Saturday, April 14, 2012

Special Needs and Large Families

I am asked all the all time-- what does a big family look like?
Hmmmmm. I am not sure what all big families look like, but I can sure tell you a little about ours.

Earlier today as I was reaching for toilet paper in the downstairs bathroom, there was none.  I called out for someone to bring me a roll... no wait... four rolls!

As I taught Jonny how to vacuum our entry way tile, Caleb was applying black Sharpie to a pair of hand-me-down shoes for Dennis.

I was cooking bacon yesterday and as I directed the girls in other dinner preparations I stirred too fast and splashed bacon grease all over my jacket.  I quickly took it off and asked Galina to go put Spray and Wash on it.

As soon as the first kid was done eating dinner tonight they came up and asked if we could have the ice-cream bars I just bought at Costco today.  I told them we had to finish up the old ones and they got them out and counted them.  Only 15 left, so John and I went without because I didn't want to open the new pack.  Dennis was so slow at eating his burger that we had to put his ice-cream back in the freezer.  I had pity on him as he chewed his burger for the 50th time (he doesn't like meat very much) and finally told him he could be done.  Alex asked to eat the rest.  Yay!  No waste!

As I walked into the bathroom to give three of the girls haircuts last night I noticed that they had set it up with music and glasses of water with bendy straws.  Just like a real hair salon.  After cutting Julia's and Anna's hair, Anastasia finally agreed to let me cut hers shorter than ever before.  She finally understood that I wasn't going to cut her hair super short like the orphanage used to cut all the girls' hair.  She finally trusted me that I wanted her to look cute!  And she does-- just wait and see the picture.

When we barbecue, we either have to put the first batch of burgers in the oven to stay warm or eat in shifts.

Four gallons of milk only last about 3 days now.

Almost every trip to Wal-Mart or Target or Ross I end up buying 2 or 3 pairs of shoes.
 
 ~~~~~~~~~~~~~~~~~~~~~


Tonight I was emailed the results of Sveta's three year school evaluation.
It pretty much showed what John and I have realized from the very beginning.
But I wanted more answers as to what to make of her cognitive ability.  What does her future look like? What kind of school work should I focus on teaching her?  What realistic goals should we help her to achieve?  
How do I answer the tough questions?
"Will I drive Mom?"  
"Do you think someone will want to marry me?"  
"Why doesn't my brain work the same as everyone else?"  
"Can I have kids?"
When John and I would bring up these questions with previous members of Sveta's IEP team we were looked at as if we were crazy for even thinking that Sveta might not drive.  How dare we limit her.  She really doesn't even need an IEP-- she just has institutional delays and will catch up.  

All we wanted was to understand her better... to love and accept her wherever she was...  to not set her up for failure... and to keep her safe.
That is what we want for her now.

I emailed the current School Psychologist back with some questions half expecting to get the same sort of response.
To my surprise, she was very honest and realistic about our daughter Sveta.
I share with you and especially other parents of children with fetal alcohol effects so that you can too better understand how to best help children like Sveta.

"Yes, she still qualifies for all services.  I don't see her driving--I think all that goes on in terms of driving and knowledge of the rules of the road would be too much for her.  She will be a good candidate for Regional center services, especially once she hits 18.  They generally step in at that time and start helping the student to make the transition to a comfortable and supervised work environment, help them with public transportation, and can decide if she would be a good candidate for a supervised independent living program.  I definitely feel her curriculum should start focusing now, if it isn't already, on life skills; continue with learning reading but focus on high profile items such as signs, menus, instructions on how to operate kitchen tools, etc.  Math should focus on money, time, measurement, cooking skills, etc.  Writing can look at how to write different kinds of letters (asking for a refund, thank you letters, etc.).  I also think, to help her become aware of her environment and help keep her safe, have her take walks and jot down landmarks, people and what they are wearing, the time of day, weather conditions, etc.  If she can write it down, or even speak into a little tape recorder, it will help to make her more aware of what she is doing and where she is doing.  She should also learn how to describe something to a police officer (an accident, someone bothering her, etc.)  I think the scariest thing about having a child like Sveta is how easily they can be persuaded to do almost anything and the fact that they can be so trusting of strangers.  She definitely should start learning about "Stranger/Danger" and what to do if she ever feels unsafe. 


Sveta is capable of learning more so her IQ may go up a few points over the next few years, but she has pretty much maxed out at this point.  I think it is important to decide what type of quality of life you would like her to have and how much time should she spend on academic tasks that she may always struggle with or that may not be useful to her in the future.  Some things we already know she will need to know for her future include cooking, cleaning, maintaining a safe and healthy home environment, caring for children, getting around in the community, communication skills, social skills, etc. 


I hope this has been helpful.  Sveta is close to a point in her life where academics will become increasingly difficult and the concepts will be too abstract for her to grasp.  She will need a lot of family support and you will know when it is time to switch to another path for her."

After reading this, I feel so much more at peace.  We have been doing many of these things with her already.   However FAS is the invisible disability, and Sveta is very good at blending in.  It has been hard at times to have people look at us funny because we won't allow our 14 almost 15 year old daughter do things that we allow our barely 13 year old daughter do.   But I couldn't imagine doing things differently with her because she would not be safe. 

As I look at Sveta today, I see an amazing young lady.  She is caring, funny, hardworking, diligent, and helpful.  She is awesome to have around.  Despite the limitations she may experience in her life, she has amazing abilities that are going to take her far!

23 comments:

  1. Didn't you say that she loves animals. Maybe volunteering at the local animal rescue or SPCA would lead to a career for her that she would love. There are so many animals that need the love and care that Sveta could offer them. Maybe a win-win situation.
    Toni

    ReplyDelete
  2. Consider teaching Sveta about 'tricky' people instead of strangers. http://www.checklistmommy.com/2012/02/09/tricky-people-are-the-new-strangers/

    My sister sent me the above article, and I think it is brilliant!

    ReplyDelete
  3. Hi!I wish your daughter well.She has come so far and will continue to do well in the areas she is able to well in. Life is a roller coaster up and downs your daughter seems like she is going up with your help. Pat

    ReplyDelete
  4. Ithink you and John are amazing and such loving parents. You couldn't have been chosen by God any better to do this most wonderful and rewarding work. God bless.

    ReplyDelete
  5. :) connecting her with the DMH regional center is a great idea - really you should do that now (sometimes there are wait lists) and it wouldn't hurt do it for Alex (if he might need a medical PCA) and certainly your new guy coming home with DS. They usually have great services - where I live there is an art studio that DMH funds and the individuals get to create and sell there art! I have several pieces and they are amazing.

    ReplyDelete
  6. Our privileges/responsibilities here are based on needs/abilities/behaviors too and we get some unasked for feedback about one of the older children not having the normal privileges for that age and it is due to an inability to make good and safe choices--not because he has any disability, but because he acts on impulse.

    ReplyDelete
  7. Sveta is such a beautiful girl~ I can tell by the sweet things you write about her. It breaks my heart that she realizes her brain doesn't work the same. You can explain that won't affect whether she ever marries~ marriage is God's design. If she wants to have a family (a long time from now~lol), she can start praying now for God to work on her future husband's heart. I do believe God will match her with someone that will cherish her for who she is. Just like he did when He matched her with you! In the world's eyes, she might have been considered unadoptable~ we see that's not the case. :) Have Sveta focus on her strengths and everything else will fall into place. I love that the psychologist was kind and honest with you about her expectations. :)

    ReplyDelete
  8. We have similar situation with our son. He has FASD, is 14 but functions closer to age 8 or 9. Many people look at us like we are crazy when we say he can't go to the park by himself...truth is that he gets lost easily and can't find his way home. We only let him go places with sibs who can help keep him safe, he is way too trusting of strangers. Thanks for sharing your story, it makes me feel like we're not alone!

    ReplyDelete
  9. Great post. Thanks so much for posting!

    ReplyDelete
  10. I disagree SO wholeheartedly with what the psych said :( Granted, I dont know Sveta, but I DO know the world of special needs, and schooling, and the games they play. NO child "maxes out", or plateaus, thats a myth. And the reason they push life skills is because they get federal dollars for it. Her words offended the heck outta me. MY child, with Down syndrome, will likely drive. and she is in regular classes, and they DO have meaning to her. Ugh..so much to say. Im angry hearing what she told you. How dare she. :( Im sorry this may upset you, but despite you being at peace, this is an AWFUL thing to say to parents. Sveta needs to continue to be challenged, ways of teaching her abstract ideas DO exist. Did I mention UGH!!??

    ReplyDelete
  11. We have a son with the same issues (FAS - orphanage). He is 11 and at this point, it is unclear as to what his future holds. I am so happy to see a list of things to focus on. What a great gift. I will print this and use it.

    It never ceases to amaze me the people who tell me that there is nothing wrong with my son. How could I even think he couldn't do all he wanted to do. He is just as normal as anyone else.

    I never know how to respond because I don't want to be the one to hold him back, although I do want to be realistic! There are facts about him that will never change no matter how hard he works or how sweet and lovable he is. I often tell them that I hope I am wrong. I would LOVE to be wrong about him. But, I know the reality and I choose to focus on his good qualities and not his lack of them.

    Thanks for putting this in writing. It is really, really helpful to me and my family.

    Blessings, Sue

    ReplyDelete
  12. The letter was well put. I understand the looks you get as well. My 14 year old needs a babysitter and people give me all sorts of feedback about this too. He just needs it to be safe, and to keep him out of trouble. God Bless Sveta!

    ReplyDelete
  13. Michelle - I am so glad your daughter is so high functioning, in spite of having Downs. She does not, however, have FASD - it's a whole 'nother ball game with that dx.

    I am really glad you got this letter. I am over the moon thrilled that this person was so straightforward and honest with you. I have asked and asked and asked what I should "expect" minimally from a few of my kids and it just breaks my heart that no one will step out of their comfort zone to help us. It results in extreme frustration on my kids part when the schools or my expectations are too high and extreme hopelessness on mine when they can't seem to do the things everyone else seems convinced they can. I have a few kids who will probably never drive. I say "probably" because what I'm seeing is extreme impulsiveness (in spite of meds) that seems to get worse every year, instead of better. I also see thinking errors that will be dangerous in high stress situations and a lack of coping skills and slow processing speeds. I will never feel safe with them driving, but they will most likely encounter some well meaning individual who thinks we are wrong and tries to teach them or lets them use their car. I shudder to think of the outcome. My kids with FASD will do just about anything anyone tells them to (friends, strangers) with zero thought to the consequences.

    I just wanted a "realistic" view of what to expect and what to focus on with them and instead I received blank stares or uncomfortable mumbling. That did not help any of us and instead just set them up to fail when they could not reach the typical milestones their peers did.

    ReplyDelete
  14. WONDERFUL POST! Those of us with several children with FAE understand where you are coming from. I would have loved for someone to be that honest with me about my child. Our first child with FAE was a eye opener for us. We wished someone would tell us what to expect as he got older. We had to muddle thru on our own. Now we know what to ask for and what to expect. Don't let anyone tell you how to raise your child. You know best and sometimes the best is VERY different from what other people think. And that is OK!

    ReplyDelete
  15. Chistine, I wonder if this is too harsh of an assessment.
    I know that we deal with different abilities over here. I thought for sure one of our girls would never be where she is today both in spelling and math concepts, due to alcohol exposure and drug exposure, but continued working on HOW her brain learns, has led us to success.
    The same with our Son who had severe brain damage. He was deemed unable to learn by the school when he was 11, and English is his FIRST language. Considering Sveta has had to learn 2 languages, she is obviously able to learn.....
    Our son didn't advance as well as his brothers in math, that is UNTIL college.... YES, he went to college, even though he didn't think he could do it. He was NOT reading or writing at the age of 11. At 20, he went to college, and now he teaches special ed. :)
    Something happened between his teen years and his 20s that boosted his confidence and I think her name was Emily. :)

    ReplyDelete
  16. Mrs. Reed,

    I have been reading your blog for some time now and it is such and encouragement to me. I come from a family of 8 kids (which is big to me, but nothing compared to you guys :) )and my youngest sister is a special needs child. Before my sister was born (4 years ago)most special needs kids scared me, but after she was born God showed me that these kids were some of the most caring and considerate people ever! Now I love them and think they are so much fun to be around.
    I love how you guys are adopting again and when I get older I hope to do the same thing. Thanks so much for being such a great role model for me.

    Julia

    ReplyDelete
  17. I think the school psychologist's honesty is refreshing and sadly, very rare. Our almost 12 year old son (who does not have FAS but has learning disabilities along with ADHD, OCD, anxiety, and bipolar disorder) has struggled academically and socially since pre-school. At every IEP meeting I express my concerns and am repeatedly blown off. He is going into middle school and cannot spell first grade words, he still reverses his letters, he cannot retain information, does not know our address or phone number...it's worrisome. However they continue to tell me these things are "common for 5th graders" and "nothing to worry about." I have older kids and know these things are by no means common. I worry about his future and they make me feel like I'm being ridiculous. We know there are issues, we are not in denial. I'd really like some direction from them but I guess I will have to figure it out on my own.
    We also cannot let him do things other kids his age are usually allowed to do because of his impulsiveness, immaturity, and poor judgement. I actually had his school counselor call me and suggest I let him take a bus to a museum in the city ALONE because she thought he would enjoy it and we really need to give him more freedom. Your post gives me hope that as he gets older and goes to middle and then high school I will be able to find someone that will be as honest with me.
    Karalyn

    ReplyDelete
  18. Awesome! Love these posts that let us in to your lives and how it works....

    As for Sveta, she is so lucky to have parents who worry so much for her and her well being and her development...Seeing the strong and beautiful young person she is, I am sure she will go far....

    HUgs! Gina/Rita
    P.S. I did the puzzles pieces...just have to get to the post office! : ))

    ReplyDelete
  19. Thank you for this. It helps me understand my cousin better.

    ReplyDelete
  20. I love your little hints on some of the positive realities of life in a big family. I grew up in a family of 11, and we have 7 children (and still hoping to be blessed with at least one more!) There are so many positives - of course I don't know different than 'big' family life, but can even see the perspective of an adult having grown up in big family. We're still close, and have lots of extended-family contact (even tho' I'm living far away from the rest of them now, they are still near and dear to me!) Your family will also keep the closeness, I predict. Christine- you and John will never be lonely, that's for sure!! :)

    ReplyDelete
  21. Thank you for sharing about Sveta. Sounds very much like our Julia even though she is only 9. Julia has not been diagnosed with FAS or FAE but we suspect she may have it. She does have a rare chromose duplication that creates similar difficulties. In a few years I think we will be following a similar path.

    ReplyDelete
  22. Have read your blog for some time. Adoptive mom to 6, bio 2, foster 1- beginning first international adoption. I want to thank for sharing about SVeta. I don't have blog or facebook. Not sure I would know what NOT to share. However, please know that your sharing about your daughter has blessed me. Wish we were close enough Sveta could be friends with my daughter. She will be 15. Very similar. Not FAS, but probably in utero stroke. Mixed speech disorder complicated EVERYTHING. Very difficult to know what to say yes or no to, as she is not as old as she looks. We went through a very rough patch where she took everything personally and thought I was against her. A child PHD helped immensely. We went 2 times a month and it helped me to have someone to assist me in boundaries and expectations. And help my daughter understand also. Thank you for sharing.

    ReplyDelete

I find your comments so inspiring! Thanks for visiting our family blog, and sharing your thoughts.