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Maresa
01-12-2005, 10:36 PM
Hello all,

Just realized that I have not yet formally introduced myself yet. My name is Maresa, and Im the mother of 4 girls. Kristen 10, Stephanie 8, Caitlin 6 and Meagan 1. Our 6 year old Caitlin, started exhibiting signs of abnormalities at 18 months of age shortly after her 16 month old imminuzations.

Prior to this Caitlin was very normal in every respect and had already aqquired over a dozen words that she used to respond and communicate with us. After she received her imminuzations there was a decline so gradual that we did not notice until appx 2 months later that something was wrong with her. During this period of time she stopped communicating all together, would have terrible and violent outbursts of temper, ignored us when we called her name, preffered being alone, liked to line up objects from one end of the house to the other, and was having frequent staring spells. Additionally, Caitlin's right eye seemed as if it was misaligned very slighly outward.

Not knowing what could be wrong, and after hearing so many relatives dismiss my worries, I did nothing. However, 6 months later I found bloody footprints across my kitchen floor and became alarmed! None of my children were crying, I promptly grabbed Caitlin, and discovered she had stepped on a broken glass christmas bulb in the garage. It was then I knew, something was seriously wrong. Surely that must have hurt! I called her pediatrician and was told to bring her in. They promptly reffered her to Shands hospital for a visit to the pediatric neurologist. I was also reffered to the early intervention program with the public schools, and later to private speech and occupational therapies.

As I had to wait on the refferals I decided to research on my own about my daughter's strange and puzzling symptoms and found symptoms of Autism to match my daughter's symptoms. My husband also agreed upon reading about Autism that this is what our daughter must have! Additionally, we believed that our daughter was having seizures, petit mal and that we would discuss this with her neurologist at our upcoming appt.

The day finally came for the appt, Caitlin was scheduled for an EEG, and MRI. The MRI came back normal with no abnormalities. The EEG showed signifigant abnormalities and it was later determined (at age 4.8) through a 5 day video EEG that Caitlin was having several seizures and abnormal brain activity signifigant for Focal Seizures in her right hemisphere. They also discovered an eptilogenic region in her brain that will heighten her risk for grand-mal seizures. Henceforth, she has medication that we keep to inject just in case. We decided not to give her medicine on a daily basis for the focal seizures. Additonally, the pediatric neurologist signed an order that our daughter is to receive no more vaccinations as this is what is believed to have triggered the seizures; thus causing the delays and autism type symptoms.

While she was hospitalized at 4.8 years old, a team of pediatric psychologists came in and concurred at the time they thought our daughter had PDD-NOS. They conducted brief testing, and Caitlin would not cooperate with the intern. She had been watching Dora The Explorer and was confined to her hospital bed for 3 days at this point. The Psychology intern, shut off the television on her without warning or preparing her. Therefore, they felt under the conditions in which she was tested their results might be questionable. they urged us to follow up with more testing.

I was given a refferal for and joined CARD (Center for Autism and Related disabilites) in Florida. To get more support and changed my major at my university to Psychology. It is my hope to get my Masters in Developmental Psychology to work with these children. I have a 4.0 GPA and have obtained 84 credit hours towards my Bachelors

I have met many, many autistic children. To me they are so unique and special and they make me smile. I have learned alot from my Caitlin, and she from me. She is affectionate, and extremely bright and funny. She is extremely verbal now, although she has many difficulites understanding concrete conversations, and reading cues from other people. She believes that everyone loves her, and it hurts her more than anything for other children to say to her that they will not be her friend.

She has come a long way from where she was. She did not become verbal until 4, she did not use a spoon until 3. Acedemically speaking, in the beginning they offered me little hope when she ws 2 as to the outcome of her future. This year she started kindergarten and is in a integrated class. She is right on target with her kindergarten skills although the teacher has to constantly redirect her attention. She has auditory processing deficits so she was approved for headset use in her classes and it is a big help. In addition they ran additional tests on her and just this week the school Psychologist whom has a Phd; diagnosed her "Autistic" for her IEP, and she will get everything she needs! Yay! The school Psychologist thinks Caitlin is actually Aspergers as she is extremely high functioning, however he said that the lable of Autism will ensure that she will get all she needs as Florida school system does not recognize Aspergers as "Autism". Very sad indeed, because there is such a broad scope to this spectrum.

Anyway, this is the jest of our story. It is nice to be here and meet all of you. :)

Maresa

Maresa
01-15-2005, 03:31 AM
Hmmmmm....Is anyone there? :confused: I was looking forward to being a part of this group. Seemed nice enough, as everyone here can relate to one another raising autistic kids and all. Somehow though I do not feel very welcome here though, no one at all has even bothered to respond to my post or say hello to me. :( Im a very nice person, I promise you that on a good day I won't bite! lol :D

Anyone there?

AutMom
01-15-2005, 08:39 AM
Welcome to the group Maresa! :) It can be rather slow here at times though its picked up recently I think. Sounds like you have things under control, which may be another reason for getting no responses.

Does your daughter enjoy kindergarten?

Maresa
01-15-2005, 07:43 PM
Hi Aut Mom,

She enjoys Kindergarten once she is there but most of the time she tries every baganing tactic she can think of to stay home! lol She is very obsessed with being close to me, so sometimes we have our battle of the wills. I would think this is quite normal in any case.

Nice to meet you, anyway. You sound like your a pro, having dealed with this for so many years in your son. How was his schooling? Was he enrolled in the public school system? Did you run into problems? Im still learning alot, and know I can learn best from those who have been there. :) Thanks again for saying hello, Im relieved! lol

Best Regards,
Maresa

AutMom
01-15-2005, 08:24 PM
My son was in the public school system. He had a 1:1 to assist him, and his program became more individualized as he grew older. Of course there were different problems over the years.

autimom
01-16-2005, 09:54 AM
hi maresa this is my first time posting here i'm more of a lurker sadly enough. caitlin sounds like my daughter, she is very bright and funny and loves everyone you mentioned a headset for use in the classroom can you tell me a little more about it? oh yeah i'm tonya, mommy to a beautiful 7 year old individual

autimom
01-16-2005, 09:59 AM
one more for maresa, my child's father lives in tampa we have thought about relocating so she can be close to him but she is eligable for many services where we live now I'm a little afraid of the move,any advice?

cuddly toddler
01-16-2005, 10:10 AM
I.m also new, but after reading several of the stories on this site I feel like I have so many similarities with many of these parents that it's scary. I have a three year old daughter who is autistic, with no current verbal communication. She is very very gorgeous and adorable, and she is the best thing that ever happened to me. However, like so many of you mums, I am scared because she does tend to wander-off, and can go up to a complete stranger and stretch her arms out to be picked up by them. She has very minimal awareness of danger, if any.

cuddly toddler
01-16-2005, 10:21 AM
:) [QUOTE=cuddly toddler]I.m also new, but after reading several of the stories on this site I feel like I have so many similarities with many of these parents that it's scary. I have a three year old daughter who is autistic, with no current verbal communication. She is very very gorgeous and adorable, and she is the best thing that ever happened to me. However, like so many of you mums, I am scared because she does tend to wander-off, and can go up to a complete stranger and stretch her arms out to be picked up by them. She has very minimal awareness of danger, if any. :) [/QUOTE]

autimom
01-16-2005, 10:52 AM
hi cuddlytoddler, i have recently read about bracelets some parents are buying that are basically a locator i haven't looked into them much my daughter is older now and doesn't tend to wander anymore but they are a great concept, maybe you could find them doing a search for child locator or tracking devices or even autism related devices they've been discussed alot since the little boy in pa wandered away from home, nice to meet you

AutMom
01-16-2005, 01:48 PM
[QUOTE=autimom]maybe you could find them doing a search for child locator or tracking devices or even autism related devices [/QUOTE]
This thread has info:
http://www.togetherforautism.org/showthread.php?p=1147#post1147

Maresa
01-19-2005, 08:17 AM
[QUOTE=autimom]one more for maresa, my child's father lives in tampa we have thought about relocating so she can be close to him but she is eligable for many services where we live now I'm a little afraid of the move,any advice?[/QUOTE]

Hi Tonya,

Nice to meet you. As far as a headset it concerned, it is not that my daughter has any specific hearing problems in the physical sense (normal hearing tests), however as is the case with many of these children they have deficits with auditory processing. Many autistic children cannot be told to do three things in sequence, since they cannot process too much information at once. You could tell my Caity for example, to get a plate, bring the plate to the table, and go get yourself a glass for milk. She would just stand there trying to process everything I had just told her. She processes one step directions much easier, and that is just the way it is due to auditory processing issues. In another sense, auditory processing is also greatly affected by distractions in a classroom such as noise level. (obviously the noise level is quite high in a kindergarten class) making it harder for our kind of children to concentrate.

It was Caitlin's private speech therapist who discovered that Caity performed much better when given a headset to wear and did not zone out quite as much. Caitlin's school was reluctant at first to discuss the idea of her own FM set when I brought it up to them for classroom use. Thus, I talked again to Caity's therapist and she made refferals for an audilogical test (She knew what we were up against for the IEP) The audiologist, tested and agreed it was not a hearing problem but an auditory processing deficit. I have been blessed with wonderful therapy for her, and both the audiologist and speech therapist wrote letters of reccomendation for Caitlin to have a headset at school. The ESE team still, STILL did not want to approve it, BUT reluctantly, and I mean extremely reluctantly decided to call in an expert from the school board to observe Caity and give her opinion on whether or not the headset was necessary. Thus, this expert came in and agreed Caity had a deficit as she constantly needs redirection from the teacher!!! So the school purchased an $800 FM Set for Caity. The teacher puts a small microphone on her collar, and Caity listens through her headphones. Anyway this was a small victory, in this crazy world of ESE, and IEP's.

Now as far as your plan to move to Florida. I wish I could find nicer things to say, but unfortunately our state is lagging far behind in properly placing these children. I am in North Central Florida, and have it much better than my friend in Palm Harbor (Near the Tampa area) My friend has a son with aspergers and they refuse to give him speech or occupational therapy, he has severe behavioral issues and they keep telling her that aspergers is not autism, and without a diagnosis of "Autism" he cannot be placed in special services. She is very upset, her little boy has been suspended from school numerous times and they have even went as far as to now label him instead as emotionally handicapped and kick him out of one school, to send him to another only to have more problems!!! He desperately needs therapy and services, her insurance refuses to pay for private therapies for autism, They make too much money to qualify for help, yet not enough to pay for everything. Another problem is that he is extremely smart, and the school he is at now is saying that someone that smart is not autistic. They told her Florida only recognizes autistic as having some degree of mental retardation. Her son scored 118 on the IQ tests done at school, therefore they would rather assume that he is a behavioral problem or EH than anything else!! :(
She is new to this world, as her son was only diagnosed about 6 months ago, so any advice to her would be gold.

Anyway, Nice to meet you again Tonya! :)

Best Regards,
Maresa

autimom
01-26-2005, 09:05 AM
hi maresa, sorry i didn't find your post until today thankyou so much my daughter also has auditory processing issues, she wore earplugs to school for a long time but she has had ear infections alot lately and cannot wear her earplugs, lots of good info she has a dx of pdd-nos (pervasive devlopemental disorder-not otherwise specified)and i bet they wouldn't consider that autism either. i read years ago the only way to determine who will be hf or lf is whether or not there is mr but i think alot of kids with sensory problems never learn to cope without intervention.