A great feeling

I have to say time has healed our wounds! When we started this school year for Hannah, I was hopefully optimistic! I really believed something had to give and things would get better for her. I have to say for the 1st time since she entered the public school system 4 years ago, (age 3) we had an awesome year! You have no idea how good that makes me feel to say!  Hannah's teacher has honestly taken a vested interest in her, she has taken the time to understand how Hannah learns , what works for her and what doesn't. She has taken the time to get to know Hannah, her likes and dislikes, what makes her tick. This is the first year her teach has told me what an awesome ,neat, fun, sweet kid I have. It was so refreshing! It makes me happy, because I know how great she is. Hannah can be a challenge , but what 7 yr old with SPD isn't challenging at times? What 7 year with social and emotional delays isn't challenging from time to time? What typical 7 year old isn't challenging from time to time? As a teach of children with special needs you need to understand these challenges and deal with them the way the child needs you to deal with them. Her teacher has taken the time to figure out how to deal with those challenges!  

Hannah with her teacher and 2 aids

This year we have made a few pretty big "breakthroughs", 1st off Hannah actually started to make friends, she started to let down the wall she build up to protect herself from those who weren't nice to her! She has started to play in a group, instead of alone.  She has leaned there is not longer a need to be aggressive ,There are better way to handle her self beside hitting, kicking,or pinching. She has made such great advances. The 1st grading period of school she had an average 24 aggressive behaviors a week down to about 6.5 by the 2nd grading period. By March of this year she was down to 1.5 per week. This made me so very happy, we are getting close to getting our sweet, mild mannered little girl back!!! Her academics have soared, she is now almost on grade level. Her speech/ language has improved a ton!! There is a new excitement to learn new things and she once again loves school!! I'm looking forward to all the great thing to come for Hannah, I am excited to watch her grow and lean more and more each year. I am so very thankful we have found a place for Hannah, a place that except her for who she is and loves her almost as much as we do!  I am so thankful for all we have gone through (although at times I honestly thought I would lose my mind ) because on the other side there was was hope, encouragement and kindness. We landing in a place that I could have only dreamed of a year ago. We joined a school that honestly care for every student regardless of their ability. We have found a home for the next 4 years and I am so very thankful.

Glasses?!?

So we went to the eye doctor yesterday, and the time has come for Hannah to get glasses, we knew she would need them , we just weren't sure when (everyone in my family wears them) . My hubby and I both have horrible vision so we have made sure to keep up with eye exams. her vision isn't that bad, she is far sighted unlike me , I'm blind as a bat with out contacts or glasses.  When it came time to try on glasses Hannah did pretty well but turned out there weren't any that fit her just right so we chose to go elsewhere. Well today was the day we were going to go and pick out Hannah's new glasses and get them ordered, with in 10 minutes in the store she had chosen 29 pairs she liked... Yeah it gets better!!! Then as we start to try said glasses on she begins the rejection process , I tend to play by Hannah's rules to prevent any unnecessary drama however that back fired today, as she rejected the  first 20 within 2 seconds of  trying them on, she started to lose the enthusiasm she had when the adventure started. By pair 25 she was crying and yelling " no glasses for Hannah , I don't want any"  so I let her cry and pout for a few minutes on the floor of a crowned large eye glass chain before stepping up and being the one in charge of the "game"!!! I stood her up, gave her 3 choices (to which she said no too all three) then I narrowed it down to one pink pair and one purple pair! She wasn't happy about it but she chose the purple pair. There are things Hannah doesn't like and trying something new is one of those things. Once the glasses were chosen, we went to the counter to get measurements and she did really well. Then the sales person asked Hannah to put on her new glasses so she could see how they fit, once again the tears started and it really wasn't pleasant.but after a few ooooo's and awwwe's she came around and started to look at her new self in her new glasses. This is just another part of the journey. This is just another hurdle we will over come and another adventure we will laugh about later in life.

Some days

There are some days I forget Hannah is a kid with special needs and then there are days it states me in the faces . And honestly I get very overwhelmed.. I get upset with my self when I get upset with her because I know there are emotions she doesn't understand, and she is not able to deal with them... Today was one of those days and my patients was super thin and we had a lot of ups and downs. I love my daughter and her disability is  part of her but honestly I hate the fact I am unable to help her deal with the emotions she is feeling at times.. Days like today make me sad and even though I know there are many parents dealing with it I feel very alone and unequipped to deal with her.  She was very moody today she went from playing in the sand box to swinging to crying and screaming all in about 30 mins then back to being calm reading books to being upset (crying) she couldn't watch TV . These are the days a special needs mom looks forward to bed time Separation anxiety and social/ emotional delays are exhausting. But I know that it will get better and we will both grow and learn to cope together. 

A new friend

I run 4 Is a "movement" that I have to say is a great movement! Tim Boyle  (Founder/Executive Director of “I Run For) started this January 2013.They match children/ adults with special needs with runners all over the world, they are called "buddies".  The children/adults are motivation to run faster or longer or reach personal goals and the runners, run for the kids who might not be able to run or even walk.  I just recently found out about this group. I decided to throw Hannah's name in the hat! Within 3 day we were matched! We were match with a awesome runner name Megan!  If you have a special need family member or if you are a runner  and you would like to join please check out the link I run 4 and for more information about the movement please check out Tim Boyle blog!

 

 Its been a few days and Megan has been running for Hannah and I have to say Hannah is already Megan's biggest fan! She is so excited whenever I tell her Megan posted a picture for her or has run for her. Although you are matched with "strangers" these "strangers" quickly become friends and even part of the family! We are so excited to watch Megan grow stronger, become fast as a runner and meet all her personal goals. As a mom I am excited to see a complete stranger became a true friend to my daughter. I am honored to call Megan my friend and I feel so blessed that someone we don't even know wants to support my little girl! I think this part of our journey will be one of the parts that last a long time and will become very special to Hannah. Thank you I run 4 and Megan for looking for ways to pay it forward, an offering love and acceptance to all types of children/ adult with special needs.

 

 



Day 1

Day 2



Day 3

Dear other parents at the park

By:Kate Bassford Baker 2012

Dear other parents at the park:

Please do not lift my daughter to the top of the ladder, especially because she has special needs and you just heard me tell her I wasn't going to do it for her. I am encouraged her to try by herself. I am not sitting here 15 feet away from her because I'm too lazy to get up. I am sitting here because I didn't bring her to the park, so she could learn how to manipulate others into doing the hard work for her just because she has Down Syndrome. I brought her here so she could learn to do it herself.

We are not here to be at the top of the ladder, we are here to learn to climb. We are here to build our gross motor skills. We are here to learn life skills. (For you and your child you may be here to play or run out extra energy, for us a trip to the park is about much more) If she can't do it herself she will survive the disappointment. And what is more important, she will now have a goal and the incentive to work to achieve it. In the meantime, she can use the stairs. I want her to push past limitations and put in the effort to reach a goal she set without any help from me (or you).  

It is not my job and it is certainly not yours to prevent my child from feeling frustrated or fearful.  If we shelter her to much we will have robbed her of the opportunity to learn that those types of things are not the end of the world and they can be overcome.  The world will not stop to help her later in life. She has Down syndrome she is not helpless.

 If she gets stuck, I will not save her immediately. If I do, I will again be robbing her the opportunity to learn to calm herself, assess the situation and try to problem solve her own way out of the situation. She has Down syndrome she is not incapable of thinking or problem solving.

It is not my job to keep her from falling. If I do I have robbed her the opportunity to learn that falling is possible but worth the risk, and that she can in fact get up again.

I don’t want my daughter to learn that she must have someone’s help in order to overcome obstacle. I don’t want her to think she is entitled to a reward without having to push through whatever it is that is holding her back from earning it

I want my daughter to know the exhilaration of overcoming fear and doubt. I want to see the joy and pride on her face when she accomplishes something she has worked so very hard for.

I want her to believe in her own ability. I want her to be confident and determined.

I want her to accept any limitation she might have and I want her to strive to figure out a way past them on her own significant power.

I want her to feel capable of making her own decisions, develop her own skills, take her own risks and learn to cope with her own feelings.

I want her to climb the latter without any help from you, (However good your intentions might be), because she can. I know it and if I give her a little space, she will soon know it too.

This may come to a surprise to you but if I do everything for I have failed her as a mother. I would be doing her more harm than good. So thank you for standing aside and letting me do my job, which consists mostly of resisting the very same impulses you are having, and biting my tongue when I want to yell “Be careful” and choosing, deliberating, painfully, standing back 15 feet instead of rushing forward.

As she grows up the latter will only get taller and scarier, and much more difficult to climb. And I don’t know about you but I would rather help her learn the skills she will need to navigate them now, when I misstep means a scraped knee that can be healed with a kiss. And while these 15 feet between us still feels (to her) that I am much too far away. The world is a scary place for all kids but with children with special need there are so many more people saying they can’t do something or underestimating their abilities. Teaching her these things now will make her confident and capable of standing up to those who doubt her and say to them “watch me!!!”

World Down Syndrome Day 2014

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October is Down Syndrome Awareness Month

October is Down Syndrome Awareness Month, as a parent of a child with DS I thought it would be fun to share some fact about Down syndrome. In this post I wanted to be more informative and help people understand having a child with Down syndrome is not the end of the world, in fact it’s an awesome journey only a lucky few get to experience. People with Down syndrome are more like you and me than you may think. I know a lot of these facts can be goggled but I thought I would be nice and pile them all in one place. I know there are tons of facts but I came up with 10. Alright let the facts commence!

FACT 1: The medical treatment of people with Down syndrome has advanced remarkably over the years. Because of this, the lifespan of people with Down syndrome has also increased. In 1929, the average lifespan of a person with Down syndrome was just 9 years old. In 1983 it rose to 25. Today, people with Down Syndrome are living well into their 60’s and will likely continue to rise with the advancement in medical care.

FACTS 2: 90 % of pregnancies with prenatal diagnoses of Ds are aborted.
(If I could talk to one of those parents I would tell them, yes, having a child with Ds can be very difficult. Yes, it will change your life in ways both good and bad. But it's worth it.)

FACT 3: Some scientists believe that people with Down syndrome may hold the key to a new generation of cancer drugs. Why? Solid tumor cancers are very rare in people with Down syndrome. It has been found that one of the genes on chromosome 21 encodes a protein that blocks a factor needed for blood vessel growth. They found that this protein, DSCR1, is overproduced in people with Down syndrome.



FACT 4: There is a baby born every 12 seconds in the USA; the CDC estimated the frequency of Down Syndrome in the United States at about 1 in 691 births. That's 6000 each year out of the 4 million babies born total each year.. It is one of the most common congenital disorders, occurring in all races, ethnic groups, and nationality.
Some more #’s did you know about 38% of Americans know someone with Down syndrome and there are more than 400,000 people living with Down syndrome in the United States. There are about 316 Million people in the USA that means about 120 million people know someone with Down syndrome! So as you can tell by the numbers I’m pretty lucky to be one if the chosen.

FACT 5: The appearance of children with Down syndrome may slightly differ from other children. They may have some unique medical problems, and will likely have some degree of intellectual disability. However, the severities of these problems vary tremendously from child to child. There are no "levels" of Down syndrome. A person either has Down syndrome or they don't. It can just affect people in different ways.

FACT 6:  Federal Register on January 28, 2013. “We are replacing the term “mental retardation” with “intellectual disability” in our Listing of Impairments (listings) that we use to evaluate claims involving mental disorders in adults and children under titles II and XVI of the Social Security Act and in other appropriate sections of our rules. This change reflects the widespread adoption of the term “intellectual disability” by Congress, government agencies, and various public and private organizations.”
In my book this is awesome news, there is something so harsh with the word “retarded”. As a mom hearing your child classified as “intellectual disability” is a much easier to hear than the “old term”.



FACT 7: Down syndrome is not a disease; it is a genetic condition. You can't "catch" Down syndrome. A baby has Down syndrome the minute the sperm meets the egg. It's not something a woman can develop during pregnancy because it is present at the moment of conception; as soon as the cells divide. The most common type of Down syndrome is Trisomy 21 or T21; it occurs because of incorrect chromosome division during meiosis. It results in the fertilized egg having three copies of the 21st chromosomes instead of two. There are three types of Down syndrome: Trisomy 21 accounts for 95% of cases, Translocation accounts for about 4% and Mosaics accounts for about 1%.
This fact is one I find myself “spouting off” a lot. People seem to think I didn’t take care of myself or I did something to “cause” this to my baby since I had her when I was “so young”. Well I didn’t, it was something I had no control over, it was my selected journey, and I am ok with that.

FACT 8: While the age of the mother can be a factor, 80% of people with Down syndrome are born to parents under the age of 35 because younger women have babies. (If anyone is wondering I was 29 when I had Hannah.

FACT 9: A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

FACT 10: Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives. If you don’t know someone with Down syndrome you are missing out. They would be your best friend and love you unconditionally.




Now you know the facts, I would like to tell you a little about how Hannah is just like any “typical kid”. She loves school, the computer, her iPad, books, puzzles, games, the color pink and anything to do with princesses. She has a smile that lights up a room and a laugh that's contagious. She gives the best hugs. She can go from sweet as pie to as grumpy as a bear in 5 seconds flat. Yep I said it! She isn’t away a sweet, happy kid. Children with DS have the same range of emotions as anyone else, people often say “she is always so happy, always has a smile on her face”...wrong!!!! She gets just as mad or sad as you or I might get. Maybe even a little more mad or frustrated then a typical person. Sometimes things are little harder for her, but that’s ok , there are something’s that are hard for me to learn. She has her own personally, she has her own way of doing things, and she has a strong will, she is my daughter and I wouldn't change one single thing about her. People with Down syndrome are capable, valuable, loving and unique individuals!




Liz