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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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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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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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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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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Love

❤️ makes the world go around or that's how the saying goes. I don't know about the world but it certainly is the most central thing in parenting a child. The author, Agatha Christie once said, "A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dates all things and crushes down remorselessly all that stands in its path."

That's especially true when it comes to a mom of a child with learning differences. At least for me, it is hard to explain. It is like nothing else. I show love through hugs, kisses and snuggles just as any mom would for her child. It comes out through comfort and care just like one would expect. 

 

When a child has challenges, a mother's love ❤️ comes out in ways that many would not include in a standard definition. There is a tenacity and fight for this child that can only be fully comprehended by a mom who walks in the same shoes. It is not a fight against anyone but for this child.

I remember reading a bible verse early in my special needs mom's journey. "I will go before you and will level the mountains; I will break down gates of bronze and cut through bars of iron." Isaiah 45:2. This verse was one I clung to in the early years of my son's diagnosis. It was a strong active discription of what I was asking God to do. I wanted the mountains I could not to take on to be crushed. I prayed that God would break down the gates and bars of autism when I had no idea what to do. This wasn't a passive love it was active.

Love called me to learn all I could about autism and strategies to use with my son. Love made me learn through lots of trial and error. Love caused me to keep going no matter how many set backs came. Love caused me to cry when I saw how hard certain things were for my son. Love caused me to make my son do things he didn't want to do. I had help him not to give up. In order to do that, love caused me not to give up.

A mother's love is strong. It is the core. All other qualities will not carry through without love. Love is the most important part of the relationship between a parent and a child.


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Language Supports

Language is a hot topic when talking about a child with learning differences. On this blog, I often discuss the importance of using visual communication to lower the verbal processing a child must do. That is important but the reality of life is a child will need to process verbal language. What are some good strategies to do this?

1. Pair short verbal instructions with a visual.
2. Use a social narrative to explain a process. Prepare it so it can be read over and over again before the child must do something. Always include visuals with it. An example would be making a little picture book for preschool dropoff time. There would be a picture and one sentence of explanation for each element of the routine.
3. Use a power card strategy incorporating a special interest. If a child has trouble excepting his own mistakes and likes movies, use verbal communication and images to tackle this problem. Make up a little card for the child to use with a movie icon that says even movie directors make mistakes and have to press rewind. An adult can refer to this card when the child is getting upset at a mistake.
4. Vocabulary/cue words can be used to help a child generalize behavior from one situation to another. An example would be to teach a child how to be "flexible" when he walks in a room and he can't sit in his favorite chair. Once he is understands what flexible means in this situation and can handle being flexible, generalization can occur. The narrative might sound something like this: "I want you to be flexible by being ok going to Arby's this time. Remember how you are flexible about sitting in a different chair at dinner. I know you can be flexible with going to eat at Arby's this time."


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