|AMELIA GROWING UP SPECIAL|
|AMELIA IS OUR 15 YR OLD WHO WAS BORN WITH MANY DISABILITIES. She has an unbalanced chromosome translocation of 2p and 14q,
Partial Agenesis of the Corpus Callosum in the anterior portion of the brain(P-ACC).
Amelia also has Periventricular Leukomalacia (PVL),
Sensory Integration Dysfunction(SID) also called Sensory Processing Disorder(SPD),
Pervasive Developmental Delay Not Otherwise Specified(PDD-NOS) which is a form of Autism,
Epilepsy with Partial Complex Seizures under control
and Global Developmental Delays(GDD).
Amelia also has pediactric sinusitus or sinus disease,
frequent ear infections, she has had at least 3 sets of tubes in her ears, very low immune system, and chronic eczema outbreaks.
She is easily startled by noises. Such as, balloons popping, motorcycles, loud cars, carnival rides, and big crowds overwhelm her greatly. Amelia is more comfortable when she is on a routine. Change is difficult for her. She is high energy and always on the go. Amelia likes to put all her fingers in her mouth. This is due to sensory issues.
Amelia has the biggest smile and the best sense of humor of anyone I have ever met. She loves music and going to kids church. She is very inquisitive. She also has a very good memory. She is affectionate and loves her pet dog "Wishbone". Amelia is a joy and a blessing to our lives and we are thankful for the opportunity to raise such a precious daughter.
|1. Who is Amelia? Amelia is our youngest of two children. She is always seeking attention and is a very demanding person. Amelia loves to sing, picture read books and have books read to her. Amelia likes to watch interactive tv programs such as 'Dora the Explorer', 'Blue's Clues', 'Sesame Street' and 'Between the Lions'. She has a great sense of humor and loves to try and tell jokes. Singing is another one of Amelia's favorite things to do. Whether it is singing in church, singing in the van while going places or just playing by herself in her room ; you can always hear her singing, whistling or humming. She is very inquisitive and is often asking "why?". You can tell she has an extreme desire to learn. Amelia loves to color even though she is not very good at staying in the lines she still gets great joy from it and loves to share her pictures with anyone who will accept them. Amelia is easily frustrated. She wants to express herself but often doesn't do so appropriately. Amelia does not like change in her routine. She does better if you prepare her ahead of time. When it comes to directing Amelia or redirecting her it is always best if you speak to her in a positive friendly manner. Amelia does not react well to strong loud voices with negative inflections. When given choices Amelia will often choose the last suggested option. So it is always best to repeat the options in both orders. Amelia responds well to verbal praise, sticker and candy rewards. She loves gummy worms and fruit chews and really anything gummy. However, gum will always be swallowed so it isn't the best reward. She also is comforted by swinging in her net swing and has a great attachment to her doll "Lacey" , which she has had since age 1.
2. What are Amelia's strengths? She learns well with music and song. She has a great smile and loves to laugh. Books are her best friend. She is a very loving person and wants to be everyone's helper. Amelia has a creative imagination and she is a very curious person. She knows her Alphabet. She can recite it and also recognizes them in written form but mostly upper case letters only. She likes to count but often gets stuck after 12 and starts skipping numbers. She has lots of energy and likes to gallop, run and jump. She loves her brother and playing video games with him and is a Daddy's girl also. She has a strong relationship with her dad. He is her rock and has been from the very beginning. Dad has to be the one to tuck her in at night and Dad makes music for her and she loves to sing for her daddy. When it comes to motivating her just say "do it for Daddy" and she will give it her all.
3. What are Amelia's successes? She has learned to ride her bicycle with training wheels although is unsteady in directing her bike. She has learned to gallop and loves to show this off wherever she goes. She recognizes her written name and often recognizes common site words. Amelia has learned to play the gameboy all by herself. She can turn it off and on and knows how to set up her 'Dora' game. When she is done with her gameboy she will often put it in it's case like her brother taught her to do. She has now learned to use a mouse with her left hand . She isn't completely accurate at it, but she is diligent. She is learning to express herself in more gentle ways. Such as being less aggressive with the dog. She knows that being gentle is the nice way to show love and affection.
4. What are Amelia's greatest challenges? She is easily distracted. She has a short attention span. One of the biggest challenges for Amelia is her fear of sirens and presence of firetrucks and police. She doesn't adapt well to change. She also does not do well with loud and sudden noises. Noises are a great challenge for Amelia. She is easily overwhelmed by crowds and sounds. Amelia also has a very short attention span and is extremely hyper. Amelia is completely unaware of dangers. She doesnt seem to understand cause and effect.
She has the capability to learn but is greatly challenged with expressing her learned skills whether it be showing them or talking about them. She also has oral defensiveness. Sensory issues has always been an extreme factor in Amelia's life. Her greatest challenge is her self help skills. She has difficulty with buttons,zippers and snaps. She also has difficulty dressing and fastening her shoes. She has problems with her fine motor skills and has not developed much writing skills.
5. What are Amelia's needs? Amelia needs help transitioning from one subject to the next and transitioning from one place to the other. Toileting and handwashing is another area she needs help. Amelia needs prompting to stay on task. Amelia needs work on her self help skills and requires assistance in this area. Some assistance is needed during meal times also. Social interactions with peers needs some work. She loves being around kids but has a short attention span when playing together.
What are our dreams for Amelia? Our dream is for Amelia to someday be independent. That she be able to no safety rules, obey laws, follow simple directions. To some day read, even if it is at a low level. To be able to write and to socialize and know social cues. Perhaps hold a simple job down like library assistant. Wal-mart door greeter. Or numerous other simple jobs.
|Things take longer for Amelia to process because of her ACC so you have to give her a few seconds or minutes to respond to your question or repeat yourself twice. Sometimes Amelia will get stuck when asked a question. When given multiple choice say apple or orange she will say orange and if you turn it around and say orange or apple she will say apple. So sometimes when giving her choices you have to ask her 3 or 4 times to see if this is definetly her choice or just repeating. Also, with Amelia's ACC it takes her a little time to process ideas and lessons but she is getting it. She might talk about something she did yesterday in your mid conversation about something new today. So this takes a little getting used to.
One of Amelia's strengths is her vocabulary. Amelia speaks very well. A problem though is her continued mimicking of others. She will pick up other kids speech patterns. But, Amelia can pronounce all words the way they should be with the exception on "th" those letters sound more like "f". Unfortunately phrases that she heres others speak catches and she obsesses on them sometimes. Amelia has a great sense of humor. She likes to hear knock knock jokes. And other simple jokes like, "why did the cookie have to go to the doctor?" Because he was feeling crumby"
Amelia is high energy and loves to swing and climb and slide.
Safety awareness just is not there. She needs little reminders ALL THE TIME. She does NOT know danger. Amelia has major sensory problems. She chews her hands constantly. That is why she wears a "T-tube" necklace so she can chew on it and not on others or her hands. Her poor hands often get hang nails and look sore from chewing them. We usually say"Amelia, HANDS" and she will take them out of her mouth and put them in her lap. Or we tell her to use her chewy that is what she named her necklace. Along with her sensory issues she does not feel things like we do such as pain. She can put her hands in hot water and not feel it and shut her hand in a door with a delayed reaction.
Amelia is a routine kinda gal and anything or anyone out of the ordinary will make her anxious or act out. Things that comfort Amelia listening to music on the head phones. Taking her away from the crowd or noises that is bothering her and let her swing. Sometimes a ball bath. Reading a book to her. Amelia absolutely LOVES BOOKS! Which sometimes becomes obsessive when she sees a catalog and will say it is hers and she won't want to give it up.
Amelia will mirror image you. If you talk in a harsh voice she will react in a harsh way. If you have an angry look on your face she may suddenly become angry and throw something or swing at you. But, if you talk in a soft quiet tone with a smile she will treat you with SOOO MUCH LOVE.
Things that upset Amelia are loud noises. Strange men. Getting out of her routine. She does not like Firetrucks or Ambulances and freaks out when there is a siren. We had a bad car wreck when she was three and she just never got over that. She has developed a fear of sirens. Also BALLOONS is a big no no. She will cringe if one is even in the room with her. She anticipates it popping. She has startle seizures sometimes due to popping balloons.