If this is your first time visiting my blog, welcome! Feel free to read through past blogs. I am sharing the adventures of raising our two biological sons with Down syndrome. Caleb is 6 ½ and Joshua is 3. I hope you enjoy!
It has been quite a while since I have had the chance to blog, sorry… I want to share some really funny things that other kids have said. I hope you get a good hardy, belly laugh at some of these great words!
A good friend Kyle (age 8 or 9 at the time) told his mom and dad that he meet a new “friend” at school. He said that this friend reminded him of Caleb. Kyle’s parents ask “How so?” After pondering this question for a while he carefully answered, “Well… he’s a man of few words!” They laughed and asked a few more questions than realized this new friend had Down syndrome! Kyle continued to play with and “look out for” his friend even when it was not popular with his other friends! We are blessed to have friends like Kyle!
Jared (age 6 at the time) and his family came to Joshua’s first birthday party. He watched as Frank changed Joshua’s diaper. Jared stood in complete and utter amazement then simply stated yet almost questioned, “Joshua has his privates?!” Not quite sure where Jared was going with this statement Frank remained silent as Jared continued, “Jordane (his sister) is FIVE YEARS OLD and she STILL doesn’t have her privates yet!!!” It was as if Jared had been waiting silently all of his life for Jordane to “get her privates.” Frank controlled his laughter until Jared left the room….To say the least Jared’s parents had a little talk with him a few days later!
Another friend, Trevor (age 11 at the time), got off the school bus one day very upset. There was kid on the school bus who was not being very nice and was taking other people’s stuff. This upset Trevor to no end! Trevor’s mom started coaching him about how to deal with bullies. But after thinking about the situation his mom realized that the boy may have some special needs… she was correct in her assessment of this young man. So her coaching changed to how to be sensitive, nice and understanding of those with special issues. After a great talk with his mom Trevor sighed, “I just wish all people with special needs looked like Caleb (and Joshua) so I would KNOW that they have special needs!”
We are truly blessed to have friends at embrace our kids! These parents don’t just want their children to be the “nice kids”, they want their children to grow up to be awesome adults… and they will be! My plea to all parents, grandparents, aunts, uncles, friends don’t be afraid to talk about Down syndrome or other special needs with your kids. Let them have friends that are different than them. Ask questions… and answer their questions. And yes, your kids will say some funny things too... and that's okay!
Tuesday, April 6, 2010
Thursday, January 14, 2010
Highs & Lows
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!
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!
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!
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