Sunday, April 30, 2017

Mother as Advocate

This week leads up to Mother's Day. The posts this week will center in on the roles that a mom plays in the life of a child with learning differences. Today let's talk about mom as Advocate. 
 

As a mom, I advocate almost everyday. My son is away at college so it is the least I've ever done. It might be talking him though something that heightens his anxiety. It might be an email to the autism program graduate assistant. In fact I just got off the phone with her and my son. We were problem solving various ways of handling three final exams on one day. Advocating looks different these days. Many times I advocate while including my son as a way of modeling things he needs to do himself.

As a mom, you advocate at least once a day with the school, a dance teacher or a child care provider. More likely, you may advocate at least once an hour. It is tiring, demanding and often overwhelming. Advocating takes tremendous patience, gentleness while being assertive and strong diplomatic skills. Perseverance is absolutely essential. I'm not telling you anything you don't know. Advocating is one of the most difficult and important roles you play.

This is a week of celebrating mothers. Today, I want to tell you that the advocating you are doing makes an enormous difference. You are helping your child to have environments that are best. Your advocating is teaching others what this child needs. It is a way that your child will progress...one step at a time.

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Wednesday, April 26, 2017

Mom, Do You Need Some Incentives?

Many of our children who receive special education services complete inventories about what motivates him/her. This is how the teacher gets your child to do hard or non preferred tasks. I remember telling myself as a college student that when I finish this chapter I will go and get a Coke. I was rewarding myself for getting through tedious information.

Let me ask you a question. What are the things that motivate you? I know, you have too much to do parenting, taking care of your home and a slew of others things to worry about motivation. I lived in that world for a lot of years. The thing I found was I worked all the time but never At a very strong pace. I slowed down because there was no real reason to speed up. I could of gotten more done but never enough to feel like I could take a break. Since I never "rewarded" myself, I accomplished even less and a vicious circle had been placed in motion. 

 

If you are going to fare well in the special needs parenting race, you need to find some ways in to energize yourself. It takes good strategies to run a full marathon. That is what is necessary in parenting, especially with children diagnosed with learning differences. A sprint will zap your energy and you won't be able to finish the race. No one wins when that happens.

This might look different for you than it does for me. It might be doing something alone like a trip to Target without the kids. Another person may need to take some creative thing on Pinterest and find a way to accomplish it. A girlfriend Starbucks outing might be another choice. If you recharge by Intellectual pursuits, it might be time to plan a trip to the library or take a class. It might be a variety of things. I can remember organizing spices and staples into Tupperware. I have done cooking days making a month of meals. I spent time at Panera reading books.

Find an incentive that can keep you going on the long road of your daily ups and downs of special needs parenting. Once you figure out what it is, work hard at implementing it into your life!


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Tuesday, April 25, 2017

Organizing Your Child's Paperwork

Creating order with all the documentation that a child diagnosed with a disability can make life so much better. It is important to be able to retrieve not just information but official documentation when it's needed. This is a huge task if you have been stuffing things is some type of container. You have thought, "I know I have it somewhere!" But where! I have had mothers say I have no idea of where to start. I heard something many years ago that has really stick. "Start with the first thing." Let's look at some basic organizing principles that might apply. 

 


1. Be ready to put the most important documents somewhere. I like to use a portable file drawer with folders. I have used hanging file folders labeled with categories placed in the file. I put folders of specific things within the categories in each hanging folder. Start simple. As you sort, you can assign specific things to a file folder within each category.

2. Begin sorting through your paperwork. There should be three basic piles accumulated. The throw away pile. If you don't need it, pitch it. If you are a little unsure if you will need it in the future, put it in a "I'll save for now" pile. If it's important to save, put it in a file folder in the file box.

3. Continue this process until you get through all the scores of paperwork you have. If your save for now paperwork is large then you may need to come back in a few months and go through it again and purge some more. It helps me release it fully if I save it for a while.

4. Store the "save for now" paperwork in some file folders/accordion folder within some basic categories. It need not be as specific as the information you put in the file box. Honestly, much of these things will eventually be pitched.

Once your file box has been organized, it will be amazing how little paperwork you still have. The majority of the paperwork will go in the trash. Now, it will be much easier to find the documents that you need!


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Sunday, April 23, 2017

What is a Parent Advocate's Role?

As you think of employing a parent Advocate, questions might come into your mind. I have head a variety of questions over the last few years here are some examples.

I don't really know what I want or need. I just know what is happening at school isn't the right suggestion. What would you suggest?

I would like someone to be our liaison to the school, can you do that?

We need someone who can push the school to give our child what the law entitles him. Can you help with that?

Here is the IEP. Can you help me understand it? If it's not what he needs, can you help?



These are just a few questions a parent might ask a potential parent advocate. There is not a set role that an advocate must have. It's a role of expertise in what is needed, special education law and advocating skills to navigate change in the IEP process. As a parent, share concerns, current state of the child and her school experience and what services are desired. If more input is desired , ask the advocate how the structure of the services might look. There may be services she does not provide. For example, some advocates observe in schools and some do not. It is also important to determine if s/he is the "right" person for the job. Much like a child must connect with a therapist for progress to be made, a parent and parent Advocate work closely together and need to "click." If the parent advocate has an agenda different than yours, she's probably not the right person. The parent advocate should support the parent's wishes and desires. The advocate who has her own agenda is not a good choice.

A parent Advocate who not only understands the child but also his parents, is a huge asset. The parent is always the one who needs to have the final say in any decision that affects the child even though it may be said that all services are an IEP team decision. If a parent is not comfortable with the direction the IEP team is going, the parent should not agree to it. A good parent advocate can really be an asset in those sticky situations!




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Monday, April 17, 2017

Qualities of a Parent Advocate

What makes a good parent advocate? There are several qualities that are important when looking for this person. They may be different than what you may of first thought. 



1. Find someone that understands the special needs life. I remember someone that had a several academic degrees and experience in special education asked why someone would hire me. She didn't understand that parents are looking for a person who understand the 24-7-365 reality of being a caretaker of a child with learning differences. I answered, "because I go home at night to a child with learning differences."
2. If you hire a parent, find out how his/her child is doing? Has this person been an effective advocate for his/her child?
3. Does the advocate have an agenda or does S/he support and desire to help you meet YOUR goals for the child?
4. Does the parent Advocate have a calm demeanor but at the same time know how be a strong advocate? Leadership and relational skills are not a match with every parent advocate.
5. Skills, knowledge and experience in the advocating process. Some areas to look for: special education law knowledge, curriculum choices, understanding of strategies, therapies and school personnel.

I would love to hear other qualities that you have found to be helpful in a parent Advocate.







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Wednesday, April 5, 2017

It's All About the One That's Loved

This month, I see a lot of posts to express the fact it is autism awareness month. I know there are tons of disabilities with awareness days and months but autism is the one in my life. It affects me as a mom of a young man who was diagnosed on the spectrum just about 14 years ago. I have spent many days praying for him, learning strategies and attempting to use those strategies to help him. I've cried many tears on his behalf. I've tried lots of things. Some have worked, some have not. He has made some amazing progress through the years. I'm not finished. I am learning new ways to help him develop his own abilities. 

 

Interestingly, I have made many mom friends who walk a similar path. Our children have different needs. As mothers, we have different passions. Some love one autism organization and another mom doesn't want anything to do with that group. As with anything else in life, opinions differ on views of autism. There is definitely a"spectrum" of thoughts regarding this diagnosis by parents.

Some parents are politically involved. Others organize fund raisers. Still others start support groups for parents. My passion is working with children who have autism and helping families develop a lifestyle that helps them progress. I believe the day-in day-out life of a family affected by autism is a key to progress.

I have to admit, I don't get involved in some of the controversial discussions that are appearing online this month. I have found that I have to concentrate on my passion and calling in autism. Others may have different interests as an autism parent. I have a strong conviction that my calling is not anyone else's. It is important that I give other autism moms the freedom to pursue their passion and calling. No one needs to be me and I don't have to do things just like someone else. This is true in all of life. It is also true in the world of being a disability mom. Allow yourself the freedom to be yourself while doing the same for your friends.


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Monday, April 3, 2017

Finding a Parent Advocate?

Where do you find this person that helps a family advocate for their child? There are lots of places to look. There are online resources, special education lawyers and advocacy groups that have formal listings. I have to admit, none of my advocacy clients found me this way.


I depend on a more organic approach. I connect regularly with mental health professional, Occupational therapist and speech and language professionals. Many of these people recommend me to parents. Ask the professionals on your team for advocate referrals.

The best way to find a parent Advocate is through another parent. Honestly, other parents are normally the best way to find any kind of resource for your child. These days, I gain almost all my clients this way. Parents recommendations can come via message boards, conversations in therapy waiting rooms, at support group meetings and over coffee with a friend. In the last several months, new clients have come through most of the ways listed. I believe parents that network find the most effective services. Parents have a tenacity to look in both traditional and less traditional ways to find what is needed to help a child progress.

I would love to hear how you find advocacy resources.




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