It has been a while since I blogged here on our page ~ frankly because we have just been SO BUSY with gowns, filing our nonprofit status, the fundraiser, computer issues and oh yeah, more gowns...it is hard to find the time to sit down and blog the stories of our families and take care of my own.
Tonight's blog is partially a test to see if it posts and works, but just my reflections on today, our family and part of the journey we are on and maybe pass along a little advice, tips, hope and inspiration to those who read this. As many of you have followed Gracie's Gowns for a while you know that our son was formally diagnosed on the autism spectrum this past summer. And while it was a diagnosis that we were expecting at that point it was still hard to comprehend, not the diagnosis itself, but what was to come after.
Today we had our 6 month follow-up with the developmental pediatrician that diagnosed David on the autism spectrum, sensory processing disorder, impaired fine and gross motor skills and the list goes on with issues all related to his autism. While waiting for this appointment, I met a mother who was going to be seen before us and was here for their initial evaluation...I knew what she was about to experience, the emotions, stress...the fear. We weren't able to talk much, but I told her this "remember it is just a diagnosis, something that your child is living with...but it is not who your child is." She was called back just after that and I was fighting back tears, remembering everything I felt 6 months ago.
Our appointment today, did not go as well as I was praying it would...it happens, there are ups and downs, but it really hit hard because we have been working so hard with him and trying to give him all the resources his needs to achieve great things in life...and it just didn't seem to matter. All his evaluations came back that he is still mentally and functionally in the same place he was when we first started our journey...despite everything we have done. The progress he has made, doesn't seem to matter as it isn't what they feel is important, but did we get strategies or ideas to work towards what is...not really, do I even know what is right now...no. But on the way back home after being there all day, I started saying the things I wish I had known from the start to help get us through the tough days...so here is my list of things I would say to someone just starting their journey with a special needs child of any condition and maybe some of you will find peace or comfort knowing you aren't alone.
Tonight's blog is partially a test to see if it posts and works, but just my reflections on today, our family and part of the journey we are on and maybe pass along a little advice, tips, hope and inspiration to those who read this. As many of you have followed Gracie's Gowns for a while you know that our son was formally diagnosed on the autism spectrum this past summer. And while it was a diagnosis that we were expecting at that point it was still hard to comprehend, not the diagnosis itself, but what was to come after.
Today we had our 6 month follow-up with the developmental pediatrician that diagnosed David on the autism spectrum, sensory processing disorder, impaired fine and gross motor skills and the list goes on with issues all related to his autism. While waiting for this appointment, I met a mother who was going to be seen before us and was here for their initial evaluation...I knew what she was about to experience, the emotions, stress...the fear. We weren't able to talk much, but I told her this "remember it is just a diagnosis, something that your child is living with...but it is not who your child is." She was called back just after that and I was fighting back tears, remembering everything I felt 6 months ago.
Our appointment today, did not go as well as I was praying it would...it happens, there are ups and downs, but it really hit hard because we have been working so hard with him and trying to give him all the resources his needs to achieve great things in life...and it just didn't seem to matter. All his evaluations came back that he is still mentally and functionally in the same place he was when we first started our journey...despite everything we have done. The progress he has made, doesn't seem to matter as it isn't what they feel is important, but did we get strategies or ideas to work towards what is...not really, do I even know what is right now...no. But on the way back home after being there all day, I started saying the things I wish I had known from the start to help get us through the tough days...so here is my list of things I would say to someone just starting their journey with a special needs child of any condition and maybe some of you will find peace or comfort knowing you aren't alone.
- There will be troubles ~ it won't be easy and it won't be fun...but it will always be worth it. Those accomplishments no matter how insignificant they are to the "professionals" they were enough to make you smile ear to ear and shed a couple of tears even...they are important not only to you, but to your child.
- Your child has _________ (insert diagnosis there), but they are not __________ (insert same thing). If you google their diagnosis or look it up in a medical text, you will not find your child's photo there, not even their name. It is something to live with, but not let live their life for them.
- Researching isn't a bad thing....IN MODERATION. We live in a day and age where you can find hundreds of thousands of articles, papers, blogs, websites and just general opinions about almost anything you can think of and it is great to read and learn as much as you can about your child's condition...but it can also harm you. CREDIBLE resources are key, but sitting in front of a computer for 8 hours straight isn't going to help you either.
- All the dreams, plans and ideas you had for your child may not happen, but it is okay. They were YOUR dreams for your child, not their dreams. Let them have their own dreams, challenge them to reach their dreams and support them each step of the way...what they end up liking and becoming will amaze you.
- You will hear the words "never, can't, won't and don't" from therapists, doctors and specialist alike...but as long as you don't use those words towards or about your child (other than protecting their safety of course) they can never be limited in what they can accomplish (learning this one ourselves).
- Your child will get tired from appointments, therapy and testing...and it is that much more tiring on you. Hang in there and try not to cram too much into one day if possible or schedule a break between appointments even. Down time is necessary to regroup, recharge and take on the next thing.
- ALWAYS remember if you are not comfortable with something to ASK questions...I call our pediatrician first with all my questions because other than us, she has known and sees David the most and has watched him grow on the medical aspect. She is my go-to lady with all my questions...and if she doesn't know, she talks directly to the department necessary and we make a group plan.
- Children sense your emotions, so when you are upset they act a fool, when you are sad they want to comfort you and when you are happy they give you more reasons to smile...remember to love on them through all of these emotions, so they know despite the craziness of it all, they are loved.
- Last of all NEVER, EVER GIVE UP. If you are told "this is the best things are going to be, we will see you in 6 months" take those 6 months as a challenge to show them your child has the potential you know they have.
Now that have just been the most random list of things ever...but I hope it helps.
If you can have snow and a rainbow at the same time, there is always hope for a better tomorrow.
The Kidds
If you can have snow and a rainbow at the same time, there is always hope for a better tomorrow.
The Kidds
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