and another one bites the dust...

i am a new parent. i haven't done this before.

and, although our two dogs continuously give us a run for our money (literally and figuratively), they didn't really prepare me for this role.

they prepared me to be a good caretaker. to put their needs before mine oftentimes (i gave up on happy hours and after-work dinners over a decade ago after i brought the dogs home). to create a home that was comfortable for them. to exercise them and provide them proper nutrition and medical care.

but they never prepared me to be The Advocate.

i went to lawschool for that. i have practiced law to do that. but, i never understood before now how much i would need to employ those skills in my role as a mother.

.  .  .

because emma has Down syndrome, she qualifies for services provided by the states pursuant to the federal Individuals with Disabilities Education (IDEA) Act of 2004. 

i'll refrain from getting into the details of the Act here. but, i will say that pursuant to the Act, emma qualifies for a host of early intervention therapies to ensure that she is best equipped to thrive, including phsyical therapy, occupational therapy, speech pathology, and special education, among others as needed.* 

this past week, a series of concerns emma's father and i have raised over the past several months resulted in a summit of sorts between us and the director of emma's early intervention program in the county where we live and others on her therapeutic team.

this is not the first time we have had to have a formal meeting with the team. before, though, it was via telephone. 

to date, our advocacy has resulted in the replacement of three of emma's therapists. this isn't because we're picky or they are poor at what they do. it's because there has been a serious disconnect between the implementation of the early intervention program in emma's case and the intent of the law - both federal and state.

that i had to outline the intent of the IDEA Act and corresponding state law, the criteria for eligibility for services, the types of services provided, and our rights as parents in the therapeutic process was disheartening. that it had to come to this after repeated conversations and formal requests for action was exhausting. that it required our leave from work to meet, in addition to the copious amounts of leave we find we must take to attend emma's doctors appointments and therapy sessions, was stressful.

that i had to advocate for my daughter so vociferously, so formally, to get basic needs met in compliance with the law was overwhelming.

and, i am a lawyer.

i think of all of the parents who either don't know the law or don't know their rights to ensure its enforcement. i think of all of the parents who don't have good employers who provide the flexibility to attend such meetings(also in compliance with other, pertinent laws). i think of all of the parents who don't know how to navigate the system to even have such meetings.

outreach and education are fundamental to ensuring that all parents are aware of their rights and are able to exercise them.  whose role that is may be debateable - is it incumbent upon the parents to find out? or is it the responsibility of our federal and state administrations to educate families on these matters? not-for-profit organizations in our communities? all of the above?

there aren't easy answers for this one. but, at the least, we as parents can educate each other- from one parent to another - about what opportunities and rights our children have, special needs or not.

because in the end, if we don't, it is our child who suffers. a child who is dependent upon us to clear the path that lies ahead of her, so that she can advance through life with as few obstacles as possible, as well equiped as possible to tackle the challenges and take advantage of the opportunities.

advocating isn't easy. it's hard and tiring and inherently conflictual sometimes.  but, i am slowly learning that it is one of the most important aspects of being a mother.

whether i like it or not.

*general disclaimer here: nothing in this post (or this site generally) is, nor is intended to be, legal advice upon which you should rely or act. you should contact your attorney to obtain advice on any particluar problem or issue.

1 comment:

  1. "advocating isn't easy. it's hard and tiring and inherently conflictual sometimes." ...and from what I know about it from our neighbor with a Downs Syndrome boy*...never stops. Emma is so fortunate to have parents willing and able to endure the trials (no pun intended!) and indignities bureaucracy presents to her supposed constituents.
    *Leslie, by the way, is 55 years old!