Nurturing the Heart of Siblings of a Special Needs Child

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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Finding Compassion

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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Filling Momma’s Cup

As a parent, often we are pulled in several directions at once.  It is just the nature of the role we play in our family.  I’m married to a great man, who happens to drive a truck for a living.  Even though he is as involved as possible in our daily life at home, the bulk of the task falls upon my shoulders.  Add to that the fact that I am a Mom, Grandma, homesteader, and homeschooling parent, along with my other roles and it is enough to exhaust me just thinking about it. As we tend to the needs of our family, it is easy to overlook our own needs. 

Picture in your mind your family standing near you, all thirsty and with their cups held out to you.   As you go to give them water, to satisfy their thirst, you find your pitcher running low.  You carefully ration out the water to give each one a portion.  While each has a small drink, their thirst is not completely satisfied.  You also find that you have nothing left for yourself.

Being a Momma, we easily can find ourself in this situation.  We give and give to our family and those around is, yet we neglect to refill our own pitcher.  Like the example that I shared, this can lead us to having to ration ourself out to meet the needs of our family.  In doing so, we risk not being able to fully meet those needs. 

We have to find ways to replenish our reserves.  This could be through connecting with our spouse, friends, or even simply carving out time for yourself each day.

One of my favorite times is the evening after the kids are in bed.  I sit with my cup of coffee and read, crochet, or write.  I recently bought a Bible verse coloring book that I am starting to color in.  Another relaxing activity that I enjoy is word search puzzles.  It doesn’t have to be anything that requires a lot of time or expense.  Sometimes, just having a cup of coffee on the porch and listening to the night sounds and feeling the breeze can feel wonderful.

The whole point is taking time out for myself.  By doing so, I am filling my pitcher.  I am adding to my reserves so that I can meet the needs of my family.

It is really easy to say that we don’t have the time to fill our own needs.  I know.  I did it for years.  I was so used to being “Mommy on the spot” to my family and those around me that I totally forgot myself in the process.  I got exhausted and often felt overwhelmed or depressed.  I had to learn how to take time for me.  I had to get over thinking that taking time for myself was being selfish.  I had to realise that I needed to have my “Momma time” so that I could be a more effective parent and wife.

One rule that I have for myself is that my Momma time is never spent preparing homeschool lessons or housework.  It is meant to be a time focused on my needs, not doing other tasks.  This to.a has become something important to me know.  I don’t see it as a luxury or waste of time.  I see the value of it and look forward to it each day.

In taking the Momma time, I am finding that my stress levels are lower, I am more productive, and I enjoy my days better than before.  I wish I had learned this decades ago, when I was in my 20’s instead of in my 50’s.  It is definitely something that I am trying to teach my daughter now as she grows up.

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Spring Clean Out

Today, we are taking a day to clean out the bedrooms and homeschool area.  I am blessed with kids who are easily overwhelmed by clutter, seems that it isn’t a trait that only affects our autistic son.  🙄

It is amazing now much it can influence the productivity each day.  The house isn’t too bad, we just realize that we have more than we need.  For the kids, it is harder to maintain their bedroom and play areas.  By cutting their toys and such down to what they actually play with, they will be able to enjoy their play time and not feel overwhelmed when it’s time to clean up.

I am clearing out the homeschool area.  I see no benefit to keeping so much.  Books and supplies that we are not going to be using this term or next term are being purged out of the house.  Some will be donated, depending on the condition.  Rest of it will be  trashed.  I know that some readers may be hyperventilating at the thought. Homeschool families are in general are a hoarding lot when it comes to educational materials.  I know many families who have rooms with walls of filled bookcases.  It works for them.  It doesn’t work for us.  We prefer the simplicity of only storing what is necessary.

Little Miss is completely embracing the clean out.  She has attacked her area with gusto.  She is so happy about it as well.  Her whole demeaned over the project is light. 

I can’t wait for the project to be done.  Once these areas are complete, I will be doing the same to every other room.  Loving it!!!

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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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Where Did Summer Go?

Just when it seemed that summer was starting, here I find myself watching the fast approaching end to the season.  It has been an eventful one.  One major change was the new job that my hubby has. He is once again working for an OTR (over the road) trucking company.  It has been a bit of an adjustment for the kids especially, but everyone is doing well with it.

We decided to take the summer off after all and will soon be restarting the new term.  With the summer’s warm temps, I found it too difficult to keep the kids focused on schooling when the beautiful day was waiting for them to come outdoors to play.  So, we have been spending time outside or going on outings.  It has been a great decision.  We will be starting up our school term after we get back home from our vacation.

After vacation, I am going to be getting internet set up at home.  So looking forward to that.  It has been a long time. It will be a dial-up service but that is so much better than not having any internet at all.  I currently only have the internet on my phone, which is why it has been hard to get the blog posts done.  Now, it will only be a matter of getting time scheduled to actually work on and post to the blog.

One really exciting event that took place over the summer has been Little Man getting a much needed AmTryke.  This is a specially designed large tricycle made for special needs children.  It has a feature that allows the child to “pedal” the tricycle not only with their feet but with their hands as well.  Little Man doesn’t have the leg strength to pedal a tricycle with his legs alone.  He also doesn’t have the balance needed for a bicycle.  So, in his physical therapy sessions, they have had him ride the AmTryke from time to time.  At first, they had to push him using the handle on the back of the AmTryke to help propel him across the gym floor.  Now, he is able to propel himself if the surface is flat and smooth.  In our yard, we have to push him a bit over the inclines and rough areas, but otherwise he is doing it on his own.  AmBucs is the resource we used to get the AmTryke.  The physical therapist sent in the order with his measurements and they contacted us via mail.  AmBucs has a fundraising site that they use called Crowd Rise.  On this site, we were able to list Little Man and share a little about him.  It works a lot like the other fund raising websites.  You share the link and others donate to the fund.  As soon as the money to pay for the AmTryke is raised, they ship it to the physical therapist for assembly and final fitting.  This is a great resource for families with special needs children who cannot afford to buy the AmTryke themselves.  The cost for it was $735.00.  We were able to raise the funds within a few weeks.  What a blessing!!!  Little Man rides the AmTryke 30-45 minutes a day.  It is going to do so much to help him build strength.  Though Hypotonia is a neurological disorder that cannot be cured, the effects can be lessened with time and exercise.  In the past two years since beginning the therapies at the center we take Little Man to, we have seen a huge change in his strength and stamina.  He is also making a lot of progress in others areas as well.

Little Miss is such a great big sister.  She is so compassionate and loving towards her brother.  We have been seeking out opportunities for her to shine as well.  She is now involved with a church youth group and is signed up for 4-H.  She was in the 4-H Cloverbuds program previously.  This will be her first year to be in the actual 4-H group.  We still need to decide which of the local groups to have her in, but she is enrolled with the organization.  She is really excited about it.

 

 

 

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Autism Awareness – My Point of View

During the month of April, it is easy to find examples of the Autism Awareness campaign. Everything from the blue lights, wearing blue on April 2^nd, the kickoff of the Autism fund raising runs, and the seemingly endless social media posts about the high rate of diagnosis across the nation. This is also a season that I have mixed emotions about. I love the fact that people strive to educate others about autism. I often wish that those who have no practical experience with autism would stay out of it though. Often, they cite information that is not accurate or can be misleading. Let’s face it. It is really easy to hit the “share” button on Facebook and other social media. There is another side to this that is rarely addressed however.

First, let me tell you a bit about my son’s autism. He has what is known as Infantile Autism. It is a neurological disorder that he was born with. He didn’t get it from vaccines or other means. He was simply born this way. He is 7 years old, but developmentally is a 2 year old. He has never been diagnosed with mental retardation. He simply is severely delayed in his development due to the low functioning nature of his autism. He is non-verbal, but does vocalize on a daily basis. He makes sounds similar to what a young baby does just prior to learning to speak words. On very rare occasions, he will speak a word. At those times, he is simply repeating a word and not using it with intent. Just like when a baby continually says “Da-Da” but is not actually calling for their Daddy. Pookie doesn’t run, but will walk quickly instead. He has only within the last year been able to feed himself, with mixed results, and still needs assistance in doing so. He cannot drink from a straw or cup, but has to use a sports bottle to drink from due to both his developmental delays and a sensory issue he is working to overcome. He is beginning to use sign language, but most signs are approximated since he cannot physically make the actual signs due to fine motor delays. Just recently, he began showing an ability to dress himself with minimal assistance. We still need to direct his actions in dressing and assist by making sure he is not putting things on backwards or trying to put both feet in the same pant leg. He cannot work clothes fasteners, everything has to be pull on shirts and elastic waist pants. Socks need maximum assistance, as do his orthodic braces and shoes. He is unable to bath himself or do any of his own grooming. We are still trying to toilet train him, which is difficult due to his lack of understanding of the signs the body gives of when he needs to go. Overall, he is truly like a 2 year old in a 7 year old body.

When the organizations, such as Autism Speaks, have their big autism awareness campaigns each April, I roll my eyes at most of what is said. Prior to the new DMS-V being published, there were more clear definitions of what autism was. Yes, it was referred to as a spectrum, but people were able to distinguish between the various diagnosis that fell into the autism spectrum. Now, those lines are blurred. Autism Spectrum Disorder is now a blanket diagnosis that covers a wide range of issues. It is like saying someone has cancer. Yes, all forms of cancer have common characteristics, but the way that you treat breast cancer is different than how you would treat leukemia. It is the same with autism. Not all treatments are alike. What works for some, won’t work on another. Some kids on the spectrum function in school without needing an aid working with them, while others cannot function in school without a teacher’s aid working along side of them. Many on the spectrum are successfully mainstreamed into a classroom with kids who are not on the spectrum, while others will never be able to be mainstreamed due to the severity of their disorder. This brings me back to organizations like Autism Speaks. One of the main focuses of this organization is to do research with the pharmaceutical companies to find a drug treatment that can help “cure” autism or lessen the issues from the characteristics of autism. The most common issues that are treated with drugs are ability to focus and behavioral issues. Then, of course, you have the crusade to find a drug treatment to cure autism.

Autism is a neurological disorder, not a disease. It is simply the way that the brain is wired, for lack of a better way to explain it. There is no drug or treatment that can rewire a brain. My son is unable to use a verbal communication, not because he doesn’t know the words to use, but because the connection in the brain between knowing the words and ability to use them is not there. I remember one speech therapy session when he was suddenly vocal and calling his therapist by name. He used her name with intent. The following week and through the months since then, he has never used the vocals again. For that brief moment in time, the connection in his brain was working. Then, the connection was lost and has never returned. There is no drug or medical treatment that can force that connection to be made or keep it functioning. Yes, it has been proven that drugs can assist with the behavioral aspects of autism spectrum in many cases. The idea of curing autism through medical treatment is what I take issue with. As I already said, autism is a neurological disorder, not a disease.

Another aspect of the autism awareness campaign that I take exception with is that it is fast becoming a “feel good” fluff to many people. They pat themselves on the back for sharing a post on Facebook, retweeting a post on Twitter, or some other social media format. They feel good that they have made a difference by doing so. Good for them. Now, what are they doing the rest of the year? Talk is cheap. It can also be meaningless.

For the families who are in the trenches, dealing with a family member with autism on a daily basis, what benefit has that blue light or social media post been to them? Maybe we should pat you on the head and say “Good Boy. That effort you took has had such a positive affect on our life.” <please insert rolling eyes here> Truth is, I am glad that it gives you a sense of the “feel goods” to make the effort to share the news that autism is out there. But if you want to really have an impact, here are some ideas.

Be a friend. Kids on the spectrum are often bullied in school or are ignored. Being their friend can have a he impact on them. A common trait of autism is that the person is socially awkward, A friend an help to bridge that area but in helping them to become more comfortable in social settings and in their own sense of well-being. Imagine if you knew that you were different and others mocked you or ignored you for it. Now imagine if you had a friend during that time. Wouldn’t you life be improved by having that friend? A friend doesn’t have to be a protector from bullies or a trainer in how to be social, just being a friend who can look past the autism traits and see the person within is a true gift. Isn’t it a gift to us all when we have a friend who enjoys being with us in spite of any personality quirks we may have? The siblings of a special needs child can also face challenges where having friends are concerned. Imagine being the sibling of a child who has a lot of social quirks. As mean spirited as people can be a t times, it is a sad truth that the siblings are also targeted by bullies. It is not easy to be the sibling of a special needs child. Our own daughter, who is a couple years older than our son, often takes on the “Little Momma” role with him. Because of his disabilities, she takes on the role of protector and helper, watching out for him if we are not in the room. We have literally had to seek out opportunities for her to simply be with peers without him around to insure that she has her time with peers and to simply be herself. She takes it very personally when someone says something mean spirited about her brother. The bully attitude hurts her, even if not directed at her.

Be a friend to the parents. As a parent of a child with autism, I can tell you that a friend can be a God-send. As a friend, you don’t have to have all the answers, but just be willing to listen when the parent needs someone to talk to. Don’t be afraid to pick up the phone just to say “Hello” or drop a card or note in the mail to them. When you are the parent of a special needs child, you often feel alone. Your life is focused upon the necessities around our child, therapy and doctor appointments, schooling, and in-home therapies on top of all the other typical things like tending to your home and family, that you really don’t have a lot of life outside of that. To have a friend who isn’t afraid to call can make a difference in a profound way. Sadly, it is often that the friend has to take the first step and call. We have often been tuned out by others, so we often choose to “not be a bother” to others and stick to ourselves.

Consider giving the parents time to themselves by babysitting. Let the parents have a date night to just reconnect as a couple. The divorce rate in marriages where a special needs child is a part of the family is really high. The parents are so busy taking care of the family that they forget to take time as a couple.

Don’t show favoritism with children. It is so easy when the child with autism is nonverbal for people to talk around them or focus on the child who does not have autism. Just because the child has special needs does not mean that they are ignorant of what goes on around them. A child who cannot speak can still see when you ignore them while giving all you attention to their siblings. It hurts them and is cruel. By nature, many with autism are solitary. We, as parents, struggle to bring our child out into the world around them. Don’t make our job harder by treating our child in a way that isolates them further from those around them. Though developmentally delayed and nonverbal, our son still feels the pain of rejection when it happens. Especially when it comes from someone he cares about. After such an experience, I have often had him curl up in my lap and be literally sobbing in grief over the rejection. By the same token, don’t ignore the siblings of a special needs child. Young children can feel neglected due to all the focus on the special needs child. They may not understand why their sibling gets to go to therapies that look like fun to them, yet they don’t. These siblings needs to feel special in their own right as well.

Don’t be patronizing. While I am a strong believer in the power of prayer, I honestly cringe inside when someone tells me that they are praying for me. Are they really? Or do people say that just to make themselves and you feel good? Don’t say that you are praying for me if you don’t mean it. Try to remember that when you pray to the Lord for the me to continue to find strength to deal with the challenges that autism bring daily in to the home & family, that one answer in giving me that strength might be as simple as you picking up our phone to call me. It is easy to pray about someone. It is harder to remember that we are to be the hands and feet of the Lord, doing what we can to help ease the way.

Don’t simply share or retweet, learn for yourself what autism is all about. Educate yourself. It doesn’t matter if you have a child with autism in your family or not. Learn for yourself what the truth and reality is. There are many things shared on social media that are based upon false information. Don’t become a part of the problem by sharing that information.

If you are ever tempted to share your opinions on how I could do a better job as a parent in raising and getting treatments for my child, put your hand over your mouth and keep it shut. Unless I am asking for your opinion, I don’t need to hear it from you. Some of the most cutting and cruel things that I have ever heard have come in the form of unsolicited advice from strangers. I have had a total stranger come up to me in a store and tell me that I should have my son “fixed” by a doctor so he won’t be able to breed more damaged kids when he is older. Yes, people do go there and get that ridiculous.

Don’t remind me that children with autism are all geniuses. That is not fact and can be unwittingly hurtful to the parent. Only a small percentage of child with autism are in the genius category. Yes, many are very smart or have a talent in one area or another. Remember though that for some families, the child with autism can also be challenged with severe mental disabilities as well.

Don’t call my son, Rainman. If you really knew the story about the person the movie was written about, you would know that he had a brain injury and was not autistic.

Get to know the parents of a child with autism. I am more than the Momma of a child with autism. I am a wife and mother of 5 children. I am a grandma. I have hopes and dreams that have nothing to do with autism. I have hobbies and interests just like women who don’t have a special needs child. Autism may be a part of my life, but it isn’t the whole of my life.

There is so much more that people can do throughout the year to help families with the challenges of autism. These are only but a few to get you thinking. The best thing that you can do to help if you do not know of a family with autism challenges is to search out in your local area for organizations that directly help families facing autism. Are there any organizations which help train service dogs for those with autism? Typically, a trained service dog can cost between $15,000 to $24,000, depending on how much of the cost the family has to pay. Find an organization that helps families afford a service dog and donate to them. Offer you time to help with a fund-raising event for a family trying to get a service dog.

Don’t be afraid to bring a meal to a family, especially if there is illness in the family. You don’t even have to cook the meal. It could be a s simple as going to a place, such as a pizza parlor, prepaying and arranging for pizza to be delivered to the home.

Offer to help run an errand while you are running your own errands. Picking up a few groceries and dropping them off can lift some of the burden very easily.

If you are part of (or your own children are taking part in) a youth group or organization such as scouts or 4-H, ask if you can take the siblings of the special needs child with you. Often, parents of special needs children do not have the ability to take there other children to activities such as the youth organizations. It can simply be an issue of transportation due to the needs of the child with autism. By offering to give a ride to the siblings as you go with your own children, this opens up a door that may well have been closed before.

Whatever you can do is a blessings. One lady at a church we attend when we are able to, has been sending us a card when we are unable to attend. That little card and note means the world to me. It allows us to feel connected to the church in spite of not being able to attend. The church is 90 miles from our home and often times, we are unable to go simply because we don’t have the money to cover the fuel expense. To get that card in the mail, we know that we are not forgotten. That we matter enough to them that they took the time to write the note and send it. It is a balm to the soul.

You don’t have to make grand gestures to be a blessing to a family facing autism or any other special needs challenges. You just have to be authentic. Do something from the heart. More often than not, just a gift of your time is all that it takes to bless someone.

In this month of autism awareness, challenge yourself to do something that really matters. Step outside of the comfort zone and give of yourself to a family you know. Don’t simply share random stuff about autism on social media. Choose to be someone who can ease a little of the stress. Find one thing that you can do, with honest compassion and intent, to be a blessing.

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A Crazy, Busy Month

Hard for me to believe that I haven’t posted on the blog for nearly a month.  We have been finishing up our homeschooling for the term and in the midst of it all, we have been dealing with a lot of illness.  First, Pookie was sick, then we all took turns with variations of illness.  Hubby had bronchitis, Little Miss and I had bad colds with a lot of congestion, then Pookie ended up going to the ER due to sinus infection and upper respiratory infection.  It was the only time this winter season when we were all hit with illness like that.  Thankfully, we have all recovered except the residual cough that is hanging on.

We ended up getting out tax returns filed and am thrilled that we don’t owe anything.  The refund we receive will be a welcome blessing.  In the middle of all this, we also found out that Pookie is once again eligible for full disability and that will be starting up soon.  I am SO happy about that.  We will now be able to get him some therapy equipment to use here at home in between his weekly sessions.  There are many things that they use in the sessions that we cannot get through the medical insurance.  This is where his disability check will be a blessing for him.  I can set up an area for a small gym to help build up his strength and aid him in developing his core muscles.  He also struggles with gravitational issues that the equipment that promotes balance will help to overcome.  One item is a rocking board that requires him to balance while doing simple activities on the board.  A small indoor trampoline will help build up muscles in his legs.  Not to mention, there are many occupational therapy related activities that I will be able to buy the supplies for.

I have been working on purging the house of excess a little each week.  The end goal being that we only have the most essential of items remaining.  Living in a small house, storage is a premium.  Especially when the house was built without any built-in storage of any kind.  The goal is to have the purge done before we begin our new school term in May.

I have been writing a little about the purge in my Simplicity by Choice blog.  It is taking longer than I would like, but going at a speed Pookie can handle.  Make too many changes, too soon, and he has trouble coping with it.

One change that he is doing very well with is communication.  Over the past couple of days, he has been using sign language spontaneously and without any prompting.  This happens mostly at meal times, but I am thrilled with what we are able to get.

Little Miss and I are working on new projects together.  She is wanting to learn to do an art journal, so that is now becoming a daily part of life.  We are practicing various art techniques as backgrounds for her to doodle and journal on.  She absolutely loves it!  I am just pleased that she finally found a way to enjoy writing.  LOL

 

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Every Parent of Autistic Children’s Fear

Imagine being the parent of an autistic child and traveling to visit a relative for the holidays.  It should be a fun and celebratory time.  In one case that just happened Christmas Eve, it turned into a nightmare.  A young boy, age 4, went with his family to South Carolina to visit his Grandma for the Christmas holiday.  According to news reports, on Christmas Eve, the mother left him with his Grandma while she made a trip to the store.  What happened next is a scenario that many parents of autistics  can relate to.  Grandma turned her back for a moment and the boy disappeared from the home.  Many searched for him but unfortunately, there was not to be a happy ending.  The boy was found drowned in a pond near the Grandma’s home.

This heartbreaking story brings to light one of the dangers of autism….wandering.  According to the National Autism Association website, 48% of children with Autism or an ASD will wander.  This is a rate 4 times as high as children who do not have an ASD. Here are some more alarming statistics from their website.

In 2009, 2010, and 2011, accidental drownings accounted for 91% of the deaths of ASD children under the age of 14 years.

More than 1/3 of the ASD children who wander are rarely/never able to communicate their name, address, or phone number.

32% of ASD parents report “close call” with possible drowning.

2 out of 3 parents reported their missing children had a “close call” with a traffic injury.

Children with ASD are 8 times more likely to wander between the ages of 7-10 than their typically-developing siblings.

 

This is why organizations like Firefighters vs Autism exists.  The following is an excerpt from their website.

Firefighters vs. Autism was organized exclusively to educate the community about the dangers of wandering and drowning that are prevalent among those within the Autism Spectrum Disorder (ASD). We are firefighters, family members and friends who are primarily engaged in educating first responders, the community, as well as the parents of children with Autism, for the purpose of preventing wandering and drowning among individuals with ASD.  Our primary purpose is to provide workshops for first responders in order to educate them on the dangers of wandering and drowning as well as to provide opportunities for families, friends and/or caregivers to learn about what they can do to prevent these tragedies from happening.  Firefighters vs Autism provides information to the community in general on the dangers that individuals with Autism could face.

 Through various fund raising events and merchandise sales, we are able to host workshops for first responders and care givers, provide swim lesson and drowning awareness opportunities to families impacted by Autism, pool fencing to families who cannot otherwise afford it, and community wandering awareness seminars as well as therapy events for those effected by Autism. We also provide education and/or counseling for those families dealing with an individual with Autism.
We are currently operating out of Tucson and southern Arizona but hope to expand into other communities across the nation. We also plan on donating to other 501C3’s that share in our organizations mission.

 

Firefighters vs Autism is trying to get the word out out to families and caregivers on how to help prevent these tragedies.  Only 50% of families being taught about the steps that can be taken to minimize the risks, they are spearheading the movement to educate those who are in need of the information.  They are currently based out of Tuscon area, but are always willing to help other fire responders across the nation to get the training they need to continue the work.

Another area which they are taking head on is the mistaken idea that the autistic children wander off due to lack of good supervision of parenting.  Consider this, if you are a parent or caregiver of any child, are you actively supervising them every minute of the day and night?  What about when you are switching loads of laundry in the machines?  What about when you have to take a shower or use the toilet?  Are you watching the child at that very moment?  What about when you are asleep?  What about when you are cooking a meal?  Unless you have the child physically at our side every moment of every day, you cannot answer “yes” to any of these questions.  Given those situations, in order to be physically watching over your child every moment, you would not even be able to shower or use the toilet without the child in the bathroom/shower with you.  Even then, in a shower you have your eyes closed and attention diverted when you rinse the shampoo from your hair.  Get the point I am trying to make?

Unfortunately, there are communities that still have the belief that ASD children wander due to a lack of proper supervision or because of bad parenting.  This is a major problem.  It is hard to get past that attitude.  I happen to live in a rural area with just that way of thinking.  There is little true education about the risks that ASD children face and honestly, I feel that many of the first responders leadership really cares to change their opinion.  It is up to us, as parents to start making the changes.  We first need to educate ourselves.  We cannot say we are doing all that we can until we have explored all the possibilities.  It can be as simple as installing door chimes to alert us when the doors of the house are opened.  We can fence our pools or yard.  Fencing the yard is especially important if you have a pond or other waterway near your home that would attract your ASD child.  Next, we need to educate our families, friends and neighbors as to the dangers that our children face.  They need to be aware so that they can assist if ever necessary.  If your child has a babysitter, they need to be educated on the safety guidelines that your child requires.  The local first responders need to be given the facts and information as well so that if the worst should happen, they are prepared to help effectively.

If you are interested in learning what you can do to educate yourself or others about wandering and the safety risks that a child with an ASD face, contact Firefighters vs Autism or check out the National Autism Association website for resource information.  The information you learn can help to lower the risks and possibly save a life.

 

 

 

 

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Autistic Logistics, by Kate Wilde – Book Review

It seems that lately I have been finding a lot of great book resources.  This one is a real gem.  I wish it had been around years ago when Pookie was first diagnosed.

 Autistic Logistics, by Kate Wilde

Autistic Logistics is a new book set to be released in January, 2015. If there were ever a book that should be made available when a parent gets the autism diagnosis, this is it. The author is a Director of the Son-Rise Program. The ideas she presents in this book are based upon the Son-Rise methods.

As the parent of an autistic child, I can attest to the difficulty parents can have in teaching the basics of self-care to these precious children. Developmental skills, such as toilet training, can be a very difficult thing to help your child accomplish. Self-regulating their emotions to curb meltdowns and tantrums is another tough lesson to help the children learn. This book gives solid advice and examples of how to tackle the most basic of issues that parents of autistic children face.

Here is a summary of the book that was provided on Amazon,

Have you ever wished that your child with autism spectrum disorder (ASD) came with a manual? This book provides just that, offering clear, precise, step-by-step advice on everything you want to know, including:

– How to toilet train your child without pushing or pressuring
– How to get your child to sleep in their own bed and through the night
– What to do when your child tantrums, hits or bites
– How to introduce new foods, without a fight

Based on decades of experience, Kate Wilde tackles these day-to-day issues and more, using tried-and-tested techniques to help you transform the challenges of home life and create harmony. The unique approach featured in the book, which encourages you to support your child’s need for control rather than fight against it, can have transformative results. Not only will you learn to see through your child’s eyes and help your child in a way that honors his/her specialness, but you will also begin to free yourself from the pressure and discomfort that can so often accompany everyday challenges.

Catering to all age ranges and points on the spectrum, this book will be of immeasurable value to parents and caregivers of children with autism, other family members, as well as teachers and teaching assistants.

As I read through the book, I thought of just how timely it was for it to come to my notice at this time. Our own child is reaching that age when toilet training is being addressed. Using this one area as an example, let me say that this book has the most useful and detailed information that I have ever read. Ms. Wilde starts off by taking a look at poplar attitudes towards toilet training that are actually making the process harder. She then breaks down the reasons why some accepted methods do not work very well. One case in point being to place the child on the toilet every 30 or 60 minutes. The problem with that is you often have a child soil or wet their diaper in between trips to the toilet. This can become a frustration to both parent and child.

What she suggests is something that just makes sense. Keeping a diary of the times your child eats, drinks, and soils/wets their diapers. Start noting the time intervals and once you see a pattern, you can get the child to sit on the toilet prior to when they would normally go in their diapers. She goes further into the exact process, but it is a very good method to try out. It makes far more sense to me. Most people have a set routine, a body time clock. For some, they always have to go to the toilet 30 minutes after a meal. Going on that theory, if your child has a routine, you can get them to the toilet before that set time arrives. This greatly increases their chances for success in the toileting.

There are many other areas of development which are addressed in the book. Each are ones that we face often as parents of autistic children. While the child’s therapists can offer advice, the parents really need solid guidance at home as well. This is where the book comes in. The clear presentation of ideas is done in such a way that it is easy to implement in the home.

I strongly recommend this book to anyone who is a parent or caregiver of a person with autism. It is a book that I wish had been around when our son was first diagnosed.

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