(cont'd)
Understand that any and every piece of medical equipment, adaptation, etc. must, must be properly taking care of during home use if this applies. Adaptations, etc. are expensive and the disability community is very sensitive about broken equipment, dirty equipment, etc. due to improper use, care, neglect. Again, it could lead to a child abuse/neglect charge. The reason is because the child needs the equipment to have a quality of life, learn, and otherwise be healthy and safe. Thus, trust the occupational therapist or physical therapist if you receive a call that equipment needs to be replaced. School systems are not, NOT responsible for providing special equipment as a rule. However, be humble when they do. Smile.
Advocate for your child through your Service Coordinator whenever Medicare or Medical Assistance will not pay for necessary equipment. (i.e., equipment can only be replaced every three years, repairs are ongoing expenses, there are funding resource organizations your Service Coordinator can tap into, etc.). The child's needs always, always come first!
Likewise, the one-on-one nurse, school, school bus driver, etc. must, must take equally good care of all adaptations, equipment, etc. or it could lead to legal consequences (replacement).
Understand that if the wheelchair is not working properly, it cannot be transported on the bus. If your child uses a wheelchair, he or she should be in that wheelchair for the entire bus ride and properly secured. Do NOT use the bus driver to send "things" to school for your child. If you parent a child who uses a wheelchair, there are thousands of online resources, vendors, etc. For example: visit:
http://www.wheelchairnet.org/WCN_Living/pa... Have a back-up plan for getting your child home if he or she uses a wheelchair and the weather, illness, bus breaks down, etc. and your child cannot ride the normal school bus home. Identify your area's mobility transit company, taxi cab service, relative/friend and have the contact information handy. Many times, you can leave written instructions with the school and, of course, it can go in the IEP if you wish.
ALL adaptations should be in a secure and durable carrying bag of your choice and clearly marked with your child's name, phone number, etc. Children with disabilities have self-esteem. They have dignity. They are people with unique abilities.
These are the basics for a successful IEP experience. It only seems overwhelming when you have never done it before. Buddy up with other parents of special needs children and share information. You will be more successful through networking with other parents just like with "normal" children.
Respite
This is a chance for the parent, family, siblings, and special needs child to take a break away from the day-to-day routine. There are many ways to have respite (i.e, weekends, summer, holidays, etc.). Be as creative as possible and avoid feeling guilty. Write it into your annual Plan of Care with your Service Coordinator who can tap into many resource organizations (i.e., special camps, overnight care, etc.) as well. In addition, take advantage of help from family and friends whenever you can. Respite leads to peace of mind, too.
Alright, I don't typically do this, but here goes: Y'all know I helped write the Family Medical Leave Act under former President Clinton along with other parents of special needs children. I helped write the Individual Education Act (IDEA) in 1994/97 under former President Clinton. I used to have all 2,000 pages memorized, but don't anymore (LOL). I helped with the early days of Parent Resource Center in Maryland during this time. My boast, of course, is in the Lord. Although things have changed over the years with amendments/republicans, the basics still stand strong. The most important part of parenting a special needs child is staying involved and humility. The same thing applies about normal children, too. Smile. The peace is that through a close relationship with God, your mind will be transformed. God will always be there to show you the way. He speaks through others who pioneered the way. God intended for all of us to live in the Kingdom for ever and ever accepting uniqueness. This is why community involvement is important for the special needs child. The should not be hidden, judged, or hindered.
ANY parent will reap what is sowed and we give God all the glory! amen? Amen!
(cont'd)
Posted By: agnes levine
Monday, September 19th 2011 at 1:03PM
You can also
click
here to view all posts by this author...
