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by on Apr. 1, 2013 at 2:42 PM
Replies (11-20):
by on Apr. 5, 2013 at 2:45 PM
2 moms liked this
My wonderful son came into the world weighing 10 pounds 1 ounce 24 inches long on April 30th 1998. When he was 3 months old he was down to 6 pounds. He was diagnosed with pyloric stenosis and had surgery to correct his problems. He still has stomach issues to this day is on prilosec for those. When he was around two I noticed I noticed that he was a little different from other kids. I was always told no worries all kids are different. Zade didn't make eye contact, cried a lot but didn't produce tears, he wasn't learning about personal space and couldn't pick up on social cues. I was told all of these are normal no worries sooner or later he will figure it out. By the time he went to kindergarten the teacher had him for about 3 weeks before she wanted him tested for ADHD and also brought up that he wasn't making progress on social cues like his peers. Had him tested for adhd and he was diagnosed at age 5. The school would not let him stay there unless I medicated which I did so reluctently. He made great strides in his behavior but wasn't doing well socially. He was given an IEP and OT and with those he scraped by being passed yearly though his grades were all failing. I was in a car accident in 2008 that left me permantly disabled and brought me to being a sahm. Zade became more and more depandent on me. I noticed his behaviors more and started looking into a better school district for him. At age 11 he had a full blown melt down and started cutting. He spent 10 days in a psych ward and was diagnosed bipolar. Those were the words I didn't want to hear for either of my boys. His IEP changed for school, we moved 95 miles from our home town to go to a school that we thought would help him more. He was still failing all his classes but passing because his test scores and IQ were through the roof. One day I got a call from the guidance counsler who wanted to set up an appointment to go over his diagnosises. He also brought up one that made complete sense but was never used with Zade. Aspergers. After we got the diagnosis through a certified psychologist we decided to move to another school district that dealt with aspe kids. We moved to a small town of 1400 a little over a year ago. He is in therapy twice a week. He is in IEP and main stream classes. When we moved here he had a .86 gpa it is now up to a 3.0. He is in welding classes and is able to apply to go to tech school half a day next year. He has learned about personal space. He is starting to use more eye contact and is starting to pick up on social cues. He is absolutely amazing. He told me a couple months ago that he wants to go to college. He had always been so miserable at school I never thought those words would come out of his mouth. This is one proud momma right here. Sorry for the novel or any miss spellings.
by Member on Apr. 5, 2013 at 3:12 PM
3 moms liked this

My story is no where near most stories. My dd age 9 has depression, ADHD, anxiety, Tourette Syndrome, Autism, PTSD (from being molested0 & ODD. Even though she has this many diagnoses she is in a regular class at school. She is 2 years behind in reading & gets helps with that. Beside being a sassy 9 year old who doesn't liked to be touched or in big crowds she can do anything she puts her mind to. I am doing my best to raise her (with my parents help) to be an independent person.  GOOD LUCK to everyone.

by on Apr. 5, 2013 at 3:30 PM
3 moms liked this
I'm an autistic adult. I got diagnosed in my mid 20's. I knew something was different about me, but growing up, no one had the right answers. It wasn't until my brother (who's diagnosed with aspergers and has an autistic son... and a socially awkward daughter.) wife who's a special ed teacher, told me I was autistic and it was obvious to her.... that it was "found" what was wrong with me. Why no one suggested it before then... i'll never know. I guess they weren't looking for it - and in girls it isn't something they thought could exist when I was growing up, that if you could talk or functional semi-normally, you couldn't be autistic. On the ADOS test, I score 2 points shy of the maximum points you can get for autism.... meaning out of 20 max points, I scored 18 and 7 was their cut of for PPDNOS/aspergers..... and 10 was their cut off for classic autism. I'm about as autistic as you can get.... symptom wise when testing for autistic traits. However, I am verbal, and fully functional with in my life, I just have to make special consideration for some of my quirks and sensory issues. I'm all for open communication when it comes to talking about autism. I think that by openly talking about it, especially with autistic adults, it will help parents make better choices in regards to their kids. Simply because even if we are all different, sometimes talking about what it's like to be autistic, can truly help parents understand better, and it makes them relate/support their child in ways they might not have previously. Understanding sensory issues for example. A child may not be able to explain it to their parent, but if you can hear some stories what it's like from an autistic adult who *can* explain what it feels like, it goes a long way for the parents to understand so they get less frustrated.... I also have a special needs child. He was diagnosed when I was, and while we choose to do more diet related issues, we don't have him in tons of therapies right now. We work on his issues one at a time at home, and we see progress. I'm really proud of how well he's doing lately.
by on Apr. 5, 2013 at 3:51 PM
2 moms liked this

My son is 7 years old and on the spectrum. when he was 3 i got pregnant with his little brother.At that point he had a no sleep schedule and wouldn't eat more than 4 things, we'd trick him into drinking his veggies by juicing/making a smoothly and covering the taste with strawberries and bananas, he had no want to potty train and wasn't talking and me and dh were at our limits. We called and made an appt with our doctor to get him evaluated for autism, it had been brought up to me by my mother my mil and my mil's friend that he might but i didn't want anything wrong with my baby, the doctor, like normal(since changed), didn't listen and just set up to get him evaluated for delays. So we went and he got evaluated and got approved to go into a preschool for kids with special needs. he started his preschool when he was 4 and i had just had his brother.At the preschool was an autism specialist and she brought it up to the head teacher who told us we might wanna get him checked out, so we went and went back to the doctor, who tried to send us for an evaluation again at the preschool -.-, and waited a few weeks and got a call to travel 6 hours north, we live in southern oregon and the place was up in portland its normally a 4.5 hour drive with 2 kids it becomes a 6-7 hour drive, but had to wait 2 months for the appt. while we were waiting the preschool taught our son great skills they were able to get him potty trained right before he turned 5.They taught us many little signs in ASL that helped bridge the gap that in communication we were having and they got him talking more. It was in october when he was 4 that i said "I love you" like normal and he looked me straight in the eye with the biggest smile and said "love you" to me i sat down hugged him and cried. he had never said that before i was so over joyed i texted everyone i knew and cont to cry for a good 20 mins with a big smile on my face. come may when he was 5 we went up and he got diagnosed with autism.  the doctors up there were so nice. Since he was diagnosed, both medical and educational, he's been blooming. He talks so much now, he's still potty trained he now will eat fruits and veggies and 10X more than what he was eating.he's in the steps program  and is doing so great. His reading level is right where it should, he's alway been a book worm like his mommy and daddy :),he's only one grade behind in his math. His writing is behind but he's only in second grade but its getting better. He's on melatonin now to help him get a full nights sleep and it has worked wonders.He still lives in his own little world and doesn't understand some rules in this one but he's putting his foot over here and getting there. 

when he was first diagnosed and i was talking to my mom i was crying, i didn't know what to do i didn't know how to deal with a child with autism. My mom calmly over the phone told me yes i do cause i've been doing it all this time, and now that i got the diagnoses we'll be able to get help to help him.  That was the best thing she could have ever told me and it has helped me through so much as has his teachers. i'm grateful for all the help and don't know where i would have been without them.I know now that the fear i had of something wrong with my baby just cause he was diagnosed doesn't mean there is anything wrong with him he is perfect just the way he is he's taught me so much and will cont. :) and that is my story so far.

by on Apr. 5, 2013 at 3:54 PM
3 moms liked this

I'm now schooling my special needs children at home.  Gone are the compaints of being sick or of tummies hurting.  Schools are not set up for special needs kids even though they make some allowances.  Children are still expected to act like the normal nuraltypical child and keep up.  Even the "meet the child where they are at" charter schools do not really do that unless you apply for the whole 504 or IEP programs.  (I've tried a year with them).  It has been a releif  to bring my kids home.

Peole who meet my most difficult child admire his independance and energy.  I've resigned my life to one of embarrasment so I try to turn that part of my brain off and just Love and Enjoy my children.  My children are who they are.

I don't want people to find a cure. I want the to find what's causing this rising trend of Autism and get the poisons out of our food.

by on Apr. 5, 2013 at 4:57 PM
7 moms liked this

Life was a fairy tale for my husband and I at the time we were waiting our first child to come into this world.  I had just graduated from dental school and my husband's business was taking off.  Both my husband and I shared a strong illusion of being in control of our lives as everything we set our minds on seemed to come to play.  We even had a "Vision Board" where we mapped out the future of our perfect life.  It was nearing the end of my pregnancy when something didn't feel right, I was too big I felt and had a strong sense thatsomething was wrong.  Tests would confirm I was retaining too much amniotic fluid, but the doctors insisted everything was still fine.  My husband would even get upset with me when I would voice my concerns stating "You can't be negative, you have to always think positive and it will be."  I held onto that belief, but the moment our daughter Evelyn came into this world, I was scared to look at her knowing deep down inside, something wasn't right.

I managed to open my eyes after they laid her on my chest when my fears were instantly confirmed, she had Down Syndrome.  Though I had a neice with Down Syndrome and loved her like my own child, this was not the child I had dreamed of.  This was suppose to be the child I would teach to "Fight like a Girl", someone I would push to get her doctorate, someone I would walk down the asile and welcome my grand babies from.  This couldn't be happening. 

The next 24 hours were a blur of white coats and blue scrubs, machines and operating room tables.  Evelyn had many complications and would require many surgeries.  She wouldn't be able to eat and they didn't know if she would walk.  I wasn't even able to hold her after those first few moments she was laid on my chest until weeks after her first few surgeries which was accompanied by a mess of tubes and wires and fears of hurting my own child by holding her.

Those first few days and even years seem like a blur now and even though she is going in for her 33rd surgery in two weeks, I have to say I am a completely different person now.   A child changes you, but having a child with a disability changes everything about you.  This child whom I thought was a tragedy to my perfect life, helped to change me into a more perfect person.  A person less self-centered and arrogant into a more caring, compassionate and empathetic person.  Someone who doesn't base their self worth on external or material things, but who now puts more value into who a person is.  My daughter has brought more to our life and others in her short time here on earth than I could have ever hoped to accomplish in a lifetime.  She has made us complete. 

Life is different than it is for many others, but we wouldn't trade it or her for anything else in this world. 

by on Apr. 5, 2013 at 5:01 PM
3 moms liked this

Well I'm not sure if i qualify because I'm raising my sister and she is now18, but here it goes...

I was seven and the forth oldest out of six my mom had been put on bed rest and she had my oldest sister Amber call dad because the baby was coming and she said it was too soon, we went to the hospital and about two hours later the nurse came in and whispered to my dad, he came and told us that we would not get to see our new sister for a while and he took us home, he cryed a lot and he went to visit mom and the baby without us, 10 days later dad said we were going to get our sister we were so happy on the way dad told us her name, it was to be Bonnie Yavan Parsons, i thought it was nice and could not wait to see her, when we got to moms room mom was crying, she said that a nurse had turned the oxygen up on Bonnie's breathing tube and that the doctors did not think she would live... needless to say she survived but she would never be normal, she had cerebral palsy and hydrocephalus she did not get to come home until July. my dad left two months later, his parting words still haunt me "She is not mine I dont have Retards."

my mom had all of us help with Bonnies needs from that point on. when i was 12 mom was working all the time she had Amber and Julia the two oldest watching us, mom had me watching Bonnie because Cristle (the third oldest) was scared she would break Bonnie. mom decided to take Julia with her to get milk  they were riding bikes when a car leaving out of an entrance struck my mom and hit her so hard my mom went in to the second lane of traffic, she was taken to the hospital where Julia was told mom would never walk again, mom had suffered from severe head trauma, two cracked spinal disks and a broken hip, she was sent home three days later when she woke up, my uncle dropped her off, she did not know who we were or who she was, she did not walk for over two years, to keep the house amber had each of us go out and find work with the neighbors. Amber and Julia baby sat Cristle me and Russelll did yard work and cleaned houses and Nikki sold lemonade, we barely scraped by. from the time of my moms accident until now i have raised Bonnie... and i would not change it Bonnie did not say her first word until she was 6 her first word was mom, it took her another two years to say a sentence it was Again i eat, she calls me Again, my name is Adrian but i like hearing her call me

by on Apr. 5, 2013 at 5:11 PM
2 moms liked this
Hey when my daughter was three years old she went to a normal school while in class the teacher notice her behavior running down the hall ,hitting the kids biting and just can't sit still . At home she was just wild. Crying a lot and get very angry .I had to do something so I ask the teacher to test her and they did come to find out she had ADHD . So the next step is we place her in a class with special need class where she stay in one class . I been working on her reading and behavior skills I will never denied my child need she goes to therapy once a month she is on medication and she is doing great . Now that she is in high school she is reading better on a third grade level and makes As and Bs . Im proud of her . I am a single mom that deal with her disability.
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by on Apr. 5, 2013 at 6:07 PM
2 moms liked this

Wow ..where do I begin..My son was 15yrs old when he became special needs..he had alwats been a healthy child.Ver high spirited happy child.Could not keep him in house.always on run playing basketball or any kind of sports.One beautiful day he got a really bad headache when to lay down to rest .I then an hour later went to wake him and he could not wake up. we tried all kinds of stemily to wake him still could not..Then my husband and I carried him to truck took him to hospitalat Shands Hospital in Jacksonville,Florida.I approached nurse they had 10mhospital care or more with in less then minutes out to bring him in.They made us stay out front within 15 minutes longest minutes of my life..We were approached by a specialist that told us that he had a brain tumor that had ruptured and he blood on his brain.Tol us they would have todrill a hole in my childs skull to releave the pressure of blood on his brain.Then they told us that he would have to be put into a coma to keep his body stress free.and did not know if he would make it or not.He was in a coma for three days minutes feeled like hours did not leave his side was so scared that if I left him that he would not be ok.

by on Apr. 6, 2013 at 1:33 PM
2 moms liked this
My Aydan is 4 months old. I was thrilled when I found out in March 2012 that we were expecting after years of infertility, a diagnosis of PCOS, and one miscarriage. My pregnancy was going so smoothly and I never experienced any morning sickness and only a little fatigue. I turned down the blood test at three months pregnant to check for abnormalities cause I knew how they can give you false results and take the joy out of the whole pregnancy. At four months I had a sneak peek ultrasound and found out we were having a boy :) Then at five months I went for an anatomy scan where everything was fine except for a small echogenic cardiac focus on my son's heart. The doctor assured it was very common and harmless and usually disapears before birth. I had a follow up ultrasound a month later to recheck and it was gone, but then the doctor found extra fluid in the left ventricle of my baby's brain and said that he will keep an eye on it and if it seems to collect more fluid then there might be a problem. At my next ultrasound everything was looking normal again so I was told to continue on with a normal pregnancy. I was 38 weeks when I noticed my baby stopped moving so I went to the clinic where I was then sent over to labor and delivery at the hospital. After being on the monitors twenty minutes the heart rate began to drop drastically and I was rushed to the OR for an emergency c section. By this time my mother was already at the hospital waiting for them to get my epidural in. But it never took so I was put under general anesthesia. I woke up shortly after in recovery and saw my mother holding my baby boy :) so I asked to see him and she came to my side and I immediately saw something was wrong... he did not look like a typical newborn. It was not very long that they came and took him to the NICU cause he had poor color. I was then taken to a room where family and friends came to visit... but my baby was never brought to me. He was still in the NICU. I did not see him till the next morning when I could get out of bed. Down at the NICU he was on oxygen and a feeding tube and under a bililight. A pediatrician came over to talk to me and told me he had respiratory distress caused by pulmonary hypertension, a PDA on his heart, jaundice, and an infection that they could not at the time find the location. Then she saved the worst for last... "There is reason to believe your son has down syndrome."I felt like my heart exploded as she started pointing out the physical characteristics of ds on my son. She said they sent off his chromosomes to be sure. The following days were torture as I waited for confirmation and then also my son was not getting better. He was sedated and put on a ventilator to help his lungs so I was not able to hold or touch him. After a couple of days I was signing consent forms for a platelet tranfusion and a lumbar tap... where results showed the infection was actually meningitis. So a 14 day round of antibiotics were started. On day five I recieved the results... my new baby boy had Down Syndrome. I had to talk with the pediatrician and social worker so I would know where to start as soon as my son got discharged. He was finally breathing well on his own and came home on day 23 :) just in time for Christmas. He is now 4 months and growing like a weed. He has developmental therapy with EI once a week and sees his pediatrician once a month where he is also evaluated by a PT and dietician. He goes back to a cardiologist in a week to recheck his PDA to make sure it is closed and if going to an ENT for the fluid in his left ear. Other than that he is very healthy now and is such a joy! Never thought I could have such a special love for a special little boy :) PS sorry it was long but alot of emotion went into it!
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