Once our little boy turned 3 he became eligible for pre-school. His pre-school experience will be a little different from his sister. We selected her pre-school. For our son, the state determined where he would be placed after he qualified.
The qualification process was remarkable painless and simple. We had a couple of meetings, first just to provide paperwork and then subsequently for therapists and school officials to evaluate my son to see if he met the criteria required for placement in the pre-school. The evaluation process consisted of various questions that assessed where my son is developmentally and what he is able to do with respect to life skills. Based on the evaluation, my son qualified for pre-school.
Here, the pre-schools for special needs kids are located in regular elementary schools. There are only a handful of schools that have the special needs pre-school or priority pre-schools as they are called. Generally, the child is placed in a pre-school close to his or her home but that is assuming that the class is not full. Thankfully, the school closest to us was not full and my son was able to join an existing class. Interestingly, all the students have special needs, there is no integration at this point. I am hopeful that when he starts kindergarten he will be in a class that has both special needs as well as regular students.
My son started his class the week after he turned 3 and it was so exciting to see him walk into his classroom with his little backpack (that was almost as big as him). We didn't stay for the class because we wanted him to adjust easily and quickly and he did exactly that. We are very blessed that he does not fight change and is in fact very flexible. He had a "great first day" according to his teacher and we are looking forward to seeing how he will develop and progress through the rest of the school year.
Tuesday, October 18, 2011
Wednesday, August 17, 2011
Special Needs Trust
After our daughter was born we decided that we needed to draft a will in case something happened to us. Just so we felt comfortable knowing that she was being taken care of in a way that we would want. Our search for an attorney consisted of simply looking around advertisements and settling on someone who was in our city and capable of doing the job. We had a will drafted for myself and my husband. Both were so simple that they were only a few pages long. Nothing more was needed and we just thought when our second child was born we would add to the existing will.
Well, once our son was born and we realized he had special needs we also, I think instinctively knew that our simple will would not work for him. In fact, what we ended up having to do was something that we were not familiar with at all and that was to create a special needs trust.
Let me back up a little, once we discovered that our son had down syndrome we also began learning about what services are provided by the government. At some point, probably pretty on in the process, we learned that in order for the government to provide services (such as therapies) for my son "free of charge" to us he was prohibited from having too much money in his name. Specifically, my son cannot have more than $2000.00 in an account in his name at this time (this amount may change in the future). If he should have more than that he would be disqualified from receiving services from the government. Obviously with this kind of restriction we knew that we could not leave money or property to my son in a will like a parent normally would. Thus began our search for an attorney who could draft the proper document that would allow us to leave money and provide for our son in the future without jeopardizing any government assistance.
The first place I looked was on the local state bar association website. Every state has one and a simple search on the websites can pull up names of attorneys who draft wills and/or trusts or who practice in estate planning. However, I soon realized when I narrowed my search to those who practiced in this specific area of special needs the list was relatively short and the blurbs on each attorney did not provide a lot of information about whether or not they specialized in this area of law. So we started asking for referrals from friends and although that proved helpful and I contacted a couple of attorneys, I was still not sure what to do.
Then we found out about the Special Needs Alliance (www.specialneedsalliance.com). As their website states these are attorneys who practice in disability law and even better on their home page there is a link to find an attorney in your area! Well, we did just that and found a attorney in our area who drafted a special needs trust that meets the government requirements. This is a huge relief for us and now we know that our son will be taken care of in a manner that we want when we can no longer care for him and also that our provisions for him will not prevent him from continuing to receive the government assistance that he needs and is entitled to.
Well, once our son was born and we realized he had special needs we also, I think instinctively knew that our simple will would not work for him. In fact, what we ended up having to do was something that we were not familiar with at all and that was to create a special needs trust.
Let me back up a little, once we discovered that our son had down syndrome we also began learning about what services are provided by the government. At some point, probably pretty on in the process, we learned that in order for the government to provide services (such as therapies) for my son "free of charge" to us he was prohibited from having too much money in his name. Specifically, my son cannot have more than $2000.00 in an account in his name at this time (this amount may change in the future). If he should have more than that he would be disqualified from receiving services from the government. Obviously with this kind of restriction we knew that we could not leave money or property to my son in a will like a parent normally would. Thus began our search for an attorney who could draft the proper document that would allow us to leave money and provide for our son in the future without jeopardizing any government assistance.
The first place I looked was on the local state bar association website. Every state has one and a simple search on the websites can pull up names of attorneys who draft wills and/or trusts or who practice in estate planning. However, I soon realized when I narrowed my search to those who practiced in this specific area of special needs the list was relatively short and the blurbs on each attorney did not provide a lot of information about whether or not they specialized in this area of law. So we started asking for referrals from friends and although that proved helpful and I contacted a couple of attorneys, I was still not sure what to do.
Then we found out about the Special Needs Alliance (www.specialneedsalliance.com). As their website states these are attorneys who practice in disability law and even better on their home page there is a link to find an attorney in your area! Well, we did just that and found a attorney in our area who drafted a special needs trust that meets the government requirements. This is a huge relief for us and now we know that our son will be taken care of in a manner that we want when we can no longer care for him and also that our provisions for him will not prevent him from continuing to receive the government assistance that he needs and is entitled to.
Saturday, July 2, 2011
Solid food!?
We started giving my son his first taste of "solid food" just like any other baby when he was around 4-5 months. We first offered him rice cereal and it was so great to see him eat it with no problem whatsoever. When we started feeding him rice cereal, oatmeal, and then jar food my husband and I repeatedly commented, "This is what it is supposed to be like to feed a baby." Our prior experience with our daughter was not easy, she'd rather do anything else than eat!
When we finally offered my son table food, it was so exciting. He loved gumming big chunks of carrots or a small chicken drumstick. We even have a picture of him trying to eat a strip of steak at 15 months. We would not have to struggle with feeding our second child like we had to with our first, or so we thought.
Then my son began teething at around 18 months (this delay is teething is something that can occur in babies with down syndrome). We were actually concerned about when he would begin to have teeth but then he cut his first tooth. We were glad that my son was finally teething until we saw the impact on his eating.
Initially we did not connect his refusal to eat table food with his teething but as we looked back we realized that once my son started teething he also refused to eat table food and would only eat jar food. At that point I began to blend some of the table food so that he would have the flavor of what we were eating. Additionally, we felt like we could do both table food and baby food because we wanted to wean him off of jar food. It seemed as if our plan was working. Before we offered him jar food, we would give him the blended table food and have him eat as much of that as possible. When he absolutely refused to eat any more table food, we gave him the jar food. This went on for about a month or so before he just absolutely refused to eat table food, in any shape or form. We were upset and very frustrated. What had looked so promising had turned into a huge struggle.
The struggle was overwhelming as previously pleasant meal times turned into long excruciating sessions of pleading, cajoling, and sometimes even admonishing our son for refusing to eat. These times were far from enjoyable. In the end, I think my husband and I both sort of gave up and let my son just eat jar food. We were more concerned with his weight gain and getting calories into him and it was just too painful and exhausting trying to get him to eat.
Some time during this period, we expressed our concerns to our speech therapist and she suggested one of the best things that worked wonders for us. Veggie sticks. Potato chips in a stick form. You can buy them at Trader Joe's, Sprouts, or at Costco. My son absolutely loved them! And with our therapists help, we used the veggie sticks to try to introduce different textures of food to him. The process worked but it was still very difficult.
One issue that became apparent during this time was my son's sensitive gag reflex. When he would become upset while we were trying to feed him, he would invariably throw up. This complicated an already sensitive situation. While we desperately wanted my son to advance move beyond jar food we were also worried that he may not have been eating correctly or have issues with swallowing because he was throwing up every time he became upset during meal time. Because this kept happening we eventually decided to have him evaluated by a feeding therapist.
The evaluation by the feeding therapist was surprisingly simple. She came to our home and watched my son eat. She asked me about what he did eat and what he didn't eat. Her conclusion, my son's eating was perfectly normal and his refusal to eat table food was simply "behavioral". Translation from mommy's point of view - my son was just stubborn and wanted to eat what he wanted to eat.
Since then has improved a lot and now eats table food. We definitely celebrated his weaning off of jar food but it wasn't easy. We used a combination of positive and negative reinforcement through trial and error. He is still resistant at times to eating and quite stubborn about his refusal to eat but we are working through it and continue to cheer when he eats a food item for the first time on his own.
When we finally offered my son table food, it was so exciting. He loved gumming big chunks of carrots or a small chicken drumstick. We even have a picture of him trying to eat a strip of steak at 15 months. We would not have to struggle with feeding our second child like we had to with our first, or so we thought.
Then my son began teething at around 18 months (this delay is teething is something that can occur in babies with down syndrome). We were actually concerned about when he would begin to have teeth but then he cut his first tooth. We were glad that my son was finally teething until we saw the impact on his eating.
Initially we did not connect his refusal to eat table food with his teething but as we looked back we realized that once my son started teething he also refused to eat table food and would only eat jar food. At that point I began to blend some of the table food so that he would have the flavor of what we were eating. Additionally, we felt like we could do both table food and baby food because we wanted to wean him off of jar food. It seemed as if our plan was working. Before we offered him jar food, we would give him the blended table food and have him eat as much of that as possible. When he absolutely refused to eat any more table food, we gave him the jar food. This went on for about a month or so before he just absolutely refused to eat table food, in any shape or form. We were upset and very frustrated. What had looked so promising had turned into a huge struggle.
The struggle was overwhelming as previously pleasant meal times turned into long excruciating sessions of pleading, cajoling, and sometimes even admonishing our son for refusing to eat. These times were far from enjoyable. In the end, I think my husband and I both sort of gave up and let my son just eat jar food. We were more concerned with his weight gain and getting calories into him and it was just too painful and exhausting trying to get him to eat.
Some time during this period, we expressed our concerns to our speech therapist and she suggested one of the best things that worked wonders for us. Veggie sticks. Potato chips in a stick form. You can buy them at Trader Joe's, Sprouts, or at Costco. My son absolutely loved them! And with our therapists help, we used the veggie sticks to try to introduce different textures of food to him. The process worked but it was still very difficult.
One issue that became apparent during this time was my son's sensitive gag reflex. When he would become upset while we were trying to feed him, he would invariably throw up. This complicated an already sensitive situation. While we desperately wanted my son to advance move beyond jar food we were also worried that he may not have been eating correctly or have issues with swallowing because he was throwing up every time he became upset during meal time. Because this kept happening we eventually decided to have him evaluated by a feeding therapist.
The evaluation by the feeding therapist was surprisingly simple. She came to our home and watched my son eat. She asked me about what he did eat and what he didn't eat. Her conclusion, my son's eating was perfectly normal and his refusal to eat table food was simply "behavioral". Translation from mommy's point of view - my son was just stubborn and wanted to eat what he wanted to eat.
Since then has improved a lot and now eats table food. We definitely celebrated his weaning off of jar food but it wasn't easy. We used a combination of positive and negative reinforcement through trial and error. He is still resistant at times to eating and quite stubborn about his refusal to eat but we are working through it and continue to cheer when he eats a food item for the first time on his own.
Sunday, May 22, 2011
Beyond breast feeding
I was fortunate. My son, as it turned out did great with breast feeding. Despite having low muscle tone, he was able to latch on and nurse like any other baby. In fact, it was much easier to feed him than his sister, who as a baby was and continues to be a princess in training. But then it came time for my son to learn to eat by other methods.
First, we tried bottle feeding and that did not work at all. We tried all types of bottles and bottle systems and he refused them all. Toward the end we were getting pretty desperate because I had been nursing him for about a year and I could tell that I was not producing enough milk so it was urgent that we feed him using another method. Thankfully, we were and still are surrounding by excellent therapists and one of them suggested using the honey bear. We had never heard of this but were willing to try anything.
Initially we assumed that our son would learn to drink from a sippy cup just as his sister and every other child seems to do. We thought it was the logical next step. However, our therapists recommended bypassing the sippy cup. I do not recall the exact reasoning but it had something to do with effecting the normal pattern of speech or something along those lines. The reasoning related to proper oral development.
Instead we learned about the honey bear. The honey bear is an excellent way to teach babies/toddlers how to drink from a straw. Essentially, the honey bear is the same honey bear that you can buy at the local grocery store that is used for well, honey. However, instead of filling the bear with honey, you can fill it with another type of liquid (in our case pediasure). Where you would normally dispense the honey in the cap, you can insert a thin plastic tubing that functions as a straw. The flexibility of the honey bear allows the feeder to assist the baby by controlling the flow of the liquid coming out of the bear because the feeder can squeeze the bear more to create a faster stronger flow or squeeze less to lessen the amount of liquid coming out of the bear.
Although you can just buy the honey bear from the grocery store, remove the honey and wash it, the honey taste/scent may still remain. Instead, we purchased our honey bear from www.talktools.com. Initially we only purchased one or two honey bears but not any additional straws. I would recommend that additional straws be purchased because they straws are not easy to clean. Depending on how often you use them, they may need to be replaced more quickly than the honey bear itself. To clean the straw, we found that Dr. Brown's straw brush was the perfect size to clean the honey bear straw. Fortunately for us, we are located near a Buy Buy Baby (www.buybuybaby.com) which sells the straw brush in packs of 4.
We also figured out there was a less expensive alternative. The take and toss cups with straws and lids that you can buy at any Target, Walmart, CVS, Walgreens or grocery store. Although not as easy to squeeze, you can squeeze the cup enough to help the baby suck out of the straw. Several months after my son got used to the honey bear we just switched to the take and toss cups because that is what his sister used. We still use those cups today for his milk and for any other liquids.
First, we tried bottle feeding and that did not work at all. We tried all types of bottles and bottle systems and he refused them all. Toward the end we were getting pretty desperate because I had been nursing him for about a year and I could tell that I was not producing enough milk so it was urgent that we feed him using another method. Thankfully, we were and still are surrounding by excellent therapists and one of them suggested using the honey bear. We had never heard of this but were willing to try anything.
Initially we assumed that our son would learn to drink from a sippy cup just as his sister and every other child seems to do. We thought it was the logical next step. However, our therapists recommended bypassing the sippy cup. I do not recall the exact reasoning but it had something to do with effecting the normal pattern of speech or something along those lines. The reasoning related to proper oral development.
Instead we learned about the honey bear. The honey bear is an excellent way to teach babies/toddlers how to drink from a straw. Essentially, the honey bear is the same honey bear that you can buy at the local grocery store that is used for well, honey. However, instead of filling the bear with honey, you can fill it with another type of liquid (in our case pediasure). Where you would normally dispense the honey in the cap, you can insert a thin plastic tubing that functions as a straw. The flexibility of the honey bear allows the feeder to assist the baby by controlling the flow of the liquid coming out of the bear because the feeder can squeeze the bear more to create a faster stronger flow or squeeze less to lessen the amount of liquid coming out of the bear.
Although you can just buy the honey bear from the grocery store, remove the honey and wash it, the honey taste/scent may still remain. Instead, we purchased our honey bear from www.talktools.com. Initially we only purchased one or two honey bears but not any additional straws. I would recommend that additional straws be purchased because they straws are not easy to clean. Depending on how often you use them, they may need to be replaced more quickly than the honey bear itself. To clean the straw, we found that Dr. Brown's straw brush was the perfect size to clean the honey bear straw. Fortunately for us, we are located near a Buy Buy Baby (www.buybuybaby.com) which sells the straw brush in packs of 4.
We also figured out there was a less expensive alternative. The take and toss cups with straws and lids that you can buy at any Target, Walmart, CVS, Walgreens or grocery store. Although not as easy to squeeze, you can squeeze the cup enough to help the baby suck out of the straw. Several months after my son got used to the honey bear we just switched to the take and toss cups because that is what his sister used. We still use those cups today for his milk and for any other liquids.
Tuesday, April 19, 2011
Helpful tools
Once I had the chance to breathe, I was able to look up various websites that specifically apply to down syndrome. Two websites are nationally based - the National Down Syndrome Congress (www.ndsccenter.org) and National Down Syndrome Society (www.ndss.org). These websites were good starting points to just learning about down syndrome but frankly, after surfing through the sites, I was just overwhelmed. For me, it may have been selfish but I just needed to focus on my son and not statistics.
So that is what I did - I just focused on being a mom to my two kids and meeting their needs as best as I could. Of course, that did not mean I didn't seek advice or help for my son. In fact, our physical therapist was very helpful in suggesting tools for him.
One of the tools that our physical therapist recommended and that I would recommend to any parent of a child with down syndrome is Hip Helpers. These are shorts that are made of the same material that you associate with tight biker shorts, but what is so great about them is that the inseam is sewn up so that the baby's movement is restricted to spreading his legs only hip width apart. The shorts really helped since my son has low muscle tone (something that is apparently a common for babies with down syndrome). Check out www.hiphelpers.com. Even now, when my son's flexibility seems a little too much, I slip the shorts back on him for a couple of hours to help him.
Something else that I just love is Baby Signing Time. These are dvds where sign language is put to music. Since my son loves music this has been a great help. The tunes are catchy and help the entire family learn sign language. We initially bought this for our daughter but continued using it with our son. The dvds are sold on Amazon.com as well as on www.babysigningtime.com. Knowing sign language has been a tremendous help in communicating with our son. Even as he has started speaking, we still use sign language to aid us.
So that is what I did - I just focused on being a mom to my two kids and meeting their needs as best as I could. Of course, that did not mean I didn't seek advice or help for my son. In fact, our physical therapist was very helpful in suggesting tools for him.
One of the tools that our physical therapist recommended and that I would recommend to any parent of a child with down syndrome is Hip Helpers. These are shorts that are made of the same material that you associate with tight biker shorts, but what is so great about them is that the inseam is sewn up so that the baby's movement is restricted to spreading his legs only hip width apart. The shorts really helped since my son has low muscle tone (something that is apparently a common for babies with down syndrome). Check out www.hiphelpers.com. Even now, when my son's flexibility seems a little too much, I slip the shorts back on him for a couple of hours to help him.
Something else that I just love is Baby Signing Time. These are dvds where sign language is put to music. Since my son loves music this has been a great help. The tunes are catchy and help the entire family learn sign language. We initially bought this for our daughter but continued using it with our son. The dvds are sold on Amazon.com as well as on www.babysigningtime.com. Knowing sign language has been a tremendous help in communicating with our son. Even as he has started speaking, we still use sign language to aid us.
One day at a time: My first post
One day at a time: My first post: "I'm a mom with a 2 1/2 year old boy who has down syndrome. I am posting and blogging for the first time. My son was diagnosed with down s..."
Monday, April 4, 2011
My first post
I'm a mom with a 2 1/2 year old boy who has down syndrome. I am posting and blogging for the first time.
My son was diagnosed with down syndrome five days after he was born. My husband and I were in shock and I never truly had a chance to grieve the boy that I thought I was going to have. Through the whirlwind of the first few months, I was left with barely enough time to breath much less process what my son's diagnosis meant and what that would mean to our family life. Every time I told someone my son had down syndrome, the words were followed by silent tears that rolled down my cheeks - tears that I could not stop even if I tried. Now there are no more tears, just a little boy who loves being a younger brother to his older sister and a reality that is truly normal.
I am blogging to share things that have helped us and my son and that would be potentially helpful for other parents with a baby that has been diagnosed with down syndrome or other special needs. Of course, my suggestions are merely that - suggestions.
So I will start at the beginning.
First, we use a spiral or hardcover notebook and 13 pocket expanding/accordion file.
The notebook we bring to every doctor's appointment, from the pediatrician to the cardiologist, ophthalmologist and every other "ologist" in between. We enter the date of the appointment and the purpose. We also write out a list of questions that we have for the doctor so we will not forget to ask anything and provide space for the answer. If it is our first visit we make sure to get a business card that we later tape onto the first page. If the doctor has more than one office location we make sure to note that too. We also used the notebook for our meetings with the state social worker (called a support coordinator) who we met and subsequent therapists.
The expanding file (you might want two) I made labels for each type of doctor (heart/ear/eye) and also for each therapist (physical therapy/occupational therapy/speech) and a separate label for our state agency. The expanding file is so helpful because all the documents we receive from each doctor's visits and the progress reports from the therapists are all together. It's also where we put our Individualized Family Service Planning reports that we receive from the state support coordinator every 6 months.
Using both these methods have been very helpful since we can easily reference in our notebook what doctors we've seen (each doctor always asks about the others) and what treatment if any our son is receiving.
Well, this is much longer than I anticipated for my first post so I will end here.
My son was diagnosed with down syndrome five days after he was born. My husband and I were in shock and I never truly had a chance to grieve the boy that I thought I was going to have. Through the whirlwind of the first few months, I was left with barely enough time to breath much less process what my son's diagnosis meant and what that would mean to our family life. Every time I told someone my son had down syndrome, the words were followed by silent tears that rolled down my cheeks - tears that I could not stop even if I tried. Now there are no more tears, just a little boy who loves being a younger brother to his older sister and a reality that is truly normal.
I am blogging to share things that have helped us and my son and that would be potentially helpful for other parents with a baby that has been diagnosed with down syndrome or other special needs. Of course, my suggestions are merely that - suggestions.
So I will start at the beginning.
First, we use a spiral or hardcover notebook and 13 pocket expanding/accordion file.
The notebook we bring to every doctor's appointment, from the pediatrician to the cardiologist, ophthalmologist and every other "ologist" in between. We enter the date of the appointment and the purpose. We also write out a list of questions that we have for the doctor so we will not forget to ask anything and provide space for the answer. If it is our first visit we make sure to get a business card that we later tape onto the first page. If the doctor has more than one office location we make sure to note that too. We also used the notebook for our meetings with the state social worker (called a support coordinator) who we met and subsequent therapists.
The expanding file (you might want two) I made labels for each type of doctor (heart/ear/eye) and also for each therapist (physical therapy/occupational therapy/speech) and a separate label for our state agency. The expanding file is so helpful because all the documents we receive from each doctor's visits and the progress reports from the therapists are all together. It's also where we put our Individualized Family Service Planning reports that we receive from the state support coordinator every 6 months.
Using both these methods have been very helpful since we can easily reference in our notebook what doctors we've seen (each doctor always asks about the others) and what treatment if any our son is receiving.
Well, this is much longer than I anticipated for my first post so I will end here.
Subscribe to:
Comments (Atom)