Dear Hayden- P.S. I love you

 

  Fragile X, Autism Spectrum issues, PDD-NOS....oh how I wish I could say I only heard about those things. My son has PDD-NOS.  He is going to be tested for Fragile X syndrome. I am crossing my fingers that this test will come back as negative. He does have some of the features. I wonder how many parents out there know what it feels like to be here, not knowing. I would rather not know I think, because a diagnosis of Fragile X may take away my hope.


  I have two boys and one girl. Both of my boys have issues. Davy's, I wrote about the other day.

  Hayden's...well that is another story.

   We sat in the doctor’s office yesterday. She asked question after question. He made no eye contact. He fidgeted nervously in the chair. He acted "Autistic". Nothing is worse than seeing your child disappear in front of your eyes. Nothing is worse than knowing that you might do everything right and that child still might not have a future. How do you explain this to other people? I don't think you can. They can try to empathize. This walk sucks.

   Hayden was originally diagnosed at age 2. He is now 11. He has always had issues. Hayden is loving, kind, smart, and funny. He is sweet, thoughtful and fair. He does not see the bad in people. He is good. He works harder than any child I have met. He is a gift. I treasure him. I love him. Every day is a day we try to teach him how to be as normal as possible. Hayden is special. Not "special", but truly a special kid who fills us with love.

  Hayden is high functioning. I cannot imagine what it must feel like to have a low functioning child. I want to tell other moms who deal with these issues, you are wonderful people. This is hard. 

  It is different with David. He has food allergies. I cannot do anything about that, except watch his diet and try to keep him safe.

  Hayden, we can teach him. He has learned so much more than anyone ever thought possible. Hayden is a character. He can do this. If he doesn't, he will not have the life he dreams of... My job is to give him the tools.

Dear Hayden,

  If I can do anything with this life,  I will give you the tools to have a job and a chance for a wife. I would give you all that I had, just so you would not have to go through this life being sad.  I will help you heal.  I would give up everything I am, to help you become a man.   The most important thing that I want you to know....  is that I believe in you.  You can and do anything you set your mind too.  You are perfect just the way you are.  You can and will go far. 

 -mom

P.S.  I love you


I am grateful for this life, but I am going to allow myself to cry today. Perhaps for just five minutes. Then, I will get back on my feet and move forward creating a new plan of action. We have until he is 16 years old to get this right. Then...we must start planning transitioning into adult life. 4 1/2 years... that is not a lot of time.

Gratitude's ~ Day 18 A Trip in Germany and a Visit to the Doctor

  I am a couple of days behind writing my gratitude journal. A lot has happened in those days too. Some wonderful, some the same, no matter what, life happened so I have a lot to be grateful for.

                                             Gratitude's~Day 18 

1. Day Trips~ we took off on Saturday to Bernkastel-Kues , Germany in the Moselle valley. This quaint German town offers unique buildings of half-timbered houses, beautiful landscapes with vineyards along the hills. We stopped at the castle ruins of the Landshut overlooking the Bernkastel valley. Fun was had by all!! I am grateful for this day of sightseeing.




Landshut Castle Ruins

Half timbered House In Bernkastel -Kues

2. Eating out~ We finished our day of sightseeing by eating at the Zegrab restaurant in Bitburg Germany. The food was good. I am grateful that we can eat out.

Just outside after dinner in Bitburg

3. Relaxing Sundays~ In Germany, Sunday is a day of rest. Boy did we need it.  We rested the day away in the quiet of our house. I am grateful to be able to take a day to rest.

4. Hayden~ I have written that I am grateful for my son before. Today, I am grateful for his good attitude. He started the re-evaluation process for an Autism spectrum disorder this morning. He did fine. It was only a few minute into the interview that I knew his diagnosis was going to remain PDD (Pervasive Developmental Disorder). My heart always breaks watching him answer questions. He doesn’t really understand that he is different. I, most of the time, do not see it either. Today, it was painfully clear. The doctor asked him all sorts of questions. He did just fine. I love my son.  He is fine the way he is.

http://www.autismspeaks.org/navigating/pdd_nos.php

5. Friends~ I had a friend send me a note to make sure all was well. The note was welcomed and needed on my part. I am thankful that my friend took the time to ask.  Thank You Sarah.  I "heart" you.

6. Time~ I am grateful that we still have 6-8 years to work with Hayden to prepare him for the real world. After seeing him today, I realize we still have some work to do. I am grateful for time.

7. The doctor~ The doctor agreed that Hayden is not ADHD and does not need medication. This is GREAT news!!!!   She observed my child and saw what we see. I am grateful for a good doctor and no meds.

8. Sleep~ I am exhausted. Tonight I get to sleep. I am grateful to sleep.

9. My father~ I just had an uplifting conversation with my dad. I am grateful for my father.

10. As always, life~ Every twist, turn, bump and slump offers something good to look at. As long as I am alive, I have something to be grateful for. Have a good day everyone.

   There is so much I could write about Hayden’s appointment today. Perhaps I will sit down and talk about it later, but for now I am going to leave it as it is.

Giggle for the day:    Doctor to Hayden, “Have you ever heard the saying ‘When Pigs fly’?” Hayden’s answer, “Yes that would be when Swine Flu!” Got to love that kid!