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Raising Special Needs Kids Raising Special Needs Kids

Giveaway: Share Your Story and WIN!

Posted by on Apr. 1, 2013 at 2:42 PM
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Share your story: Let's get to know eachother!

Tell us about yourself and/or your child.  When you first suspected the possibility of an issue, treatments, therapies, etc. 

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by on Apr. 1, 2013 at 2:42 PM
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ladyraven16
by Member on Apr. 1, 2013 at 4:50 PM
3 moms liked this
Ok.

When my don Ryland was a baby he cried non-stop. He hated being held and refused to bf after a few months. When he was 2mo old, he flipped himself over in his swing and was hanging half way out of it. At 8 mo he was climbing out of his highchair onto the table and he couldn't even walk! By 1 I knew something was different. He still cried all the time. Still hated being held, banged his head on things and threw massive tantrums. When he heard loud noises he would fall on the floor and scream and shake.

When he was 18mo I took him to early intervention because he had no speech and I knew something was wrong. They said he was fine and to come back in a year if he was still struggling. He started talking at 2 but the other problems were only getting worse. The head banging, self injuring, biting, hitting, screaming, huge meltdowns that lasted forever. Not sleeping well etc.

After early intervention turned us down I started talking to specialists at children's hospital. We met with an OT who decided he needed therapy. He started going once a week. After 12 weeks we were asked to leave because of his behavior. He constabtly hurt the OT and refused to do any activities except the swing. At the same time we were talking with psychologists. They told me they thought he might be on the spectrum. I disagreed, because he didn't have a lot of the markers. I didn't know at the time there were actually different severities. I only knew kids with low functioning autism who didn't talk or anything. I was very ignorant on the subject. They also brought up adhd and sensory disorder. I refused to get an adhd dx at 2 so we just kept trying.

We went to a number of psychologists, behavioral therapists and OTs. When the year had gone by we went back to early intervention. They said that he was delayed in life skills, cognitive ability and social skills. He received OT and behavior therapy for a few months and then started preschool.

The first 6mo in preschool was miserable. He cried everyday when I dropped him off. He had to have a para in class because he wouldn't participate otherwise. After talking with the OT and special ed teacher, I decided he needed to get a full developmental eval. They didn't think he had cognitive delays and netuher did I.

He had his full eval last October at 3.5. He was dx with severe combined type adhd, spd and hand tremors. The eval took 5 hours. They told me that he doesn't have the classic markers for Autism but he has enough that they could give him that dx also. I told them I wanted to work on the adhd and spd and are where we get by k because a lot of the syptoms he shows of asd overlap into spd and adhd dx.

We started meds when he turned 4in January because he was having trouble doing any work, sitting in circle time, keeping his hands to himself etc. He has made huge leaps since then. I'm very happy but we still have major meltdowns, he won't sleep without melatonin, he can't draw or write yet because of a fine motor delay and his hand tremors. He just recently learned to dress himself, still working on socks and shoes lol.

Ugh. Well its been a long process and I left a lot of the story out because typing on my phone is just too much lol. I know we've got a long road ahead of us still but I'm hoping with getting him back into OT and with a supportive special ed team at school he will be very successful someday.
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arkansasmama08
by Gold Member on Apr. 2, 2013 at 8:52 PM
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I have 3 children, all with special needs and we are still working in getting them diagnosed.
My oldest is Zachary. He will be 7 in July. He was a fussy baby and was diagnosed with colic and reflux at 3 months. When he was born, he refused to nurse. For the first month or so I fed him cradled up to my breast with a medicine dropper of bm. He finally started nursing and continued until 9 months old. He never seemed to be attached to anybody. He wouldn't cry when I left him or notice when I returned. He would scream everytime we went to a store or restaraunt. He loved to lay on the floor and watch the fan turn.
Despite all this we didn't see a problem. When he was about 15 months we had him tested for speech because he only had one or two words. They said he didn't qualify so we let it go. When he was 3 we put him in preschool. That's when he turned. He'd had no major behavioral problems until then. He lasted just a few months before I pulled him out. He'd been potty trained for about 6 months and started having accidents, peeing on the wall, screaming and yelling at the teachers, throwing toys, hitting and kicking his teachers. My friend mentioned autism to me then but I tried to brush it off. A few months later we enrolled him in a home based Headstart. I talked to his teacher about his problems and we started the referrals and testing. He qualified for pt and ot. Then he was evaluated by the behaviorist and the result was an educational diagnosis of Aspergers. I cried. Then we began the long fight to get the proper therapies and funding. Still fighting for those and his diagnosis. Last year we went to the developmental center and the dr refused to diagnose him, ignored our concerns, and sent us home. We immediately requested a second opinion and got our appointment for this July. I'm praying we'll get our diagnosis and finally be able to get him back into therapies.

Our daughter was born a month before Zacks 2nd birthday. She was a happy, easy baby. A week after she was born we were admitted back into the hospital to treat her for jaundice. We were there for a week and her levels were the highest our nurses had seen.
We had concerns when she would refuse to put any weight on her legs. When she wasnt walking or even cruising by a year, I talked to her dr. They refused to do anything unless she wasnt walking by 18 months. She started at 16 months so we let it go. By then we were consumed with Zacks issues, which were getting worse. By 3 we had her evaluated by the school, who said she was within age range for all catagories. I had concerns about her gait and other motor areas so I took her to Zack's pt and had her evaluate her. The result was a 40% gross motor delay. That got us our ot eval that showed major fine motor delays and more sensory problems than I could dream of. She's been in ot and ot since and is making slow but steady improvement. She's suspected of having spd and possibly autism.

Jeremiah was my surprise baby. We weren't planning on another baby for at least another year, but God had other plans. I found out I was pregnant right after Maggie's first birthday. He was a big baby, 9lbs, 13 oz. He took right to nursing and didnt wean until 16 months. He was very slow to put on weight, was a fussy, clingy baby, and cried anytime anybody else held him or when he was in the carseat. He walked at 11 months, and seemed very smart and very busy. I had him evaluated at 19 months because he had only 5-6 words, and mama wasnt one of them. The testing showed he had a moderate delay in fine and gross motor and some sensory sensitivities we're keeping an eye on. He has also been diagnosed with reflux, and a related breathing condition. He sees a pulmonary and GI specialist at children to monitor those and his weight gain. At just past 2 he was put on pediasure to help him gain weight. He'll be 3 next week. He still cries whenever I leave him and clings to me. He won't use a regular cup, silverware, or the potty. He cries at loud noises and strongly resists transitions. Right now he's only considered developmentally delayed, but I'll have him evaluated within the next year to see if there's anything else going on. Right now I'm fighting to get his developmental therapy continued and get state funding for his therapies.

Sorry, I know this is long. But that is the short version lol. We have a complicated little family but I love them and don't know what'd I'd do without them!
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x_Starr_x
by on Apr. 2, 2013 at 8:57 PM
2 moms liked this
my son was “normal“ till 3 then we noticed the changes we tried many docs and most wouldn't listen. my son has whorl wind of mental issues. after all the docs I finally had a break through with my sons school and a new doc he has been diagnosed with ADHD, EMOTIONAL BEHAVIOR DISORDER, OPISITIONAL DEFIANCE DISORDER AND SCHITZIOHRINA. Its hard and always change meds for his needs hes on intuniv for adhd rispidone for the schitziohrina and tryliptol for the others. most people don't understand the battle mentally they look at him and see a "normal' kid but have no real clue of it. my son has special needs classes and transportation which has helped a good bit I just wish he was mentally normal sometimes. expecially when the voices come and the melt downs. my son will be 11 this yr its been a long road.

forget to add my son had a recent mri which showed lesions areas that have been damaged some how and his cerebellum is slightly slumping into his foreman magnum.
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jmrb2012
by on Apr. 2, 2013 at 9:30 PM
7 moms liked this

i have 1 10 month old daughter  when my husband and i found out we were pregnant we were estatic we only been married 4 months before i was pregnant, i always wanted to have a family... so we started planning like any other mother and father would do... i had a good pregnancy no morning sickness really, the only thing i had was gestational diabetes...well  i was due on may 28th a week after my 1 year wedding anniversary, but my doctor thought my daughter was going to be big so he induced me on may 23rd, they didnt start pitocin they did that cervic pill, but i wasn't really progressing. my blood pressure was really high and they gave me staydol then an ambien to help me sleep then the dr said to give me the epidural to lower my blood pressure i dont really remember much of that night except waking up with oxygen mask on my face my daughter heart rate dropped a couple times during the night...well the doctor came back at 8am on the morning of the 24th and broke my water and realized my daughter had pooped in the womb... the nurses tried to flush it out but,he waiting 2hrs after that to dicide to bring me into c-section. i thought i heard my daughter cry, but she wasn't breathing when she came out i remember them working on her and her kicking them, she was then rushed to a bigger hospital nearby to the nicu, i was not transferred with her i didn't get out till that saturday. but she began having seizures  and she had brain damage she was in the nicu for 36 days, she was just diagnosed with cerebral pasly and she has epilespy... i know that this is not want we had planned and i am still going through the moitions of being a new parent and being a parent to a special needs child and it hurts sometimes seeing all the other kids her age sitting up so good.. but i would not trade her for anything, i used to say i wish that she didn't have such a hard begining but then i wouldn't have my beautiful warrior princess... she is such a wonderful baby and so happy all the time..

willysmama
by on Apr. 3, 2013 at 6:38 AM
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Here is his story. March 29, 2005 (he was 4.5 months old)we were doing our ususal running around before daddy (husband)came home. We went and had lunch with daddy because daddy wanted to see him. We went to the store pick up a few things and than went home. I got him out of his carseat and into his bouncy seat. Where i fed him a little cereal and formula. I picked him up to burp him and he settled down to nap. So i got in a comfy position on the couch to allow him to nap i was still waiting for the burp. He fell asleep but wasn't totally out yet. I turned on the tv to watch the nanny while waiting for daddy(husband) to come home. That is the last thing i remember til my husband was screaming telling me our son wasn't breathing. I was groggy not sure why. I checked for myself and sure enough he wasn't breathing.

My husband called 911 and as we were waiting for the ambulance to come he told me our son was face down in between my breast and armpit. When the ambulance came they took our son to the nearest hospital. The hospital ran lots of tests and than later deteremined that we could see him. They couldn't find any cause of why this happened. They grilled us both. Making us feel smaller and stupider by the second. They wanted to keep him overnight for oberservation.. So I stayed with him. Sent husband home to get formula cause he hadn't eaten in 6 hrs and i figured some of his cries were because he was hungry. The nurse allowed me to feed him. Husband went home to get some sleep but he didn't get much. Because when he left our son had a seizure, the nurse and his pediatrician came in saying we shoke him! And we weren't goint to see him again! I called my mom in a panic crying! She and my step dad left the next morning to be with us. I was like wow! We did no such thing! So they took our son down to so a ct of the brain. His brain was swelling but they found no evidence of him being shaken. He was than transferred to another hospital that had a pediatric nuerosurgeon just in case his head had to be open. Thank God it didn't! That hospital too suspected shaken baby syndrome and we weren't allowed that much time to see our son without supervision. They too later discovered it wasn't and allowed us to visit him without supervision. They to grilled us and compared our story to what we said at the previous hospital. No change in the story.

They later put him in a drug induced coma (which i later found out if a brain injury is suspected is the worse thing they could have done) and they eventually allowed him to come out. He was still in the childrens intensive care room but not drugged. They put breathing tube down his throat and sewn in his central line. This is where we were told he was BRAIN DEAD! I didn't believe them! I got a second opinion and he agreed with them(i later found out is was another college of theirs). Anyways i waited another week before doing what they wanted me to do and i am glad i waited. Because there was another head pediatrician dr came in and tried to taken the breathing tube out. But couldn't because of the amount of saliva. When i came back in, I talked to a totally different dr and he tried but gave my son something to dry up the salvia. This dr asked questions before he tried and he was successful of getting my son off the breathing tube.  After that was taken out he was switched to a semiprivate room. But they put in a feeding tube down his nose, which later he pulled out himself. When he was placed in a semiprivate room the child protected services came and asked me the same questions the hospital did and went to my house and talked to my husband. Anywho it was ruled as an accident. and we were allowed to keep him. That was the best mother's day gift i could have ever gotten!! Our son was kept in the hospital for 6 weeks. and it wasn't til toward the end of the 6 weeks he started getting physical therapy and occupational therapy and speech. He was 6 motnths old when he was released from the hospital and all his muscles were back to the newborn stage. Now he is 8 yrs old and can walk with assistance, eat and drink with help from mama or daddy, and can go potty on his own. We still face challenges but  I will never forget that day! even though i try! He was put on phenobarbital for seizures but has been off it since june of 2006 with no seizures!

And we still don't know why and why couldn't he pick up his head and why i passed out too. My uncle has a theory. When my uncle was redoing our house after katrina we learned that the wrong gas pipe was put in the kitchen and it was rusty and it wasnt capped off correctly. The doctors blame my sugar level but i never pass out from a 44 as to why i passed out. I have forgiven myself but it took a lot of years to do so. I still feel guilty at times as well

darbyakeep45
by Darby on Apr. 3, 2013 at 7:20 AM
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Brady is 4.5 years old with Cystic Fibrosis, Autism, Aarskog Syndrome, 16p Chromosome Duplication, Asthma, Gastroentesis, and Brain Damage.  He was born at 38 weeks weighing only 5 pounds.  Failure to thrive for sure.  We knew he had CF at birth.  The other diagnoses didn't come until later on.  He was diagonsed at 18 months with Autism, 2 years old with Aarskog Syndrome & 16p Chromosome Duplication, 1 year old with Gastroentesis and Asthma.  

N.Carter2001
by Silver Member on Apr. 3, 2013 at 2:26 PM
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Jacob was Born  April 24, 08.      My doc said he was early I don't know why I had 2 different due dates. But he was still early. My town did not have a nicu in hospital. So they had an ambulance just come and get me. Jacob was born after midnight. I did not get to hold him untill they checked him over. He just wanted to sleep. Had a hard time getting him to eat. He was also our 1st child. But he was 5 pounds 5oz. The hospital nice and paid for a motel near hospital. Cause he had to stay a week untill we got him eating better. The only time I worried was his legs would shake. My boyfriend has hsp. His legs don't work. And his legs shake. Doc kept saying cause Jacob born early that normal. Yes we know it could be past down. Jacob cryed a lot. I could not put him down. I try to give to daddy. He felt like our son did not like him. He would cry and scream if anyone else tryed to hold him. I was the only 1 who could hold him. And he was fine. Our friend wanted to watch him so we could go out to dinner. I got him back and she said never again. He would not stop crying. We had to teach him everything to rolling over to crawling ect.It took us a long time and had to get him pt to help us. I knew he already had hsp. I think he started walking after 2 birthday but he had a walker. But in a year he could not do it anymore. We so busey trying to get him walking. We don't notice he had other problems. Like no eye contact, wants to play alone. Way behind on talking. And at 1 point he even lost those words. Doc kept saying cause he born early that is why. We did ask about autism. Doc only ask does he hit head on wall or hurt himself. No. He don't have autism. After his 4th birthday of last year. We got told he has autism. He been in preschool for 2 years now. Last year he cryed and screamed when I left him. He played alone. This year is going better. He loves school. He will watch me leave. I put his bag away and he already at the window waiting to see me go. He says a few words at school. He will kind of play with  his class. no luck on potty training. He does have a wheelchair that he pushes on his own. He learned that very fast. He has a baby brother and at times I think he trying to teach him. He was born April 16, 2012.   We live in a small town and I found out the hard way they don't deal with autism. Jacob got speech but  found out he has autism. No more speech. Preschool the speech lady don't want o deal with him. He only gets 20 minutes 1 day a week. And he was going to get a speech device but she gave up on him after 2 days. We did get him a little extra speech but it in another town. And with winter back on long waiting list. So many kids with autism and very little staff. We already got told with ot. If he don't pick up fast no more. I don't see that as being right. I never knew with autism walking into a doc office or new place he freaks out. I'm worried when  let doc do surgery on his legs and hips this summer. So maybe he can sit better and be able to stand. Maybe walk at some point. I also found out my mom had problems. I was always told I could not grow up and do stuff. Because I have cp. so if my writing bad that is why. But my ex mom at one point wanted my son to be with some strangers or a group home. But I found out who my true family is. I have done a lot with my life with her gone. In 2 month I'm going to take a drivers Ed. Yes it sad I'm 31 years old and don't know how to drive. My ex mom tore me down. You can't do this or that. She never let me try. My boyfriend still trying to build me back up

RobinChristine
by on Apr. 4, 2013 at 1:21 PM
5 moms liked this

Thor Michael was born October 9th,1995 at 4:16 PM. baby boyThor was born blue and my OB was ready to call a stillbirth when Thor let out a small noise,medical professionals jumped into action.He was 6 pounds,9 ounces and 21 inches long.His APGAR'S were bad and was admitted NICU in serious condition. When he was 3 hours old,we learned Thor had Tetrology Of Fallot,there were 4 defects of his heart.Thor came home when he wa 3 weeks old and turned blue when crying so we had oxygen " just in case",he was not allowed to cry any length of time due to "blue spells" At his 5 week cardiologist apointment we learned his main heart artery was getting too narrow and he needed a cardiac cath. This was scheduled for the Tuesday following Thanksgiving. After the procedure Thor started having seizures and test results showed he had suffered multiple strokes and was 75% brain damaged to he left side and 25% to the right.He had open heart surgery when he was 15 months old. Thor has facial paralysis,right sided weakness,is nonverbal,also has CP,scoliosis and Reynaulds Syndrome(he turns blue when cold/stressed). Thor wears a back brace and a brace on his right leg so he can walk. Thor loves music, Disney movies,footballamerican football eatingeating,he needs to eat every 2 hours to help him gain and maintain weight.Thor loves spaghetti, pizza,salads,you name it,I think he will eat it. Thor also loves going to the parkslidegetting ice creamice cream riding his bike,playing on the trampoline,swimming and loves going on the bus for schoolschool bus.thank youfor getting to know my son,our special blessing This is Thor today at age 15!!!!! See that winning smile!!!!

Me,Mickey,Thor,Minnie and Paul at Disney on our Make A Wish trip,Thor turned 16 on the trip!

MommeisQueen
by on Apr. 5, 2013 at 2:41 PM
2 moms liked this
Hi, our daughter is three years old. She is a beautiful, smart and sweet girl. I've had some concerns about her behavior for a while now but am not sure what to make of it. She has her first appointment with a child therapist in a few weeks. Basically the things that concern me the most are that she doesn't make eye contact with us, she speaks well but cannot hold a conversation she mostly says word or phrases she has learned or heard. Her energy is off the charts and she is very mischievous. Sometimes she has very loud emotional tantrums over the slightest things. I have been working with her on lots of things ...especially eye contact, answering simple questions and the typical preschool things....
stazme
by on Apr. 5, 2013 at 2:43 PM
4 moms liked this

My name is suzanne and my son is Zakarey, we first learned about his spina bifida at birth. We didn't have prior knowledge of his disability.  He diagnosis of lipomyomengencel was an earthquake in our lives. We were unsure of his future as we still are today 14 years later. He was initially thought to have spina bifida occulta and seemed to be the most common form and the least amount of concern. When zak was 3 months old his right leg stopped moving so his neurosurgeon decided that it was time for him to take a look inside and see what was the situation with Zak's back, he informed us that is was a prolactive surgery. "what he went in with was what he was coming out with" only to find that a few hours  after surgery zak started to move his right leg again and the doctor changed his diagnosis from Occulta to the most severe form of Spina Bifida in comes the storm of lipomyomengecel. Over the last 14 years zak has faced 10 surgeries in all that includes 5 back surgeries and 3 foot surgeries and a major femer break surgery and a heal cord lenghting. He is now just coming off the last of the 10 with a recent bladder botox surgery. This is turning out to be more troublesome than originally thought and we are in the disscussion phase of doing a mitrofanoff surgery. Over Zak's life he has faced so many set backs and he still keeps his spirits up by telling me "mom at least I can still walk eventhough it doesn't look cool". Let me tell you he keeps me and my spirits up! Thats a big job for a teenager to handle, but he does it with a smile every day.

so that's our story in a nutshell

Thanks for letting me tell it

sue

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