If you are joining this blog for the first time, welcome! Please feel free to read through past blogs. I have two natural children with Down syndrome and this blog offers a reflection of our life.
Today was a day of emotional "highs" and "lows".
This morning I went over to St. Louis University and spoke to first year medical students about being a mother with two children who have Down syndrome. What an honor! This was my third year being a "guest" speaker. I was able to just update my talk and add a few pictures to the slide show. Sounds so simple, but I still get "butterflies" every time I talk. Joshua (the 2 1/2 year old) was my stage buddy and he did fabulous!
The students were very attentive and asked some really great questions! In many ways I feel like this is one way I can advocate for all people with Down syndrome. I am always humbled and blessed by this kind of opportunity! As I drove home I was mumbling a silent little prayer, "Lord, this is what I was created to do! Thank you for opening this door! My boys are such a gift and I know you, Lord, are the one who gave them to me! Thank you! Send me, Lord, wherever you want me to go!"
With every "high" there is a low... Shortly after getting home from St. Louis University I received a phone call from school. Caleb's teacher called to inform me that he had punched his aid in the face. That Caleb is having "increasingly aggressive" behavior and that it has become a "real problem"... I just wanted to cry (oh, wait I did as soon as I got off the phone). I know Caleb is a VERY strong willed child, but I had no suggestions...
The teacher and I brainstormed some things. So, the next step will be to do a Functional Behavior Assessment so that a Behavior Plan can be implemented into his IEP (Individual Education Plan). For some time I have been thinking Caleb needs to see a Neurologist for sensory issues and "autistic" traits. We already have an appointment, but it is not until March. So, I called the Pediatrician's office it see if they could expedite the proses for us. The nurse (our favorite nurse) said she would call a few offices for us to see what she can do. I love our Pediatrician and her staff!
So today I have felt the "high" of being an advocate. By speaking up and sharing our story, I really felt like I was making a difference! Yet that "high" was short lived... the reality of life met me at the back door... There is always an issue... there will always be something that needs to be dealt with... Now my prayer is sounding something like this, "Lord, please just give me strength. Help me balance life in a way that I am serving you and my family. Help me, Lord, to be faithful no matter the issue... I just want to effectively help Caleb so that he can function appropriately... Lord, no matter the challenge I know you are in charge and you love us! Thank you! One more thing, Lord... I know I said to send me any where, but I really did not want to go to the Principal's office.. but if that is where you are sending me than I will go..."
It seems life is just one issue followed by another with very brief moments of sanity and peace!
Thursday, January 14, 2010
Sunday, December 20, 2009
Help?
If you are visiting this blog for the first time, welcome! Please feel free to visit past blogs... We are a family with two "natural" children with Down syndrome...
Have you ever needed help? Some times it is really difficult to admit that help is needed... It becomes even more difficult when that help is some what abstract (when the answer is not clear cut or the answer is emotionally hard to accept). Yet... when those emotional hurdles are jumped the and help is accepted there is a bit of freshness to life... Why is help so hard to accept?
Accepting help is admitting that whatever we are doing or how we are doing is not working. Or, that our circumstance is beyond what we can handle on our own. Accepting help requires humility and honesty... it is saying, "I don't have it all figured out... I need help..."
In the past few months some very exciting things have been happening with the boys: Caleb is becoming more potty friendly, he is learning to read, and he is becoming very independent. Joshua has learned to walk, he can feed himself, and he wants to do everything Caleb is doing. The boys are making great stride and we are so proud of them! Yet they frequently need help (dressing, tying shoes, wiping, bathing, walking, staying focused, cutting food...). I give them help gladly and willingly...
A long with these very exciting accomplishments I have had to stop and admit that I could use some help. (Okay you can laugh...) We were not sure that Joshua would be walking for pre- school. He not only has low muscle tone (from the DS) but he was born with clubbed feet. We have done surgery, casting, braces... nothing seemed to help. His left foot trips him up all the time (literally). With the help of his Physical therapist we started looking into a "push chair" (wheel chair) that would be transport safe for on the bus. She was bold enough to mention that Caleb may benefit form a chair as well. (He likes flop on the ground when he does not want to do something - like in the middle of Walmart, the parking lot, church, school, zoo, park, restaurant...) Not only does he "flop and drop," he has serious sensory issues so with the wrong type of noise or touch he has a complete melt down. Please... I did not want one wheel chair let alone two! "Come on, people already stare at us! I don't want two wheel chairs for people stair at as well!" I did not say that out loud of course... but can you hear the little tantrum I am throwing?! I agreed to meet with the representative but made it very clear that I did not want "push chairs" that looked like a wheel chairs!
By the grace of God someone gave us a "transport" chair for Joshua!!! Amazing... these things are thousands of dollars. And yes, it looks like a wheel chair... I am not selfish (or wealthy) enough to say, "Sorry, I don't want this free chair because it looks like a wheel chair." We (the PT, the boys and I) meet with the "wheel chair" guy to look at options for Caleb and take measurements. Caleb was beyond crazy that day and Joshua likes to be just like his big brother. It was a fun day (do you hear the sarcasm?). We also talked about funding (we can't afford these chairs)... Insurance first than if that does not work Variety Club St. Louis' Children's Charity http://varietystl.org/ said they would help pay for it.
We could move forward.... so what was my problem? Me! I was my own problem... Emotionally I was not ready to admit that I needed help... That my boys needed a chair... "I don't want to be stared at..." "I don't want to explain..." "I don't need..." I... I... I... But it is not about me! Let's be real honest, we will always be stared at... I will always get to explain and educate about DS... and I need to be willing to accept any help I can get! Once I could see past myself the chairs became a blessing! A HUGE blessing... a back saving blessing! We are still waiting on Caleb's to arrive, but Joshua's is wonderful! No frills, but it can carry up to 100 lbs. and moves like no stroller out there (that would be because it is a "chair" not a stroller)! Even though it is way too small, there are many times Caleb has been stuck in the "chair" because he would not get up off the ground (back saving, I tell you).
Help?... yes, please, I will take all the help I can get!
Have you ever needed help? Some times it is really difficult to admit that help is needed... It becomes even more difficult when that help is some what abstract (when the answer is not clear cut or the answer is emotionally hard to accept). Yet... when those emotional hurdles are jumped the and help is accepted there is a bit of freshness to life... Why is help so hard to accept?
Accepting help is admitting that whatever we are doing or how we are doing is not working. Or, that our circumstance is beyond what we can handle on our own. Accepting help requires humility and honesty... it is saying, "I don't have it all figured out... I need help..."
In the past few months some very exciting things have been happening with the boys: Caleb is becoming more potty friendly, he is learning to read, and he is becoming very independent. Joshua has learned to walk, he can feed himself, and he wants to do everything Caleb is doing. The boys are making great stride and we are so proud of them! Yet they frequently need help (dressing, tying shoes, wiping, bathing, walking, staying focused, cutting food...). I give them help gladly and willingly...
A long with these very exciting accomplishments I have had to stop and admit that I could use some help. (Okay you can laugh...) We were not sure that Joshua would be walking for pre- school. He not only has low muscle tone (from the DS) but he was born with clubbed feet. We have done surgery, casting, braces... nothing seemed to help. His left foot trips him up all the time (literally). With the help of his Physical therapist we started looking into a "push chair" (wheel chair) that would be transport safe for on the bus. She was bold enough to mention that Caleb may benefit form a chair as well. (He likes flop on the ground when he does not want to do something - like in the middle of Walmart, the parking lot, church, school, zoo, park, restaurant...) Not only does he "flop and drop," he has serious sensory issues so with the wrong type of noise or touch he has a complete melt down. Please... I did not want one wheel chair let alone two! "Come on, people already stare at us! I don't want two wheel chairs for people stair at as well!" I did not say that out loud of course... but can you hear the little tantrum I am throwing?! I agreed to meet with the representative but made it very clear that I did not want "push chairs" that looked like a wheel chairs!
By the grace of God someone gave us a "transport" chair for Joshua!!! Amazing... these things are thousands of dollars. And yes, it looks like a wheel chair... I am not selfish (or wealthy) enough to say, "Sorry, I don't want this free chair because it looks like a wheel chair." We (the PT, the boys and I) meet with the "wheel chair" guy to look at options for Caleb and take measurements. Caleb was beyond crazy that day and Joshua likes to be just like his big brother. It was a fun day (do you hear the sarcasm?). We also talked about funding (we can't afford these chairs)... Insurance first than if that does not work Variety Club St. Louis' Children's Charity http://varietystl.org/ said they would help pay for it.
We could move forward.... so what was my problem? Me! I was my own problem... Emotionally I was not ready to admit that I needed help... That my boys needed a chair... "I don't want to be stared at..." "I don't want to explain..." "I don't need..." I... I... I... But it is not about me! Let's be real honest, we will always be stared at... I will always get to explain and educate about DS... and I need to be willing to accept any help I can get! Once I could see past myself the chairs became a blessing! A HUGE blessing... a back saving blessing! We are still waiting on Caleb's to arrive, but Joshua's is wonderful! No frills, but it can carry up to 100 lbs. and moves like no stroller out there (that would be because it is a "chair" not a stroller)! Even though it is way too small, there are many times Caleb has been stuck in the "chair" because he would not get up off the ground (back saving, I tell you).
Help?... yes, please, I will take all the help I can get!
Tuesday, December 8, 2009
Pee Party!
If you are joining this blog for the first time, welcome! Feel free to read past posts...
This past weekend my mom and step-dad came to visit us from the great state of Kentucky (Grayson, Kentucky to be exact). We had a wonderful time visiting, and both boys loved the attention they received from Grandma and Grandpa! But the highlight of the entire weekend was on Sunday as the grandparents were packing up to leave...
I was talking with my mom as she was packing. Frank was out side taking things to the car and the boys were watching Veggie Tales! Being a mom of young children my ears are always on "hyper mode". One ear is always listening out for the boys, ALWAYS! Mid conversation with my mom I hear the bathroom door... "Oh, no!" I announce and run to the bathroom before it is decorated with toilet paper, or before Joshua (the 2 1/2 year old) can finger paint with commode water. Much to my surprise Joshua is still in the living room enjoying Veggie Tales... "Where is Caleb?" I ask myself. "Caleb is 6. He is too old to be playing in the bathroom... Please, Lord, not Caleb... I thought he was past this..." I quietly say in my head.
I open the door to the bathroom... it is Caleb! But he is not destroying the room is standing like a big boy, lights on, pants down, seat up, ready to pee!!! I quickly close the door and give the boy some much deserved privacy. I nearly cried with pride! Caleb was going pee pee by himself! I (along with Grandma and Grandpa) stood just outside of the bathroom listening to the ever so beautiful sound of Caleb urinating... As he opened the door we all cheered and clapped and sang his praise. We had a Pee Party for Caleb!
Now to parents out there with "typically" developing children this may seem a bit late in life... Caleb is six years old for goodness sakes... You are right! But with the Down syndrome many things happen on a slightly different schedule. Caleb has several factors that are working against him, once you understand these factors you will be celebrating with him! Kids with DS can have low muscle tone/control, therefore they have a hard time "holding it". There can be low sensory as well, meaning they do not feel that they need to go potty. Finally there is the issue of communication. Caleb has many words but pronunciation is a real factor. Caleb pees and poops on the toilet, however we have to physically take him there. Sunday he was able to listen to his body, control his urges and than take care of his need by himself!!!
I know we are not there yet... he has not repeated this great feat again... But he will and when he does we will have anther Pee Party!
This past weekend my mom and step-dad came to visit us from the great state of Kentucky (Grayson, Kentucky to be exact). We had a wonderful time visiting, and both boys loved the attention they received from Grandma and Grandpa! But the highlight of the entire weekend was on Sunday as the grandparents were packing up to leave...
I was talking with my mom as she was packing. Frank was out side taking things to the car and the boys were watching Veggie Tales! Being a mom of young children my ears are always on "hyper mode". One ear is always listening out for the boys, ALWAYS! Mid conversation with my mom I hear the bathroom door... "Oh, no!" I announce and run to the bathroom before it is decorated with toilet paper, or before Joshua (the 2 1/2 year old) can finger paint with commode water. Much to my surprise Joshua is still in the living room enjoying Veggie Tales... "Where is Caleb?" I ask myself. "Caleb is 6. He is too old to be playing in the bathroom... Please, Lord, not Caleb... I thought he was past this..." I quietly say in my head.
I open the door to the bathroom... it is Caleb! But he is not destroying the room is standing like a big boy, lights on, pants down, seat up, ready to pee!!! I quickly close the door and give the boy some much deserved privacy. I nearly cried with pride! Caleb was going pee pee by himself! I (along with Grandma and Grandpa) stood just outside of the bathroom listening to the ever so beautiful sound of Caleb urinating... As he opened the door we all cheered and clapped and sang his praise. We had a Pee Party for Caleb!
Now to parents out there with "typically" developing children this may seem a bit late in life... Caleb is six years old for goodness sakes... You are right! But with the Down syndrome many things happen on a slightly different schedule. Caleb has several factors that are working against him, once you understand these factors you will be celebrating with him! Kids with DS can have low muscle tone/control, therefore they have a hard time "holding it". There can be low sensory as well, meaning they do not feel that they need to go potty. Finally there is the issue of communication. Caleb has many words but pronunciation is a real factor. Caleb pees and poops on the toilet, however we have to physically take him there. Sunday he was able to listen to his body, control his urges and than take care of his need by himself!!!
I know we are not there yet... he has not repeated this great feat again... But he will and when he does we will have anther Pee Party!
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