| Living with Neurofibromatosis ADHD & Autism/Aspergers |
I have Neuroifbormatosis, Spinal Stenoes, Spina Bifida Oculta, and a Below Knee Prothesis. I have two daughters who were born prematuraly. My oldest daughter is now 14 years old. and was born at 30 weeks she weighed 2lb 4oz and 15in long. she spent 2 1/2 mo in NICU and has been dx with Neurofibromatosis, Autism / Asperger's, ADHD, Sensory Intergration,Asthma, Mild CP in Legs, Speech defictes. She still gets Speech and is in the 8th grade. . My youngest daughter was born at 30 weeks and weighed 2lb 10oz and spent 1 1/2 mo in NICU she has been dx with Neurofibromatosis, Autism, ADHD, Sensory Intergration, Asthma, low vision (-3.25 in both eyes, -400 in right and -700 in left) Migraines. She is in the 7th grade and now being homeschooled. The school system just does not know how to deal with her autism and behaviors. . Many children with NF can also have the following condiontions . Learning Disabilities, Predispostion to Attention Deficit Hyperactivity Disorder Predisposition to Pervasive Developmental Disorders (Autism), Vision damage Speech impairments. Large head or macrocephaly, Early or delayed onset of puberty, Dysfunciton of the acoustic hearing nerve (hearing loss, ringing in the ears, and problems with balance). High Blood Pressure, Zeizures and Headaches |
| THROUGH THE EYS OF A SPECIAL NEEDS CHILD S - Spend time getting to know me P - Please be patient with me; I may not be able to do the things your child can E - Enjoy learning about what I have and what is wrong with me so you will understand C - Care about what my parents tell you about how I communicate I - Imagine if your child had problems then realize what my parents feel L - Listen to me, I may be hard to understand but if you take the time you can understand me. Learning is very hard for me; I may not be at my age level N - Never blame my parents they didn't do anything wrong, they didn't cause me to be this way E - Encourgae my parents they need it E - Entertain me, so my parents can have a night off D - Distraction is part of my life daily. I'm on the go all the time I never slow down, I get into everything & time out doesn't work with me, becasue I can't sit still, I try but I can't S - Screaming is what I do when I can't handle what is going on around me, when I get upset because I can't sit still I try but I can't C - Communication is very hard for me; I may use sign language, gestures, words, communication boards, time line boards H - Helping me understand imput is part of my parent's lives 24 hours a day I - Imagine not being able to hug you child, even though your child wants to be hugged but your child can't handle it, sometimes hugs hurt, & sometimes they don't D - Disabled means doing something different then someone else, sometimes with aid sometimes with special equipment, & sometimes with therapy MOM TO A SPEICAL NEEDS CHILD (REN) WRITTEN BY: BEA R. 11-27-97 |
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