Monday, October 12, 2015

Common statements about special needs, my answers

For Down Syndrome Awareness month I always feel compelled to take that extra minute to provide education and tips on subjects that may or may not ever come up in daily conversation with my friends and family.  My prayer is that I may write something that helps someone looking for the "right words" when it comes to talking to a parent with a child or children with a disability.  I know that the words people use to describe my family dynamics or my identical twin boys, who both happen to have Down Syndrome and Autism, are heartfelt and well meaning. BUT....   I never seem to find the right words when certain statements like those listed below are said to me spontaneously.

1.  God knew what he was doing when he gave those boys to YOU!

So funny to see them BOTH with the same expression, unprompted
I have no doubt in my mind that God new what he was doing.  He saw me as a broken selfish woman who thought she had the whole parenting thing down.  Before the twins I was actively homeschooling my first daughter. I was a mom to three very typical very busy kids, ages 7, 3 & 1.  These three kiddos consumed my days and nights and I often felt so overwhelmed with the day to day tasks of keeping up the house and following the kids different schedules.  I looked at those with sick or misbehaved children with pity and relief that I was not enduring that in my perfect little family.  I confess that!! I remember thanking God on several occasions for my healthy happy children with the belief in my mind that I don't know how in the world I would handle something like that myself. Which leads me to my next comment.

2.  I don't know how you do it all
Honestly, neither do I!!  As we are about to celebrate the twins 10th birthday at the end of this week I truly do not know how we have gotten through all of our days during the past ten years?! Therapiesmonthly doctors visits more than two hours away (often occurring more than just once a month), after school programs, and many, many team meetings with behavioral specialist, autism clinics, down syndrome clinics, etc.  I look back and realize we have come so very very far with them yet I am still to this day an impatient person.  There are many days where I have to count to ten, or walk away, regroup and come back with a smile on my face or a calmer voice when trying to get the boys to corporate with one of my demands.  It's more often than not something that has to be done on "their time and not mine".  

VitalStim, a feeding therapy we did weekly for several months to improve swallowing and feeding issues.
I reckon I can relate our journey to a moms journey who has a son excelling in a sport.  She takes him to all of his practices, she provides him with all the extra support needed to improve his skills, she attends all the team meetings and volunteers for all the fundraising activities, she travels to all the games and cheers him on, she beams with pride when her son accomplishes a great play and in the end she has high hopes that something good will come from all effort and attention she has put into her sons athletics.  I am no different.  I do what I have to for my boys to achieve life skills to the best of their abilities.  That's my answer, I do what I have to, what I need to do for my boys to be the best they can be because of an unconditional love that I have for my children.  My story may be different than yours but our hopeful outcome should be the same, we must try our best for our children so that they may become their best.

3.  He doesn't look like he has Down Syndrome to bad.  Is he mild?

When the twins were just tiny babies and toddlers I heard this all the time.  I could tell there were people who were "afraid" to ask if there was something different about my guys.  Then there were a few who said statment #3.  The answer is no you can't have a different level of Down Syndrome, meaning mild or moderate Down syndrome.  If you have it you have it, there is no cure, there is no fix and there doesn't need to be in my own humble opinion.  Down syndrome is a genetic disorder where there is an extra 21st chromosome.  People with Down syndrome have three 21st chromosomes therefore Trisomy 21.  You can certainly do your research and find all the information you need to understand the differences between Trisomy 21 vs. Mosaic Down syndrome vs. Translocation Down syndrome.  There are however, different levels of cognitive abilities just like there are for people without Down syndrome.

4.  Please tell me you take medication to get you through.  How do you cope?

First of all, I have an amazing husband, named Tom, who works very hard and long hours to provide for our family so that I can stay home to tend to our homelife.  He also makes every effort to attend every out of town doctors appointment with me and all IEP's for school.  I genuinely thank God for the man he placed in my life to raise these children with.  I also have grown so much as a Christian since having the twins.  I attended church faithfully prior to having them but not as committed as I have become since having them.  Leaning upon the love and compassion of Christ allows me to try my best to be like him.  Knowing that I cannot ever be perfect nor know what to do in all situations allows me to rely on giving it all to God, and I so often do.  As Christ endured trials and tribulations we must all realize we too are subject to the same.  Knowing that if we follow the gospel of Christ, and truly live with him in our hearts and through our actions to others, we will all be made perfect someday in heaven.  The eternal promise is the reward, and THAT is how I cope.

**I must add that I do not condone those that seek help through medications.  
I am happy that such an aid is available to those in need!**

So do I feel like these boys have made us special parents?  Absolutely!!!  I know in the past 10 years they have showed me how to be more compassionate, more understanding, more loving, more tolerant and less selfish and judgmental.  I am excited to think that there is always room for improvement and growth and I pray to continue to become a better person for them and because of them!  To God be the glory for making us who we are!

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