Let's introduce ourselves!

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Permalink Reply by Jennifer Pogan on March 13, 2009 at 6:46pm

Hello! I'm Jenny! I have 2 children and I guess you can say they both have special needs. Victoria who is 9 has mild Cerebral Palsy, mentally handicaped and has apraxia of speech. Josh who is 11 was just diagnosed with ADD and he has a learning disability. I hope to find some great friends in this group who can possibly help with insurance issues. I'm new to blogging and to twittermoms. I want to start my own blog on my kids and family updates. I also crochet in my "spare" time whatever that means. I love to write ever since I was a child. Nice to meet you all. Come by my page anytime. Jenny

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Permalink Reply by Ann Marie Curling on March 25, 2009 at 10:32am

Hi,

I'm Ann Marie, and I'm the mother of four special needs kids in Western KY. I'll ID my kids in code as to protect their privacy (I had a hellish nightmare happen in terms of breaching their privacy four years ago from an online group of people so I'm very careful now). My oldest son (Big Boy or BB for short) is 13 and has Epilepsy and atypical Cystic Fibrosis, my oldest daughter (Big Girl or BG for short) is 12 and also has Epilepsy and atypical Cystic Fibrosis, she also has a functional mental disability due to severe seizures when she was younger, my youngest daughter (Little Girl or LG for short) is 9 and also has Epilepsy and Atypical Cystic Fibrosis, her CF is worse than any of them, and finally my youngest son (Little Boy, or LB for short) is six and has Epilepsy and SVT (or Supra Ventricular Tachycardia). My husband and I work out of our home, we are web technologies specialists, and I also specialize in new media and social networking. I'm almost 35 yrs old, and I was born and raised in suburban Detroit MI. I lived in FL for ten years from the mid-90's to the mid-00's. I love movies, and watching tv. I also love blogging and social networking.

I guess that's it...

Ann Marie

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Permalink Reply by Michelle Todd on April 6, 2009 at 9:12am

Hi! My name is Michelle and I have 4 children (9,8,7, and 4) My children were adopted through the foster system almost 5 years ago. My 7 year old has receptive Aphasia and is clinically deaf. Receptive Aphasia is a condition caused (in his case) by a stroke. The part of his brain that comprehends oral language has been damaged. some more minor side effects are a faulty "working memory"(the part of the memory that you use while you are actually doing something), sequencing, and carrying history. Because of his hearing, he is also in speech therapy. Despite all of this, he is an incredibly happy, outgoing 7 year old boy. Although there are days that I am overwhelmed, I also am impressed by how he has overcome so much.

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Permalink Reply by April Hayman on April 11, 2009 at 8:55am

Hi all! My name is April and I have three boys. My eldest had speech therapy until he was four and is now a very articulate 8 year old. My 4 year old was diagnosed with dyspraxia recently and we are still trying to figure out what that means exactly. He has some other issues we're trying to work out as well. Our youngest is 2 years old and is a fearless monkeyboy (found him on the top shelf of his closet. Twice. Within ten minutes).

I realize that our middle son's issues are not quite as severe as some other children's but it can be overwhelming sometimes. Particularly since we're still trying to figure out what exactly is causing his behaviors. So I'm glad I found this spot!

My twitter id is @artdreamlife
My blog is Diary of a WAHM

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Permalink Reply by Becky Fimbres on April 18, 2009 at 8:11pm

Hello Everyone...

My name is Becky and I am a mom to two great boys. My son, Joaquin, was diagnosed this year with Epilepsy. We are still in the process of getting his seizures under control.

My DH and I started a website to help spread the word about epilepsy. Joaquin holds up signs with personalized saying or quotes and we snap a pic of him with it and email them out. Please check out our website www.joaquinthebean.com and read his story, request a sign and sign our guest book.

We are trying to do our part...and are trying to get national attention with his site...please share it with others!

I also have a blog on him... Joaquin The Bean

Hope to get to talk to other moms like me!

Becky

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Permalink Reply by Christine Mack on April 20, 2009 at 6:58am

Hello my names is Christine and I have a terminally ill stepson who was born with heart and lung defects. 14 surgeries later he is still alive. He only breathes on 1/4 of a lung. No hope for transplant because there is too much scar tissue. Has to have oxygen constantly. I have another stepson with Tourets, OCD, and ADD. Both of those boys live with their mom however he visits us every other weekend. Twice she has said he was dying but its all lies. I have one step son Joshua, who lives with us and is flourishing..normal 16 year old...gets strait A's. I have a daughter who was born at 33 weeks but is doing fine other than minor asthma. I have another daughter who is chubby 9 month old and is doing great.

So great to see other mom's who are positive even through their trials!

Christine

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Permalink Reply by Karen Griffith Gryga on April 20, 2009 at 2:51pm

Hi! My name is Karen. I have a 7 year old son with language based learning issues. He basically has problems with information getting in (receptive language issues) as well as with language coming out (expressive language issues). We are currently getting him evaluated for ADD/ADHD. He also has many anxiety issues. We send him to a special school that focuses on language based learning issues but I work with him every day for 1-2 hours as well.

I am pretty sure that he has ADD but would love to figure out a non-medication route, if possible,

I would love to share with you what is working for me and my son, as well as learn from others.

I have a blog, www.lipstickwisdom.com, where I share my insights with working with my son (look under Karen's blog). I also gather the best information I can find on the web (videos, articles, web sites) and organizing them by life event (such as aging parents, teenagers and drugs, grief over the loss of a child, ...). If you have a moment - come check it out.

It is nice to meet everyone!

Karen

www.lipstickwisdom.com

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Permalink Reply by NanLT on April 22, 2009 at 10:14am

Hi everyone.

I have 3 sons. The oldest was diagnosed was ADD way back when he was 9 years old, he's 20 now. I now suspect that he was misdiagnosed and really has Asperger's Syndrome. It just wasn't recognised back then.

Number 2 son, referred to online as Thing 1, has Asperger's Syndrome.

number 3 son, called Thing 2, has not been officially diagnosed yet, but we suspect he has Asperger's Syndrome as well now. I am waiting for the referral and appointment from the paediatrician to come through to start the assessment process.

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Permalink Reply by Ericha R on May 7, 2009 at 7:15am

Hey Everyone Im Ericha and I have 3 kids, girls 6 & 2 and son is almost 4. my girls were born premature one at 24 weeks and the other at 27 weeks. My 6 yr old is partially deaf and wears hearing aids in both ears and my 2 yr old is still working on her speech but her hearing is ok and my son has no disalibities but can understand and speak some american sign language cause thats how he communicates with his big sister if she doesnt understand. I do this mostly by myself because their father doesnt take the time out to learn sign.

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Permalink Reply by Angela McCoy on May 9, 2009 at 5:37am

Hello Mia all SN Mamas!

I put this same post under the SN blogs section, but figured it's also a good intro, so I'm just cut and pasting to save some time. :o)

My name is Angela, and I just joined this group. Here's my blog . . . Mom's Fortress of Solitude: http://momsgreatescape.blogspot.com

I just started blogging last September, but I have met so many wonderful people in Bloggyland!

My blog consists of a variety of topics:

from humor to rants
the not-so-fabulous military life to thankfulness for the freedoms we have
sarcasm (my coping mechanism) to the dilemmas and beauty of motherhood and everything in between

I write:

for therapy
to inspire others with our experiences
to make a difference
offer hope to the hopeless
to keep my sanity.

I have four boys, ages 16, 14, and 7 year old twins, each with their own Special Needs. I am also a step-mom to two girls and one boy. The girls are 18 and 9. My step-son will forever be 19.

One of our twins is autistic, and the other has APD (Auditory Processing Disorder).

My 14 y.o. was diagnosed as an infant with a rare metabolic disorder called Cystinosis, and a resulting kidney disease called Fanconi's Syndrome. He received a new kidney just before his 12th birthday, and is doing wonderfully.

My oldest son has ADHD, but is also managing well, now. I say, 'now' because we have had some very challenging trials to get him where he is today.

My step-son, who will be forever 19, was bipolar. He committed suicide while living with his mother in Texas, two years ago. We were very close from the time I met him, and even after we had to relocate with the Navy. I wish I would have known how much he was suffering. We spoke on the phone two days prior to his death and he seemed so very happy. No one had the slightest clue he would take his own life. We miss him tremendously!

Shortly after Eric's death, my husband was diagnosed with testicular cancer. I swear . . . it never ends! He is doing ok, now, after the surgery. So far, his follow-up testing has proven cancer free. We keep our fingers, toes, legs, and even eyes crossed in the hopes that the cancer never returns.

Anyhow, that's me in a nutshell. Welcome to the insanity! lol

I cannot wait to meet everyone. If you made it through this drawn-out posting, thank you for your patience in reading, and congratulations . . . you like me! YEAH! :oP

Hugs all,

Angela

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Permalink Reply by catherine on May 27, 2009 at 3:06pm

Hi, my name is Catherine and I am a full time SAHM of 3 beautiful children (7 years, 5 years, 2 years) and it is our 5 year old son whom has the special needs. We (the parents, his Early Interventionist, speech therapist, preschool teachers) all feel that he is on the Autism Spectrum with other issues (he is very High Functioning) but the assessment team just wants to "Wait and see". That to us is unacceptable, especially since Early Intervention is key!!! It has been a long hard road, we have had doctor's tell us it is all in our head or that he is playing us...comments like these just knocked the wind out of our sails.
We are currently undiagnosed, but are continuing to try to find answers, one of the doctor's we are working with from the assessment team will tell you one thing but then will contradict herself later. It is hard to take her seriously or hard to believe what she is saying...since you don't know if she will change her mind later. She also wanted to do a trial run of Prozac on our son, because she thought it would help some of his underlying issues. This drug has made him become almost more "Autistic", it has also increased his sense of no fear or danger which is scary for us...we can't let him out of our sight at all, we have an alarm on our door to let us know he has opened it.
We can't go private as it costs $2000-4000 and our insurance won't cover private assessments, so we either brave/battle the system we have here in our province or do this on our own without the healthcare's help. Also, our 2 year old Daughter is starting to show signs of having what her brother has but she is more high functioning than he is...
Look forward to getting to know you all and thank you for starting this group :)!


Catherine

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Permalink Reply by Cindy Ho Malamy on July 30, 2009 at 1:46am

My son is 14 months born 6 weeks premature weight 3lbs 15oz at birth. He has a very small head size (microcephaly) way below the 5% curve and does not use his left hand efficiently (left hemiparesis), he also has developmental delays in speech (no babbling). We recently had his brain MRI and it showed he has sustained damage in his brain likely a stoke sometime between late in pregnancy or during the first weeks of his birth. I read somewhere that premature infants has higher brain injury risk.
Cerebral palsy is an umbrella classification for his condition. The State of California has a program call Early Start that offers free services to children under 3 with developmental problems. We are now seeing developmental specialists and occupational therapist to help him "re-wire" his brain. We hope with specialize education to help his development, he can learn to work around/with his disabilities.

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