my husband and the nurse to handle it. Now, I'm not at all implying that this could have been the cause of what happened to my baby but that thought is always in my mind..."What if?".

Well after a couple weeks my husband begin to notice that DeAndre wasn't saying those cute little words as before. He wasn't saying anything. He still smiled from time to time but it just wasn't the same. We discussed this with the doctor and she said he was fine and that we shouldn't worry...so I went into denial mode and agreed with doc...why wouldn't I. After all she's the professional.

After hearing the words "somethings wrong" from more then three people I finally accepted the fact that there was something wrong. So not long after his second birthday we took him to his pedi appointment and once again discussed our concerns with the doctor. I guess she couldn't do anything but agree and at this point she gave us some information to get him into an early intervention program. The word "autism" hadn't come up yet. My thought was maybe he just had a hearing problem because of his non responsiveness and being non verbal. But that wasn't the case, baby boy could hear just fine. Other things were ruled out too.

So to make this long story short...his first evaluation was done by the Detroit Public Schools. Through them he was just diagnosed with a "Learning Disablity" and possible "ADHD". I was not satisfied with that and by this time I had learned a little about Autism and made him an appointment with a pediatric neurologist who gave her own assumption that it was Autism but to confirm what she already knew and us too referred DeAndre to get a neuropsychological evaluation from "The Children's Hospital Autism Center" here in Michigan. He has been diagnosed with an Autism Spectrum Disorder - Pervasive Developmental Disorder/Not otherwise specified.

And so here we are...our journey begins living on the spectrum.

I decided to start this blog as a way to journal our journey and to share with others our story as our story progresses. In my next post I will detail a little more about what ASD-PDD/NOS is and why DeAndre was diagnosed with it. Until next time... :)