Well my friends I have decided to go ahead and make one big fat list of links that will guide you to everything I have found regarding Noah's diagnosis's. If I were to create a document myself it would be way too many pages for people to want to read so I am just listing links so you can pick and chose what you would like to read. I have listed them by diagnosis so you can get where you want to get faster :)
****keeping in mind I still am just learning about stuff myself and may not have everything listed that I should. But I would love to add to this list so please let me know what I am missing and can learn for myself too).
What to do right now:
- For ANY disability your child may have please look up your local "Early Intervention Program (EIP)" and if you qualify get started with this program as soon as possible. This program only goes up until age three and then there are other programs for older children.(this is a federal program (in the states) and does not work off of insurance but rather your family income amount to see how much you have to pay each month).
- If you are fortunate to have insurance or unfortunate to have to deal with insurance...Contact your provider and see what your plan covers, what facilities they cover, and what doctors they cover. Doctors will not know or care what your plan is so many of them refer you to places or specialists that may not be covered by your insurance so be on top of this at all times. You may also want to find out what your out of pocket costs are with your plan and if co-payments count towards this out of pocket amount. Every insurance provider is different than the others so every plan is different. Get to know the ins and outs of your specific plan.
- Find a FANTASTIC pediatrician who has experience working with special needs children. They will be your best resource and support in taking care of your child and getting you in to see specialists.
- Start to make appointments for your child to see "Specialists" as soon as possible because the waiting list for such doctors can be months away.
- Neurologists (seizure disorders, MRI's, EEG's, ect)
- Endocrinologists (diabetes, hormone's, adrenal gland, monitoring growth ect)
- Geneticists (chromosome or hereditary abnormalities, ect)
- Special Needs Clinics (Utah has one up at PCMC but not sure about other states)
- Ophthalmologists (eye to brain connections)
- Optometrists (vision and degree of eye sight)
- Therapy Facilities (Physical, Speech, Occupational, Vision)
- ***most facilities have a "quick list" you can get on once your child is starting to show signs of certain disorders (seizures symptoms, abrupt weight loss/gain, dehydration, choking, ect). Have your pediatrician call the specialist themselves so you can be seen much sooner.
I found this resource on the internet at www.caregiving101.org with some ideas on how to prevent “Caregiving Burnout”.
- Choose to take charge of your life, and don’t let your loved one’s illness or disability always take center stage.
- Remember to be good to yourself. Love, honor and value yourself. You’re doing a very hard job, and you deserve some quality time, just for you.
- Watch out for signs of depression, and don’t delay in getting professional help when you need it.
- When people offer to help, accept the offer and suggest specific things that they can do.
- Educate yourself about your loved one’s condition. Information is empowering.
- There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
- Trust your instincts. Most of the time they’ll lead you in the right direction.
- Grieve for your losses, and then allow yourself to dream new dreams.
- Stand up for your rights as a caregiver and a citizen.
- Seek support from other caregivers. There is great strength in knowing you are not alone.
Agenesis of the Corpus Callosum - Description
- NODCC -National Organization for Disorders of the Corpus Callosum
- NODCC's awesome brochure in many languages: Here
- Angels around the world
- ListServ-E-mail based Support Group for ACC
- Images of the different types of Corpus Callosum malformations
- Article and Video of a teen with ACC
- ACC medical study -look for the full pdf (its free)
- Youtube videos about ACC and families (looks at Dr. Sherr's videos for sure)
- Interesting blog post about this diagnosis
Septo-Optic Dysplasia Description / Optic Nerve Hypoplasia Description
- Magic Foundation
- Cortical Foundation
- Focus Families they have an awesome booklet on this site: Booklet
- Interesting blog post about this diagnosis
Infantile Spasms (aka West's Syndrome) Description
- This a an article we came across that scared us to death but then I found out that the data is really old and according to our neurologist is not longer "catastrophic".I only list it because you will come across this in your search and I want you to know that Infantile Spasm treatments have changed dramatically and my neurologist has not had a single child die from it. Here
Dysphagia (feeding tube stuff) Description
- Swallow Study
- Tube fed Kids Deserve to Eat- support group
- Silent aspiration and more on swallow studies
- Thickeners
- ThickIt
- Simplythick
- Xanthan Gum (making your own SimplyThick) here
- VitalStim Therapy -we had one visit to see if this method would help Noah but after one "test run" it was founded that Noah was past the point of needing this type of therapy so we didn't pursue it any further.
Hypotonia Description
Other links I found that I found helpful (even just for DIY ideas)
- Social Security Disability Benefits for Children
- Look up your local "Division of Services for People with Disabilities"
- Toys for those with Special Needs
- Special Needs strollers and such
- Zero to Three
- Babies with iPads
- Apps for children with Special Needs
- One Place: for Children with Special Needs
- Apraxia Speech Tips
- Apraxia Kids
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