I have had the pleasure to know mothers and fathers of special needs children who have created their own schools or their own curriculums so their children could learn life skills and social skills, two of the key building blocks for independence, for two main reasons; first many schools are not including it their programs and secondly, to help other parents on their journey to prepare their child for real life.
BUT: I have also had the not so wonderful experience watching parents drop off their son or daughter at the front door of the classroom or waving,” have a great day” as the yellow bus pulls out of the drive way and expect the school team to prepare their child for real life.
The parents promise, at the IEP meeting, they will have their son or daughter start doing chores, prepare his/her lunch, help out in the kitchen during meal preparation or clean up or begin learning all key grooming skills. I have witnessed parents shaking their head “yes” to the teacher who pleads with them to start now expecting their son or daughter to do their laundry, make their bed, change their sheets, help with the grocery shopping or even help dad in the back and front yard.
BUT they never execute.
I understand that cultural beliefs and values, the lack of time, wanting to avoid confrontation and/ or accepting imperfection may get in the way of parents ever starting, but it is NOT the whole responsibility of the school to their child for his or her life. It is the family’s responsibility and the school team is only a partner for a specific period of time in their child’s life.
So what can be done to help a parent before it is too late and their son or daughter continues to need one on one support to complete daily living skills long after the school team has said good-bye on graduation day.
- Our developmental pediatricians need to stress that children with special needs need to participate in their own care early, inform them
- Parent Networks can provide workshops on teaching independent living skills instead of who to write an IEP goal year after year after year, connect the family to them
- Early discussions must occur with the parent and education team starting in elementary school and continuing throughout middle school and high school, keeping in mind that all the reading, writing and math skills they can learn will not be enough if they cannot dress themselves, shop, cook, deal with their hygiene needs, access the community safely, problem solve household issues and transportation issues and understand how to budget and manage their funds.
- Teachers need to propose self-help and skills of daily living goals each and every year. The Brigance Inventory of Development is a great tool to identify independent living goals
- Teachers can also use the SEACO (Special Education County Offices Curriculum Guide) for establishing goals
- Teachers should create weekly activities which provide opportunities for students to practice independent activities (snack prep, bathroom skills, lunch prep, classroom jobs, cleanup activities, hand washing, tooth brushing and personal belonging management, as well as zipping, snapping, buttoning)
- The Occupational Therapist can create goals which address the long term independence of the student with special needs
- The Addendum in the IEP should identify home goals and design a way to monitor progress of the family in implementing their independent living goals
- The family and IEP team should hold discussions on cultural expectations and find out if any beliefs, customs or family roles are holding the family back from expecting and teaching skills. A plan to address these cultural differences would be put in place to help the family realize the importance of teaching and expecting. Parents might need to know that they are “still good parents” if they STOP doing for their son or daughter but instead teach him to do for himself.
- Some families may need counseling to work through guilt, depression or to learn to accept or prioritize in their life with a special needs child
- Those families who have hired in-home help for their child will need to check if the care provider is doing everything for their son or daughter instead of facilitating independence. The care taker role needs to change to a care teacher role. Parents should find ways to provide their in home help with training (send them to workshops, lectures, seminars to learn). Send them to their student’s school program to observe educational sessions, speech sessions and occupational therapy sessions. Hire someone to train them on strategies to teach skills of daily living if you can’t.
Some families will just require a “kick in the pants” and start adjusting their own personal agenda in order to meet the needs of their special needs child. Their life is now different. A special needs child cannot be dropped off at the school entrance and find his/her way like to all of the educational opportunities.
When a family has the intelligence and the means it is time to step up and become an equal partner. The earlier they join the team and learn to accept that they too have to become teachers, the better the outcome for the student and the family. The sooner they realize their student needs to learn in their own home not just at school the better the results.
When I decided to have children, I remember thinking, this is a HUGE responsibility and my needs will have to take a back seat. Then with each of my 3 sons’ births I realized that their health, their education and their social life would now take precedent over my own and I would have to find a way to adjust.
I can only assume that this same type of thinking must go on with most families that decide to bring children into this world and if it does then expectations are even greater when they learn their child has developmental learning challenges.
As a parent I too had the responsibility to ensure that my children’s health, education and preparation for real life had to be addressed by me. I knew I could not expect anyone else to assume this responsibility.
So, I urge parents of special needs children to find ways to forgive themselves if they are holding themselves responsible for their child’s challenges. I plead with parents to find a way to let go of pre-conceived ideas such as:
- My child will never learn_____ or it is too early to teach_____
- My child can’t do______, My child wont’ do _____
- I don’t have time to do____
- This is the school’s responsibly
- The speech therapist, the occupational therapist, the physical therapist and the teacher will take care of these problems
- I can’t learn how to help my son/daughter
I ask that parents develop an attitude of “possibility thinking”. There are families who have prepared their special needs child, Connect to them
Teachers want to offer help, Reach Out to Them
There are agencies and private consultants who can teach you to accept and learn how to teach, Call them
There are manuals and curriculums available to show you ways to teach life skills, Buy them, Read them and choose one activity a month to try
There are conferences, workshops, lectures, seminars, video web sites and on line teaching modules, Click on them, experience them
The longer you wait, the more dependent the child becomes, the more resistance to changing their habits and the greater the chance their adult lives will be reduced, restricted and limited in the areas of living options, working options and recreation options.
Stop resisting steps to ensure independence, reach out, call, attend, connect or just CLICK….. Get out of your own way and make independence more possible for your son or daughter with special needs.
