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Guest Blogger: Meet Jesse!

Posted Jan 13 2013 6:45pm

Today we have another guest post: Meet Jesse! He came into his family as a foster child but will very soon become a permanent family member. How awesome is that? Please note: His family has permission to share his photos so no worries:) Read about Jesse below.

Tell us a little bit about your family and your child:  Our child Jesse is 3 1/2 and came to us as a foster child at 13 months old.  We are still in the process of adopting Jesse as his case is hung up in court, but will officially make him our son some time in 2013.  He is the baby of 6 and is spoiled by his older brothers and sisters ages, 14, 11,9, 8 and 6.  Jesse has septo-optic dysplasia with hypopituitrism and is autistic as well.  He has limited vision, seeing differences mostly between light and dark.

Jesse, the younger boy wearing red in the center, and his family.
Name your child’s 5 favorite things:  
  • Music (all kinds) 
  • cake (all kinds)
  • anything with buttons to push
  • hair ( I know it’s weird, but he shows affection by, rubbing or pulling your hair)
  • his mini trampoline with a handle.

Any new milestones you want to brag about?  Jesse is going to preschool 4 days a week and is doing well there.  He also is potty training and it is going better than we expected.

What is your favorite local resource:  Unfortunately, we have not found very many local resources as we are in a pretty poor county, but The Children’s hospital in Denver (about 1 ½ hours away from us) has been great!!  Also the ARC has been really helpful.

What is your favorite web resource: I really like blogs from other mom’s of VI kiddo’s, like Thomas Marshall does it all, Wonderbaby and There is a Lionheart in the bathtub.  It is nice to hear real stories from real moms with real kids, with real problems and what they are doing to help their kid’s learn and grow and overcome.

What has therapy (Early intervention, school, private) been like for your child?  Well, Early Intervention was tough for us to navigate and find good therapists because social services was so involved and we had to go through about 10 avenues to get what we needed before we got it.  By the time we had figured out EI, Jesse was 3 and the school district was taking over.  Jesse loves preschool, but we have had a hard time with IEP stuff and teachers and or therapists not agreeing with us on what Jesse’s needs are.  Private therapy has really worked the best for us, because we were able to find the best therapists for Jesse and for our family.

What do you wish people understood about your child?  I could go on and on here, but will try to make it short.  1. Jesse is blind and autistic and need’s treatment/therapy for both.  2. You can’t catch blindness or autism from Jesse.  3. He can do a lot on his own, just because he can’t see doesn’t mean he can’t do it, give him the chance to try. 4. You don’t have to yell, he is blind not deaf.

Can you think of one thing that really improved your life that you want to share with other parents?  Having a good support system and babysitter is crucial; we all need a break sometime no matter how much we love our kids.

What advice would you give to new parents of blind children?  You know your child best and are their biggest advocate, don’t let other people make decisions for your child that you know are not right or are not going to be helpful.  Researching things is great, but every child is different and you know your child better than anyone, so don’t get caught up on I have to do this or that because so and so said to.

Thanks for the wonderful post, Richel! Giving all children a chance is something I completely agree with. How wonderful that Jesse is soon going to be a permanent member of your family. Congratulations!!!
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