Posted by: Nancy Brown | May 8, 2007

The cutest thing….

So any one who has ever dealt with *special needs* its exhausting sometimes. Not the child itself but the things you get to do. This is not a complaint but there are things that you get to do with a child that has more needs than others who have normal children.

After moving to Arizona where the Early Intervention program is not the same it is a lot of extra work on my part to get things all set up. The intervention stuff we need is pretty similar but we have to find our own therapists, turn it into the AZIP people and then go from there. No big deal just different. It makes you get out of your comfort zone for sure!!

Anyway, every Monday we go to the Foundation for Blind children to a play group and a parent group. I love it. I have met some great moms and we are all in the same boat. There is mostly boys ( which is apparently pretty odd) but they are all close to the same age. Most have CVI, and have had strokes and have been full term. Ty is the only preemie and he has ROP plus disease instead of CVI so he might be one of the only kids with *full* vison but his vison loss is still there. Until you have a kid with Vison loss I can honestly say you don’t get it. That it self is another blog by itself… so anyway…

For the play group we go in for music therapy and Ty LOVES it. We sing songs and he can point to his body parts. He is getting pretty good and pointing to them all. He loves the clapping songs and he loves the wiggle songs.  Then we go to the different activites. Usually there is a taste group, craft group, books and light play. Tyler loves the taste group and the light play. He fell in LOVE with strawberries from group and the light play can keep him entertained and all the workers who watch him for hours.

The parent group starts at 10-11:15. We have speakers or open discussions and get away for an hour with adults and with people who * get it*.

Well today we had a great speaker. Her son has craniosynostosis and has had 4 repaires. She said that she has never met a mom who has had repeat surgeries to fix it till today. ( not sure that is something to be proud of but I am that mom) She was so great and I learned so much from her.

When we were done she came with us to pick up our kids. Ty was there and he was so happy. He had taken a nap with one of the workers holding him and he had played and played and they all laugh at him. He is so funny.  I got in my bag to get things ready to go home and found a GREAT present.

The note says I amy not be able to say in my own words, but I love you very much. For all you do for me I want to do just a little something for you…. After you put me teo bed and kiss me goodnight make yourself a nice and relaxing bath with these bath salts I made for you. In fact there is enough for 2 bathes. You deserve a little pampering because I love you very very much!! Love Tyler…

For those that read that have *typical* kids I feel you miss out on a lot. Don’t jump to a conclusion of using it as a crutch until you ask or walk a day with those who aren’t Typical. BUT for those who count every SINGLE CALORIE, For those who get the devastating news of bleeds, or blindness, unknow territories of a diagnosis that you know nothing about. For those that have walked in the shoes of knowing what the inside of a hosptial is like as your home. Know that there are others out there that understand and silently feel for you on those good days an those bad.

I know that I don’t feel on this blog sometimes I can write my true feelings of what I feel and what I go through for fear of retaliation from others. But I do know that sometimes being * different* is hard, but it really is worth it when you see that someone else appreciates what you do….

 So.. this week, you may have a special needs kid.. But THEY ARE SPECIAL and we NEED them. They are ours and what a joy.

Thanks Bubba!! for the wonderful gift. I am so glad that you made me a mom.

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Responses

  1. that is so cute! You really do deserve to just relax! Relax in that nice big bathtub you have! Believe me, it is nice! 🙂 Miss you guys lots!!!

  2. That is so neat that you have the playgroup and a place to network with other moms who have been there. Tyler is pointing to body parts? Thats great!

  3. I just found your blog and look forward to going through and reading all of your past posts. My son (only 5 months now) was also a preemie with PVL and vision loss. I know your experience will help us on our journey!


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