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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.
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.
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.
Had a beautiful day today so the kids and I went outside to start garden seeds in the seed starting trays. It is still too early yet to plant in the ground but this will give us a head start.
Little Miss planted some corn and pumpkin. She hopes to get enough pumpkins to sell some next autumn as a fund raiser for a church camp she attends. She also planted sugar pod peas, which we love to snack on.
Pookie helped me to plant various types of squash, cucumbers, tomatoes for canning, and some grape tomatoes for salads and snacking.
After we were done, Little Miss found a few flower pots to plant marigolds, morning glory, and lavender into.
Having the kids helping to plant the seeds was a fun project. I intend to transplant a sugar pod pea and grape tomato plant in their yard for them to enjoy. As soon as the weather is warm enough, we will plant some climbing green bean plants as well in their yard and maybe a strawberry patch. I remember as a kid, going over to the family garden and picking a handful of green beans, peas, or some other treat to snack on. Having a mini garden in their yard will encourage the fun and healthy snacking.
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!!!
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.