“…I don’t want to be THAT mother:” Addressing a Common Fear for Parents

It’s the fear that lurks in the minds and hearts of almost every parent of a child with special needs…

“I want my child to get the right support, but I don’t think the school /church/doctor understands what to do. I’ve tried to communicate about it, but I’m not having much success. I disagree with how things are going, and I know I need to say something, but…I don’t want to be THAT mother.”

I hear this phrase uttered on an almost-weekly basis. Parents of children with special needs harbor so many layers of anxiety…worries about finding and securing the right treatments, helping the child make progress, hoping the student will make a friend, praying for inclusion and acceptance. In the process of dealing with all of these worries, and trying to find solutions, parents also fear being labeled as the “THAT” parent…

…the one who is never happy.
                The one that teachers talk about in the staff lounge.
                            The one who is paid lip service…
                                       {and avoided at all costs.}

No one wants to be THAT mother, of course. Instead, parents tell me, they want to be positive, capable, and helpful…but they don’t want to be “pushovers” either. I choose to call this style the Collaborative Mother. (We’re using “mother” for simplicity’s sake, but please don’t feel excluded, dads…this is for you, too!)

So, how do we avoid becoming THAT Mother? We can start by examining our style of communication, and defining what we don’t want to do, and what we hope to accomplish. To do this, let’s compare THAT Mother to the Collaborative Mother:

THAT Mother thinks she always knows better than the school/church; The Collaborative Mother tells the school/church what works at home with her child and considers the input of others.

THAT Mother requires that the school/church change the entire program structure to fit her child’s unique needs (and expresses frustration at any resistance); the Collaborative Mother discusses ways that her child’s needs can be met in the least restrictive environment.

THAT Mother makes demands; the Collaborative Mother makes requests positively and assertively.

THAT Mother has an attitude of entitlement; the Collaborative Mother has an attitude of humility and gratitude.

THAT Mother explodes when mistakes are made; the Collaborative Mother extends grace, and offers to be part of fixing the problem.

THAT Mother assumes that the school/church knows nothing, and is condescending; the Collaborative Mother says, “You may already know this…” or “How can I help you to understand my child better?”

THAT Mother gossips about teachers and volunteers; The Collaborative Mother addresses concerns directly, honestly and kindly. She follows the “chain of command” when seeking to resolve disputes.

THAT Mother says, “You people are going to get this right.” The Collaborative Mother says, “I don’t want to be “THAT Mother.”

THAT Mother doesn’t think she’s “THAT Mother.” The Collaborative mother knows that once in a while, she will be THAT Mother,  because she’s human, and because she makes mistakes, and because her emotions sometimes run high when it comes to her child…

THAT Mother is “never wrong.” Ever. The Collaborative Mother is humble, and willing to say, “I’m sorry.”

THAT Mother loves her child, and she is hurting. The Collaborative Mother loves her child, and she is hurting…but she doesn’t want to hurt others in the process.

THAT Mother is a Child of God. THe Collaborative Mother is a Child of God…and she knows that the teachers and volunteers are, too.

Collaborating with you…
~Katie

Meet My Child! {Proactive Partnering in One Page}

The teacher looked at me with a mixture of frustration, embarrassment and exhaustion.

“So what do you want me to do?”

I tried…oh, how I tried, to be diplomatic. However, my own exhaustion and frustration took over, and I replied tersely, through clenched teeth, “I just want you to follow the IEP. Have you read it?”

He didn’t respond.

I turned and walked directly into the principal’s office. Mercifully, he was available. I sat down and burst into tears. My child had failed a science test, largely because the testing accommodations on the IEP hadn’t been followed. It was a simple break down in communication, but it had caused a “series of unfortunate events,” from my child’s meltdown at home to my unproductive discussion with the science teacher to the principal’s office, where the sympathetic, yet puzzled administrator regarded me, at a loss for what to say.

As I reflected on the situation later, I pondered what went wrong. The science teacher hadn’t been given a copy of my child’s records. It’s easy to see how it could happen. After all, schools are filled with human beings, and mistakes happen. (I also reflected on my own communication with this teacher, and the mistakes I made in that conversation…not my best moment as a mom.)

This experience was one of the first times my child was dealing with multiple teachers, many of whom were not aware of the educational and health needs. Dozens of students in the school received special accommodations; regular education teachers have multiple layers of learning needs to remember and manage. I wondered what I could do to make it easier for those regular education teachers to understand my child, and make their job more manageable.

At the beginning of the following school year, I emailed of the teachers a one-page summary of my child’s strengths and needs. I described her interests, personality and her medical background. Finally, thanked each of them for the part that they would play in her life, and promised that we would do our part to be helpful.

The return emails I received were delightful. One teacher said, “I read all of the kids’ IEPs, but it was so nice to have the really important information right in front of me in my classroom…it helped me so much!”

That year, and every year after, this easy strategy has made all the difference. Taking the perspective of the teachers and trying to meet their needs allowed them to better meet my child’s needs.

This strategy can work well at home, church, and in community activities. Teachers, coaches and church staff can offer this to parents, or parents can take the initiative and offer it to them. Below is a copy of a template we’ve developed to get you started…please note that it is a Word Document, so you can modify and edit it to meet your needs.

Meet My Child!

 You can add a picture of your child, a little clip art, or some color to make it personal. Please share your ideas!

Proactively yours~
Katie

Stay tuned… Tomorrow: Five Facts for Friday; Monday: “Meet ME:” Proactive Partnering with a side of self-advocacy

IEP’s at Church: Yes? No? Maybe So?

I’m a planner.

Anyone who knows me well can attest to this. (In fourth grade, I apparently made a full plan for my birthday party, calculating the time each activity would take and taking into account that guests might arrive at slightly different times…I also made sure that there would be enough time to ensure everyone’s comfort.)

Good teaching takes good planning…I talk about this often during lectures at schools and churches. The Federal Governement thinks planning is a good idea, too. In fact, every student who is identified with a disability that affects learning has a plan called an IEP (Individualied Education Plan). This plan lists the child’s strengths, needs, and current levels of performance. In addition, the plan, formulated by teachers and school staff, includes goals and objectives that create the basis for the child’s school year. Finally, the plan includes all of the supports, accommodations and related services the child needs in order to make appropriate progress toward the identified goals. Every member of the child’s team–including the child, when appropriate–works on this plan, signs it, and helps to monitor the progress.

So, If a student needs an IEP at school, then we should definitely have one at church, right?

A planner like me inwardly, gleefully shouts YES! YES! A PLAN!! Let’s make a PLAN!

We do need a plan…but the way we form a special needs plan–and the kind of plan we form–  really depends on many factors…

It depends on the parents…Some parents are very excited to share their child’s needs with a church staff, and want to collaborate with the team about goals for church. Others just want Sunday to feel “normal” and would like their child, as much as possible, to just blend in with everyone else.

It depends on the church staff and volunteers. Some churches might decide that part of their mission and ministry is to offer as much support as possible to families. We won’t assume that these are “big” churches or churches with large budgets…nor will we assume that churches that provide in-depth, individualized planning or therapeutic supports are “better” than those that don’t. Those assumptions are not grounded in truth. Every church should approach this issue by taking into account a number of factors, such as  the church’s culture, staffing, facilities, vision of the senior staff, and availability of volunteers.

It depends on the child/student. Some students are eager to accept help as they work toward goals…others are just really ready for a day of rest and fun (and that is the purpose of the Sabbath, isn’t it?) And…I haven’t met any teens with disabilities who have told me that they really want to have extra focus on their needs during youth group time…that is a normal and expected part of teen development, and we need to respect it.

It depends on the plan itself. We need to remember that the purpose of a plan at church will most likely be very different from a plan at school, because the purpose of church is different that school or work. I believe that what kids are learning at church is way more important than anything that will be taught at school, so I do recommend that churches and families work together to create a plan for EVERY child’s spiritual growth (not just kids with special needs!) In our ministry, we have created this form to facilitate the process:
GROW Plan for Spiritual Development
This also allows parents, churches and students to develop shared expectations; when we communicate about what our hopes and plans are, we are more likely to develop strong relationships that facilitate growth.

Mostly, it depends on God
. Before we plan anything, we really need to ask God what He thinks about our ministry and where He would like to see it go:  “The counsel of the LORD stands forever, The plans of His heart from generation to generation.” Psalm 33:11 NASB

Will He give you the guidance you’re looking for?
You can plan on it.

~Katie