When you have a child with developmental delays, you have the unique experience of raising that child with a series of strangers. From the moment your child is identified as different and in need of help, your life and your child's is no longer wholly your own. Strangers come into your home with advise and "homework". Doctors "monitor" and advise. It is an ongoing, seemingly endless process.
The process started with the doctors asking very personal questions about our child and our family. Did you smoke? Did you drink? Was he around lead paint? Does mental illness run in your family? (Not until we started this process!) Does mental retardation or learning problems run in your family? Did you do this? Did you do that? It was all a bit overwhelming and definitely intrusive. The doctors ordered tests and made referrals. We kind of stumbled along through the process because this was all so new and different from what we were used to.
After the questions and the testing, a "team" of professionals were assigned to our child along with a case manager to supervise the whole process. In my son's case, he had a primary doctor, a pulmonary doctor, a neuro-developmentalist, a physical therapist, an occupational therapist, and a speech language pathologist. When he was nine months old, the three therapists started coming to our house once a week for individual therapy sessions. Let the fun begin!
It is such an odd experience allowing total strangers into your home three times a week to work with YOUR child to tell you what to do with and for YOUR child. One of the therapists, bless his heart, didn't even have children of his own. Yet, he was offering me advise on how to parent my distractable, impulsive son. I learned to nod my head, store the little gems of advise somewhere in the back of my head, and then go forward with what we had learned through trial and error really worked.
One particularly frustrating example came about with our occupational therapist. An occupational therapist is supposed to work with a child's fine motor (hand) skills, preparing the child to write, button buttons, tie shoes, etc. Our occupational therapist spent a lot of time on "sensory stimulation" including having our son crawl through a tight, material tube, roll back and forth on nubby material, and use a jiggle ball or wand. "Research" told him that these things helped stimulate a child to improve his fine motor skills. I sat through these sessions thinking, "Work with his hands! Teach him to button his shirt! Help him learn to eat with utensils! I can 'stimulate' my child without your help but I can't seem to get him to do these other things." My husband always managed to find something else to do during these sessions which was for the best. He would have said out loud what I was thinking in my head.
When our son turned three, he had hit a short developmental burst just in time for him to transition from the early childhood program to the preschool program. These programs are run by two separate entities. To transition from one to the other, it required more testing, a case manager, paper work, etc. We debated if we even wanted to continue with this intrusion into our lives. We decided to see what came of the process.
After testing him, the preschool program decided that he no longer qualified for services. I questioned the issues he was still presenting and the concerns that his neurologist still had with his development. The case manager gave me an explanation about the difference between "medical qualifications" and "educational qualifications". I'll be honest. I'm a highly educated woman and it still makes no darn sense to me. If a child needs help, they need help. Period. End of story. She went on to explain that if she separated his expressive language from his receptive language, he may qualify for services but only for speech. Fine. Okay. Something is better than nothing. Then she explained that their hours of therapy services were only from 9am - 3pm. Gee. How convenient! My husband and I both worked first shift. How were we supposed to make that work? His neurologist wanted him in a preschool program to address the developmental concerns that she had identified but we couldn't afford to pay for private therapy out of pocket. No way. Not even an option. So we decided to give it a year and see what happened. Maybe he just needed time to grow and develop.
As I've written in the past, that year without therapy was a huge mistake. It was denial on our part of the severity and reality of what we were dealing with. We just wanted him to be okay, to be "normal". When it became evident that the "time off" had been a mistake, we recontacted the preschool entity and asked them to re-evaluate him. Same results. Same explanation. What were we going to do? Someone recommended taking him to Geisinger to the children's hospital out-patient therapy center. So we called and had him evaluated. Difference between "medical qualifications" and "educational qualifications"? At Geisinger, he qualified for all three services again (OT, PT, and speech). Yeah! Now we could get him what he needed to get him ready for school.
A new problem presented itself. Our insurance only covered 45 therapy sessions a year. That would be about 15 weeks of therapy. Now what were we going to do? The people at Geisinger said we needed to get him medical assistance through the medical loop hole. Needless to say, this experience definitely took me outside my comfort zone. It was embarrassing to have to apply for medical assistance and ask for help in this way. THAT process was a real eye opener but it was our only option. It was also the best decision we made through this whole five year long circus. The people at Geisinger are true professionals. The progress that he has made over the last year and a half with them is phenomenal.
When it came time to start school, we decided to wait and see how things developed. The day after kindergarten testing, the principal called identifying that the testing team had some concerns regarding our son's test results. (Yeah. I was expecting that.) At that point, I filled him in on the situation. He assured me that they would have to do further testing and get something in place to ensure that he was successful in school. True to form, this process has been anything but simple. It is the end of November and we are just now getting an IEP in place. Ironically, in the meeting last week, I got the same explanation about "educational qualifications" versus "medical qualifications". Still doesn't make any sense to me.
What I do know is that I will continue to fight for my child. He will not fall through the cracks. He will be successful. I'll see to it. There is nothing more important.
*** (My disclaimer) *** The therapists, doctors, and educators who have worked with my son through the years have done so with dedication and genuine affection for my child. It is the system that frustrates me, not the individuals working within the system. For them, I have nothing but love and respect. I am grateful for the time, energy, and efforts that they have put forth on behalf of my child.
Sunday, November 20, 2011
Friday, November 11, 2011
Guilt
I've known all my life that I wanted to be a good teacher and a great mom. Never any question. I'm one of those annoying people with a five year plan and a vision of where my life should be going. Ironically, when one of your lifetime goals is to become a "great mom", there is a degree of self-inflicted pressure. In addition, anyone who has children can probably tell you that children are great at making you feel guilty and unsure. It is their super power.
I remember weeks when my youngest was in the middle of a particularly bad asthma flair. Night after night, I would sleep in the recliner with him. By sleeping in the recliner, I could keep him in a more upright position and when he went into bronchospasm, I already had the equipment set up and could give him his next treatment within minutes. Every three hours we would wake; do a breathing treatment; then dose off again. The next morning I would drive to work on three or four hours sleep and teach court committed females all day. Then I would come home and start the whole process all over again.
In spite of this degree of commitment to my child, I would feel guilty because of the little things that I couldn't do. I remember feeling terribly guilty because when my oldest was in day care, I would make chocolate covered Nutter Butter cookies that I hand dipped and decorated to look like groundhogs for Ground hog's Day. When my youngest was in day care, I never seemed to get it done. I always felt like I was letting him down.
Reality check: When I asked my oldest if he remembered me making those cookies for Ground hog's Day, he stated "Not really." So did I really let my youngest down by failing to make those cute little cookies because I had done it for his brother? Heck no!
Our oldest son has always taken part in any sport or activity that he expressed an interest in joining. In the past, he has taken gymnastics and horseback riding lessons. He currently plays private league soccer and percussion in the band. We have never missed a game. His father takes him out hunting. At the age of ten, he has already killed his own turkey, deer, ground hog, and several squirrels. All this in spite of the fact that he had a brother with developmental delays that required three therapists come to our home for weekly therapy sessions in occupational therapy, physical therapy, and speech therapy. Yet, I feel guilty because I sometimes feel like too much of my energy goes into helping his brother stay healthy and meeting developmental goals. At times, I feel like my oldest doesn't always get the attention that he wants or deserves.
Reality check: My oldest is loved and sometimes even slightly over indulged. He is successful in school and in social situations. He is polite and usually well behaved. Unlike many of his best friends, he may not have all the latest gadgets and gizmos but he has our time and attention. We read with him; attend his school and sporting events; and listen to his never ending chatter. Boy is he a talker!
It's funny. Whether your child has special needs or ordinary needs, being a parent means finding the balance in everything. Having my youngest child has taught me to take life a little slower. Enjoy the journey. There is enough guilt and blame to go around when it comes to parenting but if love and genuine concern for your child are at the center of everything that you do, then you are going to be okay. Maybe not "great" but good may have to be good enough.
Thank you God for the lessons that my boys continue to teach me. Help me recognize when guilt is getting in the way of making the best decisions as a wife and as a parent. Please continue to guide me on this journey.
I remember weeks when my youngest was in the middle of a particularly bad asthma flair. Night after night, I would sleep in the recliner with him. By sleeping in the recliner, I could keep him in a more upright position and when he went into bronchospasm, I already had the equipment set up and could give him his next treatment within minutes. Every three hours we would wake; do a breathing treatment; then dose off again. The next morning I would drive to work on three or four hours sleep and teach court committed females all day. Then I would come home and start the whole process all over again.
In spite of this degree of commitment to my child, I would feel guilty because of the little things that I couldn't do. I remember feeling terribly guilty because when my oldest was in day care, I would make chocolate covered Nutter Butter cookies that I hand dipped and decorated to look like groundhogs for Ground hog's Day. When my youngest was in day care, I never seemed to get it done. I always felt like I was letting him down.
Reality check: When I asked my oldest if he remembered me making those cookies for Ground hog's Day, he stated "Not really." So did I really let my youngest down by failing to make those cute little cookies because I had done it for his brother? Heck no!
Our oldest son has always taken part in any sport or activity that he expressed an interest in joining. In the past, he has taken gymnastics and horseback riding lessons. He currently plays private league soccer and percussion in the band. We have never missed a game. His father takes him out hunting. At the age of ten, he has already killed his own turkey, deer, ground hog, and several squirrels. All this in spite of the fact that he had a brother with developmental delays that required three therapists come to our home for weekly therapy sessions in occupational therapy, physical therapy, and speech therapy. Yet, I feel guilty because I sometimes feel like too much of my energy goes into helping his brother stay healthy and meeting developmental goals. At times, I feel like my oldest doesn't always get the attention that he wants or deserves.
Reality check: My oldest is loved and sometimes even slightly over indulged. He is successful in school and in social situations. He is polite and usually well behaved. Unlike many of his best friends, he may not have all the latest gadgets and gizmos but he has our time and attention. We read with him; attend his school and sporting events; and listen to his never ending chatter. Boy is he a talker!
It's funny. Whether your child has special needs or ordinary needs, being a parent means finding the balance in everything. Having my youngest child has taught me to take life a little slower. Enjoy the journey. There is enough guilt and blame to go around when it comes to parenting but if love and genuine concern for your child are at the center of everything that you do, then you are going to be okay. Maybe not "great" but good may have to be good enough.
Thank you God for the lessons that my boys continue to teach me. Help me recognize when guilt is getting in the way of making the best decisions as a wife and as a parent. Please continue to guide me on this journey.
Sunday, November 6, 2011
Finding Joy When and Where You Can
It was the perfect day. It hadn't gone off without a hitch but that didn't matter. It was recognizing the perfection of the moments for what they were. You may be surprised by my definition of perfection.
My day started with my husband getting up with the kids and letting me sleep in. Then our oldest cooked breakfast for the family. The kids played together while we completed household chores. After lunch, my husband and our youngest went hunting together while I paid bills and my oldest and our niece played at home. Both sets of grandparents dropped in to see our niece and the boys at some point during the day. Later, we took the kids to Hooplas to play arcade games and mini bowling before eating dinner. On the way home, we looked for deer. Our day ended by putting the kids to bed, having a bowl of ice cream, and going to bed. It was all very ordinary and to some, boring. But that's because they aren't finding joy when and where they can.
What some would fail to see is the perfection in the little things. My children are well trained. When they get up, whether it be in the middle of the night, or in the morning, they come get me. I'm usually the one who gets them medicine, breathing treatments, breakfast, or a drink. This morning, my husband heard them get up and headed them off at the pass. I had had another optical migraine that had me up in the middle of the night. So instead of letting them wake me as usual, he got up with them and kept them quiet and entertained until I woke up. It was a real joy and unexpected treat.
The joy of our oldest cooking the family breakfast was the significance of the moment for me as a mother. It has always been our goal as parents to prepare our boys for independence. Our oldest son has recently begun experimenting with cooking. He is becoming more and more adept. This is important. We expect him to leave our home; go to college or some other form of training; and then find independent employment. He will need to be able to care for himself, which includes feeding and cleaning up after himself. It is encouraging to see him begin to enjoy the process of developing future independence. I can only pray that he finds a wife who is equally prepared so that they can work as partners in their new life together (may that be decades from now!!)
Our youngest went hunting with my husband for the first time this weekend. It was a simple excursion over to his grandfather's woods to go squirrel hunting. No big deal. But for him it was. Our oldest had been out in the woods dozens of times by this age but we had never trusted our youngest enough before now. His lack of danger awareness paired with his impulsive nature aren't exactly the best combination for a future hunter. Recently though, we have seen big developments, improvements, and signs of maturity in this little man. After talking, we decided it was time to give it a try. I'm so glad we did. He sat out in the woods with his Dad for nearly two hours. They never saw a single squirrel but that wasn't the point. The point was laying the foundation for future trips. Not to mention the fact, that he got to do this all by himself with Daddy. This time, HE was the big boy. In a little guy's world, that's big stuff. He told everyone who would listen this weekend that he got to go hunting with his Dad. That's pretty cool.
At Hooplas, our oldest went off on his own. My husband took charge of my niece, keeping her entertained, and trailing our oldest without infringing upon his independence. That left me free to focus all my energy on our youngest. In the past, when we have gone to Hooplas, we usually try to go at times when it is less crowded and hectic. The environment of this place usually makes my youngest child become a manic ping pong ball. This time, it was crowded. Instead of his typical manic running from game to game, this time, our youngest carefully chose which activities he wanted to do. He took his time and actually seemed to enjoy everything he did. Often, he lacks the skills to complete some of the activities or play some of the older games. Today, with his new focus, he was able to play games that were usually too hard for him. He was so proud of himself! And so was I.
Throughout the day, our boys and our niece played together nicely. Any parent can tell you that a day when your children play together peacefully with minimal fighting is a great day. Not only did they play together nicely, they supported one another. Outside, the older ones looked after their cousin. They were calm and gentle in their interactions. Those that know my boys know that calm is a miracle in itself! They read stories together. And on the trip to and from Hooplas, there was no fighting. This is the biggest miracle of all. Trips in the vehicle with my boys are usually a nightmare. We have often wished for Nascar style roll cages to be installed in the backseat so they couldn't see, hear, or reach one another. On the trip home when they sat in the backseat together singing songs, I actually started crying. It was truly the end of a very nice day.
At the end of the day, after reflecting upon all the fun we had had together, I realized one thing. I was more in love with my husband than ever. His help and our working as a team is what had made it go so smoothly. This day was better than fancy gifts or expensive vacations. It had truly been a "perfect day".
Thank you God for the ability to recognize the "perfect" moments in our life. Thank you for a loving partner who is invested in making this family work. It isn't perfect... but it is for us.
My day started with my husband getting up with the kids and letting me sleep in. Then our oldest cooked breakfast for the family. The kids played together while we completed household chores. After lunch, my husband and our youngest went hunting together while I paid bills and my oldest and our niece played at home. Both sets of grandparents dropped in to see our niece and the boys at some point during the day. Later, we took the kids to Hooplas to play arcade games and mini bowling before eating dinner. On the way home, we looked for deer. Our day ended by putting the kids to bed, having a bowl of ice cream, and going to bed. It was all very ordinary and to some, boring. But that's because they aren't finding joy when and where they can.
What some would fail to see is the perfection in the little things. My children are well trained. When they get up, whether it be in the middle of the night, or in the morning, they come get me. I'm usually the one who gets them medicine, breathing treatments, breakfast, or a drink. This morning, my husband heard them get up and headed them off at the pass. I had had another optical migraine that had me up in the middle of the night. So instead of letting them wake me as usual, he got up with them and kept them quiet and entertained until I woke up. It was a real joy and unexpected treat.
The joy of our oldest cooking the family breakfast was the significance of the moment for me as a mother. It has always been our goal as parents to prepare our boys for independence. Our oldest son has recently begun experimenting with cooking. He is becoming more and more adept. This is important. We expect him to leave our home; go to college or some other form of training; and then find independent employment. He will need to be able to care for himself, which includes feeding and cleaning up after himself. It is encouraging to see him begin to enjoy the process of developing future independence. I can only pray that he finds a wife who is equally prepared so that they can work as partners in their new life together (may that be decades from now!!)
Our youngest went hunting with my husband for the first time this weekend. It was a simple excursion over to his grandfather's woods to go squirrel hunting. No big deal. But for him it was. Our oldest had been out in the woods dozens of times by this age but we had never trusted our youngest enough before now. His lack of danger awareness paired with his impulsive nature aren't exactly the best combination for a future hunter. Recently though, we have seen big developments, improvements, and signs of maturity in this little man. After talking, we decided it was time to give it a try. I'm so glad we did. He sat out in the woods with his Dad for nearly two hours. They never saw a single squirrel but that wasn't the point. The point was laying the foundation for future trips. Not to mention the fact, that he got to do this all by himself with Daddy. This time, HE was the big boy. In a little guy's world, that's big stuff. He told everyone who would listen this weekend that he got to go hunting with his Dad. That's pretty cool.
At Hooplas, our oldest went off on his own. My husband took charge of my niece, keeping her entertained, and trailing our oldest without infringing upon his independence. That left me free to focus all my energy on our youngest. In the past, when we have gone to Hooplas, we usually try to go at times when it is less crowded and hectic. The environment of this place usually makes my youngest child become a manic ping pong ball. This time, it was crowded. Instead of his typical manic running from game to game, this time, our youngest carefully chose which activities he wanted to do. He took his time and actually seemed to enjoy everything he did. Often, he lacks the skills to complete some of the activities or play some of the older games. Today, with his new focus, he was able to play games that were usually too hard for him. He was so proud of himself! And so was I.
Throughout the day, our boys and our niece played together nicely. Any parent can tell you that a day when your children play together peacefully with minimal fighting is a great day. Not only did they play together nicely, they supported one another. Outside, the older ones looked after their cousin. They were calm and gentle in their interactions. Those that know my boys know that calm is a miracle in itself! They read stories together. And on the trip to and from Hooplas, there was no fighting. This is the biggest miracle of all. Trips in the vehicle with my boys are usually a nightmare. We have often wished for Nascar style roll cages to be installed in the backseat so they couldn't see, hear, or reach one another. On the trip home when they sat in the backseat together singing songs, I actually started crying. It was truly the end of a very nice day.
At the end of the day, after reflecting upon all the fun we had had together, I realized one thing. I was more in love with my husband than ever. His help and our working as a team is what had made it go so smoothly. This day was better than fancy gifts or expensive vacations. It had truly been a "perfect day".
Thank you God for the ability to recognize the "perfect" moments in our life. Thank you for a loving partner who is invested in making this family work. It isn't perfect... but it is for us.
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