There has been a whole lot going on here that I haven't blogged about. Some things just take time to go public with. This is one of those. I'm still not sure I'm ready but here goes nothing. This post has been over a month in the making so there is just too much to share without writing a book. Because of that I'm going to take some short cuts to get you to where we are today.
It didn't take long for the word autism to be thrown around in our house. Kids who come from orphanages are likely to have autistic like behaviors. The rule of thumb is to wait 2 years before considering autism as it can often take that long to see those behaviors disappear or at least start to dissipate. Over the last 2 years I'd occasionally say the word autism to people only to hear them say "Oh she's too social to have autism." And there you have the main reasons why we have kept our mouths closed and assumed she was fine. Well this summer has been very interesting. As we have prepared to celebrate 2 years of having Oksana in our family we have also watched the behaviors that concern us become worse and worse.
After voicing my concerns to her neurologist in July he agreed that her behaviors are concerning enough that she needs to be evaluated. He also suggested putting her on Risperdal to control some of the more concerning behaviors (obsessiveness, aggression, self injury). I was so not ready to hear that. I told him that we wanted to make some environmental changes at school before considering medication and I slipped the prescription in my purse without even looking at it. When we got home I immediately contacted her pediatrician to get her up to speed. She completely agreed with the need for an evaluation and the Risperdal. I gave her the same speech that I gave the neurologist about the meds. Then I contacted a pediatric psychiatrist for the evaluation. She will be seeing her on October 29th.
As we creep closer and closer to the start of school I am becoming more and more concerned. Her obsessions are so bad that she really can barely function outside of them anymore. I really don't see how she can even learn like this. I'm also scared about her aggressive behavior when school starts. It is definitely worse in stressful situations and it will increase drastically when she goes back to school. I haven't shared some of this before now but last year we had to start documenting her self injury to protect ourselves if someone called the state on us. At the end of the school year, coupled with our trip to Bulgaria, it was so bad that her para sub had to physically block her from attacking children in the hallway and I was getting daily calls from school. We didn't even know if she would make it to the end of the year or if we would have to pull her out early. It was horrible.
Yesterday I pulled that prescription out and read it for the first time. It's starting to sink in. It is no longer a question of "if" we start her on it but "when". My next step will be to fill it but even when I do that it will probably sit on my counter for awhile. I have no idea how to pull the trigger on starting. How do I decide when the moment comes that I put that medication in her? I understand its necessity and in fact I'm beginning to see that by waiting I am just delaying her chance at a better quality of life. Still, I'm struggling......
10 comments:
I love you sweet friend! Praying for all of God's wisdom and peace to lead you. I know He will give you the answers you need right when you need them as to the what now, when, and how.
Starting the medication doesn't commit her to taking it forever. It's a jumping off point to start finding out what will work for her. It must be terribly scary and frustrating for all of you not to have the answers you are seeking. Thinking of you and hoping that the answers fall into place very soon....Peace, Allison
I have never had to come to the point of giving my child medicine. But I myself had to reach out for help after the birth of our last child. It is hard. And scary. But I think we make it harder for ourselves.
And beginning does not mean forever.
Many prayers for you as you come to the moment of knowing.
Blessings!
I agree with what Allison said, Erin. It's not like you're committing to a lifetime of medication; this just helps you to find out what's best for Oksana and keeping those behaviors at bay. I'll keep you all in my thoughts and prayers. God WILL walk with you on this journey!
I agree, its not a commitment. One thing I had to realize (as we have gone back and forth on ADHD meds for my now 17 yr old) is that if he needs it, he needs it. If I am withholding something that would bring peace and a feeling of normalcy and the ability to learn because of my own fears and self doubts, I am being selfish. Please do not think I am saying you are, this was just part of the process with medication I went through. We have since decided that at times (different phases of his life, not like on one day and off another) that it was appropriate and other times it was not. He's been off for over a year now and doing well, medication helped to learn somethings that have given him coping abilities that he just didn't seem to have access to before. As far as my 7 yr old with Downs, we put off the ADHD diagnosis for nearly 2 yrs but ended up seeking more input from doctors this summer and ended up putting her on Clonidine. We will see if this is the med she stays on or if we will try something different, but when it works, it works. Her quality of life will change dramatically because she will have better control over her actions, she will be able to learn more, and be socially accepted in a way she would less likely be with her seriously over hyperactive behaviors. It isn't about whats easier for me or others but whats best for her. I know I have no experience with Autism but I think the road to diagnosis and treatment can be quite similar in the emotional struggles we go through as parents needing to consider medication.
Lastly, PLEASE PLEASE PLEASE if a blog troll comes along (and you can bet anything they will) and posts a nasty comment, don't read it and just delete it. Read all of your comments slowly, if it is headed south just hit delete. You don't need that. I don't read them and with such a sensative situation, you shouldn't either.
((hugs))
I think starting the meds before school starts is a must so that you can see what she is like on it without the stress of routine changes. I think meds are wonderful! Sorry, if some don't agree. Whatever I can give my child that helps her learn, that helps her be aware of this marvelous world is okay by me. If they don't work or make her miserable then I stop them and see what else is available. You are a good mother and have worked very hard. Oksana has been in my prayers for a long time and I will keep praying for her and you.
I'm sorry you are dealing with so much right now. Just take it one day at a time, we are praying for you.
So sorry that you must deal with this decision. But remember, if she had diabetes, you would giver her insulin. If she had a broken leg, you would cast it. It really is not different. You are trying to treat a problem. You can always change your mind and take it away if it makes things worse. Hugs
Just now catching up on blogs so sorry I hadn't seen this before today.
Parenting is tough in the best of circumstances and you have certainly had lots of challenges. I know you'll do the best for Oksana. I'm so sorry you're struggling. Prayers for you!
(Also, let's have coffee or something!)
You are describing my son. Exactly. He does have a diagnosis of autism, which we question frequently due to how extremely social he is...To be honest, I work with children with autism, and I don't believe that he was born with autism. I think he has autistic characteristics due to his background. The obsessions/perseverations severely impact his functioning, and they get seem to get better/worse in cycles--we're in a bad cycle now (he also has some minor self-injuring behaviors and pretty serious meltdowns). Situations like school make his behavior 1000x worse, and I'm also dreading the start of the school year.
He was actually on Risperdal in his orphanage, and we weaned him off of it to find a baseline. For him, there was very little change, so we're giving him a year off meds and then will most likely start looking for something that works. K's autism is so atypical that we are/were starting to worry about mental illness versus autism, but I keep telling myself it is just the unique way that he responded to institutionalization.
Sorry to write you a book, I'm just a little relieved to read that there is another child out there like mine!
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