Feeds:
Posts
Comments

Posts Tagged ‘family’

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.

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

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.

AmTryke

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.

 

 

 

Read Full Post »

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

 

Read Full Post »

Misconceptions About Autism

It seems that everywhere you turn, there are stories in the media, network and social, about the violent behaviors of autistic children. From school shootings, where the shooter was said to be on the Autism Spectrum, to television talk shows like Dr. Phil, you hear about this darker side to autism. But is it a fair summary of this disorder?

I get more than a bit uncomfortable when I hear people talk about autistic people being violent and needing to be put in a long term facility such as an institution. I understand that there are extreme cases where that option may be necessary. Honestly, I get that. But should people be judging ALL those with autism as being painted with the same brush? That is where the discord happens within my heart and soul.

Being the parent of a child with autism, I can give you a glimpse into our life. Autism is not for wimps. That is a certainty that anyone raising a child with autism can attest to. Our family has been blessed with a happy, sweet natured son who just happens to have Infantile Autism. Pookie has a full range of emotions, just like a typical child. The only real difference is that he has trouble expressing it. On most days, he is giggly and happy. Does he have a moment of anger? Absolutely! In his case though, we have learned to help him deal with it properly.

One good example of his anger is when he is frustrated. That is the most common trigger for anger with him. Once we taught him to communicate, he had far less outbursts. He never hits, kicks, or bites as some kids are described as doing. If he happens to be holding the item that frustrated him, he tossed it down. One time when this happened, he was playing on his Nabi Jr tablet. He was really enjoying the Nabi until the battery died. When the Nabi shut down, Pookie got frustrated and threw it onto the floor. That I could understand. He doesn’t have a grasp on the idea that the Nabi isn’t broken when the battery runs low. All he understands is that an activity he was enjoying is suddenly taken from him.

Often, we are able to circumvent the triggers that upset Pookie. One example being that I become more vigilant about keeping his battery operated toys charged up or have a supply of new batteries available at all times. When batteries need changed out, I have taught him to bring the item to me instead of getting upset. It took time, but was within his ability to learn.

We can go more than a week without any anger meltdowns. As of today, he hasn’t had one of those meltdowns in over 4 months. Does he get frustrated or irritated? Of course he does. But he isn’t violent about his anger.

The point that I am trying to convey is that not ALL autistic children grow up to be violent people. I know that it does occur in some cases, but there are so many other cases where the violence is not present. I am so tired of hearing people say, “Just you wait until he reaches puberty. Then you will see him go from being the happy kid to a hateful monster.” Yes, I actually had that said to me recently by another parent of an autistic child. It broke my heart to hear her refer to her own child as a hateful monster. I had to wonder if her child ever picked up on that. I know that Pookie is very tuned in to my moods. He is more apt to have a cranky day if I am having a bad day. If my day is going calmly, then his does as well. I can’t imagine what this lady’s attitude could be doing to her child.

When you hear the stories of out of control autistic children, listen with the understanding that you are only hearing about that one child. Consider it this way. Would you want society to be judging your child by the behavior of the juvenile delinquents you hear about on the news? Would you want others to talk about your child as though he/she was a drug addict or gang member just because they hear about so many kids who are in those categories? The media loves to showcase the extremes in anything. If the media were to be believed, nearly every child grows up to be in trouble with the law. But is that truly the case? Or are we only hearing about the ones who actually get into trouble? It is no different to those of us with children who have autism. Most of us do not have the problems with out of control kids. We are not saying that our children are completely perfect and never have a bad mood. We only want people to understand that the extreme stories you hear in the media, including social media, does not represent our autistic child.

Read Full Post »

Teaching Generosity

The crazy season is upon us. That is what I call it anyways. That season of time when people are becoming almost neurotic over holiday preparations, gift shopping, and attending every holiday event possible. The stress can be high for even the most calm souls. In that time of controlled chaos, what message are we sending to our children? Knowing that they learn from example, are they seeing only the hectic and harried side of the holiday? Or are they being shown the side that promotes charity and compassion?

In our home, we make as many of the gifts by hand as possible. We want the children to learn the value of giving of their time and talents. We have done it this way for the past couple of years since we began keeping the Christmas holiday. In the middle of this, a wonderful thing has happened. Little Miss is learning generosity.
It is too soon to know how much Pookie is learning. But, being that he has no real emotional attachment to most things, he does give to others easily. It is only a matter of knowing how aware he is of what he is doing when he gives things he makes to those around him.

One of the benefits of teaching the children to make their gifts is that they have to use their own time and talents. This has several benefits. Using Little Miss as an example, let me share some of the benefits. First, she has to hone her skills to do her best work on a gift. She always wants her gift to be the best that she can make. So, she spends a lot of time practicing how to do new crafts and use new to her art techniques. Once she chooses a gift to make, she plans it out and works on it to the best of her ability. She takes great care in it. One day, this same trait will serve her well in her chosen career path. Secondly, by putting so much work into her gift, she has developed an appreciation for the gifts that she receives from others. Especially anything handmade. She knows from experience just how much time and work goes into making gifts. That experience has taught her to value the fact that others’ have done the same for what they give her. This carries over to store bought as well. She understands that the person has taken time to plan out what they bought and has matched the gift to what they think she will enjoy the most. This is very true of gifts made or given by someone that she knows has little themselves. Some families that we know are really struggling to make ends meet each month. Little Miss highly values time spent with them and is deeply appreciative of anything they do for her. Another benefit is that the kids are learning to value the time and talents of others more than the price tag of the gift they receive. If it takes Little Miss a few days to make a set of potholders for a gift to a neighbor, then she can appreciate the gift’s value that doesn’t come from a store tag. She knows how much hard work and time went into making a gift. She knows first hand that to spend time and talent making something has a value that you cannot put a price tag on.

Our way of celebrating may not be what everyone would choose. We chose this way as our way of honoring the meaning behind the season. Christ gave of Himself to all mankind. By making our gifts, we are giving of ourselves to others. We are sharing in our time and talents. If we have opportunity to serve with a charity, then that too becomes a way to be the hands and feet of the Lord in the holiday season. My husband was against the celebrating of Christmas when we first got together. He disagreed with the commercialism of the holiday which took away focus to why we celebrate Christmas. Once he learned of what the church taught on this topic, we came to a compromise. We celebrate the birth of our Lord at Christmas. We make sure the children know that this is the reason behind the celebration. We also don’t go into debt with credit cards or small loans to buy gifts. Instead, we give of ourselves through the making of as many of the gifts as possible.

The results have been a blessing to our family. We see a maturity in Little Miss where generosity is concerned. She has things which she values, but is always willing to give it to someone else if they need it more than she does. That has become a blessing of the season that was a precious gift to see as a parent. I love how the Lord has shown us how to use the celebration of Christ’s birth as an opportunity to teach our children selflessness towards others.

Read Full Post »

When you become a Momma, you are filled with dreams. From the moment that you learn of your pregnancy, you start thinking about your child and the life they may have. If you already have children, you think about how the new baby will grow up with their siblings, building bonds that will last throughout their life. You think of the children playing together and at times conspiring together. Of course, being siblings they will experience the occasional rivalries or times of angst. But overall, the bond you dream for them will be strong enough to withstand what the world throws their way.

When your baby is born, you are ecstatic. You cuddle your little one close and continue to have dreams. Play dates and parties, along with the fun times you will have as a family and the children have with their friends drifts through your mind. You have friends who have children of their own. You talk and share in the joys and challenges of parenthood. Throughout it all, you feel the bond of friendship, a sisterhood, with them.

Then comes the day when you get the news. You learn that your precious little one has been diagnosed with Infantile Autism. Soon, there are therapy appointments, doctor visits, and home therapies that begin to take priority in your family’s life. There are meltdowns and seemingly irrational fears or distress from your little one that are painful to watch. But as Momma, you have to face it all with a steadiness that will provide a calming balm to your little one. You balance your time so that you not only give the little one all that they require, but time to the rest of your family as well. At times, it can feel like you are walking through an emotional minefield. All of your family needs your attention, each in their own way, and you pray that they allow you to take care of their needs one at a time. You carve out times for each child so that none feel slighted.

Your friends offer supportive comments when they see you out and about. At first, you take them seriously when they say, “If you ever need me – even just to talk – give me a call.” Your eyes get opened up pretty quickly though when you do reach out. Unanswered texts or unreturned calls are not unusual. You don’t reach out but rarely because you know that people without a special needs child have no understanding of what you are dealing with on a daily basis. They may mean well and can have compassion, but they just don’t get it. They have not lived with a child who is severely delayed in their development. They haven’t experienced first hand what it is like to have a child who screams or cries in frustration because they cannot communicate to you a need that they have. They haven’t tried to go to the store to do some necessary shopping, only to leave you cart behind because the stimuli in the store was more than your little one can endure. They don’t know how inadequate a parent can feel at those moments when their child is having a meltdown from over stimulation and others are less than compassionate towards you and your child. In the middle of all the chaos are the siblings who you also have to reassure. In the beginning, the reassurances are needed much more than later. Sadly, the siblings gain an acceptance that meltdowns can happen. In a way, it is a relief though when they make that realization.

The times of stress, when you are dealing with new behaviors or meltdowns are happening over new situations, you want to reach out. But to whom to you go? By this time, you have already learned that people want to hear that all is well and don’t want to hear about a difficult day. You have heard, “You are such a strong woman” so many times that it is no longer a comfort but another weight around your shoulders. You want to tell them that you are not strong enough to face these situations alone. No, not because you are suffering from depression . It is simply that people were created to be relational. We crave, by our own nature, the companionship of friends. Think of all the times when simply talking with a friend made a tough time a bit easier. They may not have eliminated the cause of your stress, but just being able to talk it out gave you relief. A Momma of a special needs child is no different. We have had to mourn the dreams of what could have been and accept what is. We have to develop new dreams for our child that are more in line with their true potential. That is painful! It puts an ache into your heart to go from a dream of college for your child to praying that they will one day be able to live in an assisted living home and not a full care nursing home.

There is no more times of meeting up with a friend for coffee. You find that suddenly everyone is too busy. Some of the people whom you always thought of as friends turn out to be the fair weather variety. They are there when all is well before you had your little one, but suddenly have too much going on once your special needs child came along. One of the things that I found is that these friends really don’t mean to stay away or ignore you. They really do have other things on their mind, For some, they may be uncomfortable with the realities of the special needs. They don’t understand it and so avoid it. Then there is a classic reason known as “out of sight, out of mind.” They don’t intend to alienate you, they just get so focused on their own life that they forget you are there until they see you again. It isn’t anything to put blame on. It is simply a reality. Just as the sun comes up in the east each morning, people will let you down.

One of the replies that has me mentally shaking my head is when people tell me, “Stay in prayer because the Lord will always give you strength.” Yes, that is true. But, let me ask this. What if the way the Lord helps to strengthen us in difficult days is the reaching out of a friend? A common saying in churches is that “we are the hands and feet of the Lord.” This meaning behind this being that it is through using us that the Lord can bring about blessings to others. What if, it is through you making a phone call that the Lord is able to help lift the spirits of someone having a bad day? What if, it is through just a simple text message or email that the Lord helps someone to not feel like they are walking the path alone? What if?

It is the little things that can make the rough days feel lighter. Yes, the special needs issues will always be there. Truly knowing deep down in your heart that you have a strong support system through your friendships can make it much easier to manage. It doesn’t take much. A simple card or postcard in the mail, a phone call, a text, or even a hug when you see the friend can lift the weight of the stress for that moment in time. The real gift then becomes the moment that you, the parent of a special needs child, have that peace in your heart. Placed there by the Lord through the love and compassion of people in your life that are genuine in their feelings. That is the gift. It is also one of the most rare jewels you will ever achieve in your life.

Read Full Post »

This past month has been one with a huge leap forward for Pookie.  He began feeding himself finger foods and with aid would use a fork or spoon.  Yesterday, he finally began to eat with a fork completely on his own!  No one had to help him hold the fork or assist in getting his food onto the fork.  He did it completely by himself!

Having a child with severe autism, you never take for granted the steps they take towards independence.  With each step that they take forward, they gain a confidence that cannot be gained in any other way.

Mealtimes used to be a time of stress.  Pookie would try to indicate what he wanted, then get upset if you didn’t give him a bite of the specific piece of food he was pointing to.  He also became upset if you didn’t give him a bite as quickly as he wanted.  It took a while for him to accept that he had to take turns, allowing you to have a bite of your own meal in between him being fed his meal.

Now that he is feeding himself, he is happier at mealtimes.  He sets the rate at which he is fed and can choose which piece of food to eat.  He has control of his meals.  During this past week, he has stopped using a booster seat at the table also.  This has him very happy as well.  He is able to leave the table on his own when he is done eating.

The best response I have heard all week to Pookie’s achievements has been from Little Miss.  When she watched her little brother feeding himself independently, he became teary-eyed and said, “God answered our prayers.”

Read Full Post »

Older Posts »