Down Syndrome Awareness – Parenting By Committee (And I Don’t Mean Husband & Wife)

You may have heard I recently volunteered as a Parent-Member of the Committee on Preschool Special Education and Committee on Special Education. That means the school district will call me (or another available volunteer parent-member) to participate in the CPSE/CSE process for other parents of special needs children navigating their way through the district’s special-educational maze. As a parent-member, in theory, I am there to act on behalf of the parents with specific knowledge of the laws governing the distribution of services and without specific emotional entanglement with the child… thereby enabling me to ask questions and think more practically (instead of emotionally)… in theory!

Well, I can tell you, each meeting I’ve attended is highly emotional — even for me, a detached bystander. Being the parent of a child with special needs automatically connects you with every other parent that has a child with special needs… no matter what the diverse nature of the special needs are. As such, I find myself completely understanding of the parents’ plight and drive to get the best services and program in place for their child AND understanding of the Committee’s need to apply appropriate services to help the child in question. It is a weird and occasionally conflicting position to be put in. I hope that I am doing justice to the role and helping parents to achieve the best program available (though the state’s mandate is to put appropriate services in place… not necessarily the “best” program available).

That said, I found myself on the soapbox, giving a bit of a speech to the Committee members at my last meeting… on behalf of the parents seated at the table and for all parents of children with special needs that would sit at this table in the future.

One of the specialized Committee members offered to provide the parents with additional tasks to work on with their child over the summer in the absence of specific services. Mind you, I have requested this specifically from our service providers AND such materials and resources have been offered to me to help with my children’s development in the past. I always accept them happily and use them to foster my children’s development. However, as I explained to the Committee, for the record, parents of children with special needs are invariably working harder — sometimes MUCH harder — with their “special” children than parents of children without special needs and/or with their “typical” children. That’s not to take anything away from parents whose children are “typical” or to demean in any way the difficulties encountered when parenting “typical” children… Rather, I said it to cut a little slack for the parents whose children require more –. more help, more time, more effort, more education — in areas we take for granted when parenting “typical” children. I know. I have a typically developing child in addition to two children with special needs. While it sometimes takes a little additional effort to overcome some of the parenting adventures I encounter with my daughter… these are nothing compared to the day-to-day care, education and parenting of my boys! In both cases, sometimes I need professional help.

Committee members, service providers, state and county representatives: Please do not roll your eyes at me — the parent of a child with special needs — when I seek additional professional help in raising and educating my child. I am already working very hard — literally 24x7x365 — to accommodate my child’s special needs. It is the professional service provider who has helped me get this far… Who has helped me to become a better parent by educating me on how best to help my child develop. I’m not asking for your help so I can take a break, I’m asking for your help so that my child can become all that he was meant to be.

Parents: Remember that the Committee members are tied to state-mandated laws and service levels — your Committee chair can show you these as she did to me when I asked for more than what was deemed appropriate given my sons’ evaluation levels. And, remember that the parent-member is there to help represent you to the Committee and to your school district… to help you secure the most appropriate services available. Committee members are not a barrier to providing you services — though it sometimes feels this way — but rather the conduit by which services are provided.

One of our Early Intervention service providers once said that EI service providers — who provide services in my home — need to remain professionally detached from the family. She said, “it is not personal”! I quickly and adamantly disagreed with this statement. As a parent, there is nothing more personal than inviting others into my home and my life to ask for their help in raising and educating my child… A job that is supposed to be mine but, perhaps, is one that I need help with as I am not totally prepared or knowledgable enough to undertake the special developmental and educational needs of the child I was gifted.

The Committee — and, for that matter, the world — needs to be a bit more understanding of the position we parents of children with special needs are in. I did not ask for my children to have special needs. But, I am embracing the role I now find myself in. I am working hard to grow my children into contributing and viable members of our society. This process is often difficult! No, I can’t just let my infant fall asleep when he’s tired. I have to get him to sleep and wake him up early or keep him awake despite his fatigue in order to accommodate his Early Intervention therapies that are scattered throughout every day of the work week… often into the evenings interfering with dinner and bath schedules (never mind the schedules of my “typical” children). I do not get to choose a preschool for my child based on program, cost, schedule and proximity to home. I have to go to a Committee who decides for me/with me. And, if it doesn’t seem to be working out as I hoped for my child, I don’t get to make the decision to pull my child from that school and enroll them elsewhere, I have to reconvene the Committee to make that decision lest I lose services. A time-consuming process at best. Every decision a parent of a child with special needs makes is made not alone, not just for today, but with a Committee and, to be honest, with every day for the rest of their lives in the back of their mind playing best- and worst-case scenarios for long-term outcomes. Yes, it is harder to raise a child with special needs. It’s more work. But, it can also be incredibly rewarding.

It takes more effort to be successful and meet the same levels of achievement, if/as possible.
Parenting by Committee seems impersonal but it is not. It is VERY personal. As a matter of fact, I can think of nothing more personal in the world than having others help me parent my children! As a parent, and as part of a team, there is tremendous reward as milestones are achieved. But, as a parent, it is also occasionally humiliating and always humbling to be at the mercy of a Committee.

Thoughts for the next time you sit at that table — no matter what your role there….

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About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
This entry was posted in child development, committee for preschool special education, committee for special education, CPSE, CSE, Down Syndrome Advocacy, early intervention, humility, NY State legislation, special needs. Bookmark the permalink.

One Response to Down Syndrome Awareness – Parenting By Committee (And I Don’t Mean Husband & Wife)

  1. Stacy says:

    Very true and VERY well written. I may share this with some who don’t understand exactly what we do endure as parents of special needs children. Maggie, you need to write a book woman. You have such a great way with words, thank you for blogging as you do and thank you for putting the same thoughts I often have into words on your blog, in that, you make me feel like I’m not alone.

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