Post your childs diagnosis!! - Page 3 - Mothering Forums

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Old 07-08-2004, 02:23 PM - Thread Starter
 
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Sisima, I feel honored that you would join us.
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Old 07-10-2004, 12:26 AM
 
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Simisma,

There was a possibility that my son was going to be born with Trisomy 13 as an Omphalocele is a "symptom" of it but he was born with an "isolated Omphalocele".

I heard many such comments as my son's condition was/is very bad. Our doctors said he would not make it to birth...then that he wouldn't make it through birth...then he wouldn't live a month...etc. It was very hard. We have been lucky as ds is still with us. My thoughts are with you. Your baby will teach you a lot of yourself and those around you.
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Old 07-10-2004, 11:27 PM
 
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Thank you all for your kind words. I am shocked at people's thoughtlessness over and over. You are all heroes to me. Since posting, my aunt has come out and said she wished I'd had an abortion, too. Having known my mother and aunt for 4 decades, you would think I wouldn't be surprised anymore. The depth of my anger tells me I am not overreacting. It is really a completely uncalled-for and out-of-place thing to say to ME. They are welcome to think these things and agree upon it amongst themselves, but why would they tell me that? I have been living this pregnancy, knowing the diagnosis since mid-April, wondering occasionally why my family wasn't calling like my husband's had. They are too dysfunctional to deal with this, apparently. Ladies, as you can tell, I am disappointed in my elder female relations, who would prefer to talk about the weather and the movies they're watching than say anything meaningful. I deeply appreciate the opportunity to vent, hoping it wasn't too unpleasant for you, and especially your wisdom and warmth. What a relief to come here and be understood.
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Old 07-10-2004, 11:56 PM
 
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Reading your posts again is so helpful to me. I realize it is time to let go of my anger now that I finally truly felt it. As our baby isn't born yet, it is such a strange place to be, waiting to see what will happen, but a large part of me is at peace with it and has been ever since our midwife said: Go on with your birth. It felt like coming home when she said that after the specialists with their awful options and their insistence that the condition is absolutely lethal. We are fortunate to know and have had time to learn about the syndrome. I almost canceled that ultrasound! I am humbled reading about your experiences. Thank you so much for sharing.
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Old 07-11-2004, 09:30 AM
 
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Simisma, we are here for you. I completely understand about unsupportive family members. I hope you are aware of the grief cycle. We all tend to go through it several times during these times. Take care of yourself and get to know your baby. Do whatever you would like to do to remember this babe. He/She will always be a part of your life and affect everyone in your family, whether they like it or not.
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Old 07-13-2004, 03:35 PM
 
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HI IM christy an my oldest daughter has tourettes.. She goes to a neruologist on the 20th of july.. We have known she has had this since she was 5 and she started with the vocal tic then it went ot the body tics..after doing my own research and reading i have learned she has really had this since she was born .. When she was a baby she would make this noise when she was falling asleep .. we as first time parents thought ok this is just her thing.. Then she started with nosesniffing and then throat clearing then it was the loud vocal tics.. then then full body.. oh and at around 3 years old shew ould stiffen her hands and squeeze them if youw ere holding them.. Its been very hard to deal with it in public for adults are far more rude then children
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Old 07-14-2004, 04:40 PM
 
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Hi everyone!!

My ds is almost 6 and I haven't had him evaluated yet but I think I have put it off for too long and really need to have it done. My own best guess is ADHD possibly ODD with a few sensory issues. Nothing major but he is very picky about sheets and stuff, he often doesn't want them on the bed at all, he is picky about clothing, tags bother him. I have to cut his food just so or he won't eat.

I have 2 other kids that except for some allergies seem to be ok. Although I think the baby might have some muscle tone issues with one of her legs, her hand and arm cordinations are great and she is a bit advanced but with standing, crawling, sitting she is behind.

Simisma s how hurtful to hear from family . I heard the same things when I was pregnant with my ds, but not because he was special needs but because I was quote "too young to be having a baby". Good grief some people do not think of how they will make other's feel when they open their mouth :
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Old 07-16-2004, 04:04 AM
 
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i have a nine year old with asperger's syndrome.
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Old 07-18-2004, 06:41 PM
 
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Hi mamas,
I am new to MDC, but wanted to share about my sweet dd, and introduce myself and officially join this forum!
My dd is 8, and she has been diagnosed w/ ASD. She is the most loving, sweet and friendliest child that I have ever known, but certain things are a real challenge for her. For example, staying on task and focusing on something, following 2+ step directions, her fine motor skills, her level of distractability, she's also very hyper and extremely sensitive to loud noises.
Dd is also in speech therapy and occupational therapy, which has been wonderful for her.
It's very challenging to have a conversation w/ dd, because her sentences are usually very random and sometimes unrelated to what we're talking about. It's almost like she has so many thoughts flying around that she can't keep track of them!
She is a lover of all animals, and is so, so very sweet and helpful. This year she was in a special needs classroom for ASD, and it was amazing. She's now reading on a 4th grade level, and her speech has dramatically improved. She's becoming more and more independent, and her social skills are really blossoming.
Looking fwd to getting to know everyone!
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Old 07-20-2004, 03:00 AM
 
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Hi there- I just posted on another thread, but thought I'd post here, too.

My ds has asperger's and bipolar disorder. He is nine. His dad has also
been diagnosed with AS. So glad to have the diagnoses, as now I
can have greater understanding and compassion for both of their struggles.
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Old 07-20-2004, 10:19 PM - Thread Starter
 
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Old 07-21-2004, 02:23 AM
 
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Thank you for your thoughtful responses. It really helps me to not feel so alone with this. We keep finding more and more people who don't understand why we are having this baby, who are actually able to ask me or dh that (couldn't the doctors do something to take " it " away? they ask and I am 7 months along) and then coming here where the parents on this forum just seem to understand is such a contrast. Now we should find out the percentage of each type that was breastfed and see how different that is. It's funny, though, my mom and her sisters (a family of 9 homebirthed kids) should have been bf during the depression. Maybe they were really close together and starved for attention. Why does that 70+ generation of women have such a crappy attitude towards birth and parenting? - Awful generalization, my apologies. In any case, I feel enveloped by warmth here. Thank you.
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Old 07-21-2004, 01:19 PM - Thread Starter
 
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Old 07-22-2004, 09:08 PM
 
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hi! i'm nicole, mama to zane, almost 4, and reidun, 2. zane was diagnosed in october of '02 with asd, speech apraxia, and sid. he is also echolalic to the extreme at times. right now we are struggling with some rage and violence issues- he is biting, hitting and grabbing his younger sister by the neck when he gets frustrated. so far he has not done any of this at school, so we are assuming it is some form of intense sibling rivalry. we are lucky to live where we do- he has year-round services through the school district and we do have pretty comprehensive health insurance to cover the rest. (thank you dh's union) zane was an almost 32 week preemie, and had multiple problems at birth. we suspected autism at about 13 months, but had to wait to begin the process of diagnosing it until we had a set of tubes placed at 15 months.

he's talking now- and we have our good days and bad days. communication is still difficult- we use a lot of pecs when he is zoned out, but most of the time can try to have a conversation. i will answer any question at any time about my son to anyone- i also will tell anyone giving him odd looks or making rude comments about his behavior exactly what his diagnosis is. i figure he can't help who he is, just like they can't help being rude and judgemental.
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Old 07-22-2004, 09:38 PM
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Well.. we might have a diagnosis...

He's not slow in communicating, but the therapist/development specialist said that although our son's receptive language abilities were fine, his expressive was several months behind, but within "normal" limits.

And with the previous poster mentioning "apraxia" and my quick little bit of research, we're wondering if DS has that. She noticed there was a huge gulf between the two language abilities and that might be what it is.

We both figure DS will catch up now that he's spending time in daycare or when he starts headstart next year.

We'll see what happens.
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Old 07-26-2004, 11:15 PM
 
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Well i dont know if this is the place to post, and i didnt see anyones childs with this but i will post here.

My dd is 16 months old, she was diagnosed with bilateral clubfoot when she was born.
Meaning that both of her feet were turned in, the rested very nicely together when she was born. She was casted at second day, she had surgery at 5 months, more casts. then a break, then more casts for about 6 weeks then the Denis Browne Bar brace, had problems and now we are trying it again.

Well this is nothing compared to what most of you are going thru, god bless all of you and your sweet children.

edited to add: she also has an egg allergy, questionable seasonal allergies, and lactose intolerance.

Allyn birthmom to S 3/12/03, placed in open adoption 4/06, married to W 6/22/07, mama to H 2/5/08, mama to M 8/26/12.
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Old 07-31-2004, 03:29 AM
 
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My intro post gives the details, but I have 4 special and unique children, as well as a special needs DH. I Attachment Parented co-slept aand extended BF all my kids.

DH and two of our sons have Asperger's syndrome with all the autism spectrum issues that come with it. My DD in addition is strongly traited, if not fully blown AS. She at least is ADD/LD/Gifted, with sensory issues! I am still deciding whether or not to persue a diagnosis for her, but she is thriving in the homeschool/learning center situation we have set up for her so for now while she is just starting puberty I am not going to rock the boat! My youngest child Nick is 2.5 and I am mostly sure he's neurologically "normal" although very spirited He pretends typically and tells me how he's feeling. He has overall seemed more "integrated" since birth, slept better, ate better, just more calm and "together" Easygoing baby, but very energetic and busy now Typical mischevious 2 1/2 yr old who likes teasing his siblings LOL

My AS kids are actually very affectionate and have friends so it was hard to disgnose them.

My older son seemed to have overcome his issues and did great in school until our move, and this last year he just fell apart. Anxiety and the increased workload of 3rd grade were just too much. He spent most of the school year immersed in his Harry Potter book re-reading it over and over to escape. His one bright spot was his thursday science TAG class where he made a friend. Max lived for thursdays this year!

Jake started K after a moderately sucessful preschool year ( they said K would be a challenge at his parent teacher conf) and didn't do very well. Academically he's brilliant, but he tests socially and emotionally at 24 months! He also has significant challenges with self-regulation melting down due to his low frustration tolerance. So it was a really rough time, and until we had a formal diagnosis I really struggled feeling judged by the teachers and other parents. It's hard to explain why your child has accidents at 6 and hides in the bookcase when stressed He has made one friend though and I made friends with the mom
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Old 08-08-2004, 01:41 PM
 
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I just wanted to let you know that our William Nathan was born at home July 26th. He lived for two hours. We are missing him terribly, but are grateful to have had the chance to meet him, hold him, tell him how much we love him. A huge thank you to you for supporting me during the pregnancy - it REALLY helped. I wish you all comfort and peace as you care for your dear children.
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Old 08-08-2004, 02:57 PM
 
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So sorry to hear about William!I am glad you did get to spend some time wiht your little one before he passed. I am thinking of you and your family!
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Old 08-08-2004, 04:54 PM
 
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My thoughts are with you during this time.
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Old 08-08-2004, 10:25 PM
 
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My thoughts and prayers go out to you, your family, and especially sweet William.

SAHMama to the "Fantastic Four"- 10 yr old b/g twins, 7 yr old boy, 5 yr old girl... : and expecting a miracle baby Feb. 2010...: Married for 11 yrs to my handsome Police Officer :cop:
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Old 08-09-2004, 04:55 PM - Thread Starter
 
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May you be comforted in this time of sorrow. I'm so glad you got to hold your beautiful son. You are ALWAYS welcome here!!
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Old 08-11-2004, 09:35 PM
 
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Sisima, I am so sorry for your loss. I will be thinking about you and your son.
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Old 08-12-2004, 12:52 AM
 
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2 on the spectrum.
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Old 08-22-2004, 08:30 PM
 
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Hi!

I'm new on this list. My son Matthew is 11 years old. He has what I believe is Septo Optic Dysplasia (also known as ONH, SOD & DeMorsier's Syndrome). His symptoms include: mild Optic Nerve Hypoplasia, farsightedness, astigmatism, strabismus, Growth Hormone Deficiency, partial cortisol deficiency, dyspraxia, hyper and hypotonia, speech delay, sensory integration disorder, tactile and oral defensiveness, hypersensitive hearing & Autistic Spectrum Disorder. If you want to read more about the characteristics of this disorder, you could read about it at http://www.focusfamilies.org/focus/characteristics.asp Intellectually he is at or above his peers and is a wonderful, sensitive, caring child. He loves Tigger, Beagles, Skunks, Hedgehogs and anything with wheels, especially trains. We will be starting homeschooling this year. I am very excited about his. His 8 yr. old sister Tia will be homeschooling with us too. We are all looking forward to it. Tia has some processing delays and autoimmune thyroid disease. They are both adopted from different bio parents. We also have a 20 yr. old biological son, Joshua.
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Old 08-23-2004, 01:00 AM
 
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Hi-
I'm new to MDC and so far I'm loving it here. I have 2 special needs children. My dd (#1) is 8yr and has dilated cardiomyopathy that was diagnosed at 5months old and also behavioral issues (BP,ADHD,ODD??). He's very smart and talkative , unfornutately his behavioal issues cause him problems at home, school, everywhere. And his heart cond. prevents him from doing things like sports that he would love to do. We are currently looking for a pyscologist for him and everyone keeps sayind medications and at this point I don't know what to do because these behaviors are interfering w/ his relationship w/everyone. DD (#2) was dx w/autism at 3yr. He is also very smart although has a difficulty w/ demands that he doesn't know . Also fully toilet training is a mission and a half. he doesn't talk really and makes eye contact sometimes. He has scared me more than once running off !!! He is in a special school for kids with autism and related dx's. He recieves speech and OT therapies.
People can be so cruel when they don't know...one day in my job (I work in a daycare in a sports club) right before we were going to leave dd#2 decided he wanted something that I had put in the garbage by the door and was trying to get it forcefully as the last child was leaving w/his mother, when the mother turned to me w/a very nasty look and said something like he's old enough to know better ...blah..blah..(I don't know if she knew it was my son) but the way she said it was like she was so disgusted and angry. I said to her w/a fake smile (trying to be nice) that actually he's my son and he's autistic and that it was hard and she just looked so shocked and walked away. I was so upset that day. Then a day or two later (next time I worked there) she came in w/out her son and looked so sad and she was apologizing for her rude behavior. She said she's just so used to all the spoiled kids around she just figured...anyway she was close to crying right there and in that moment I felt bad for her. I bet she won't do that again Some people are just ignorant and need to be set straight.


As far as VAX'S both had them.DD#2 I stoppped after '99. DD#3 doesn't have any problems so far (I pray) and will not be vaxed. Too risky for us-my family has alot of genetic problems.

RayRay-

Life Learning Momma to DS17, DS16,DS9jumpers.gifas well a dog, a cat, two birds...ttc babygirl.gif homeschool.gifnamaste.gif
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Old 08-23-2004, 03:06 AM
 
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I've posted here a few times & I guess it's time to add to this particular thread.

I have four children who are beautiful, bright and loving. And they all just happen to have their own set of medical problems.

Spencer is 9 and was a 32 weeker. He spent over 2 months in the NICU. He has very, very mild CP, severe asthma/bpd, gerd and add.

Sarah is 6 and was born w/ congenital renal anomolies. She has a hypoplastic left kidney & and insufficient, duplicated right kidney. She also has bilaterally duplicated collecting systems & has had two kidney surgeries.

Megan is "almost 4" not 3 She was born with serious heart defects and had multiple surgeries. Her story is very intense & you are welcome to read it here http://tchin.org/portraits/megan-3.htm

Thomas is my sweet little love. He's 10 months and was a 31 weeker. He spent 7 weeks in the NICU. He's beautiful & sweet. They told me when I was pregnant w/ him that he would have heart & kidney defects and miraculously they all seemed to disappear The only things we are struggling with are severe food allergies (he's anaphylactic to peaches & apples of all things), GERD and anemia due to prematurity.

Well, that's us! I know it sounds very dramatic, but we function just like any other family & they all look pretty good from the outside
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Old 08-23-2004, 05:28 PM
 
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Man, you all are a bunch of strong mamas. I am Michelle. Beth is 7 1/2 (can't forget that 1/2) and Samantha is 4. Sam is in speech therapy for articulation issues. She is also suspected of having celiac disease (genetic gluten intolerance) and she is intolerant to most dairy. Beth is having some food intolerance issues or possibly asthma issues. I am working through those. Both girls have some sensory issues. Beth can't stand certain noises - I can just now vacuum with her in the house, etc. Sam is getting better but is constantly putting things in her mouth and up until recently, could not stand grass touching her feet, but would never wear shoes.

The hardest part of dealing with all this is the lack of trust of other people in my instincts about the girls, especially my DH. He thinks it is all in my head. :
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Old 08-29-2004, 02:40 AM
 
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Hi All- New to this part of the board, thought I'd pop in towhere I feel I most belong!

Our daughter was adopted at birth in Feb. 2001. She was born to a birthmother with about 12 different risk factors, among them were alcoholism, prescription and street drug addiction (the scripts were ativan, dilantin and trazadone, particularly bad), advanced maternal age, poor health, chain smoking, homelessness, no prenatal until we entered the picture at the beginning of her third trimester and borderline gestational diabetes (as if the rest of it wasn't enough! LOL) Marjorie (the "baby" she'll always be my baby even tho she is a toddler now) has severe CNS delays, some dysmorphology and had retarded growth for her first 14 months (until we had a g-tube put in, a fundoplication done and figured out that she was allergic to corn.). I know what she has is at the very least FAE/FASD if not full blown FAS, mild Hypotonic (becoming hyper as she ages), Hemiplegic cerebral palsy, dyspraxia, Hyposensitive Sensory Integration Disorder (the more rare of the 2 types), she eats almost zero food by mouth, talks very little (apraxia) but does do some minimal adaptive American Sign Language. Lately, they have also been throwing around the PDD/NOS DX. We consider ourselves very lucky, although she does have quite a few issues, she is so much better off than we were told to hope for. She is a complete joy to be with and like almost all special needs kids has the greatest spirit even through all of her therapies, hospitalizations, etc.
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Old 08-30-2004, 01:24 AM
 
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Hi Bonny June!

Marjorie sounds a lot like Matthew in many ways. Matt came to us in June of 1993, as our foster son when he was 7 days old. We were able to finally adopt him when he was 3 yrs. old. He was born to a birthmother with several risk factors, among them were prescription and street drug addiction (her drug of preference is crack), advanced maternal age (39), poor health, chain smoking, homelessness, sporadic prenatal care in first & third trimester and insulin dependent diabetes. She also has a diagnosis of mild CP and mild retardation. However, the geneticist believe that she has a rare unknown genetic disorder and that Matthew may have inherited this too. Matthew has CNS delays, some dysmorphology and had retarded growth for his first 5 years, until we discovered he was growth hormone deficeint and began replacement therapy. I believe his mother is telling me the truth when she says she never drank alcohol, although there have been some professionals who question FAE. I think he is too intellectually gifted to have FAE. He is at or above his peers. Matthew was diagnosed as an infant as having CP but it is not a diagnosis that we usually list because his other issues seem to better describe what goes on with him. He was much more hyper & hypotonic as an infant and young child. It has improved greatly over the years with therapy. He also has dyspraxia & Sensory Integration Disorder, but that also has improved greatly over the years with therapy. He only drank formula and pureed foods and Carnation Instant Breakfast for most of his first three years. With patience and oral stimulation therapy, we were finally able to get him to eat more textures. Now he eats great! Matt also did not talk due to apraxia and hypotonia in the facial muscles until he was 5 yrs. old. He couldn't smile until he was almost 9 months old. Now he speaks slowly but very clearly and has an enormous vocabulary that surpasses his peers. He walked when he was 27 months old. He had to use AFOs and SMOs for the first 5 yrs. and now he uses orthodics inside his shoe. I cannot say enough for Early Intervention and continued therapy. We used some American Sign Language when he was little, but what worked even better for us with communication was our own version of PECS cards. We either drew or cut out pictures of different toys, food, drink etc. and pasted them on 2 x 2 inch card stock. We covered them with contact paper and put magnets on the back. These hung on our frig for years and he would use them to tell us what he wanted. They were a lifesaver at times and really took away a lot of his frustration. Matthew got the PDD/NOS diagnosis when he was 6 yrs old. They now call that "Autistic Spectrum Disorder" because they feel it more accurately describes it. We were told that Matthew would probably never walk or talk when he was an infant/toddler by so many of the professionals. I learned not to listen to anyone but Matthew. He has shown me so much. I knew in my heart he was capable of so much more than they thought he was. I am sure Marjorie will show you more than they imagine she will too. Enjoy the journey with her.
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