Tuesday, December 13, 2011

Not an excuse....

This has been weighing on my mind for quite some time.  As most of you know I have two boys with disabilities, even though this blog primarily focuses on my youngest one, Andrew.  First of all, my boys are NOT an excuse!!  They are a reason!!  They are the
REASON that our life is different as a family.  My life is different from a typical mother, my husband's life is different from a typical father, my daughter's life is different from a typical 12 year old, and my boys lives are different.  I don't mean they are different in a "bad" way....just different.  Even through all the worries and day to day struggles, I wouldn't give anything for either one of my boys.

Sometimes the most hurtful and insensitive words can come from family.  We have had to distance ourselves from some because of their inability to accept that we have to do things a little differently.  A family member actually told me that I use the boys as an excuse for everything.  Webster defines excuse as an explanation for failure to do something.  Reason is defined as a rational ground or motive; justification.  I have been accused of doing or not doing many things since my boys have come into our lives.  When I attempt to explain why we have to do things a little different I am told that I use them as an excuse for everything.  You would think that as part of our extended family they would understand more than others.  Some of the most support and encouragement have come from our friends and church family.  The most hurtful things said and done have come from family.  Which, sadly,  tends to be the case with most families.  The ones that you would expect support from during difficult times, sometimes are the ones that provide the least.  Don't get me wrong, we do have family that try to help and support us.  Most of all, they have accepted us as a family and that we have to do things a little differently.  However, a lot of our family have distanced themselves from us.

We were also told by family that our sons did not need the therapies that they were receiving.  They told us that the therapies wouldn't help because they didn't need them.   

I have even been blamed for the sleep issues that my son has.  Andrew has been diagnosed with a sleep disorder, but it was also discovered that he was having multiple seizures during the night and we didn't realize it.  I was told that it was my fault for letting him sleep so much during the day and therefore, he's not hardly sleeping at night.  I had sleep deprivation for months.  I informed them that my son hardly even takes naps.  It's nice to know how someone knows exactly what's going on that doesn't ever hardly visit their relatives.  It seems as though a lot of assumptions take place instead of just asking about him.  I really hope they felt guilty about making these comments after they found out he was having multiple seizures.
Our society as a whole has come a long way in accepting adults and children with developmental disabilities in society.  However, there still needs to continue to be awareness and acceptance taught.  The schools need to be teaching acceptance to our children so that they grow up to be accepting adults.  We have even been told by a family member, "Well, when I was growing up you didn't see kids like him."  Many of you may be surprised by this comment, as we were.  First of all, don't refer to my son, Andrew, as 'kids like him.'  That is so degrading to Andrew.  Also, I want to ask, "Are you ashamed of him; embarrassed by him...Do you want us to hide him away, so that he's not seen?  Do you not think that he deserves the same opportunities as others?"  This comment was a reflection of how society use to view our disabled citizens, including children.  To think someone still has this view is appalling to me. I don't expect these kind of remarks from a family member.  How could anyone say that about their own flesh and blood?  This is a complete innocent child that you have degraded through these and many other insensitive remarks.  I would love to educate them if they would allow me to, but they aren't even interested in listening to any of the challenges that either of my boys face.  Nor do they want to hear why our lives have to be different for the best interest of our boys, especially Andrew.

List of things NOT to say to a parent of a special needs child:

-He looks fine to me.
   After a family member asked us how Andrew was doing, we explained some of the issues that he was facing.  We were told, "I just don't understand because he looks fine to me."

-He's just a boy.  All boys do that.
       We were told this many times when we would express our concerns about either of our boys development.  When a parent expresses those concerns please don't disregard them.  This was not done by the medical community, but mostly family and some friends.   These are not words of encouragement.  It makes the parent feel as though they are not validated or believed.  

-He will talk just like his brother did.
      This was told to me by a family member about Andrew in comparison to his brother, Matthew.  Matthew is high functioning autistic and is a completely different child.  Their differences are like night and day.  You can't compare the two.  Andrew's difficulties and struggles are far different and more complex than his brother's.

-If you wouldn't let him sleep during the day he would sleep just fine at night.
     This was said to me by a family member in response to my comment about how little sleep we were getting because Andrew was up all hour of the night and would only sleep for a short amount of time.  I wish he was sleeping during the day, then at least I could get a little sleep.

-When I was growing up, you didn't see kids like 'him'.
     We received this comment just this summer when Andrew was officially also diagnosed with Autism.  We were explaining some of the physical and behavioral difficulties he was facing, this was the insensitive response we were given.  This has been by far the most hurtful comment that has been made.  It hurts even more that someone would say this about a close family member.  They are missing out on a relationship with a beautiful and sweet little boy.  It is their loss.
-When he gets around other kids, he will start talking.
     I wanted to tell them, "Sure he will because we never talk to him at home.  Even his two siblings never talk."  Anyone that knows my older son knows he never stops talking.  It's not just talking, it's attempting to communicate as well.

-Isn't there some medication he can take to fix it?
    I was told this by a family member after telling them our news of Andrew's chromosome abnormality.  Sure, there's medication to give him the genes that are missing from his chromosome deletion. NOT!!  Why not just ask about it if you really are clueless about what a chromosome is?  They acted as if he needed an antibiotic and he would be just fine.

-You use your boys as an excuse for everything.
   A family member told me this when I was trying to explain why we had to do things a little differently as a family.  If the extended family can't accept my boys for who they are, have a little understanding,  and make any changes to allow them to visit more often, then they won't be visiting very often.  I will not endanger my children just so they can visit, however, you are welcome to come and visit us where my boys are most comfortable and the environment is much safer.  They are a beautiful reason why our lives are different.  It's usually friends that are more understanding of our boys needs and that some things have to be done a little differently to accommodate them.  Therefore, it is usually easier to visit our friends and church than some of our extended family.   

These are all comments that have been made to us in regards to one or both of our boys.  There are a lot more that shouldn't be said, but these are the ones that have been told to us and have hurt the most.  To those that have provided words of encouragement or just a listening ear....Thank You!  To our friends, family, and church family thank you for your prayers and support!  I try to hide my struggles and I want you all to know some of the simplest words have made a difference in my day.


  1. Amy....I went back and read this over and over, and each time I read it, the more certain that I am that God has a special plan for each of your children as well as you and Clint. I truly believe that God is incapable of making mistakes, therefore He has a plan in mind. And, His plans are ones that truly makes a difference in people's lives. As challenging as your lives are sometimes, I am also certain that God knows that you are parents that have the love and skill sets to enable your children to excel in their own ways. We are proud and honored to know and love your family....Teddy and Vickie.

  2. Thank you Teddy for your kind words. It is the support from others like you and Vickie that really does make a difference. I totally agree that God doesn't make mistakes. All of my children have already taught me so much. I have become a completely different person. I thought I knew a few years ago what path I was on with my life. Well, God has shown me that he has other plans for me. He has laid it on my heart to raise awareness to others and advocate for those that can't do it for themselves, not just my boys. Thank you both again for your support. Clinton and I are blessed to be part of a loving church family.

  3. Amy,

    I totally agree with Teddy. God DOES NOT make mistakes. People will fail you everyday and do things that can be hurtful, but The Lord is never failing and is always faithful. I will be praying for you, your boys and your family. You have been a blessing to me and I know many others. Hope you all have a Merry Christmas. With Love, LeAnn