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Posts Tagged ‘autism’

As a parent of a special needs child, you know that much of your time and focus is directed towards that child.  It is simply a fact of life.  Depending on the level of disability, they need more of your attention than other children who are not disabled.  When you have other children, is it critical to make an effort to single out the sibling(s) so they do not feel left out.  Let’s face facts.  A special needs child gets a lot more attention at home, at therapies, and other areas.  To a sibling, the therapies can often look like fun.  The games and activities done in occupational and physical therapies can appear to be a play time.  Pookie gets to use the swings, trampoline, play games, and do art projects as a part of the sessions.  To Little Miss, this looks like fun that she is left out of.  At home, Pookie’s homeschool lessons are more fun looking than doing math workbooks or other written assignments.  This can also be frustrating and seem unfair to Little Miss at times.

She knows that Pookie’s brain and body works differently than her’s, but it still bothers her some days.  On some levels, she simply has to accept that he is different and has very different needs than she does.    On the other hand, if I were to point out all the things that she can do that her brother can’t, she wouldn’t take a lot of comfort from it.  She is still young enough to feel sad that he gets to do more fun stuff.  So, how do I address the issue?

First, I make a point to have private time set aside each day that we can do something together without Pookie being involved.  She needs the one on one time just as much as Pookie does.  We do crafts together that are of special interest to her.  One day, we spent an hour just making cards with rubber stamps and watercolor paints.  Other favorite activities are baking, playing music and being silly together, planting flower seeds for a special garden of her own, or simply doing each other’s hair and nails.  Whatever the activity, it is “our” time.  Pookie is usually watching a movie on his tablet or looking at his books during that time.  Some nights, she stays up an extra hour so we can have that quiet time together.

One night after the kids were in bed, I made Little Miss a heart map.  In the center of a large heart, I wrote her name.  All around the heart, I drew the quote boxes.  In each box, unlisted a trait of her’s that I loved and admired.  I then colored the patchwork of sections with colored pencils.  I placed the finished heart map on her desk.  The following morning, she found it as she got ready to begin her homeschool lessons.  She read through the heart map and got teary eyed.  After giving me a big hug, she hung it up on her bedroom wall.  Such a simple thing, but it meant so much to her.

I love our “Momma-Daughter” times.  We value those moments and look forward to them each day.  It gives us time to connect.  It is also reinforcing in her that she is highly valued.  She is much more than the sister of a special needs child.  She is a precious blessing and much loved by us.  She is values for the person she is. 

There may always be a moment when she feels like she has to take the backseat to her brother, but she knows that her time alone with me is set and valued.  It is a priority that I have with her. 

Because of the focused time we have together, our relationship is strong and continues to grow.  She is confident in her role in our family.  She knows her value and is becoming a strong little lady secure in the knowledge that she is precious to us.

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It is really hard some days, to take my son out in public or speak openly about his autism. Most times, everything goes well. Some days however, I just wished that I stayed home. It is a double edged sword. Pookie won’t learn how to adapt and cope with the trips to the store or other places without being given the chance to experience it. On the other hand, it is often very hard on him to manage. We find ways to help to distract him from the things that frighten him. One idea is taking his tablet with him so that he can focus on the videos or pictures that he enjoys. On some occasions, that is not possible and we have to find other alternative methods. All the time we are doing this, we also have to keep in mind that there may be days where there is no distraction and he has to learn to self-regulate.

One time that stands out was when we were at the Castle in Muskogee, OK, to see the Christmas lights. We went inside the castle and the kids were able to see Father Christmas, make a craft, and see all the wonderful sights. After we had been in there for a while, Pookie looked up and saw the banners (standards) hanging from the ceiling. He completely freaked and went instantly into a meltdown. Even though he was in his wheelchair, he was trying to climb on me to get away. Sheer terror was on his face as he tried to get away. In his perspective, it looked as though the large banners were falling towards him. We stepped outside for a while and tried again later to go back indoors. He handled it a little better, but soon was heading for meltdown again. During that experience, the staff at the Castle were wonderful. They seemed to understand how panicked he was and they talked calmly, kneeling down at his level, to try and help him relax. It was precious to see such compassion displayed.

There are times though when we run into people who are just plain hateful. There is no other word to describe them. This past week, I had a phone call that showed that hateful attitude from a very surprising source – another parent with a child on the spectrum. I think that is what blind-sided me the most. I never would have expected the hate-filled words to be spoken by another parent who was on the autism journey with her own child.

I received a phone call from this person, asking questions about homeschooling a special needs child. I have always tried to make myself available to parents of special needs kids that are wanting to/ already are homeschooling. There is so much misinformation out there and it is often helpful to be able to speak to another parent who understands. The lady told me about her son’s disability level. He is very high functioning and barely met the guidelines to be diagnosed as Aspergers a few years ago. He works well in his school classroom, where he is mainstreamed. He has no special services, because the professionals don’t see a need for them. His main issue is that of staying on task, which means he needs to be refocused from time to time.

We talked for a while about her desire to homeschool and what her options were. After a while, she asked about Pookie. She wanted to know about his disability. In her words, she wanted to “know that I understood autism enough to be qualified to guide her.” I told her about Pookie, his functioning level and a bit about how we homeschool. She asked if he got any services/therapies. I said that he gets Occupational, Physical, and Speech therapies each week. I was then asked if he talks and if he will ever “not” need the therapies. Again, I answered her. This is when the conversation turned.

She asked if I had difficulty with the pregnancy, which is a common question from people trying to understand why Pookie is so developmentally delayed. I said that I did. She asked very specific questions and I, being the open person that I am, answered her. When asked what type of difficulty I had, I replied that I had to have labor stopped 3 times before I was put on complete bed rest for the last couple of months. Her response floored me. She said that in light of his disability, maybe the doctor should have let the labor continue so that my body could get rid of the defect.

She was appalled that therapies are being “wasted” on a child who cannot speak, nor will grow to become a productive, contributing adult in society. In her words, “kids like (Pookie) are getting resources that should be given to kids like (her son), who have a real future ahead of them.” She went as far as to say that she wished there were a genetic test that could be done during pregnancy to determine if a baby will be as “defective” as my son so that the doctor can have the baby aborted.

It has taken several days for me to calm my thoughts enough to write this post. I realize that there are people in the world who will always have disdain for special needs kids. I just never expected to find that attitude from another parent with a child on the spectrum. Have we really reached a point where parents of special needs kids are judging others’ so harshly? You would think that another special needs parent would have compassion. Yet, here is a prime example of how some special needs parents will judge another as to whether their child is worthy of therapies and services. Often, people think that because my son is so delayed, that he doesn’t understand what is going on around him. They feel that they can say anything or behave in any way and it not affect him. This is far from true! He can be hurt by the actions of others. I cannot count the number of times he has been shut out by someone and I have had to comfort him as he cries as though his heart was broken. Even if a child doesn’t understand the words said, they understand the tone and the behavior. I am so grateful that this particular conversation happened over the phone when the kids were in bed.

It still makes me sick at heart to think about her hateful words. Yet, all I can do is find a way to have compassion for her, and others like her. They are so caught up in the “my child is more (fill in the blank) than yours” mentality that they miss the big picture. All children are a blessing. Yes, some are completely healthy and never are touched by severe illnesses or a disability. I am so grateful to the Lord for those kids. I am equally grateful to the Lord for special needs families. We, admittedly, have a rougher road in some ways. We also are spared some of the heartache that a typical child can bring. Of all my kids, Pookie is the easiest to raise thus far. Unlike a typical child, he does not test a boundary that we give him. Once he understands a rule, he obeys without questioning it. A typical child will challenge the rules from time to time. Pookie is also very loving. He doesn’t judge people by their race, financial status, or abilities. He accepts everyone the same. There will always be a sense of innocence with Pookie that most kids outgrow as the become adults. Raising Pookie, I am becoming an even better parent to Little Miss. I have more patience than I would have had before. I am also more understanding of my adult children and grandchildren. I don’t worry about the small stuff.

In Scriptures, we are told that we must become as a little child to enter into the Kingdom of Heaven, (Matthew 18:3). We have to learn to humble ourselves. Children are compassionate with each other until taught not to be. I have seen time and again where a little child may be openly curious, yet accepting of Pookie. One example is of a little boy at church. He is an only child and is preschool age. When we are able to attend that congregation, Pookie is in the same class as this little boy. One day, they were having a snack of the rainbow color fish crackers. The little boy noticed that Pookie only ate the orange ones, so he picked all the orange ones out of his own packet of crackers to give to Pookie. This isn’t something his parents had actively taught to him. He did this selfless and compassionate act all on his own. This level of compassion and acceptance isn’t something that can be taught at this young age. Yes, their parents can set the example, which is the case with this little boy. Often though, I see the trait in young kids who are not shown this example at home. Somewhere along the line, many people lose this compassion. They start seeing the world and those around them through a series of filters. They judge a person by their own personal opinion of “what is worthy” and right. One only has to look around at society in general to see how well THAT has worked.

Now that the shock of the conversation has worn off, my heart bleeds for that woman’s child. I thank the Lord that he is high functioning! I can only imagine what her attitude towards that precious child would have been if he were more significantly delayed, like Pookie. I pray that her heart be softened towards those with disabilities. I also pray that her son never witnesses the level of unacceptance that she has shown towards my son.

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When Mom Forgets

One of the hardest parts of being a homeschooling Momma is that sometimes you just forget who you are. Many of us have been there. We are so busy being wife, mother, and homeschool teacher, that we forget who we are apart from those roles. Add in a special needs child and it becomes even more so.

It happens gradually. Early on, you are so wrapped up in your relationship with your husband that your put your focus on building that foundation. This is great. It is necessary to have that foundation in place to have a successful marriage. Likewise, when kids start coming into the family, your focus is on them. They have a definite need for you to fulfill. These helpless little babies need so much of your time and care in the beginning. As they grow, the needs change, but are often just as demanding. If you choose to homeschool, you wear yet another role. Now, you are not only their Mom, but their teacher as well. You take on the responsibilities of teaching and training your children, placing much focus on their specific needs. If you have a child (or more then one) who has a disability or special needs, there is an entirely new dimension to your role as Mom. Depending on the individual needs of the child, you have even more that you need to give. Some special needs children are more “high maintenance” than others. They need more supervision or physical care than a typical child.

As a Momma, I don’t regret any choices that I have made. I love being a stay-at-home Mom. I love homeschooling my children. I feel blessed in that the Lord provides to me each day the strength and knowledge that I need to tend to all the needs of my children. I am especially grateful to have been an older Mom when I had our son. I have much more patience now at age 52, then I did in my 20’s when I had my oldest children. Being the parent of a young special needs child at this age is much easier for me than it would have been back then.

Through it all though, I often have to remind myself to not forget who I am. I am more than a wife, mother, and homeschool teacher. I am a woman who has interests that are separate from my role within our family. I love to be creative. Writing is something that I enjoy. Likewise, I love to do art and listen to music. I enjoy reading and can easily become lost in a book if the day allowed for it. In my lifetime, I have played several different instruments and look forward to a time when I can buy one of them to play again. I love to dance and even use belly dancing as a way to exercise and stay limber in spite of arthritis and fibromyalgia.

While my role as wife, mother, and homeschool Mom are in the forefront, I am learning to find balance. I am making time for me to feed my spirit & soul. You cannot quench your family’s thirst by dipping into a dry well. Nor can you truly give your best to your family if you are not taking care of your own needs. By taking time each day, even if only 30 minutes, to feed your own spirit, you will find yourself being able to meet your family’s needs better. You can become less stressed. I know that for me, if I don’t have some time to write or do something creative, my stress level increases.

It was never meant to be that a Mom set aside all of her needs in order to be a good Mom. There are so many who do believe that once you become a wife and mother, that you set aside your needs and focus only on the needs of your family. I disagree with that. Yes, you have to sometimes temper your wants and desires in order to do what is best for your family. That is a part of the compromising that all parents (and spouses) have to do in their relationships. However, you do have to have some way to “fill your cup” before you are able to dip into your own cup to fill those of your family.

One of the saddest things that I have ever witnessed was women, who upon their children growing up and leaving home, had no idea what to do with their time. They literally had focused so hard on the needs of the family that they had no clue how to get through their days once those children were on their own. It was heartbreaking. On the flip side, a child who sees their parents putting a priority on their relationship as a couple, as well as their own needs for personal growth and betterment, will become confident in their own pursuits. It is all about balance. Never taking away from meeting family needs to pursue your own, but notching out some time for yourself as well as taking care of family.

For me, that time is in the evenings once the kids are in bed. This is my time to write or to feed my creative needs. It is the time I can set aside the role of Mom and simply be me.

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Now that we have our curriculum chosen and ready to purchase for next term, I have been looking over our daily routine. What has worked? What areas need to be adjusted? Are there things that need to be omitted?

Our year started out with a very rigid schedule. After all, are we not told that kids who have autism thrive on structure? Well, one part of that equation is that I didn’t take into account our daughter, who is not on the spectrum. What works great for one child, didn’t always work well for the other. It really brought home to me just how different kids can be. I have homeschooled before. My two oldest sons, now in their 20’s, were homeschooled for about 6 years. I realized that they spoiled me. Both were on similar schedules and did well on it. I gave the younger one a daily assignment sheet to check off as he went through his assignments. The older son was given a weekly assignment sheet since he was old enough to not be intimidated by it.

With Little Miss and Pookie, the routines are very different. Pookie does best on a set routine. Little Miss is my free spirit. Some subjects need more structure than others. One thing that both have in common is that they love their outdoor breaks.

I have had to really relax the scheduling for Little Miss. The strict structuring just became a thorn in her side that wouldn’t let up. On some days, her focus on the harder subjects was best in the mornings. On other days, her focus was better in the afternoons. So, she needed a routine that would allow for that.

For Little Miss, I gave her a weekly assignments sheet. She could do the assignments in the order she wanted, yet knew what had to be done by week’s end. This worked out well. She loves to read and would get frustrated by the short daily readings. By letting her read the entire week’s assignments at one time, she was more content. She also likes to do her timeline and similar projects all at once. To her, it is tedious work that she doesn’t enjoy. So, I let her make all the entries at one time, if she chooses to do so. By giving her the week’s assignments, she is also learning a valuable skill. She is becoming better at time management. She knows, by experience, that once Wednesday rolls around, if her work isn’t being done, she has to work all the harder the rest of the week to get it completed on time. Yes, she has had a few times where her time management wasn’t up to par and when Saturday came around, she had to spend the day getting caught up. She learned from it though and has made major improvements since then.

Pookie is still on a set routine. We do a few activities, then he has a snack/lunch break and free time for about an hour. Giving him the time to play outdoors allows him to get the wiggles out of his system. He is able to come back to his work and focus better. Our school routine with Pookie goes like this. In the morning, he plays outside or gets an hour of video time if the weather is bad. Then we cuddle on the couch and do his lessons from the Memoria Press Simply Classical curriculum. Those lessons take us until lunch time. After his lunch break, we do Montessori style activities and arts & crafts. By 3pm, both kids are finished and have the rest of the afternoon to play or use their tablets.

By using this routine, both kids are getting their schooling done and the days go much smoother. Our son has all the structure he needs, while our daughter has the more relaxed routine that she thrives on. This is one of the things I love the most about homeschooling. We are able to tailor the school day to fit the needs of each child. By doing so, each is given the opportunity to progress at the pace that they need. Another benefit for Little Miss is that we have set into place time both in morning and afternoon for me to go over her work with her if she needs any help or explanations.

With this routine working well for the kids now, I will likely keep with it unless something comes up to change it. Little Miss will be using a different style curriculum next year, so adjustments may need to be made. Time will tell. Until then, we will keep on with what is working.

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Therapy Changes

One of the things that I love about the therapy center that Little Man goes to each week is that all of the therapies are done in one day.  On therapy day, he has 1  hour of occupational therapy, 45 minutes of physical therapy (working him up to having a full hour soon), and then after a lunch break, he has speech therapy.  It has been a blessing to have it all in one place on one day.  We travel 79 miles from home to get the therapies.

On the downside, he has had a very inconsistent year over the past 12 months.  A year ago, in December, his physical therapist went on maternity leave until about mid-late January.  Immediately after her return, his occupational therapist went on her maternity leave for a month.  Within a couple of months after that, the physical therapist quit her job so that she could have more time at home with her baby.  The new physical therapist worked with Little Man for a short time before having back surgery.

It was shortly after this time that hubby changed jobs and started driving truck for an OTR trucking company.  This meant that Daddy went from being home every night to him being away from home for at least 4 weeks at a time.

Little Man’s physical therapist recovered from her surgery and finally returned.  Everything seemed to calm down for a couple of months until this past autumn.  His occupational therapist let me know that she was moving out of state in October.  A week after she moved, his physical therapist changed jobs as well.  So, here we are with a new occupational therapist and physical therapist.  Both seem to be a good fit for him and he is working well with each of them.

I am just looking forward to him having some continuity in his therapies so that he can progress better.  Those with autism have a really difficult time dealing with changes in routine.  This past year has been a testing time for Little Man.  He has come through it pretty well, all things considered.  Here is to praying that this next year is more settled in his therapies than the past year has been!

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A couple of months ago, I learned of a program that Memoria Press has for special needs children. To my knowledge this is the first of its kind. When Little Man was first diagnosed to have autism with very significant developmental delays, I began a 3 year search for a school or homeschool curriculum that was designed for special needs children. Again and again, the answers were always the same when I spoke to the publishing companies. Either they suggested preschool materials or they knew of nothing that was available. The problem was (and continues to be) that Little Man is not capable of doing a preschool curriculum as it is written for typical children. Preschool curriculum usually is designed to include a lot of tracing, cutting with scissors, pasting, coloring, counting, and other early academic skills. Many special needs children are unable to do those things, which leads back to the original question. What do we use to teach a child with significant developmental or physical delays?

As I looked through various homeschool catalogs that arrived in our mail, I noticed that Memoria Press has a program called, Simply Classical. The program levels are as follows:

Level A – for age 2-3 years

Level B – for age 3-4 years

Level C – for age 4-5 years

Level 1 – for age 5 years

The ages given are not looked upon as only the child’s physical age. The program is designed to match the child’s levels in cognitive, language, and motor skill development. In our case, Little Man is testing at the developmental age of 25 months by his occupational therapist. So, the program’s Level A is perfect for him. It will given him just enough challenge in the fine motor skills area to help him progress, yet not be overwhelming.

One of the things that has drawn me to using this curriculum with Little Man is that they have a list for each level of program levels A, B, and C, of the developmental skills that are addressed and taught in that particular level. I was able to print out a copy of the list and give it to Little Man’s OT and now, she is able to include many of these things into the therapy sessions. As she looked through the list, she found them to be on target for what she was planning to work towards. A few of the skills, he is just beginning to learn, but most are ones we will be teaching him as we go along through the curriculum.

The curriculum is based upon a 4-day week schedule. This perfectly matches up with Little Miss’ curriculum from My Father’s World. Being that we have one day each week devoted to traveling 79 miles from home to take Little Man to his therapies, the 4-day week works out perfectly. On the 5th day, we go on an outing or do extra activities that blend in with the lessons of the week.

On the website, I was able to print out a Supply List for the Level A program. Much of what I saw on the list are basic art supplies. I already have nearly everything on the list. They went to the effort to offer options for many of the items. For drawing paper, in example, they list two different brands that are highly recommended. Play dough is another item that they include, but they also provide a recipe to make your own. At the end of the list, there is a special section listing items recommended for fine motor skill development, gross motor, sensory play, and problem solving.

When the order arrived, I was thrilled to see a box filled with colorful board books. Little Man loves these. While he is able to handle paper books without tearing them, the board books are going to be even better in the long run. Often, they have more vibrant colors, which he enjoys. I have often noticed that the more colorful a book is, the more time he spends looking through it. This is one reason why he spends long periods of time looking through photo albums.

The lesson plans are very simple to follow. Everything is very detailed on one page. It is in grid format without extra pages to flip through. For record keeping purposes, I am making a photocopy of the lesson plan pages, which I will have in a binder. When opened, the lesson plan grid will be on the page to the left of the binding and a lined page for notes will be on the right. This will allow me to make notes about his progress as we go along. If there are any activities which he has difficulty in doing, I can make a notation. At the end of the year, I will have a detailed portfolio of his daily work. Another reason for the lined page is to give me space to list Montessori activities, Letter of the Week pages, or any other projects that we work on each day. One advantage of having the copy for my records is that I can reuse the same lesson manual as often as necessary until the skills being focused upon are achieved.

I am still at a big of a quandary in the academic part of things. Little Man is firmly at a developmental age of 25 months where his fine motor skills and some cognitive skills are concerned. However, he is also able to learn things that a 25 month old would not be able to do. So, I am still using Montessori activities and the Letter of the Week curriculum from Confessions of a Homeschooler. Both will also help his fine motor development. They will also be providing more academic learning than Simply Classical Level A program will give.

I have learned over the summer, that taking break from the homeschool routine does not work with him. He lost momentum over the summer as well as now having to relearn some of the things he had done last school term. This is not unusual. Even typical kids can lose a bit of ground. They get out of the routine and habits that they were using in the previous school term. So, in the beginning of a new school year, the habits have to be reestablished. With some special needs children, this issue can be more problematic. Some kids simply cannot take that long break without it having negative affects. Little Man is one of those kids. He has to stay on the routine of homeschooling year round to make the best amount of progress.

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So happy that Little Man has taken to using the PECS cards to make his thoughts known.  Most often, it is to ask for something.  I also use them to give him the opportunity to make choices.

One area that needs a lot of work though is for me to make new good cards.  Unless away from home, we eat a diet that is mostly vegan foods.  Sadly, there are many ethnic foods, in example, which there are no PECS cards for.  I am now taking pictures to make my own cards.

To make the cards, I first take pictures to upload to my computer. I open up my word processing program and make a grid 4 squares across by 5 does down.  This yields 20 catds per page. The squares are 2″x 2″in size. 

I then insert and size to fit a picture in each square.  I leave enough room so rhat i can label each picture.

The page is printed onto cardstock. The squares are cut out. I then place the cards on a lamination pouch, spacing them evenly.  Upon laminating, I cut out each square along with a sliver of laminate border in place.

Once cut, I place either the rough side of hook and loop tape on the back of each square.  These are then stored in trading card sheet protectors, organized by category.

Another option is to use the magnet tape.  I use the magnet tape for routine cards. 

I keep a small binder that held half sized pages that were laminated and had strips of the fuzzy side of Velcro attached.  I have cards that I made to represent pictures of bariou food menu items.  When we go out to eat, I have a ready supply of cards for each restaurant. Little Man then is able to choose the meal he wants.

On our wall, I have a magnetic message board.  I have a second set of cards with his favorite foods and snacks. I place onto the message board the food choices that he has for the day.  I also have a “change diaper” card on the board.  A piece of the magnet tape is all that is needed to keep them in place on the board.

Now, as I am ready to serve a meal, I take a picture of the meal. As soon as I have enough to full a sheet, I make the cards. Little Man is able to make choices and is happier during mealtimes. 

 

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