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Raising Special Needs Kids Raising Special Needs Kids

Giveaway: Share Your Story and WIN!

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. 

Don't forget to tell us the wonderful things about your child and yourself as well!

Read what the other moms are sharing. If you find a mom that has a story similar to yours, quote that mom by clicking on the "QUOTE" button to share what you have in common!


One mom who replies to this post by April 30th at 11pm will WIN CafeMom Sports Pack and Water Bottle!



The Giveaway Rules:
The Share Your Story Giveaway starts 4/1/13 at 2pm (ET) and ends 4/30/2013 at 11pm (ET) (the "Giveaway Period"). Enter by replying to this post with an appropriate comment during the Giveaway Period.
Multiple entries are permitted and encouraged, as it increases your chances of winning. One winner will be selected in a random drawing of all eligible entries to receive a CafeMom Sport Pack and Water Bottle.
The random drawing shall occur on or about 5/7/13. No Purchase Necessary. Open to US, DC, and PR residents 16 years and older. Void where prohibited. Click here for the rest of the Official Rules.
by on Apr. 1, 2013 at 2:42 PM
Replies (51-57):
bakerraina
by on Apr. 23, 2013 at 12:20 PM
1 mom liked this
My daughter Paige was born on June 1, 2006 at 35 weeks weighing 4 lbs 11 oz and 18" long. We thought that she was normal......up until birth. But she was born with microcephaly and the Drs said they needed to do more testing. I was shattered. She was diagnosed at 2 weeks of age with severe lobar holoprosencephaly. The Drs told us it was incompatible with life and she would most likely not live to be 6 months old. They said she would never walk, talk, eat on her own. They said she would be like an infant for her whole, short life and would never know anything. They said take her home and love her until she dies. But I know a God who likes to perform miracles. :)
Paige will be 7 in just a month. She has been walking since she was almost 3. She can talk, abs has a great sense of humor. She is very very smart. She inspires me every day. She doesn't listen to anyone telling her she can't do something. On fact if she hears that she immediately sets out to prove them wrong!!!!
She does have issues though. She has ataxic cerebral palsy, seizures, hypotelorism, microcephaly, partial diabetes insipidus, hydromyelia, a g tube, just to name a few. But her strength and determination are so incredible! Her smile lights up my life. And honestly, even though we have issues and severe developmental delays ...................I wouldn't change her for anything!!!!!!
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lizard3731
by Member on Apr. 25, 2013 at 2:27 PM
1 mom liked this

On 10/15/08, at age 48, I gave birth to my 3rd child, a dear little boy.  We didn't know there was any kind of problem until he was about 18 months old when he wasn't talking.  In retrospect we should have noticed, he also wasn't waving, following objects, responding to his name or making eye contact.  He was about 2 before I started thinking something was seriously wrong.  After working with an early intervention program for speech and occupational therapy, we finally had him tested when he was almost 3 to determine that he is autistic.  At 4 and 1/2, he still doesn't talk much and his social skills are those of much younger child.  He isn't toilet trained.  He will eat only a few foods.  He throws things when he is finished with them, food, toys, whatever.  He attends a special needs preschool and is making progress, but it is agonizingly slow.   On the plus side, he is very sweet and loving towards his family.  He obviously loves his father, sister, brother and me.  He doesn't throw bad temper tantrums or act aggresive towards others.  So, we try to take one day at a time.

pattybear156
by on Apr. 25, 2013 at 7:57 PM
1 mom liked this

when Kaylia was born we had no idea of the special needs that she would end up having,. she was born during one of those rough winters, anyways. when she was born she was full term. and the drs said she had a three day window. and that was at forsyth hopsital where she was born, she was then bounced to baptist hopstial. there was a dr there that was suppose to give her open heart surgegy. ER.. and he wasn't able to at that time. so kaylia was taken down to Charollette Nc to have the ER open heart surgergry .

Kaylia had Open heart surgergy .and did well she was in the Charolette hopsital for a month . time went by and she had other health issues to crop up. at 1 1.2 yrs to 2 yrs old  was the time kids start walking. kaylia couldn't even sit up or walk at that time, and kept falling each time to walk, we took her to therpist and they put plastic shoes on her feet, to help her to walk. which was going agiasnt her. we found out she had severee rheumtiod arthirisit . and had to have shots right away. then she was on shots for almost 3 yrs and went to pill form . she evenutally was able to get off her medications . kaylia also had severe asthma growing up and had to have treatments round the clock when we brought her home. so kaylia is now 10 and doing well, she just recently had to have a second pacemaker put in. and doing well from that surgergy. and she loves being outdoors with the animals, and loves to swim. she keeps me going and is a insperation to the whole famliy and she has a big brother.

I am a musican ,and love to sew, and make crafts. I am a stay at home mom. I love both of my kids very much. there's nothing in this world I wouldn't do for the both of them. I'm so greatful kaylia graced our lives and has done well. by the grace of God.  i am forever greatful to God for letting me raise such a special child.

barbara527
by on Apr. 26, 2013 at 10:45 AM
1 mom liked this
IM a single mom of a 2year when she was 2months found out she had torticollis& plagio sefly it just began I was soon everything bye my self with no ride an a child with these problems I had therapist coming to my house 3 times a week I had lots of doctor apptoiments I started getting stressed I had no one to turn to an this all new then they told me my baby needed a helmet I cried people stared asked pionted I didn't want to come outside but I had no coice cause I was a single mom with no help then I go to the doctor they give me the biggest scare they tell me my daughter daughters was closed they had informed me she needed surgery my heart dropped I cried they told me they would have to cut her from one end to another end I said no it than put alot on me I said no said second appion come to find out she didn't need the surgery but I was struggling I didn't have a job an it still the same IM still struggling I think she needs me she never been away an I just found out like when she was 1 in a half she has ciari malformation number 1 then I find out she has oddness an that makes since to me slot of thing I had questions about then I find out she has state seizures then I hear she got to have MRI once ayear for the rest of her life it's hard I feel alone an nobody around me understands I cry every night IM not working my baby will be 3 an again I have no money to throw her a great 3 bday party I can just get a cake it is breaking my heart but no one can handle my daughter an I am scarred to leave her with anybody life is hard
Caidysmom
by Member on Apr. 29, 2013 at 9:28 AM
1 mom liked this
A liitle background into my 1st daughters birth... She was born at 30wks via emergancy csection. Due to placental abruption, preeclampsia, and reverse diastolic flow... I never thought I would have another baby after all my Qst an I both went through...fast forward 5yrs. I found out I was pregnant with dd2 just 2wks before dd1's 5th bday..i was terrified but determined that this was our baby and we were keeping it. Saw high risk dr. Was hospitalized 3x for preeclamsia, put on magnesium, given steroid shots (just in case) an put on bedrest at 31wks. Catera was born at 35w6D via emergancy csec. Low amniotic fluid, reverse cord flow an while having US lost her heartbeat. She was IUGR, hadn't gained weight since 31wks. She weighed 3lbs 11oz. She was kept in NICU for 3 1/2 wks .. where they found a small ASD (hole in heart). Feeding was her main issue in NICU an still is today. They were watching for NEC. She also has severe acid reflux, and milk protien allergy. Upon coming home she weighed 4lbs 14oz. Feeding was a battle. Finding the right formula. She is 23mo and still on Elecare. At 4 months , our pedi reffered us to PT for torticollis .. at 7 months to neuro because she was using left side an making good eye contact. At 9 months feeding..she is still listed as FTT. AT 13 MONTHS our PT suggested OT because she doesn't like being touched an PT isnt going anywhere, at 15 months her feeding therapist suggests speech because she has lost the whole 5 words she was saying..at 18 months she was evaluated by the Autism center. She was dx'd SPD. She sees them again in 3 months for a re-eval. She is now walking, an talking a little... Still drinks formula out of a bottle..has severe seperation anxiety. Her sensory issues are thru the roof! But when she's having a good day , all you can do is smile! She is absolutely gorgeous! An when she wants to be , she is the silliest of the silly! Its been a long road an we still have surgery for the hole in her heart an anoth eval for autism...but i am ever hopeful! Its been a long 2yrs but I wouldn't change it for anything. She has brought so much joy to our family!
Caidysmom
by Member on Apr. 29, 2013 at 9:29 AM
1 mom liked this

Cafe Robin
by Group Admin on May. 14, 2013 at 4:00 PM

congratulations ....and the WINNER is....

                                 ladyraven16

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