If you have found yourself in a situation where there is a child with special needs in your life, it is important to have realistic expectations and recognize that there is indeed a large difference between raising 'typical' children vs. raising children with special needs. The stresses and burdens are not only greater, but can also be costly, and for the family it is often a new way of life. As a result, parents of special needs children should be aware of and understand how to cope with these particular concerns, whether they are emotional, relational, or financial in nature - and know that there is help available when it is needed. Of course, children with disabilities are no less special or less important than their counterparts. They are no less loved, and it is our jobs as parents and particularly fathers to give these children the attention and guidance they deserve and need. However, we are doing ourselves and our children a disservice if we do not acknowledge the added stresses and burdens that can be brought on when these children become a part of our life.
The more obvious burden is generally the economic burden. Whether a child has physical limitations that require specific equipment such as a walker or a wheelchair, or their needs require direct nursing and supervision, these are often costly and can be prohibitively expensive. There are ways to mitigate the new financial burdens through changes in lifestyle but if the child has needs beyond the scope of the family finances there are places to turn for help and support.
Arguably the greatest stress is the relational changes that take place in a household with a child of special needs. Depending on the disability and its degree of complexity, there are likely to be significant changes in the home. Other children in the home can be profoundly affected. They may not have the same freedoms as they did before their sibling arrived or the same freedoms as their peers. The other children may find themselves feeling ignored and not a priority. They could become depressed as a result and suffer in their schoolwork. In my home this was a significant problem initially in the first couple of years. However with help from guidance counselors and a direct focus on the issue, the effect became much milder as the older 'typical' child came to understand our new reality and his role in our adjusted family system. In his maturation he has begun to learn the scope of his responsibility.
One hidden cost is the time that a parent takes away from work or any existing social life. There are occasions when a parent may be unable to work in order to provide the necessary services a child may need and this 'hidden' cost can include the loss of a career. I have met more than a few fathers that became stay at home dads and primary care-givers to their special needs children when they realized there wasn't much of an option. Often-times isolation is the result. Isolation is easy to feel in a society where gender-based roles are still the stereo-type. Dads just don't generally fit in with the regular 'mommy and me 'groups and instead typically stay in the 'cave'.
But there is more than the apparent and profound social impact for the parents and that impact on social life can also include the intra-marital relationships between spouses. Whether there are jealousies, a lack of communication or just general friction, the couples must come to terms with the stresses or the relationship could be damaged. In cases where couples do communicate and work together their bonds can actually strengthen by the necessity of a common goal.
So where is the first place one could look for help and assistance? My first answer is your personal support system of family, friends and Church. But many times we don't have those outlets available or those resources might be ill-equipped for the task. There are other options.
One place to start would be your Community Services Board. A community Services Board is an entry point into the publicly-funded services for mental health, intellectual disability as well as substance abuse. There are a number of affiliated programs that can offer a variety of family services. Additionally there are specific programs of assistance including Medicaid Waivers which may be available for a qualifying child to receive the services they require regardless of the family income. See my article regarding Medicaid Waivers for more specific information. Those services could be medical equipment, transportation, respite care, OT, Speech or other therapies. In most communities and jurisdictions the Department of Social Services is a direct component of the Community Services Board. They can be very valuable in your search for services, and work on the behalf of all children regardless of the life challenges they face.
We change our jobs; change our habits; change our manner of dress; change our goals; change our expectations of life; change our dreams; change our relationships; and change our way of thinking when we have a child with special needs...it will change the family.
What have you found to be of service in your search to provide the best for your Special Needs Kid? Any ideas, or suggestions to add? As always, thanks for reading...
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