Return to MUMS Home Page

By Julie Gordon

Director of the MUMS National Parent-To-Parent Network

Did you ever sit down after an exhausting day, look around, see a messy house, dishes piled high, laundry overflowing and wonder what did you do all day? Or worse yet, did your husband come home and ask you that same question? You never took a break sat down and watched TV or read a book, yet you seem to have accomplished nothing all day. Next time you have thought like this, read the following list and check the ones that apply to you. Perhaps you and your husband and children will be more understanding of the added work a child with special needs can be. Perhaps you will be amazed at all you really did accomplish all day!

THINGS TO DO

*Search Internet for information
*Do range of motion exercises
*Do speech therapy exercises
*Make therapy appointments
*Call in prescriptions for medication
*Call for diapers and supplies to be delivered
*Schedule doctor appointments
*Schedule Home Health Care services
*Call physical therapist for physical therapy services
*Call physical therapist about getting new wheelchair
*Call insurance about wheelchair coverage
*Call Medical Assistance about wheelchair coverage
*Pick out wheelchair
*Order new wheelchair
*Make appointments for wheelchair insert fitting
*Make appointment with orthopedic surgeon
*Set up Respite Care
*Interview & Train new Respite provider
*Make transportation arrangements for Respite
*Pack up child’s things for Respite
*Write letter to go with child to Respite
*Call Social Services about reimbursement forms for travel expenses
*Call Social Security Office about income changes
*Call bill collectors about late payments on medical bills
*Call teacher about observing child in classroom
*Observe child at school
*Talk to teacher about Individual Education Program (IEP) changes
*Call school to set up new IEP meeting
*Call advocate to come to IEP meeting
*Meet with advocate
*Call Parent Advocacy group to find out your school rights
*Attend IEP meeting
*Call Special Education Director about unresolved school problems
*Write letter to Department of Public Instruction about unresolved school problems
*Call dentists in town to see who takes Medical Assistance
*Call dentists out of town to see who takes Medical Assistance
*Write letter to legislator about lack of services
*Call hospital about mistake on billing
*Call insurance commissioner about insurance company denials
*Make an appointment to check blood levels
*Schedule another EEG to monitor seizures
*Call school about doctor appointments
*Call bus company not to pick up child on appointment days
*Call baby-sitter for other children for appointments
*Bring child to doctor appointments
*Go for communication evaluation
*Call around to see who pays for computers
*Write letter justifying computer
*Call therapists to write letter about computer
*Teach self & child to use computer
*Set up orthodontics (braces) appointments
*Bring child to have leg braces made
*Bring child to have leg braces adjusted
*Call around looking for a van to buy
*Call everyone to see who can help with van expenses
*Set up Community Options Program Assessment
*Call Family Support Program for help with expenses
*Call and compare prices of van lifts
*Call everyone about help with lift costs
*Write letter justifying lift
*Look at vans and buy one
*Go to Bank for loan for van and fill out forms
*Make an appointment for lift installation
*Bring van for lift installation
*Pick up forms at Social Services
*Go to Social Security for SSI reevaluation
*Go to therapeutic swim class
*Write list of child’s care needs
*Train Home Health Provider
*Pick up prescriptions
*Fill out Katie Becket MA waiver forms
*Fill out Family Support forms
*Fill out Respite Care forms
*Make communication board
*Teach child how to use communication board
*Attend School Board meeting
*Attend support group meetings
*Take child in for blood levels
*Take child for EEG
*Have COP assessment in home
*Meet with Home Health Care nurse
*Pay numerous medical bills
*Research Hyperbaric Oxygen Therapy (HBOT)
*Have fund-raiser
*Second morgage house
*Take child for Hyperbaric Oxygen Therapy (HBOT)
*Write letter or e-mail to MUMS for help!!!!!!!!!

None of these things show at the end of a busy day. All of these things are important and take a lot of time. Some of them you do once in a while and some o a regular basis. Make your own list so you can see for yourself (and those who ask) how your time is spent. Add to this list those thing other parents must do such as: grocery shopping, cooking, volunteering at schools, bringing car in for repairs, cleaning, laundry, etc. If you are a mother working outside the home too---How do you do it???????