We are finally here thanks to all the good works by Carol, Desertmom! Thank you Carol.

I hope we can all be supportive here and offer good advice and information. We deal with issues that parents of "neuros" truly just can't understand. We rejoice in the simple things like a new word or direct eye contact. We have very low lows that equal our Highs! We are the parents of the special needs.

I am April Fregd, Mom to Hunter Sabat a 3 yr old on the autism spectrum. Hunter was dx's on Dec. 21st, that is when we saw the letter in black and white. You all remember the day.. I applied for the Wyoming DD waiver in Jan of this year and have been trying to figure it out since. I have fought with the state run early intervention school and lost. I have fought with the State and won. I was give $4,200 for part of our ABA program.

We are doing a home based ABA program with Hunter and having great success. I use the respite to pay the aides. It is very expensive and takes huge dedication but we love it.

It is the only data driven and data proven program. Hunter's improvements are not that I desired him to do well, but the data proves if he is doing better. It works for us.

There are many other programs out there and for each child a different program works best.

Welcome my dear friends to our special needs section! Blessings to you and your family, April

I'm so glad this forum is up and running.

I am Mary Friesz, mom to Kayla 15 yrs, Alexius (Lexi) 10 yrs, Jordyn 3 yrs, & Rori 16 months. All girls in our house. Kayla has sensory intergation issues, bipolar (manic depression), learning disability and ADD. Alexius has severe depilitating anxiety issues, Jordyn has central sleep apnea which causes sleep depravation which in turn causes hyperactivity and sensory intergation issues, and little miss Rori has severe sensory issues that we are slowly overcoming.

Because of the huge cost (think around $8 -$10 thousand a month) of Kayla's many different treatments for depression and oppositional defiant disorder our health insurance company has enrolled us in a pilot program called Kids Care. We have a case manager for our family who helps us try unconventional and preventative measures to help Kayla and now Lexi. We have a wonderful case manager who helps to tweek the system to include thinks for Jordyn and Rori. I now have a mother's helper who runs the older girls to appointments or stays with the youngests two along with tutoring help. Sometimes my helper just comes and stays with all 4 girls so that my DH & I can go on dates. We can't really afford a date so we usually go grocery shopping or just drive around in the car together, we then have some alone time. DH and I work opposite shifts so usually we only see each other on weekends. Our insurance company picks up the tab for the mother's helper too. I found out that the only reason the mother's helper was approved was because of the emmenate fear that I would have a nervous breakdown due to the stress of raising & being the sole responsible party in my home (Whole different story.)
I am truly blessed to be included in this program and things are getting better because of the opportunities we are allowed but I realize we have such a long way to go.

My sincere hope is that families are wiling to come forward and tell all of us there experiences both good and bad so that we can learn from each other along with helping each other through those dark days when we don't think we can handle one more thing going wrong. I would love to bounce ideas off of other moms who have some of the same issues that my family faces.

Welcome Mary and your family too!

I was so happy to see your post and the progress you have made with the insurance company. That is truly amazing and I can't help but to think that as the forerunner of the program your tenacity will have laid the groundwork for the next family. Mary that is powerful stuff and you must be a powerful woman. I am in awe!

You truly have your hands full and I wondered if you are getting enough sleep or do you sleep very light to listen for Alexius?

Kids care sounds like a Godsend program. Respite is a big part of having special need children. Just being able to go to the store and have time to look instead of grabbing the necessities and leaving before the meltdown. Time with the DH is so precious and needed. Often we feel like ships passing and I wonder how to stay connected to DH. Enjoy your time and use the helpers.

Thank you for coming here and we hope to be here to share hopes, dream, good days, and the many bad. I am excited to have this forum and Desertmom was so kind to get this forum here and to moderate.

Welcome Mary! Thank you for sharing your story.
April

Nice to be here!

I posted on the wrong thread in the forum, so will post here as well....

I have 3 children, 2 boys and a girl...Alex is 11 (ADHD, gifted, bipolar...he also tested borderline Asperger's), Andrew is 8 (Asperger's, Sensory Issues, GAD, ADHD, gifted) and Lanah is 14 months--typical as far as we can tell

We live just outside of Memphis actually across the stateline in MS. Our school system can be great (I teach Preschool for Hearing Impaired in our district) but this year has been chaos due to having to move across the county on the 4th day of school. The whole HI program was moved and due to scheduling my 8 year old had to come with me. His IEP is not being implemented and I'm expected to "understand" because I work at the school. My oldest had to change schools this fall and we are also having trouble getting his IEP properly followed...The superintendent claims I'm not a team player because I want their needs met. Enough on that for now though.

Mary, what part of ND are you in? I lived in Dickinson several years back!!!

Hello!
My name is Liz and I live in Florida. I have two sons. My 4 year old is typically developing, my 8 year old has cerebral palsy. My 8 year old was a very early preemie which is why he has the CP. He is a great blessing to my life and I am so glad I have both of my sons in my care. Our life has been filled with a lot of challenges but also many wonderful times. My kids have helped me see with new eyes and step beyond myself.

Sometimes as a parent it can be kind of isolating and in certain environments I have felt very unwelcome or out of place. So I am Really glad to see this forum here! Look forward to talking with you all!

Welcome to you all. I see a common thread here. (Tacoma Ranch and I are your tour guides (moderators) on this subject.) It seems we all are working very, very hard for our children. It also seems that we each have found different ways of getting the resources we need, and it also appears we all have more navigation to do. The school districts are tasked with saving money while serving the needs. You are your child's best advocate, but try to get someone within the district on your side, too, as an educational advocate. In my case, I'm fortunate to have an ambitious resource teacher, and I just found out my son's first grade teacher loves these challenges and is actually working on getting him more resources. However, I am aware of how politically charged these situations are, and that there are more resources out there. You better believe I'm going to "suck up" to these two and the school principal, while being strong on my needs (we have a bully problem going on that I am not tolerating and have already jingled a few chains). Your medical person, whether a pediatrician, therapist or other, can also help. For instance, my son is fair and the school was resistant to putting sunscreen on, until the doctor offered to write a note. No problem now. Of course, the school nurse will also get a token of my appreciation. It's all a balancing act. Thank you for being here and for sharing your valuable information and this slice of your life. Please feel free to use us for questions, vents or just as an ear. If you don't want advice, but just want us to listen (read), let us know. I know there are a lot of us out there. Pooling our resources will help us save money and our kids!!

I'm Victoria, mom to an 8 year-old boy with ADD and a 6 year old boy with ADHD. You quickly learn the difference between the two when one can stare at the television for as long as you'll let him, and the other can't control his impulses enough to stop at the curb before crossing the street. They are currently unmedicated. And I'm just learning how to be the right mom for each of them now, so it hasn't been easy during all this time when I kept trying to do what "regular" moms were doing with their children and finding myself so frustrated.

I look forward to learning more about your children's conditions, and taking some pointers from moms whose problems aren't solved by a simple time-out or swat on the bottom.

tacoma_ranch thank you for such a warm welcome. It's nice not to be judged because of my children's differences. Outwardly they look like normal kids but once people spend time with us they tend to shy away.

Sleep depravation has been my way of life since Jordyn was born 3 1/2 yrs ago. Never have a experienced a child that can get by on so little sleep, this started at birth. I have learned to get by on very little sleep and also become a very light sleeper. There have been nights that i have found Jordyn standing on the stove trying to get the candy from the cupboard above the stove because she's hungry. Jordyn tends to put herself in very dangerous situations and due to her SID she has a very high pain tolerance most of the time.

Dzhope I live in Bismarck and grew up in Mandan. I have several relatives that live in Dickinson.

Hi Liz and welcome to our forum.

I moved to the west from Boca! What a huge change. From my research on Florida they have good schools but the wait list for the DD is years at end. Are you on the Florida Disabilities waiver? I looked into a public school in WPB for Autism but in the end, I knew I would not move away from my DH.

It is wonderful how our special needs children teach us to open our eyes. I never judge anymore and when I see a mom with her hands full I go over and help. I don't even ask if they need help, I just do.

As for going out, I am right there with you. See my post here.

Liz, I am so happy to have you with us and hope we can all help, listen, laugh, cry and learn from this great forum that Carol worked so hard to get us.

Welcome, Liz
April

Hi Victoria and welcome to the SN forum.

We are so happy you are here with us and then again I am sorry we are here at all. But this is our lives. Victoria how do you do it with ADHA and ADD? Do you feel like you are split in two? About what NT mom's do, yep, it just doesn't work for us. I feel like putting a huge sign when we go out, HE HAS AUTISM! Then maybe the looks would stop and I wouldn't feel like the worst mom in the world.

There are so many different things that we do that help our kids. I hope that parents of NT also come over because we are such a creative group and find unique ways to deal with basic problems. Victoria, I hope we can all help you with good suggestions for things you may have to deal with. I am a firm believe in ABA but there are other schools of thought out there and each one helps.

Welcome Victoria to our new forum! Hi to the boys.