Change of Plans...Meet Jace

First of all I would like to express how happy and honored I am to share our learning experience and story about our Jace to all of you.  I feel that I am an open book and the more that you know about Jace the better.  I can’t help but to get tickled, be proud and also sad when I hear Jace telling other children about his disability. That is the #1 thing parents feel with a special needs child…an array of emotions happening all at once!!

Overall I had a great pregnancy.  I had one incident where at a dr.’s visit I had high blood pressure and high protein in my urine.  I was put on bed rest for 1 week and after that week all was well again.  At 34 weeks I noticed Jace had not been moving.  My mom, dad and I went to the doctor and after an hour we welcomed Jace to the world.

After 1 week in the NICU the dr. came in and told us Jace had suffered from a stroke while in utero.  This is what caused Jace to stop moving.  The dr. told us Jace would be paralyzed on the right side of his body.  Everything at that point happened so fast we could not keep up with what has happened.  I will have to admit that during the pregnancy I was so wrapped up with the sex of the baby.  I wanted a girl and Nathan wanted a boy.  The thought had NEVER crossed my mind of praying to have a healthy baby.  At that point sitting in the hospital with a sick baby your mind is racing.  Nathan and I thought “ Where did we go wrong...What are we gonna do…What have we done!!”  Then I got angry.  I got so angry!!  I would see young girls coming in and out of the hospital having these healthy babies like it was nothing to it.  But now I am the one that is lucky.  We are the ones that are blessed!  A dear friend pointed out to me that if it wasn’t for Jace I would not have met her and all the wonderful, amazing people along the way.  She is right!  Nathan and I knew nothing about life before our Jace.

So at this point we got connected with the services we needed for Jace.  Jace started PT and OT services through TEIS (Tennessee Early Intervention Services) and TIPS (Tennessee Infant Parent Services).  We were on the right track.  We were accepting and adjusting to our new family.

When Jace was 2 years old he was battling with frequent ear infections.  Our pediatrician referred us to see an ENT.  Our ENT does a hearing screening on all her patients.  And on February 2004 another nightmare slapped us in the face.  Jace was diagnosed with auditory neuropathy.  Auditory neuropathy is a hearing loss where sound enters the ear but the signals that travel to the brain is distorted.  I was incomplete shock!  Jace never showed any sign that he could not hear.  He would respond to all environmental sounds.

This was huge!!  What else could go wrong with my baby?

Jace was fitted with hearing aids and use of an FM system soon after being diagnosed.  The FM system is his own personal microphone that helps magnifies the speaker talking to him over background noise.  Now after learning about hearing loss it could have been so easy to just throw the towel in and say that’s it.  But Nathan and I prayed and prayed and prayed.  And through that we had the strength to handle anything.  We have got this precious, sweet little wild child that depends on his parents to take care of him and his needs.  So we had to learn!!  We had to learn what all these letters and initials meant.  TEIS, TIPS, OT, PT SLP, IFSP and IEP.  That is so overwhelming!!  But now we know.  Our sweet little family has accomplished so much.

So now with the hearing loss and the stroke (cerebral palsy) we asked the professionals to guide us in the right direction we needed to be in.  Jace started toddler group at Vanderbilt then followed to Mama Lere Hearing School till he was 6 years old.  Now I am proud to say that my Jace is in 2^nd grade in a mainstream classroom at Pegram Elementary school.  What an accomplishment!!  I am so thankful for every one that has been in his life and on this journey with us since he was born.  My advice to parents with a “special” child is to ask the professionals and /or other parents for guidance and support. It is a roller coaster of emotion and probably always will be but with the right support from family, friends and professionals we all come out strong.  My sweet, wild child Jace is as tough as they come and we adore and love him just how he is!  Thank you for taking time to read this and learn about our journey.  Take care!    

From One Parent to Another

I recently asked some parents to share with me the top 10 (or so) things they would say to parent who had a child recently diagnosed with a special need. I truly believe there is nothing better than sharing and talking with people who understand (no matter what you are going through) so I hope this blog serves as a way to connect people in some way.

Here is one family's TOP 10

1. Take a deep breath and say to yourself….”it is going to be ok”.  It may not seem like it right now but it really IS going to be ok.

2. You are your child’s number one advocate!

3. Knowledge is power. Start asking questions, read, talk to professionals and learn everything that you can. It will help you feel more capable of making the decisions that lie ahead of you.

4. Talk to other parents! There are lots of people out there who want to help you and who are willing to share their experience with you.

5. Act quickly. Early intervention is the key to success regardless of the primary communication path you choose. Once you feel that you have adequate information about all your choices, don’t put it off….make a decision and move forward.

6. Make a serious commitment to your decision and follow through. Making a decision about your child’s path is just the beginning. Now you have to do the work. Your child needs to develop good habits early on so make sure those hearing aids are on as often as possible. If they come off, put them back on. Go to therapy consistently. Do whatever you can to help make your decision a success for your child.

7. Surround your family with a strong support system. Talk to your extended family and friends about your situation. Try to help them understand and ask for their support. Once again, other parents who are going through what you are going through are extremely supportive as are the professionals working with you and your family.

8. Trust your instincts. If you feel strongly about something, let your voice be heard. You are the parent and you know your child best.

9. Do not be intimidated by professionals. It can sometimes be overwhelming to be surrounded by a group of professionals and you may not have the confidence to say what you would like to say. You are a very important part of the process and what you have to say matters.

10. Keep breathing. You are going to have very happy, successful days and you are going to have set backs and tough days. Just keep breathing and keep moving forward.

Hope this helps!  Any of you veteran parents feel free to leave some comments about what would be on your top 10 or shoot me an email at gjones@jonesslp.com with a list.