Recommendations for parents with special needs children
We were not of this special needs group until May 5, 2022. Some of the issues below are important for parents who have a child with special needs. I hope this short list helps other parents.
Taking notes is helpful as we continue on this journey. We hope to be advocates for the requirements of daily life for families of children with special needs. For instance, when you are running errands or traveling, where do you go to change your child’s briefs? They are too big for a diaper changing table but cannot really use a toilet like everyone else. We have to be creative as we go about our day.
I have thought of several things since May that I would like to share with parents and families. This is not an all-inclusive list but some recommendations for those of you who have to care for a child with special needs. Whether the child was born with the condition or like Evie, all of a sudden was added to this special group. ?
1.? Believe in your child! You have the ultimate right to continue to care for your child and have healthcare professionals also follow YOUR wishes for YOUR child.
2.? Allow your loved one to rest. Eliminate noise and avoid visitors at their most critical moments.
3.? Feed your child healthy fruits, vegetables, and protein. Health fat is also essential for brain health. Even with a G Tube, you can blend it to a puree texture.
4.? Read the notes that physicians, nurses, and therapists write, if you can, in the patient portal.
5.? Review providers for nursing, medical equipment, and supplies especially when caring for your child at home.
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6.? Contact the insurance company if you are denied any service, therapy, or care after asking for pre-certification. Appeal their decisions!
7.? Be their voice in all matters. You are the parent or guardian and want the best for your child.
8.? Do your research to help your child. Get on medically or disabled children program lists early and talk to people who actually know about the programs or waivers. Sadly, we did not qualify for most waivers.
9.? If you have other children, have them medically screened if there is a family history of a brain aneurysm or AVM.
10.? Do not give up on them. Be patient. Brain injuries take time to heal and? your loved one may need extra time to recover.
with Toby Williams
But Evie Had Other Plans on Amazon
Freelance Legal Assistant
11 个月Always be their strongest advocate… love this Irene W.
Substation O&M Foreman at Xcel Energy
11 个月You have done such an amazing job taking care of our baby! No one could have done a better job. Wish we wouldn't have had to learn all this through the school of hard knocks.
Senior Associate General Counsel
11 个月Never give up! They are angels who bring love and smiles to all of us!
Cyber Threat Intel | Targeting Analyst | DFIR
11 个月Beautiful article from one special needs family to another Irene W.! The journey can be challenging, but it is worth it! It is important to celebrate the small wins, which will lead to something bigger! It is important for us special needs parents to believe in ourselves and know we made/make the BEST decisions with the resources and information we are given. Confidence and discernment are key! Be your child's biggest advocate! Love your child and embrace their unique abilities! Thank you for sharing!
Faculty | Business Administration, Organizational Leadership | Advisory Board Member
11 个月https://gofund.me/c07b380b