Poem: How Long Lord?


                                     The phone rings — chaos!

                                     Another sorrow; instantaneous…

                                     How long Lord?

                                     Twenty-five years…

                                     Unrelenting — Autism!


                                     Upsets — unprovoked…

                                     A dear son, broken

                                     While needing restraint.

                                     No one comprehends…

                                     We hurt with him.


                                      How does one prepare?

                                      The shock ever new…

                                      Our faith shaken,

                                      But not overwhelmed.

                                      God is Sovereign —

                                      Our son is HIS!


                                 By: Carole Norman Scott

                                       September 18, 1990

             (Ben was 28 years old at this time.  His arm was

                             broken in the midst of an upset.)

3 Responses to Poem: How Long Lord?

  1. Karen Golden says:

    Hi Carole, yes Ben has been on a gluten and casein free diet for about 10 years. It has helped him a lot and when he gets gluten he can’t digest it and causes him pain. I am glad you had a great Christmas with your Ben. You are very inspiring to me. I appreciate your blog. God bless.



  2. autism45 says:

    Karen, I’m SO glad that you can see that I CAN relate to what you are dealing with. We don’t on a full-time basis though, and what you do is AWE-INSPIRING! God IS with you, or like you said, you would NOT be able to withstand it! I will put you on my prayer list for those dealing with autism. Have you had your son tested for Gluten intolerance? We have not, but considered it strongly! Ben is home right now for his Christmas visit (nine days), and has done SO good! He likes working puzzles, and “whizzed” through two 300 piece ones the past several evenings. I know the deep hurt of the “outbursts.” I too, think that it is at least partially because they cannot verbalize their wants and needs AND hurts. Your son sounds SO much like our Ben. Isn’t that something that they are both named Benjamin and both have red hair? Keep in touch…my email in Lcarolescott@aol.com if you ever need to “just talk!” God bless you RICHLY!


  3. Karen Golden says:

    Hi Carole, I came across your link to your blog from the Autism Society of Ohio. Your poem “How long Lord” really says it all. My husband wrote a song for our son several years ago. Our son is soon to be 39 years old. As I read your story I am amazed at the uncanny similarities. My son’s name is also Benjamin and he has red hair. When he was about 3 years old he had a seizure and hit his forehead on the cement and had a big knot right in the middle of his forehead which turned into two black eyes. We have pics of it also! He didn’t even cry. He didn’t hug or want you to hug him as a child but will as an adult gives us big hugs. The sleepless nights, spinning lids, sound sensitivity, playing with shoe strings and even shredding curtains or carpet to get a string. My Ben bites his right hand above the thumb. He became aggressive at the age of 14. He still lives with us but we do have a waiver so we have help. Thank God! We have never met anyone else who was even close to what we have gone through. Thank God we have faith to get us through because we could have never done this without Him. The pain and heartache is sometimes unbearable. When your son hits you it is the most heartbreaking experience. I know God heals the broken hearted but my heart is still very much broken. I love my son so much and I can’t even imagine him moving out. When he was 18 months old a neurologist told us to put him in an institution and forget we ever had him. Today his level of functioning is less than a two year old and he does not talk. I believe most of his behaviors are because he is in pain. He has had constipation and digestion issues his entire life. My heart aches so much for him. Today he was a complete angel. He laughed and interacted with us. Gave us hugs. He was happy even though we had a new person in the house that was being trained to care for him. It was a wonderful day and I hold onto those days because in a split second he can scream and bite his hand then attack you and destroy furniture or walls. I am not complaining this is just the life we have lived. My husband and I are still married which is a miracle. He is very faithful and wonderful father. We have a daughter who is married to a man who is just like her father. We have a beautiful and healthy granddaughter. We are blessed but we will never be at peace until our son is at peace. Jesus said He gives us His peace but in all the turmoil sometimes it is hard to find. I will hold onto today and the hope that He has shown me that Autism can be defeated. It will be defeated. Faith is the substance of things hoped for and the evidence of things not seen. Heb 11:1 Thank you for sharing your story and your hope in Jesus. God bless.


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