To Be The Best Caregiver I Can Be

November is National Family Caregivers Month. My fifteen-year-old son Tate has autism and my youngest daughter has special needs as well. Currently, I am also helping to care for my elderly parents. I was asked to write a post about being a caregiver. I took a stab at it and read it back to myself. I had written an essay that sounded like I was having a pity party about the all the time my kids’ disabilities have stolen from me. So, I tried again. The second attempt was an essay comparing the amount of time and energy I spent raising my typically developing children to the amount of time and energy it is taking to raise my special needs children. It really did not reflect the way I feel about being a caregiver at all. My third attempt was also sent to the trash bin.

It occurred to me then: I had been trying to write about the hardships of being a caregiver. There is no doubt it is hard. Everyone knows that. But what good caregiver dwells on all the negatives involved? Did my own parents keep track of all the times I woke them at night? Or vomited in my bed? Did they begrudge the money they spent on my education? Of course not. Good parents are not keeping score of all the difficulties they have with their child, or the sacrifices they make.

A good caregiver is a good one because he does the things he needs to do willingly. So I made a list. I made a list of the things that help me to be the best caregiver I can be in hopes that it might encourage others to be the best caregiver they can be.  

1 Laugh. I laugh when things are funny, and they often are. There have been times I have laughed to keep from crying. Remember to laugh. A sense of humor can make all the difference.

2 Smile. It’s hard not to be happy when I have a smile on my face, and it is hard to become angry or be unkind when I am smiling. A smile can totally change another person's response too. 

3 Sing. Just like smiling, it is so hard to be anything but happy when I am singing. Music is such a valuable tool. 

4 Cry. If laughing, smiling, and singing are not going to work today, a good cry might. But if you find yourself crying often and unable to cope, talk to a professional. 

5 Share. Find someone who will listen. Online support groups can be helpful when no one is physically close. I blog and have built my own sort of support group of followers who help me far more than I help them. 

6 Find a cheerleader. I have many cheerleaders. Some of them are part of my physical family and some are part of my church family. Some are online friends. Do not go to discouragers for advice or for cheering up. Do not go to the support groups that mostly talk about the hardships and the negatives when you are in need of encouragement. Surround yourself with positive people. 

7 Set goals, but set reasonable ones. It is helpful to have short-term goals. Some of my goals are very small and easily achieved in a day's time, while others might take a few days. It might even help to write goals down and be able to cross them off as they are completed.

8 Prepare yourself. It is much easier to prevent problems before they develop, than to fix them after they occur. I try to anticipate the things that might go wrong, and put a plan in place for the “just in cases”. When it is time for appointments or meetings, go prepared. Make and take a list of questions and concerns.

9 Control yourself. I cannot control others, but I can control myself and how I react to others. Remember that you are responsible for you.  Do not make matters worse by speaking in anger, or saying something you may later regret. There will be times when those around you who you had hoped would help, will not. There may be times when you feel resentful, if not because your child is disabled or your elderly parents are sick, then because the ones you thought you could count on to help, do not. But the kids still have to be fed, the sick still need to be looked after, and the trash still needs hauled out to the curb. It is up to you. You cannot control those around you, but you can control yourself.

10 Dismiss yourself. Sometimes I need a few minutes to regroup. When everything around you seems to be falling apart, take a deep breath, count to ten, say a prayer, bite your tongue, or walk away.

11 Forgive yourself. I make mistakes. I make a huge mess of things sometimes, and you will too. Nobody is perfect.  ♫ Let it go. Let it go. ♫  

12 Do not lie to yourself. Face your truths. Dwelling on the things you wish you could change will only make you miserable. Also, pretending problems are not really there does not work. Roll up your sleeves and do what you can to make things better. The grass is not really greener next door. That neighbor or friend who seems to have the perfect life with the perfect kids and a pocket full of money, has his own struggles too. 

13 Reward yourself. Whether it is something small like a soda, or something more substantial like a night out, I find that it helps if I have something tangible to look forward to at the end of the day or at the end of the week. 

I'm not an expert. I have made plenty of mistakes, but these are the things that help me to do what I do best. Perhaps these things could help you to be the best caregiver you can be too. 

Writing this has helped me to remember that being a caregiver is a privilege and a worthwhile and fulfilling job.

If you liked this post, you might also like this one...  Stepping Up To The Challenge

An IEP Tutorial: 13 Tips

The Individualized Education Program (IEP) process can be daunting. I was very intimidated those first few years. I have been in some very tense meetings with less than desirable outcomes and I have been in some very relaxed meetings where everyone left with smiles. I have learned a lot and no longer feel sick before I go to those meetings these days. I have some words of wisdom for you if you are still struggling with anxiety before you go to those awful IEP meetings. Following are my tips. The first few are pretty basic and you’ve probably heard some of these before. But the bottom half of the list are things that are a little more unique I think. Hopefully, you can learn from my experiences and some of my mistakes and successes.

1. This is very important: Never go alone. Hire an advocate long before the first IEP meeting so that the advocate has time to get to know your child and his/her needs and the two of you have time to go over goals. I was so lucky because my son had a Board Certified Behavior Analyst working with him. She knew him very well and has come to almost every IEP meeting since he was five. There were many times when I did not know what to ask for or did not understand some of the jargon but our advocate did and my son has benefitted greatly from her expertise. If you absolutely cannot afford an advocate then find SOMEONE (even another parent who has already been through the IEP process and has some experience) to go with you so you and your spouse are not alone. An advocate can be intimidating (without being scary) and can make a lot of difference in how the IEP looks at the end of the meeting.

Tate with Dad's glasses and laptop

2. Educate yourself about the IEP process. Before you go to your first IEP meeting read a book about the process and your rights. I recommend the Wright’s Law books. This is doubly important to the parent who does not bring an advocate with them.

3. Be on time. It looks pretty bad when mom and dad walk in late. I usually try to be early. Because, in our first IEP experiences, meetings sometimes started late (due to missing equipment or people) and I had complained, I did not want to be the one who caused our meeting to be delayed. One time I actually had to rearrange furniture for a meeting; then wipe glue and glitter off the table we were to use before our meeting could begin. Every minute of the meeting is valuable. Sometimes substitute teachers have been hired so your kid’s teacher can be there.  

4. Do NOT let anyone rush the IEP process. If enough time was not allotted for the meeting then you can ask for another meeting. You have the right to call an IEP meeting yourself anytime you want one. Put your request in writing though because if it is not in writing then it never happened. My kids’ schools used to schedule one hour for our meeting, ninety minutes if I was lucky. We never got finished in that amount of time. Apparently, some IEP meetings only require one hour but teachers have told me some parents go into the meetings accepting what they are offered and giving little or no input. Don’t be that parent. You need enough time to ask questions, get the answers, and help plan the IEP. You know your child better than the teachers do.  

5. You may be hoping for the best but you need to prepare for the worst. Take off your rose-colored glasses but don’t wear your boxing gloves into the meeting either. Keep them hidden just in case you need them but don’t go in ready for a fight. Sometimes things go bad quickly and unexpectedly. My son started at a small rural school where I knew almost every teacher and staff member very well and considered most my friends. I never dreamed we would have any problems coming to an agreement over what my son’s IEP should entail. I was wrong. It only takes one person on the IEP team sometimes to stand in the way of progress. Your goal is not to intimidate anyone so behave humbly and keep a smile on your face if at all possible. Be friendly. Be nice. Be sweet. Be kind. Set a dish of chocolate in the center of the table. Compliment everyone. THEN if you cannot catch your flies with sugar, bring out the vinegar.

6. Go into the meeting with a list of goals you would like to see on your child’s IEP. The school representative will be bringing their own list of goals, and probably even a rough draft of what they want the IEP to look like. The Office of Special Education Programs (OSEP), which is part of the Department of Education, discourages schools from bringing draft IEPs into the IEP meeting but IDEA is silent on this. Coming up with a draft IEP before involving parents is mind boggling to me but it is common practice. You can find sample goals online or in the Wright’s Law books. And… IDEA does not limit the number of goals an IEP can have. I once took ten or twelve tentative goals to an IEP meeting and was told that the school typically only allowed three goals on an IEP. Don’t believe it folks. Your child is there to make progress. Set your expectations high.

7. Have your questions written down and take them with you. You don’t want to walk out of there and later remember all the things you did not talk about. It is important to ask things like, “How much and what kind of training will the para professionals have?” IDEA says that para professionals are to have ongoing education throughout the year. Sometimes that does not happen. Ask about lunch and recess. Ask who will have access to your child’s IEP. Privacy laws are strict and your child’s diagnosis or IEP may not be shared with all the people who work with your child. Initially, my child’s diagnosis and IEP were not shared with substitute teachers or specials (Music, PE, Art, Library) teachers. That was unacceptable. My son needed accommodations and modifications for many activities. He also needed help during fire drills, tornado drills… Protecting a child’s privacy at the expense of keeping them safe and educating them is ridiculous in my mind. Now we have to put it in the IEP that everyone is to be told. I actually try to make sure that even the janitors, secretary, the cafeteria staff, and bus drivers are told about my children’s disabilities. If it really “takes a village” then the villagers ought to be given a clue about their little charges.

8. Remember that the I in IEP stands for Individual. There may be very specific anxieties or behaviors that are unique to your child that should be addressed in the IEP. If your child does not communicate well then you need to ask for insist on a note coming home every afternoon telling about his/her day and answering some routine questions about their behaviors… If your child has dietary needs then those should be listed in the IEP… Social skills training might need to be a part of the IEP. Don’t let the school push you into signing a standard IEP with goals recycled from the last student who had a similar disability.

9. Take notes during the meeting or bring someone with you to take notes. Do not rely solely on the notes taken by the staff. I once got my son’s IEP in the mail and was blown away. It looked nothing like the IEP we had discussed and I had the notes to prove it. The school note taker will probably ask you to sign their notes. Don’t be afraid to ask them to sign yours as well. You might even want to exchange copies of notes before you leave the building.

10. Usually we accentuate the positives but not today. The IEP meeting is not the best time to boast about your child’s strengths and progress. The child’s strengths are mentioned on the IEP and that is enough. The IEP meeting is a time to examine your child’s weaknesses under a microscope and try to collaborate on how to help him/her make progress. Do not minimize your child’s sensory needs, behavioral issues, physical disability, social skills deficits, or academic limitations. The school psychologist and the others on the team may come prepared to talk up the progress and give your child a very limited amount of services. Don’t get caught in that trap.

11. You cannot make it about the money. The school may try to make it about the expense of the services your child needs but the law says that your child is to receive an “appropriate education.” Parents sometimes hear, “We don’t have that available” or “There is only one O.T. in our district and she has to serve the needs of all the kids that need O.T.” Here’s the thing: If a hundred kids need occupational therapy (for example) and the occupational therapist is spread too thin then the district SHOULD hire another O.T. but instead they often suddenly decide to graduate a bunch of kids right out of their occupational therapy sessions. It all boils down to money. Don't let your kid be the one that is pushed out of services they need. 

Science Experiment, Tate was in 3rd grade

12. Don’t be pressured or tricked into doing something you do not want to do. A lot of these educators have been doing this a long time. Most are honest and want what is best for your child. Some are not. I learned early on that when I heard the words, "promoting independence" or "facilitating independence" come from someone on the IEP team it meant that I was about to be told that they wanted to pull support for an activity or a class that my child currently had support for. Facilitating independence; Yeah, right. Call it what you want. It still meant my kid was going to be without support and floundering on his own. If you are surprised to hear that your child suddenly seems to make enough progress so he will lose para support for an hour, it could be that the school is struggling to find enough paras or the money to hire them. Make sure you do not agree to “facilitate independence” unless you are sure your child is ready for that. BEFORE you sign off on it, go and observe. Send your advocate to observe. Learn from one of the biggest mistakes I made early on in this game... No matter how many times you hear, “We can always add the support back in,” know this: you will have to fight tooth and nail to get back anything you let them take away. AND, you may not succeed. The goal for all of us is independence but don’t ask a fish to climb a tree! Some kids will achieve independence and some won’t. Asking a kid who is not ready or able to do the things they cannot do is cruel. If you feel pressured to sign something or make an amendment to the IEP, tell them you need a couple of days to think about it.

13. The squeaky wheel gets the grease. I hear it all the time. Other parents have asked me why my kid has more services than their kid or how I was able to get full support for my son. I first point to the advocate we have (Tip #1). Then I tell them that they have to make a lot of noise. For four long years I wrote complaint letters, sat in the principal’s office, made phone calls, took notes, and made a lot of noise. I also gave gifts, sent cards, volunteered in classrooms, bought school supplies and other things the school needed, and was very visible at the school. I can hardly believe it but some parents meekly take the services the school offer and ask for nothing more. They do not get involved or ask questions. I suppose that there are some wonderful schools out there where all the staff does what is best for all the special needs students. ?? I love my kids’ schools. I love my kids’ teachers. I love my kids’ therapists. I am happy with my kids’ IEPs and the services they are receiving currently. It took a long time and a lot of noise to get here.

If you enjoyed this post, you might also like 15 Truths of Parenting Special Needs Kids. 

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Dumb? Lazy? I Think Not.

As the whole family celebrated a college graduation at Freed Hardeman University this weekend, I was reminded of some of the things that Tate and Sydney will not be able to accomplish. At a reception for the graduates, I spoke briefly with the college president. I told him that our fourth child will be starting college in the fall of next year. Jokingly, I asked him if the fifth child would be able to attend FHU at a discount. It didn’t occur to me to even mention the sixth child or the seventh child to him. I have no real expectations or dreams of college for them. Am I giving up too easily or selling them short? Am I out of faith and hope? I don’t think so. My hopes and dreams for them are just different. I am only being realistic. I cannot afford to set the goals so high they are unachievable. My two youngest cannot keep up with their peers, through no fault of their own. We focus on learning to count coins and do simple addition and subtraction, while peers are learning about division. We focus on reading picture books and answering a few questions correctly, while peers are reading chapter books and taking much harder tests. We focus on social skills because they have to be taught systematically, and we hope and dream that some of these simple skills we are teaching will be mastered and retained. 

My oldest two have now graduated from college. They are going on to do great things. One is a minister and is very talented in the field of graphic design. One is working toward a career in the field of law. I have two who are working to become nurses and their goals are reasonable ones for them. I am very proud of them. But, am I any less proud of these two who cannot yet count change or read age appropriate literature? 

Who is it that works harder? Whose accomplishments are loftier? Is it my twenty-two year old who studied hard and graduated from college? Or was it my developmentally delayed eleven year old, who after months and months of practice, remembered to make eye contact while he told the joke he had been trying to memorize? Perhaps it was my nine year old with a learning disability who got one hundred percent on her spelling test? THOSE were amazing victories!

Tate cannot clean his room without someone helping him. It has to be broken down into small tasks and one-step directions. He cannot put his own laundry away unless it is given to him in very small amounts. Large tasks are just too overwhelming and impossible for him to tackle. Kids like Tate and Sydney are often thought of as “dumb” or even lazy. I can testify to the fact that neither of my developmentally delayed kids are dumb or lazy. They both work very hard and they both are smart. They just do not process information as quickly as we do, nor do they think the same way we do.  Recently I saw a quote that said something along these lines:  "Autism is not a processing error. Autism is a different operating system." That sums it up. 

As my heart swells with pride over the great accomplishments of my college graduates, I will also be appreciating the advances made by my youngest two children. Those gains might seem so insignificant to most people, but not to me. You see, I watch my two youngest work much harder to accomplish so much less. Almost everything comes harder to them. People with disabilities, making gains in spite of their handicaps, and overcoming their challenges daily are also worthy of celebrating. Celebrate with me.  

My two youngest, so easy to love.

Also by this author: "15 Truths of Parenting Special Needs Kids."

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