I am fearful....yet I am thankful

As I was taking the babies to daycare today, I was deeply thinking of my new found fears. And then I came home, sat down to write, and first read this post on fear, and maybe it isn't a coincidence that I came across that post this morning.

Our journey as foster parents has brought about a lot of fears for me. I am fearful that I am "doing enough" for our babies, that I made the right decision for our others to leave, I am fearful that I will lose our babies, I am fearful that I am giving our bio children equal time. I could go on and on about my daily fears I have. Today, though, and a lot lately, I have been focusing on my fear of FASD. I go between wanting to know everything I can know....and then being afraid of the unknown, and then not wanting to know what "could come", and just take one day at a time.

I am fearful that our youngest baby will also have FASD, and then also fearful b/c his signs aren't as obvious, that he won't be diagnosed with it. I am fearful that if he goes to live with his aunt, that they won't take it seriously, (b/c they seemed skeptical when we tried to educate them), and he will have struggles that nobody will understand, or get him help for.

I am fearful that I will be a mother of 2 boys with FASD, and it will kick my butt. Oh I get overwhelmed with fear of this one. I will have to be on my p's and q's at all times, and am I capable of that? Children with FASD must have structure and routine at all times.....and I am so not a structured or a routine person.

I am fearful that others will not understand. That even myself will not understand enough. I am fearful that my quest to help them, may neglect my own children....and I am just as fearful that "other's" will try to blame me of doing just that thing.

I am so thankful though. I am thankful for an early diagnosis. I am thankful for awareness. I am thankful that God chose me to be their mother, and has given me these early resources. I am thankful that I have a supportive husband and family, that encourage me to love these babies. I am so thankful that I have unconditional "mother's" love for these babies that will make it easier to fight this fight. I am thankful that I have experience as a mother, and wisdome to know that "this too, shall pass" and to take each day at a time. I am thankful for the patience God has given me with our 1 yr old. Patience that I didn't have when my 3 were younger, but that I definately need for this journey. I am thankful that I have a heavenly Father that will carry this burden for me. Just last week, my prayer to him was that if he blesses me to be their forever mother, then he will also have to carry me through this journey, daily, and that I will only be able to do this with his help. I am thankful for all my friends that are such encouragers to me.

What FASD means for us right now....

This one is a tough one, b/c with his history of drug exposure as well, you don't really know where things are coming from. They told me it is actually very hard to diagnose it, and even more so at a young age, so I kinda felt lucky to get the diagnosis. I haven't quit figured out how to go about getting it, but they said that his diagnosis will qualify him for SSI, which he will get even once he is adopted. And he can stay on Medicaid, which will be nice, b/c if pays for everything medical.

When he was first diagnosed, the doctor asked me how I felt about him having that diagnosis. I told her it didn't affect us at all, and in a way, I was relieve wthat it would help him get money for the future. I know we don't have any guarantees that any of our children won't get an illness. I do know, though he already has cards stacked against him, and will need therapies and such, and we have no idea what the road ahead will be like.

I didn't think at first that the FASD would really mean any different from the drug exposure, so it didn't change things for me in my mind at all. We all love Zachariah, and we are all committed to just take each day at a time with him, each problem at a time, and deal with that. I am learning that the alcohol affects are much worse than the drug affects. As in, if he develops ADHD, or other behavior things as a result, medication may not help. His brain was affected while it was developing, so it is different. I have to learn new ways for him.

He was diagnosed when he was about 13 months based on the things I have mentioned. At the time, he didn't seem like he had any delays, but I was noticing some behavior things, and some sensory things, but both could have been contributed to his age...b/c 1 yr olds have tantrums, some babies rock themselves to sooth, and make weird noises.

Now he is 18 months old. He doesn't sleep well at night. This is one of the most common things I am finding with children with FASD. I am finding that I am lucky, in that when he wakes up, he begins his self soothing, and doesn't cry out for me to come to him. Some nights, he will sleep just fine. The other night, Christian was carrying on, and it never phased Zach's snoring. Other nights, like last night, he "rocks the house" most of the night. I use that term b/c in our 2 story home, his rocking and head banging literally do vibrate the ceiling downstairs. My mom, who slept on our couch one night can vouch for that! She was lucky enough to stay with us on one of his sleepless nights. He kept her awake most of the night....and me, being right across the hall, never even knew he was awake, b/c he never cried out for me. He wakes up, and either rocks back and forth, or will bang his head on the mattress in a rhythmic pattern. And hum....to the beat of his rocking. I talked with the FASD team about it, and they said there is really nothing I can to do for him. He isn't in distress, he is self soothing, and to just work out how it affects the rest of the family. Well, it really doesn't affect anyone. I do hear it when I get up with Christian, and it used to really stress me out...to the extent that I couldn't fall back asleep, but the FASD team eased a lot of my concerns. I bought him a glowworm for Christmas, and also hung a music player in his bed. Now, I know he is awake b/c I will hear his music playing. He has been a lot calmer with his thrashing since I got those things for him, b/c he has things to do while he is awake. I also play soothing music all night long. The team seems to think he will grow out of some of these sensory issues, and I am anxious to begin occupational therapy with him, which they think he will benefit from the most.

Behavior. That one is hard right now b/c 1 1/2 year olds have tantrums. Rachel was the queen of them. Zachariah's on the other hand, or more frequent, and more irrational. He will just throw down his body and scream. I can usually sooth and calm him easily, luckily. What is scary for me is that he rares his head back full force and hits the floor. Yes, he may cry that it hurt, but will again, do it 5 mins later. He doesn't seem to learn from pain. I have learned to see them coming some, and will stick my foot out to brace his head fall.

He is slow to understand consequences, as in, tumbling down the stairs, he can't understand that he has to ease down them...he is learning though, it is just slower learning for him that with other children. That is what I am learning. He does learn things, but it takes longer. I was told, if it takes a "normal" child 2-3 times to learn something, it may take 100 times for him, but he will get it. Patience....yes learning lots of patience. It is a good thing I am an older, mom, with some experience, as my patience level with babies has mellowed alot, and it is easier for me to tolerate his behaviors than I did when my kids were little. It does help to know these things about his brain, to know it just takes him longer.

Well this is a long post, so I will end for now...still have more to say for another day.