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Archive for March, 2016

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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