When Something is “Wrong”
I think that all parents have instinctively been given an internal warning system that alerts them when something is off with their child. What happens when your radar system alerts you that something major is not right?
When my oldest child was a baby, I had concerns. I just brushed them off (and so did my doctor) as “first time mom worries”. But, as she got older, and began to hit her milestones significantly later than her peers, my concerns increased. Due to numerous insurance changes, my daughter had seen a number of professionals who had snippets of the story, but not the whole story like I did. When she turned 3, I sat down to evaluate the facts objectively with a friend who had children of her own. It was after that meeting that I decided to begin looking for help for my daughter. Perhaps you are at that point now? Where do you begin and what do you do?
Easter Seals is a great place to start. They have offices in numerous states and locations. But suppose that there isn’t an office in your state? Check your city’s Social Services Department for resources. They may be listed under Mental Health or Mental Retardation or Early Intervention. The staff should be able to help you further.
Once you’ve made contact, you would begin by stating the reasons you are concerned about your child’s development. You may even want to write out a list of milestones and when your child reached that milestone.
An “intake evaluation” will be scheduled. You might meet with a caseworker or social worker to go over your child’s background. For example: was your baby premature, were there health problems during the pregnancy etc. Once the intake interview has been done, your child will be set up for evaluations by a multi-disciplinary team. Some examples of professionals on the team would be: social workers, speech pathologists, occupational therapists and physical therapists. According to law, agencies have 45 days from the time that the evaluation was requested until they do the evaluation unless they meet guidelines for extensions. Once the evaluations are done, the professionals will advise you of the percent delay that your child has and also make other recommendations as far as specialists for your child. An example of this might be seeing an optometrist for a full vision evaluation.
If your child is over 25% delayed in a certain area, the agency will come up with a plan to address those deficits.
Many of the agencies I dealt with also were helpful in dealing with financial concerns such affording therapy and products that your child might need to progress whether it be government assistance or other grants which will be of help.
Depending on the state you live in, your child may be eligible for government medical insurance (medical assistance) if they are disabled or have certain handicaps as either a primary or secondary insurance option. For children who have serious disabilities, you may want to consider SSI (like Social Security, but for disabled children) to assist with out of pocket expenses. Families are eligible for SSI if their children have specified disabilities and if their income and assets are not above a certain level.
It may also be helpful to find support from other parents who have been there. You can find support via the internet, or also through groups in your community. For example, our community has an autistic support group. I belong to a telephone support group for parents with children who have Retinitis Pigmentosa.
As a mom with two handicapped children herself, I know how hard it can be to find the resources you need for your child to succeed and grow. If you are reading this and you need help with the process, please post and I’ll do my best to help you!