I'm woken from a sound sleep by that now familiar cough. It's that tight, bronchial, asthma cough. He's made his way downstairs to my room and is standing beside my bed waiting for me to help him. As I begin to pull on warm clothes, he starts to whimper and the coughs are coming closer together. I quickly get out the emergency kit that I keep behind the couch for moments like this. Okay, calm down. Pull out the nebulizer and plug it in. Check the air tubing for bends, kinks, or moisture. He's starting to cry. Crying is the worse thing he can do right now. It makes him cough more, produces more mucus, and makes me feel more panicked inside. Making soothing noises and telling him to breathe slowly and stop crying, I pull out a new pack of Albuterol vials and tear one off. Attach the breathing chamber, open the Albuterol vial, and squirt in the liquid. Ready. Pull him onto my lap. One last wipe of the eyes and nose. Turn on the machine and hope it does the job. He's so panicked at this point that he's actually trying to fight me giving him the treatment. Stay calm. Hold his arms out of the way of the steam and medicine. Make soothing sounds. Wait for it to start to work.
Slowly, the coughing begins to decrease. Gradually, our heart rates begin to slow. Eventually, as the steam begins to lessen, his head starts to nod against me as he gives into exhaustion. There's very little coughing now. It feels like it took an hour but it was actually less than fifteen minutes from beginning to end. I turn off the machine; pick him up; and carry him back up to bed. While tucking him in, I coach him on our now familiar mantra. "Sleep on your side, not your back. If you start coughing, come get me. Try to sleep for a little bit." Exhausted, I head back to bed. I know we'll be doing this again in three hours. I HATE asthma.
There is something very isolating about being awake with a sick child in the middle of the night. We live in a time with phones and Internet, yet being up with a child who can't breathe during those darkest hours makes you feel very alone. The situation always seems more intense, more foreboding at night. My husband can be sleeping in the next room as I administer the treatments but it stills feels scary and overwhelmingly lonely. What if the treatment doesn't work this time? What if he can't make it the four hours until his next treatment can be administered?
During one of his prolonged asthma flairs, when we have been doing breathing treatments every four hours for days, I resort to keeping notes in a notebook. Exhaustion keeps my mind from functioning properly and the days and nights begin to blend into one another. I have to write down what meds he received; what dosage he received; and what time he received it and can have it again.
I have had to become an expert on my child's condition. What are his typical symptoms? What meds and at what dosage works best for his symptoms? When should the meds or treatments be administered? At what stage do I break down and call the doctor? Which doctor do I contact, his primary or his pulmonologist? I've had to learn to be his advocate and speak up for what I want for him.
When we came home from the hospital with my youngest child, I knew something wasn't right. Newborns typically have sneezing, wheezing, coughing, and snorting. They are adjusting from a liquid environment inside mom, to a dry environment outside of mom. My youngest didn't stop exhibiting those symptoms. I would lie awake at night and listen to him breathe, knowing something wasn't right. At two weeks of age, after he stopped nursing, I took him into the doctor. He was diagnosed with his first ear infection and "reactive airway disease". Infants cannot be diagnosed with asthma because it can't be confirmed or ruled out at this age. Instead, they are given the diagnosis of reactive airway disease until they outgrow the phase or until they are old enough to have more formal tests conducted.
Needless to say, my youngest has not outgrown the phase and has been diagnosed as a chronic asthmatic. When he was an infant, he was on preventative oral steroids to reduce the inflammation of his airways and reduce the mucus production of his airways. They caused him to retain fluid and "puff up". He looked like a BIG Gerber baby. (I took his picture and put it on the side of food items as presents for people at Christmas that year - my weird sense of humor) He weighed twenty-seven pounds at nine months of age. Unfortunately, the extra size did not help his gross motor and fine motor delays. They only contributed to them. At five months of age, I questioned if there was something different we could do for him. They then switched him from the oral albuterol and oral steroid to an inhaled Albuterol and an inhaled steroid. Pulmicort is an amazing drug. It did wonders for him. It helped to reduce the frequency of his illnesses and allowed him to begin to lose some of the fluid weight that he had packed on.
Three sets of ear tubes, helped reduce the number of asthma flairs that we experienced. An ear infection would set off a sinus infection, which would set off an asthma flair that could take days or weeks to end. We also had to learn to advocate what we needed in this area as well. Requesting a referral to the ear, nose and throat specialist. Keeping track of how many ear infections he had had in a specific time span. (Twelve ear infections in six months) What meds had worked and not worked. (No to Amoxicillin and Zithromax, yes to Cefprozil and Bactrim) Requesting a longer time span of meds rather than a shorter one. For example, a five day Zithromax dose was not adequate in time or dosage to completely cure a sinus/respiratory infection. Symptoms would abate but not cure and in a week to ten days, he was sick again with the same symptoms. We had to learn to tell our primary, "No. That med doesn't work for him. If you use that med, we need it for twenty-one days, not ten days." or "No. That med causes diarrhea and stomach discomfort. Please use Cefprozil instead." Our pulmonary doctor got to the point where I could call him, describe symptoms and he knew what I was working with. He went so far as to give me a standing order of Bactrim to keep on hand. He knew I was only going to give it to him as a last resort when I had utilized all my other options. That is the benefit of educating yourself and learning to advocate for your child.
Trial and error and our pulmonoligist's advise has helped us develop a number of preventative and early stage treatment options that we routinely utilize. During the winter months, our hands are raw from all the hand washing we do. As stated earlier, we use preventative meds like the inhaled steroids. We also switched him from Allegra to Singulair. If symptoms begin to emerge, we elevate the head end of his bed on wooden blocks. We start to run a humidifier in his room at night and on the first floor during the day. He gets two squirts of saline spray up each nostril in the morning and at night. When serious symptoms start, we increase the saline to every hour or two. During times of illness, his steroid dosage is doubled. Tussin is used to liquefy any sinus drainage (The step he is most resistant to!). As a last resort, Albuterol treatments are started and if progress is not made, an antibiotic is requested. These steps have become part of our normal existence. During especially bad winters or seasons, I start taking notes to share with his pulmonary doctor in case we need to "tweak" his meds or dosages.
As he has grown, his immune system has strengthened. We are able to prevent or head off most illness in their early stages. His asthma flairs have, for the most part, reduced in frequency and intensity. We have learned to advocate for our child and his needs. With that said, I stilll HATE asthma! I pray that one day he completely outgrows it. Or grows up, moves out, and has to manage it on his own. (small smile inside)
Thursday, December 29, 2011
Sunday, December 18, 2011
Tantrums
"Here we go again", I think with a sigh. Over-stimulated, over-tired, and just plain frustrated, my youngest child has thrown himself on the floor and begun to throw a full blown temper tantrum. I know what has set it off. Having gone through this many times before, I know how this is going to progress and what is required to get it resolved. Saying a quick prayer for patience, I get to work getting him calm and back in control of himself.
Before I go any further, I need to start with a short disclaimer. My children are many things. They are hyper. Very active. Creative and full of energy. Harnessed in the right way, it is wonderful. Without an appropriate outlet... exhausting. They are social. Everyone is a potential friend and they expect others to respond in the same way. They are intelligent and resourceful. What they are not, is purposefully rude or disrespectful, nasty or vindictive. They have rules and boundaries. We live with very specific routines. These routines are sometimes the only thing that gets us through a day, as my youngest is a "rigid learner". So as I tell you about my youngest child's tantrums, view them through this perspective, and not the viewpoint that he is spoiled or undisciplined.
Around the age of three, my youngest child started showing bursts of real cognitive development. It was around this time period that we started to realize that we were working with a very smart guy trapped in a body that wouldn't let him communicate effectively. He had begun to make some progress in his speech and communication skills but they still lagged significantly behind his cognitive and social skills. It was around this same time period that he started throwing temper tantrums. These tantrums were, and still are, a direct response to his frustration and belief that he "isn't being heard".
His tantrums always occur when he is either over-stimulated, over-tired, or both. By nature, he is a happy loving child with a ready smile and a tendency to tease. When he is tired or too wound up, he loses the ability to listen or rationally hear what he is being told. Once he hears something that upsets him, he fixates on that and "shuts down". He throws himself to the floor, yelling loudly. Often he will begin to repetitively repeat the same phrase over and over. For example, "No bedtime. No bedtime." over and over. You can attempt to explain that you only wanted him to go get a bath to be ready for bedtime. It isn't really bedtime yet. But he is beyond hearing you. If he has gone into a full blown tantrum, his eyes become glassy. He starts sweating and writhing around. He screams and growls. There have been occasions when he hit his head on the floor and never even realized it. It is awful and exhausting.
When he was four, the tantrums were happening at least once a week. They were almost always severe and usually right before bedtime, when he was exhausted. I would carry him up to bed and hold him as he screamed these guttural screams or growled with frustration. All I could do was hold him and silently cry and wait for the tantrum to end. Talking didn't help. It only prolonged the process. Singing or telling him you loved him further enraged him and made him angrier. The only thing that helped was silently holding him, to keep him from hurting himself, and letting him wear himself out. When it was all over, we would quietly talk about what had happened. We would talk about what we could have done differently. Skills or alternatives would be problem solved and rehearsed. Eventually he would need to "go fix the problem". That required apologizing to whoever he had upset or argued with, and trying to resolve the situation with that individual.
There are very specific things that I have learned work to help prevent these tantrums or to help him get back into control. These were learned through trial and error. The most important is not letting him get worked up or frustrated to the point where he can't pull himself back. This is hardest to accomplish when other people are involved. They don't always understand the consequences of keeping his behavior and his environment under control. Another important factor is watching for his signs of tiredness. When he is very tired, my youngest child gets loud and hyper. The more tired he is, the less in control of his volume, his movements, and his impulsiveness he becomes. When he begins to show these signs, it is time to get him to bed or get him somewhere quiet to rest and "decompress". A final important step is when he is frustrated with himself, or a situation, he needs to be coached to slow down, take a deep breath, and express himself clearly. Diligence with these preventative measures has significantly reduced the number and severity of his tantrums.
His tantrums have had an effect on the whole family. My oldest child had to learn to take himself somewhere else and take care of himself until the situation was resolved. Fortunately, he is old enough and mature enough to do this. That doesn't mean it isn't upsetting to hear your brother that frustrated. My husband initially had a very hard time dealing with the tantrums. He felt he should have been able to handle them better. My son has a tendency to respond better to me than him in this instances. Part of the problem is personality. They are natured too much alike. Part of the problem is training and experience. I have worked in corrections since 1998 and have had lots of training and experience in working with escalated youth. It just became easier for me to deal with it myself. I began to resent my husband's lack of involvement, while lamenting my inability to help my son. We began to function as pairs and individuals instead of a family. A very unhealthy dynamic. Fortunately, we came to recognize this dysfunction and worked to resolve it. Our family unit has gained strength through our adversity.
Having a son like ours, has also taught me to be less judgemental of other parents. I'm not living their life. I don't know what their circumstances are. Therefore, it would be remiss of me to begin to judge them as parents based on the behavior of their children. Appearances can be extremely deceiving.
Time, increased communication skills, diligent preventative measures, and working as a family has decreased our son's tantrums. He has fewer and fewer. The severity of those tantrums has dramatically improved. It has been months since he has had a full blown tantrum. Our teamwork and communication as a family until has improved significantly. We continue to work on making time for each other and recognizing the efforts that each of us put forth for the family. It's not perfect, but it sure is good.
Thank you Lord for the love of family. Please continue to give us patience and insight into our motives and our motivations. May we always do what is best for one another. As the Christmas holiday quickly approaches, I am very grateful for these three men and look forward to another year of learning and growing together.
Before I go any further, I need to start with a short disclaimer. My children are many things. They are hyper. Very active. Creative and full of energy. Harnessed in the right way, it is wonderful. Without an appropriate outlet... exhausting. They are social. Everyone is a potential friend and they expect others to respond in the same way. They are intelligent and resourceful. What they are not, is purposefully rude or disrespectful, nasty or vindictive. They have rules and boundaries. We live with very specific routines. These routines are sometimes the only thing that gets us through a day, as my youngest is a "rigid learner". So as I tell you about my youngest child's tantrums, view them through this perspective, and not the viewpoint that he is spoiled or undisciplined.
Around the age of three, my youngest child started showing bursts of real cognitive development. It was around this time period that we started to realize that we were working with a very smart guy trapped in a body that wouldn't let him communicate effectively. He had begun to make some progress in his speech and communication skills but they still lagged significantly behind his cognitive and social skills. It was around this same time period that he started throwing temper tantrums. These tantrums were, and still are, a direct response to his frustration and belief that he "isn't being heard".
His tantrums always occur when he is either over-stimulated, over-tired, or both. By nature, he is a happy loving child with a ready smile and a tendency to tease. When he is tired or too wound up, he loses the ability to listen or rationally hear what he is being told. Once he hears something that upsets him, he fixates on that and "shuts down". He throws himself to the floor, yelling loudly. Often he will begin to repetitively repeat the same phrase over and over. For example, "No bedtime. No bedtime." over and over. You can attempt to explain that you only wanted him to go get a bath to be ready for bedtime. It isn't really bedtime yet. But he is beyond hearing you. If he has gone into a full blown tantrum, his eyes become glassy. He starts sweating and writhing around. He screams and growls. There have been occasions when he hit his head on the floor and never even realized it. It is awful and exhausting.
When he was four, the tantrums were happening at least once a week. They were almost always severe and usually right before bedtime, when he was exhausted. I would carry him up to bed and hold him as he screamed these guttural screams or growled with frustration. All I could do was hold him and silently cry and wait for the tantrum to end. Talking didn't help. It only prolonged the process. Singing or telling him you loved him further enraged him and made him angrier. The only thing that helped was silently holding him, to keep him from hurting himself, and letting him wear himself out. When it was all over, we would quietly talk about what had happened. We would talk about what we could have done differently. Skills or alternatives would be problem solved and rehearsed. Eventually he would need to "go fix the problem". That required apologizing to whoever he had upset or argued with, and trying to resolve the situation with that individual.
There are very specific things that I have learned work to help prevent these tantrums or to help him get back into control. These were learned through trial and error. The most important is not letting him get worked up or frustrated to the point where he can't pull himself back. This is hardest to accomplish when other people are involved. They don't always understand the consequences of keeping his behavior and his environment under control. Another important factor is watching for his signs of tiredness. When he is very tired, my youngest child gets loud and hyper. The more tired he is, the less in control of his volume, his movements, and his impulsiveness he becomes. When he begins to show these signs, it is time to get him to bed or get him somewhere quiet to rest and "decompress". A final important step is when he is frustrated with himself, or a situation, he needs to be coached to slow down, take a deep breath, and express himself clearly. Diligence with these preventative measures has significantly reduced the number and severity of his tantrums.
His tantrums have had an effect on the whole family. My oldest child had to learn to take himself somewhere else and take care of himself until the situation was resolved. Fortunately, he is old enough and mature enough to do this. That doesn't mean it isn't upsetting to hear your brother that frustrated. My husband initially had a very hard time dealing with the tantrums. He felt he should have been able to handle them better. My son has a tendency to respond better to me than him in this instances. Part of the problem is personality. They are natured too much alike. Part of the problem is training and experience. I have worked in corrections since 1998 and have had lots of training and experience in working with escalated youth. It just became easier for me to deal with it myself. I began to resent my husband's lack of involvement, while lamenting my inability to help my son. We began to function as pairs and individuals instead of a family. A very unhealthy dynamic. Fortunately, we came to recognize this dysfunction and worked to resolve it. Our family unit has gained strength through our adversity.
Having a son like ours, has also taught me to be less judgemental of other parents. I'm not living their life. I don't know what their circumstances are. Therefore, it would be remiss of me to begin to judge them as parents based on the behavior of their children. Appearances can be extremely deceiving.
Time, increased communication skills, diligent preventative measures, and working as a family has decreased our son's tantrums. He has fewer and fewer. The severity of those tantrums has dramatically improved. It has been months since he has had a full blown tantrum. Our teamwork and communication as a family until has improved significantly. We continue to work on making time for each other and recognizing the efforts that each of us put forth for the family. It's not perfect, but it sure is good.
Thank you Lord for the love of family. Please continue to give us patience and insight into our motives and our motivations. May we always do what is best for one another. As the Christmas holiday quickly approaches, I am very grateful for these three men and look forward to another year of learning and growing together.
Saturday, December 10, 2011
Trying to Find the Balance
"Bye Mom" he yells as he runs across the road to the bus. I can't help but chuckle even as I sigh and feel that familiar tug in my heart. It is so difficult to find the balance between healthy independence and required diligent supervision. Often it feels like walking on a tight rope.
My oldest son got to play hookey from school on Friday to go deer hunting with his father. As a result, my youngest son would be getting on the bus by himself for the first time. For most kids this wouldn't be such a big deal. But as I have discussed previously, my youngest child lacks an awareness of danger and its consequences. Because of this, I was a little concerned with how this experience would unfold.
Friday morning, he and I got up and prepared for school and work as we always do. When it came time to go out to the bus, he thought he was big stuff because he got to sit up front in the car without his brother. Once we were parked at the end of the driveway and waiting for the bus, I talked to him about what I wanted him to do when the bus pulled up. Usually when the bus pulls up, his brother holds onto his backpack to hold him back because he becomes so excited to get on the bus and start his day that he starts running in place in anticipation of boarding the bus and going to sit with "his girls". On this day, his brother wouldn't be there to hold him back. I could have gotten out and waited with him but I saw this as an opportunity to encourage his independence. He and I discussed why he needed to wait until Mommy said "go" before crossing the street to board the bus. We talked about what he needed to do to wait and stay safe until the bus was completely stopped.
When the bus pulled up, he fumbled around as he always does while trying to exit the car. I coached him verbally on what I wanted him to do. As always, he stood there next to the car, excited and running in place. But today,instead of being held back by his brother, he touched the car and held onto the cardoor until I told him "go!". When I told him to go, he ran across the road, soooo excited because he was getting on the bus by himself. I laughed out loud at his enthusiasm. Inside, I also felt a small pang of regret. My baby had reached another milestone. What a beautifully sad moment.
There are so many moments like this with my youngest child. Balancing our need to keep him safe with our need to encourage his independence. We want him to run and play with his friends at school. Yet we shake our heads in frustration, when he comes home from school in different clothes because he fell on the playground and got soaking wet. We want him to be social and learn how to interact with others outside his normal "circle". Yet we hesitate for fear he will be rejected or ostrasized by others who see him as different. We want him to get on the bus by himself afterschool without an aide or teacher prompting him. Yet we know true fear when his brother tells us he almost missed the bus because he was daydreaming and not paying attention.
When you have a child with mild developmental issues like our son, he is often mistaken for "normal". There are also too many moments when he is seen as different. He isn't one, but he isn't the other either. He's somewhere in between. Therein lies the frustration. Therein lies the worry and concern. Therein lies the need for balance. Help us Lord to encourage our son's independence while keeping him safe from harm, be it physical or emotional. Help us to find the balance.
My oldest son got to play hookey from school on Friday to go deer hunting with his father. As a result, my youngest son would be getting on the bus by himself for the first time. For most kids this wouldn't be such a big deal. But as I have discussed previously, my youngest child lacks an awareness of danger and its consequences. Because of this, I was a little concerned with how this experience would unfold.
Friday morning, he and I got up and prepared for school and work as we always do. When it came time to go out to the bus, he thought he was big stuff because he got to sit up front in the car without his brother. Once we were parked at the end of the driveway and waiting for the bus, I talked to him about what I wanted him to do when the bus pulled up. Usually when the bus pulls up, his brother holds onto his backpack to hold him back because he becomes so excited to get on the bus and start his day that he starts running in place in anticipation of boarding the bus and going to sit with "his girls". On this day, his brother wouldn't be there to hold him back. I could have gotten out and waited with him but I saw this as an opportunity to encourage his independence. He and I discussed why he needed to wait until Mommy said "go" before crossing the street to board the bus. We talked about what he needed to do to wait and stay safe until the bus was completely stopped.
When the bus pulled up, he fumbled around as he always does while trying to exit the car. I coached him verbally on what I wanted him to do. As always, he stood there next to the car, excited and running in place. But today,instead of being held back by his brother, he touched the car and held onto the cardoor until I told him "go!". When I told him to go, he ran across the road, soooo excited because he was getting on the bus by himself. I laughed out loud at his enthusiasm. Inside, I also felt a small pang of regret. My baby had reached another milestone. What a beautifully sad moment.
There are so many moments like this with my youngest child. Balancing our need to keep him safe with our need to encourage his independence. We want him to run and play with his friends at school. Yet we shake our heads in frustration, when he comes home from school in different clothes because he fell on the playground and got soaking wet. We want him to be social and learn how to interact with others outside his normal "circle". Yet we hesitate for fear he will be rejected or ostrasized by others who see him as different. We want him to get on the bus by himself afterschool without an aide or teacher prompting him. Yet we know true fear when his brother tells us he almost missed the bus because he was daydreaming and not paying attention.
When you have a child with mild developmental issues like our son, he is often mistaken for "normal". There are also too many moments when he is seen as different. He isn't one, but he isn't the other either. He's somewhere in between. Therein lies the frustration. Therein lies the worry and concern. Therein lies the need for balance. Help us Lord to encourage our son's independence while keeping him safe from harm, be it physical or emotional. Help us to find the balance.
Saturday, December 3, 2011
It Takes A Village
Hillary Clinton says it takes a village to raise a child. I'm not a big fan of hers but in this case, I have to agree. My family belongs to a couple significant "villages" without which, we would not have made it through the last couple of years. As members of a family based fire company, an active church family, and a loving circle of family and friends, we have had the support of amazing, self-less individuals.
During the worst times in our lives, our family has had the loving support of an amazing church family. The Watsontown Baptist Church has a very active prayer support system. When the prayer chain is activated, you can be sure that people are faithfully, diligently, and lovingly praying for you. I credit their prayers with healing and restoring countless people, my family included. There have been times in our life, especially with my youngest son and his developmental/health issues, when I saw no way out. It was as bad as it could be. But turning those needs and concerns over to the hands of these faithful believers has resulted in answers to unanswerable moments again and again. One woman in our church who is on a limited, fixed income, convinced her co-workers to donate money to us for our trip to the Children's Hospital of Philadelphia to help cover transportation costs. No one asked her for this. She did it out of love and concern for our family. I will never forget her love and generosity. Those who do not believe would not understand. For them, I feel sorrow. To be given answers and support, when before there was none, is unlike anything else. It is only possible through God and his believers. In that, I do believe.
We have also been fortunate to be members of a large and very supportive family network. Both sets of grandparents have been more than willing to take our children for an evening or a weekend when we felt like we were burning our candles at both ends. My parents who have no experience with asthma or health issues have learned how to give breathing treatments and administer meds. This is definitely outside their comfort zone as my siblings and I were all fairly healthy kids. Besides lending a listening ear or wise advise, my in-laws have transported our youngest son to therapy so that we wouldn't have to take more time off work. They have watched our children when they were sick or school was cancelled, sometimes with very short notice. My husband's great-aunt, a woman in her seventies, took on the task of taking my very hyper impulsive five year-old to therapy after my father-in-law had his stroke. No questions asked. When asked, she said yes. No problem. My aunt and her husband who work at John Hopkins have acted as amazing information sources. They have prayed and worried for us. Those without a large family network might have found it all overwhelming or even smothering. Without them, we would not have survived the last five years.
Our neighbors are like family. They love our children like their own. If they are outside, it is like an episode of "Dennis the Menace". The boys see them out and take off on a run to go see them. Both sets of neighbors are amazing. They never seem irritated or bothered, just happy to see them and share their company. If we need a babysitter or someone to get the boys off the bus, they are more than willing to lend a hand. What wonderful, amazing people.
We are also fortunate enough to be members of the most supportive, family based volunteer fire company that I have ever had the good fortune to come across. The members of this fire company love and support each other like a family. When someone is in trouble, the others rally around with whatever is needed. Our time at the fire company is some of the rare times when I can let my guard down in regard to watching my youngest child. When we are there, I know that someone else is watching him in a responsible and caring manner. They are putting him to work mopping floors, or carrying supplies, or watering flowers. At the fire hall, he feels like a big boy and no one tells him no he can't do it.
Two of the daughters of another family from our fire company ride the bus with my two boys. They are older than my sons by several years. Without being asked, they took it upon themselves to help keep an eye on my youngest son on the bus. It has been a God send. My youngest would not listen to his brother during their half hour/forty-five minute bus ride. Those two girls took it upon themselves to convince my youngest to sit with one or the other of them because they knew he would listen better to them. They brought notebooks and markers to entertain him and keep him occupied during the long bus ride. Candy and other treats have been provided as a reward for having a good trip to/from school. Other kids on the bus has been encouraged to help get him on the bus since his brother is attending the middle school, while my youngest has just started elementary. It has truly been a community effort. These two girls will never know the peace of mind they have provided for me. I can never thank them enough for the loving support they have provided my son and my family.
Most of the love and support we have received from others has come without our having asked for it. My husband and I are very proud people who don't like to ask favors of others. Time and again, others have helped out, lent a hand, or came through when they were needed. To those in our "villages", thank you. We love you. You will always be in our prayers.
During the worst times in our lives, our family has had the loving support of an amazing church family. The Watsontown Baptist Church has a very active prayer support system. When the prayer chain is activated, you can be sure that people are faithfully, diligently, and lovingly praying for you. I credit their prayers with healing and restoring countless people, my family included. There have been times in our life, especially with my youngest son and his developmental/health issues, when I saw no way out. It was as bad as it could be. But turning those needs and concerns over to the hands of these faithful believers has resulted in answers to unanswerable moments again and again. One woman in our church who is on a limited, fixed income, convinced her co-workers to donate money to us for our trip to the Children's Hospital of Philadelphia to help cover transportation costs. No one asked her for this. She did it out of love and concern for our family. I will never forget her love and generosity. Those who do not believe would not understand. For them, I feel sorrow. To be given answers and support, when before there was none, is unlike anything else. It is only possible through God and his believers. In that, I do believe.
We have also been fortunate to be members of a large and very supportive family network. Both sets of grandparents have been more than willing to take our children for an evening or a weekend when we felt like we were burning our candles at both ends. My parents who have no experience with asthma or health issues have learned how to give breathing treatments and administer meds. This is definitely outside their comfort zone as my siblings and I were all fairly healthy kids. Besides lending a listening ear or wise advise, my in-laws have transported our youngest son to therapy so that we wouldn't have to take more time off work. They have watched our children when they were sick or school was cancelled, sometimes with very short notice. My husband's great-aunt, a woman in her seventies, took on the task of taking my very hyper impulsive five year-old to therapy after my father-in-law had his stroke. No questions asked. When asked, she said yes. No problem. My aunt and her husband who work at John Hopkins have acted as amazing information sources. They have prayed and worried for us. Those without a large family network might have found it all overwhelming or even smothering. Without them, we would not have survived the last five years.
Our neighbors are like family. They love our children like their own. If they are outside, it is like an episode of "Dennis the Menace". The boys see them out and take off on a run to go see them. Both sets of neighbors are amazing. They never seem irritated or bothered, just happy to see them and share their company. If we need a babysitter or someone to get the boys off the bus, they are more than willing to lend a hand. What wonderful, amazing people.
We are also fortunate enough to be members of the most supportive, family based volunteer fire company that I have ever had the good fortune to come across. The members of this fire company love and support each other like a family. When someone is in trouble, the others rally around with whatever is needed. Our time at the fire company is some of the rare times when I can let my guard down in regard to watching my youngest child. When we are there, I know that someone else is watching him in a responsible and caring manner. They are putting him to work mopping floors, or carrying supplies, or watering flowers. At the fire hall, he feels like a big boy and no one tells him no he can't do it.
Two of the daughters of another family from our fire company ride the bus with my two boys. They are older than my sons by several years. Without being asked, they took it upon themselves to help keep an eye on my youngest son on the bus. It has been a God send. My youngest would not listen to his brother during their half hour/forty-five minute bus ride. Those two girls took it upon themselves to convince my youngest to sit with one or the other of them because they knew he would listen better to them. They brought notebooks and markers to entertain him and keep him occupied during the long bus ride. Candy and other treats have been provided as a reward for having a good trip to/from school. Other kids on the bus has been encouraged to help get him on the bus since his brother is attending the middle school, while my youngest has just started elementary. It has truly been a community effort. These two girls will never know the peace of mind they have provided for me. I can never thank them enough for the loving support they have provided my son and my family.
Most of the love and support we have received from others has come without our having asked for it. My husband and I are very proud people who don't like to ask favors of others. Time and again, others have helped out, lent a hand, or came through when they were needed. To those in our "villages", thank you. We love you. You will always be in our prayers.
Sunday, November 20, 2011
The System
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.
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.
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.
Friday, October 28, 2011
Lessons Learned
"Why does he talk like that? And how come he can't do stuff like I can?" she innocently asked.
It's questions like these that strike an arrow into my heart. She was the same age as my youngest child, but she had picked up on his differences. If you spend time with my youngest, you can forget that he is consistently a year or two behind his peers developmentally. His big physical presence and even bigger personality are deceptive. His smile is 100 watts of pure sunshine. As his teacher says, "I love him. He makes my day, everyday." He overflows with energy and enthusiasm for EVERYTHING. With that kind of joy on display, you get sucked into his world and forget that he has trouble doing what his same age peers can do.
But he does. He started kindergarten this year. At almost six years of age, he draws pictures and writes like a three year-old. His fine motor skills are his greatest area of delay. Most of his needs tend to be expressive rather than receptive. He's clever but it can be hard to tell at times. His speech can be slow especially since he has only recently stopped stuttering. To keep himself from doing so, he has learned to draw-w-w out the words that he might otherwise stutter. Physically, he is big and clumsy. I am not saying this in a mean way but as a statement of reality. He kind of "bumbles" along at times, a bit like a big bear.
At times, it is absolutely exhausting being his parent. He lacks an awareness of danger. The first day of school he fell face first on the playground and scraped up his face from the tip of his nose to his forehead. It was a relief to hear that was all he had done. I was actually living in fear of recess. I still am. It would not shock me to hear that he had climbed to the top of the monkey bars; turned around to talk to someone; and fell off, breaking an arm. As a family, we live in a constant state of awareness with him. Where is he? What is he doing that could get him hurt? What is he into?
On the other hand, we are grateful every single day that he is in our lives. When we go to the hospital for his therapy and see the other children there, we are so glad that he is the smart, happy little guy that he is. His needs are so small compared to some of those other children. God has truly blessed us.
But there is part of the problem. His needs are deceptive. They are obvious enough that others who spend time with him ask questions. One lady asked, "So what is wrong with him?" A little boy at a soccer game said, "He doesn't even try to write right. He's too big to scribble." On the other hand, there are family members who are in complete denial and get upset with us. One family member stated, "There is nothing wrong with him that a little time won't fix. He needs to be allowed to be a little boy." My husband and I even debated with each other when he turned three. Do we keep him in therapy or give him time to progress on his own? We decided to take him out of therapy for a year. At the end of that year, his stuttering had become very pronounced; his frustration level was resulting in horrible tantrums; and his skills had not progressed. We were wrong. Instead of letting him be a little kid for a while, we had lost a year when we may have been helping him to catch up.
As parents, we have had to learn to put aside our own expectations, wishes, and desires for our son. We have had to learn to see him and accept him for who he is - not who we wanted him to be. Our son is very bright. Have no doubt. But our son experiences life differently than we may have wanted him to. I wanted life to be easy for him. Free of pain and discomfort. But the reality is that God has equipped him for the journey that he is on. He has a natural love and joy for life. I have often said that our youngest child "eats life". He propels himself through it, full speed, nothing held back - and with great joy. He asked for rocks for Christmas last year. Yep. Rocks. When asked why, he replied, "To make piles." Life is that simple for him. I think there is a lesson there for all of us. Enjoy every moment. Keep it simple. Love those around you without reservation.
Thank you God for this child. Thank you for the lessons that he is teaching me. Please guide me in our journey together. May I be the mother that he needs me to be.
It's questions like these that strike an arrow into my heart. She was the same age as my youngest child, but she had picked up on his differences. If you spend time with my youngest, you can forget that he is consistently a year or two behind his peers developmentally. His big physical presence and even bigger personality are deceptive. His smile is 100 watts of pure sunshine. As his teacher says, "I love him. He makes my day, everyday." He overflows with energy and enthusiasm for EVERYTHING. With that kind of joy on display, you get sucked into his world and forget that he has trouble doing what his same age peers can do.
But he does. He started kindergarten this year. At almost six years of age, he draws pictures and writes like a three year-old. His fine motor skills are his greatest area of delay. Most of his needs tend to be expressive rather than receptive. He's clever but it can be hard to tell at times. His speech can be slow especially since he has only recently stopped stuttering. To keep himself from doing so, he has learned to draw-w-w out the words that he might otherwise stutter. Physically, he is big and clumsy. I am not saying this in a mean way but as a statement of reality. He kind of "bumbles" along at times, a bit like a big bear.
At times, it is absolutely exhausting being his parent. He lacks an awareness of danger. The first day of school he fell face first on the playground and scraped up his face from the tip of his nose to his forehead. It was a relief to hear that was all he had done. I was actually living in fear of recess. I still am. It would not shock me to hear that he had climbed to the top of the monkey bars; turned around to talk to someone; and fell off, breaking an arm. As a family, we live in a constant state of awareness with him. Where is he? What is he doing that could get him hurt? What is he into?
On the other hand, we are grateful every single day that he is in our lives. When we go to the hospital for his therapy and see the other children there, we are so glad that he is the smart, happy little guy that he is. His needs are so small compared to some of those other children. God has truly blessed us.
But there is part of the problem. His needs are deceptive. They are obvious enough that others who spend time with him ask questions. One lady asked, "So what is wrong with him?" A little boy at a soccer game said, "He doesn't even try to write right. He's too big to scribble." On the other hand, there are family members who are in complete denial and get upset with us. One family member stated, "There is nothing wrong with him that a little time won't fix. He needs to be allowed to be a little boy." My husband and I even debated with each other when he turned three. Do we keep him in therapy or give him time to progress on his own? We decided to take him out of therapy for a year. At the end of that year, his stuttering had become very pronounced; his frustration level was resulting in horrible tantrums; and his skills had not progressed. We were wrong. Instead of letting him be a little kid for a while, we had lost a year when we may have been helping him to catch up.
As parents, we have had to learn to put aside our own expectations, wishes, and desires for our son. We have had to learn to see him and accept him for who he is - not who we wanted him to be. Our son is very bright. Have no doubt. But our son experiences life differently than we may have wanted him to. I wanted life to be easy for him. Free of pain and discomfort. But the reality is that God has equipped him for the journey that he is on. He has a natural love and joy for life. I have often said that our youngest child "eats life". He propels himself through it, full speed, nothing held back - and with great joy. He asked for rocks for Christmas last year. Yep. Rocks. When asked why, he replied, "To make piles." Life is that simple for him. I think there is a lesson there for all of us. Enjoy every moment. Keep it simple. Love those around you without reservation.
Thank you God for this child. Thank you for the lessons that he is teaching me. Please guide me in our journey together. May I be the mother that he needs me to be.
Friday, October 21, 2011
The Beginning
My husband and I thought we were AWESOME parents! Our first child was the son anyone would want to have. He was smart, kind hearted, out going. Everyone who met him, fell in love. We did a great job. Right?
Then our second child was born and helped us realize, we weren't awesome. We were lucky. From the time we brought him home from the hospital, nothing has been easy. Don't get me wrong! He is also smart, kind hearted, and out going. Everyone who meets him, falls in love. But our second son has global developmental delays and some chronic health issues. Combine that with a stubborn, bull headed disposition, and you have two very challenged, very tired parents.
When he was nine months old, we became concerned because he couldn't sit up by himself. Our oldest was starting to walk by that age. A very quiet baby, he didn't babble or coo like other babies. He was always smiling and happy but he wasn't doing all those things that other babies his age were doing. He also had a serious asthma condition that required daily breathing treatments and diligent preventative measures. In addition, he was very tall for his age and the steroids he was on had made him puffy. Our primary doctor recommended that we seek out early intervention services. He also referred us to specialists to try to identify what exactly was wrong with him. Let the fun begin!
Having sons like ours can really put your life into perspective. It helps you see humor in the darkest of days. Laughing instead of crying because you have to prop your one year old up with pillows when he's sitting on the floor so that he doesn't fall and smack his head. It brings you closer to your family and those who really love and support you. Calling your mother-in-law at two in the morning so she can listen to your baby's breathing to give you advise because he just had a breathing treatment two hours before and he can't have another for two more hours. It makes you realize that nothing is possible without God and his Grace. Like driving five hours to the Children's Hospital of Philadelphia because the specialists tell you that your baby will need to have his skull cut open and spacers put in place but when you get there, the specialists at CHOP say take him home. He doesn't need this procedure. He is fine. Crying and thanking God because you know it was the prayers of your community and your friends and family that made this miracle possible.
Life isn't easy. Being a parent is never easy. But the journey is certainly worth it. My sons have taught me that.
Then our second child was born and helped us realize, we weren't awesome. We were lucky. From the time we brought him home from the hospital, nothing has been easy. Don't get me wrong! He is also smart, kind hearted, and out going. Everyone who meets him, falls in love. But our second son has global developmental delays and some chronic health issues. Combine that with a stubborn, bull headed disposition, and you have two very challenged, very tired parents.
When he was nine months old, we became concerned because he couldn't sit up by himself. Our oldest was starting to walk by that age. A very quiet baby, he didn't babble or coo like other babies. He was always smiling and happy but he wasn't doing all those things that other babies his age were doing. He also had a serious asthma condition that required daily breathing treatments and diligent preventative measures. In addition, he was very tall for his age and the steroids he was on had made him puffy. Our primary doctor recommended that we seek out early intervention services. He also referred us to specialists to try to identify what exactly was wrong with him. Let the fun begin!
Having sons like ours can really put your life into perspective. It helps you see humor in the darkest of days. Laughing instead of crying because you have to prop your one year old up with pillows when he's sitting on the floor so that he doesn't fall and smack his head. It brings you closer to your family and those who really love and support you. Calling your mother-in-law at two in the morning so she can listen to your baby's breathing to give you advise because he just had a breathing treatment two hours before and he can't have another for two more hours. It makes you realize that nothing is possible without God and his Grace. Like driving five hours to the Children's Hospital of Philadelphia because the specialists tell you that your baby will need to have his skull cut open and spacers put in place but when you get there, the specialists at CHOP say take him home. He doesn't need this procedure. He is fine. Crying and thanking God because you know it was the prayers of your community and your friends and family that made this miracle possible.
Life isn't easy. Being a parent is never easy. But the journey is certainly worth it. My sons have taught me that.
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