Special Needs Daughter & Working from Home

[manduh_72]

Hi Everyone,

It has been a long time since I have been on the forum, but I am glad to be back!!

I have a 2 yr old Daughter, Sophia! She was Diagnosed with Microcephaly at Birth. She was also diagnosed with Global Developmental Delay and Obstructive Sleep Apnea. We do Speech, PT & OT from Early On Services that come into the home 2 times a month. Also, she has OT & Speech outside of the home once a week. Sophia has week fingers, her right side of her body is week, sensory issues, her speech is only at about 14 months, low muscle tone and behavioral issues (headbanging, biting, hitting & pinching herself and others). She is a VERY busy girl and keeps us on our toes.

Her specialist doctors consist of a Developmental Pediatrician, Neurologist, Psychologist, Geneticist, E.N.T., Eye Doctor.

We just say the Psychologist at the Autism Clinic on Friday, He told us that parenting Sophia is like parenting 5 children.

I work at home part time while caring for Sophia. But lately I have been feeling extremely overwhelmed with everything. I feel horrible as I am not able to do everything with her that needs to be done in a days time, like therapy homework and just being able to do family fun things together. My husband works full time outside of the home. So for the most part he comes home and takes over with Sophia so I can get some work done.

I have looked into the program where the state pays a parent to stay home and care for their special needs child, but Early On is telling me that they don't think she is delayed enough for us to qualify. (They are only going off her Speech Delay and they are most likely labeling her as a speech impairment). I would cut back on more hours, but we are not financially stable enough to do so.

Any advice is more than welcome!

Thanks in advanced!

[Gwenn]

Does your state offer respite care? It sounds like you could use some time to yourself, if nothing else. I can imagine how exhausting it must be with so much to do and so many appointments.

I am shocked that they are using the label of speech delay for her, given that she has such a significant medical diagnosis. I would also speak with your doctor's office and ask for some suggestions with how to approach Early On to get the services you need.

[texaschic]

I agree that asking your doctor for suggestions and/or writing an evaluation to give to Early On could help. I hope you get some relief soon!

[manduh_72]

Thank you!!

Michigan does offer the respite care. Although, my Mom is very supportive and can generally take Sophia whenever needed. She is one of a very few that I trust with taking her and understands Sophia's condition.

I am going to talk with her Doctor and see if they have any suggestions!

Thanks again!