I received a call from a parent who needed help not with one, but with two of her special needs children. I had been advocating for her daughter for about a year now but have not been able to make much progress because the school system is not providing a psychoeducational assessment to assess all areas of suspected disabilities. What the school system did was provide her daughter with a 504 Plan (offers accommodations only – not services) and academic testing. Without a comprehensive psychoeducational assessment that includes social, emotional, behavioral, academic and cognitive there is no way to truly find out how the brain is wired. All the answers to what is happening internally with a child are found within the confinement of the brain.
Her daughter is twelve years old and very smart but has to work very hard to do well in her classes. The issue is she struggles tremendously with math, is distracted, has ADHD, needs a note taker, extra time for completion of assignments, allowance for spelling errors, scores are low, does not always complete assignments on time, needs help to prioritize assignments, and does not do well under pressure. Her reading, vocabulary, English, spelling, social studies, and science have low scores when administered the Terra Nova Assessment (academic achievement testing). That is all the school did on her. They did not do a cognitive read or test any other area to assess exactly what is happening with this child.
The Individual Disabilities Education Act (special education law – Federal level) mandates public schools have an affirmative obligation to seek, assess, identify any and all children with suspected disabilities. They must administer a complete and comprehensive psychoeducational assessment. In this case, the public school did the bare minimum. The parents are now trying to obtain an independent evaluation through their insurance. A private evaluation may cost anywhere from $4,500-$5,500+. Imagine coming up with approximately $10,000 to assess two children?
I recently spent several days with this family and did much observation, not only of the daughter but the son. The son is five and a half years old and is extremely hyperactive beyond anything I have seen. I have been advocating for children for over twenty years and this child’s motor just does not stop at all. The parents work very hard to keep up with their son and help their daughter stay on top of her school work. In addition to working hard with their children these parents hold full time jobs, come home from work and have to cook dinner, and sit down with their children to do homework. The mom told me that at times while she is helping her daughter with school work she falls asleep because of how exhausted she is.
When I was speaking on the phone with this mom she asked me these questions “How did you do it? How did you raise your special needs sons? What is your secret?” She went on to tell me her marriage is now being challenged. The school has been calling her and telling her that they have tried everything to address her son’s behaviors at school to no avail. She stated that she stays up with her children every night to help them with their homework and she is drained. Her husband is supportive, but now that they are seeing challenges with their son and do not know what to do. They do not want to go through the same thing they went through fighting the system for their daughter. They still have no resolve for their daughter, and now they have to start the process all over again with their son. I told this mom that her son’s behaviors are stemming from an underlying cause that has not been identified. I recommended her son be assessed so that we can shed some light on exactly what is going on.
I told this mom that, unfortunately, I lost my marriage because I put my children ahead of my husband and I sued the second largest school district in the nation to obtain appropriate placement and services for my own two sons. My case is an extreme case, but nonetheless the issues are the same within the family component. Marriages are always challenged once there is a special needs child in the family. These children require a tremendous amount of attention, love, support and understanding. This family has offered to fly me to Nebraska to help them with their children. I know for a fact that anyone who has a special needs child and is reading this article can connect on many levels.
I told the mom I would fly to Nebraska to assist but without a complete and comprehensive psychoeducational assessment for both children it would not be worth their money. I have offered to find them a credible psychologist in Nebraska where the proper testing can commence. Once we have the results on both children and an Individual Education Plan (IEP) meeting is scheduled I will fly to Nebraska to assist this family. An IEP is where all the supports that addresses the child’s unique needs come into play.
I know firsthand how difficult it is to be a parent, hold a full-time job, tend to house chores, a husband, children, children’s school demands, and the list goes on. Having a special needs child means giving all you have to give, and more than you can give. The sad truth is that we are human and not mechanical. Life throws us curve balls we don’t expect and have to learn what to do with them. It is not easy, and yes, this can be very challenging for both parents. It is sad that when two people divorce or get separated that they tell their circle of friends they grew apart, but did they? Or was it life’s stress factors that causes two people, who once upon a time fell in love and got married to grow apart?
My thoughts are when two people make a commitment to marry and be there for each other through thick and thin, and until death do they part; that means being there for each other and their children no matter how difficult life may be. These children, whether they are special needs or not, are God’s greatest gifts to us. We, the parents, are their foundation and the basis for their future. Our children did not ask to be born… we made them… because we wanted to have a family.
Written by Raja Marhaba