Reading Lists

Of course one of the first things we did when we got Justin's diagnosis was look for some information about DS. At the genetics center they gave us a book about babies with DS (appropriately titled Babies with DS). That gave an excellent overview of everything to know and what to do at the beginning. I call it the scary book because it gives all the increased odds for the various health issues Justin could have or develop, plus our increased risk of having another child with DS. I could only read a little bit at a time. I have since read another 5 or so books, plus portions of others as they apply to us right now. There is an awesome publisher called Woodbine House that offers books on lots of different disabilities, including DS. The DS books range from Early Communications Skills for Children with DS, to Nutrition for Children with DS, Mental Wellness for Adults with DS, and DVDs showing the various authors of the books. I am amazed at the myriad of resources that are available. Of course most of the books read like textbooks, because they are for teachers and professionals as well as for parents. I want to read all the books, but of course the cost is way out there, so we are getting them a few at a time, mostly as they apply to us. I found another mom who lent me a few of the books as well, and I just finished one of the not-so-textbookish ones yesterday.

It was written by a mom of a DS son, who is now an adult. It includes about 50 essays that she had written at various times in his development. The topics are so poignant and touching. It feels as though she looked in my head and wrote exactly what I am thinking and addressed each thought I have had. It is a scary in a way because it affirms that what I am thinking is real and that the issues are not invented. We will have to consider so many things that we never thought or imagined. She is not a Christian, so that is one aspect that is not in her writing. These are some of the issues that the essays address and questions that I have considered:

1. How will Justin make friends? Will he have typical friends, or only friends with special needs?


2. Will Justin learn how to read? Write? Ride a bicycle?


3. What will I do if someone calls Justin retarded? He is after all...


4. How mentally retarded (I HATE that label!) will he be? Will he be able to recognize other people? Friends?


5. Is it fair to think that Travis will care for Justin when we are unable or when we are gone?


6. Will Travis' wife love Justin?


7. Will Travis' kids wish they had more cousins? Justin will not be able to bear children.


8. Will we have enough money to provide for Justin when we are gone?


9. How do we teach Justin? Will I have the ability to teach him? DS children are supposed to be able to learn forever, until they aren't challenged anymore. I have to keep teaching him always.


10. Will the government programs be available to care for Justin when he is older? Everything is in place for children, when they are young and cute, but once they max out of the schools, there are way more people than programs and the lists are long, often 10-20 years.


11. How can I protect him from sexual abuse? I have this concern for way beyond what I do for Travis.


12. Mainstreaming or special school? Do we spend the money when he is young, or save it for later when the programs aren't as available?


13. How will Travis feel once he understands that Justin is different? Will he resent him? Be mad at us?


14. I have always been an overachiever (some call it anal!) and how will I accept/nurture my average (hopefully!) son?


15. How do I balance caring for Justin and caring for Travis? Travis already asks when we get in the car if we are going to the doctor.


16. How do I "discipline" Justin when he is an adult? He may have the body of a 25 year old, but he may act like a 10 year old. Is it right to treat him like a 10 year old?


17. Will there be a time that life is "normal" again? Will there be a time that we will be a happy family that goes to the park and takes family vacations again?


18. What will people think about Justin?


19. Will there be a time that I am happy Justin was born with DS or will there always be a part of me that wishes he was typical?
    

These are just a FEW of the questions that fill my head. Some sound incredibly harsh, others bring deep sobs. Some are passing thoughts and some cause hours and even days of contemplation. How can I not think of these things though? They are incredibly real, even if I don't want to admit it. I had a talk with someone this weekend and she mentioned that it seemed as though I am living in a spirit of fear and making decisions based on my fear. That shocked me a bit, but it also rang true. That is so NOT how I want to be! I want to bring each of these fears (that really is what all of these questions are) to God and ask that HE take care of them for me, and that he only give me the concern for the things that he wants me to face that day. I know that Justin is more than I can handle (even Travis is!) but I know that God continues to provide the resources in friends, family, doctors, Randy, and in Him for us to be able to handle whatever the day brings. That eases the tension in my shoulders if only for a bit. And I continue to read the books and take in the information and thank God that the information is there. And to ask that he help me for that day. Not for tomorrow, or next week, or next year. Some days are better than others, but I don't think that is different than what any parent faces. I am trying, as best as I am able, to let go of these fears and draw on God's strength. I can't, but God can.

And if you are interested, there actually are some good books from Woodbine House. There are personal stories and children's books that are excellent and if nothing else, they are something different to read.