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Special needs advice

Moms View Message Board: Parenting Children with Special Needs: Special needs advice
By Sandysmom on Friday, March 24, 2006 - 02:45 pm:

We received a letter in the mail stating that our family profile had been pulled for a little boy not quite 2 years old yet. (for adoption)

Well, this little boy has cortical blindness, intractable epilepsy, and something about encepholopathy, (I hope I have that spelled right).

My DH & I discussed this and decided that in later years, he(DH) would not be able to pick him up because of having broken his back and ongoing pain, etc...(It's a long story)But in a nutshell, when this little boy gets older, he will have to be carried here or there and that burden would be on me. Not that "burden" is the right word, but I think you know what I mean.

There is a part of me that is sad for this little boy and the fact that we are a good loving patient home and he will not have the benefit of being cared for by us.

I do have some experience of helping special needs children & children with burns but it was short lived. Anyway, you don't have to give me advice, I just wanted to vent.

It's just that earlier yesterday, I was praying and asking God what my purpose is on this earth and just a few moments later, we received this letter. I'm confused, I dont know...

By 2ofeach on Thursday, April 6, 2006 - 09:12 pm:

I know you said you didn't need a response but I just couldn't help myself...KEEP PRAYING!! Ask for a sign, He always comes through. We had a call one night about 9:30pm (while pres.Bush was addressing the nation about the 9/11 attacks) about a baby boy who needed a family, we had to decide that night and sign papers the next morning-- my husband prayed for a sign (untold to me) and I prayed for my husband to get a sign ( untold to him) the sign came in minutes... long story short
our son is now 4 yrs old!! Whether this is meant for you or not God will let you know, trust that feeling. Best of luck
THeresa

By Sandysmom on Thursday, April 6, 2006 - 10:16 pm:

Theresa, it's so funny you mentioned a "sign" because I really do think it was God's way of showing me that He really does want me to adopt; maybe not that particular child mentioned above, but you know what I mean. The whole time we've had our 11mo, and we've had her all her life, my DH & I said we are committed to seeing this placement through to the end and continue to pray real hard that she will eventually be ours. To that we continue to stand and will stand. Our little dd came to us in just as divine a way as our older dd. After what I felt was a direct "sign" from God, my family went back to the back bedroom and got ready for a baby with out even knowing a baby was coming. It was an act of faith. The next week, our pastor specifically prayed for us to be given a child and the very next day, little dd was placed with us. It has been a rough road with many bumps and ditches, but so far, she is still here. When we started receiving offers for other children, we said no because of our promise to see this through. There is a policy in our agency that you are only allowed to adopt one child or sibling group a year. At the time I wrote that posting, we were very close to losing our little dd because we thought she was going back to her mom. Then, her mom got jail time for a crime she committed and now little dd got to stay. So you see, I have literally been living a real life roller coaster and was a little depressed when I wrote that post. Thank you so much for your prayers and for caring so much. You're so sweet. :)

By Marcia on Friday, April 7, 2006 - 12:01 am:

Six of my 7 kids have/had some sort of special needs, including 3 with major physical/medical challenges. For us it just feels right. With or now 9.5 year old we were told she may never walk and talk. She's been through lots of therapies, but now talks non stop, and is a great little soccer player! We chose to not listen to the negative side of things, but to push her to reach her full potential. It worked!!
The three that I have/had with physical needs have all been permanent foster kids. None of them would ever have been able to walk because of their specific needs, and we knew that going into it. Sonja had CP,cortical blindness, a seizure disorder, was tube fed, and was close to 60 lbs when she died at 21. I did almost all of the lifting. If she had gotten much bigger we would have had to have a lift. Even though my hubby could easily do the lifting, the reality is that I'm the one who is here when it needs to be done.

What kinds of support could be offered to you if you choose to adopt this little guy? I would make sure that you had lots of support in place before going ahead, from the agency/state you're adopting from. It's an amazingly awarding life, but you do have to make sure you've got the help you need!
Good luck with your decision!

By Sandysmom on Friday, April 7, 2006 - 08:22 am:

As much as I love all children, our agency has a policy that you can only adopt one child per year and we don't want to lose our chance with our little dd now that it seems we have a chance. BTW, I don't really understand cortical blindness. Can you briefly explain?

I'm sorry to hear about Sonja. I can't imagine having lost a child. I'm fairly new so I hope you don't mind me asking how long ago that was. My heart just broke when I read your post. Lots & lots of hugs to you and your family.

By Marcia on Friday, April 7, 2006 - 09:00 am:

Thanks Sandy. Sonja died 2 years ago, and Tanner died almost 7 years ago. Not great times in my life!!

Cortical blindness means that the brain and eyes don't work together. Sonja could see a fry from across the room and start reaching for it, but her vision wasn't as functional as ours. It's certainly something that can be worked on with visual exercises.

I understand you not wanting to risk losing the little one you now have in your care. It makes me wonder why they would present you with another child, unless they know for sure that the little girl will never be available for adoption??

By Sandysmom on Friday, April 7, 2006 - 10:04 am:

The letter was from the Pennsylvania Adoption network, Called SWAN, not directly from our agency.

Again, so sorry to hear of your losses.


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