Welcome, 2013

Exactly one  year ago, I wrote this post, https://adoptingspecialneeds.wordpress.com/2012/01/page/3/ . My word for 2012 was going to be “moment“, as staying in the moment. Looking back, I would have to say I failed more often then I succeeded. There was a a 3 month period over the summer where I was unable to start fresh each moment. Getting physically beat up can do that to a person.

The last couple of months The Dad has been Hope’s primary caregiver. Yesterday, Hope raged and got him with a head butt in the face. It looked painful. She kicked me, but it didn’t catch me by surprise, as she had already kicked The Dad’s brother.

Hope is on medication, which she wasn’t on this time last year. Her raging is a little less in terms of frequency and intensity- but not much. This year provided very little healing for Hope.

We have a new configuration of therapists lined up. If you are interested you can read it on the other blog.

I am looking at 2013 as a fresh start, but I decided to use the word “moment” again. I do not want to repeat all of 2012’s mistakes again this year. I still think an RTF is Hope’s best shot, but I am willing to try a new approach. For Hope’s sake, for my families sake, I pray for healing.

GB’s Wish List

Christmas_tree_02_svg

GB’s wish list is tacked to our refrigerator:

  • a doll with eyes that open and close
  • a tea set for pretend tea parties
  • a coin purse to color
  • a pad and paper for drawing
  • a diamond ring

My kids do not watch anything with commercials. All of GB’s friends are very specific with their wishes. This time of year I really appreciate GB’s social immaturity. I haven’t had to set foot inside a box store yet.

Happy Versus Educated: Part II

mamabear

The comments on my last post left me much to think about. Thank you to each person who took the time to share their thoughts. I realized my first post was incomplete. There are children who have special needs and are being educated and are happy. This is not the situation I find myself in. However, I should have stated that this decision is not one that  all parents of children with special needs face.

I have a meeting tomorrow with Hope’s school, but it is not consuming my energy. Hope has been as volatile and hard to contain at school as she has been at home. In true RAD form, she has been trying to triangulate between us and her school. This is one of those periodic check in meetings to try and contain the manipulative behavior.

Wednesday the CSE is for GB. GB’s situation is different. GB is never a problem for the school and always works hard. I expected this to be an easy year. Even though she changed schools, she brought her teacher, aides, and support services from the old school. The new school is the neighborhood school, with all the social opportunities that implies. The only note of warning in the background was GB’s state test scores from last spring. They were as low as they could be. The committee assured me that the tests did not really measure what was learned. Having been in the education field for so many years, I knew the one thing these tests were good for was to predict who would be able to pass the exams in high school and earn a diploma. When I said that out loud, nobody could disagree with me.

This year GB’ teacher  has structured things differently. GB is still in a class with seven other students, two aides, and Mr. Teacher. This year, all eight students are doing Saxon fourth grade math. It replaced the Touch Math GB used the previous two years. Saxon has a spiraling curriculum, which means that they cover a little bit of everything each year, each year going into more detail. At the moment, they are doing two step patterns, place value, fractions and multiplication with regrouping. GB struggles with simple repeating patterns, does not understand that for fractions to work, the pieces have to be the same size, and was working on multiplication facts with Touch Math. Since the class is doing math as a group, GB is lost much of the time. The whole group is working on fourth grade spelling. GB comes home with spelling exercises where she can read less than half the words on the list. Homework is taking eighty minutes a night, when GB is cooperative and focused. GB’s anxiety level is through the roof.

GB is a fourth grader this year, but the aides still require ice cream money and school store money to come in a labeled, sealed envelope- a requirement none of the other fourth grades have and one she doesn’t need.

CSE meetings only go well when I can tell them exactly what I want and why. I have no answers going into this meeting. I only know they better be expecting Mama Bear.

Grateful

I was spitting tacks when we left for my sister’s last night. The Dad insisted on taking the Prius because the saving in gas is significant. I couldn’t imagine any amount of money worth traveling with Hope in the Prius on a ten or eleven hour ride. My fears were valid. Hope nutted up and The Dad spoke softly and called her his “baby”, while growling at GB to leave her sister alone. I should have just stayed home. My frame of mind was the pits at that point and I couldn’t find the peaceful spot inside that my therapist and I have been working on. So I switched my focus to keeping my mouth shut.  I was successful. I figured I wouldn’t say another word until we were at Lynn’s house.

I was startled by a huge bump and the strangest sounds coming from the car. Three in the morning, three hours from Lynn’s, we hit a deer. The Dad couldn’t open his door and a tremendous amount of steam rose from the engine. GB and Hope woke up, but,  thankfully, no one was hurt. Hope was snarly, which is how she always wakes up. Fortunately, while she raged earlier, she didn’t lose it then. We waited a half hour for a Virginia State Trooper and another half hour for a tow truck. By 4:15 we were in a hotel room.

This room has a complete, full size, set of stainless steel appliances, including a garbage disposal, and granite counter tops. The bedroom is completely separate. There is a kitchen table, a couch, a desk and an easy chair.

This morning we woke up to find we didn’t have comprehensive on the Prius and would have to pay cash to solve this problem. Not great, especially since, the Dad just took a half time leave, and our living money was cut in half.

I am grateful because:

  • Ten years ago, The Dad would have lost it completely. He stayed intact and dealt.
  • GB has always been a good car rider and trusts us completely. Telling her everything was going to be ok and her believing us was big last night.
  • Hope was Hope, but when we hit the deer, she didn’t rage, she just got snarly.
  • God has always met our needs and I trust that he will this time.
  • We will get to my sister’s by Thanksgiving, even if it is not on my schedule.

Most of all, we are all safe and together. Everything else pales beside this.

Wishing you all a Blessed Thanksgiving!

"me"

I am fifty-three tears old. Old enough that you would figure I had the concept of “me” down. I don’t. Dealing with the changes raising GB brought into my life, losing my brother, father, and mother over eight months, and leaving tenure behind to quit the workforce and go back to school were changes I coped with, still able to keep “me”. And then there is Hope. I am still GB’s Mom, but that no longer defines me. With Hope home, I am no longer actively working on my dissertation. I may get back to it, and if I do it may or may not be obsolete. I haven’t a clue. My goal of working with Head Start kids and giving them an even start that they keep may not be reasonable. I have never done things halfway and can’t see myself starting now. Yet, Hope’s Mom does not define me. We have had Hope going on 8 months and have still only scratched the surface of who she is. I can’t even reasonably claim to know what she needs in a mother. The RAD, which is in every breathe she takes, every word she says, every action she takes (or doesn’t) is all consuming. It has left very little room for “Hope” to show herself. I am a therapeutic parent, but that is how I force myself to act. If it were really “me”, it wouldn’t be so hard, take so much out of me, or in some moments, just leave me completely. Physically, I have neuropathy and a white matter disease both of which  will only get worse. I refused to be defined by any disease, so my “me” really can’t be physical.

Fifty-three is old; really too old to start a journey of “who am I?” Still, since that is where I am, I guess that is the journey I need to take. If I had known it was a journey that would be repeated multiple times in my life, I wouldn’t have taken it so seriously as a teenager. Back then, I didn’t realize how many times I would start this journey over.

Adopting a RADish- You never know!

I have read, from more than a couple of sources, that kids with Rad can do well in larger families, as long as no safety issues exist. The first time I read that, my mind said, well maybe in SOME cases and promptly forgot it. I came across it a couple of more times, and my brain acknowledged it made sense. I stuffed that knowledge way back in my head; you know  that place? The place you put information you are sure you will never need again (like how to breed a goldendoodle). And life went on. Since I was sure, beyond thinking, that GB was our last child, I built our routines around exactly what GB needed, and how GB functioned best. Then the medication side effects hit, we had to withdraw the risperidal, and we lost stability. Minor problem, one that would be solved with a little research and a new drug. Nine months later, we are still looking, but I digress.

In the beginning of July, I saw Hope’s picture on the CHASK website- and I couldn’t let it go. I showed it to my husband and he couldn’t let it go. We were sure God wanted Hope in our house. I sent an inquiry, exchanged a couple of emails, spent an hour on the phone with her Texas Mom. Hope had an alphabet of diagnoses, but listening to her adoptive mom for an hour, her behaviors didn’t fit with any of the diagnosis. Her Texas mother and I spent a lot of time talking. She didn’t want to try respite, she didn’t want to try bringing services into the house. She just wanted her gone. We finalized Hope one day, took her home the next. Gotta love Texas 😦

It is somewhat ironic that our pastor convinced Hope’s Texas mom that we were the perfect Christian family to adopt her, since neither our pastor, nor his wife have spoken to me since Mali was born.

What we didn’t realize when we adopted Hope, was that none of the diagnoses Hope came with were accurate. The only diagnosis she didn’t come with was RAD and Rad was the only (seems like a strange word in this sentence) diagnosis we are left with after six months of seeing every specialist I trust.

What does this mean? It means my household was ready for FASD, PDD-NOS, a child who wasn’t toilet trained, and according to her records, suffered extreme delays across the board. I knew she would also be RAD, but the rest of the problems would fit in well with the structure that already existed in our home.

It didn’t work out that way. Hope was already toilet trained, she just chose not to be when she was with the Texas parents. Her language skills were a full 2 years behind. Without any speech therapy, she had age appropriate language skills by November. All that is left is articulation difficulties and now she is receiving speech therapy for that. The bottom line is that Hope was environmentally deprived, never bonded and all we had to deal with is RAD.

GB still has all the difficulties of FASD, ASD, and Bipolar Disorder. Hope is bright and RAD. Anybody see a problem here? While I try to as much as possible to keep GB’s routine to the one that works with her, it is not easy. By necessity, we have made Hope’s world very small. Extended family has been told “hands off”. The church has been told “hands off”.  The gymnastic class has been told “hands off’. While I try to keep Hope’s world small, I am also trying to expand GB’s world, still keeping the structure. GB is attached but sometimes she still has with issues such as why doesn’t BM ever call or see her. It is not constant, it does not consume her life.Contrasting that, why the Texas family got rid of her is on Hope’s mind all most of the time.

Where does the idea that RAD kids may do better in larger families come in? It resurfaced Thursday when the structure Hope needed and the structure GB needed were diametrically opposed. I thought;” you know, maybe there is truth to large families being a good choice for a RADish”. My thinking was that the larger family would have a structure encompassing a much wider range of needs, and therefore be easier to modify when adding a child with different needs. 

This is our family and we will do what needs to be done. I wonder though, if I had known that the only problem Hope was battling was RAD, would I still have felt God wanted her to be ours? God and I discuss it most days and probably will for a while. In the mean time, I work everyday at interweaving the girls very different needs into a new home that can meet the needs of both of them.

Now, we are getting ready to go to the indoor pool at the local Inn. We are suppose to get GB in the water as much as possible, as that is the only place she truly relaxes. I couldn’t yesterday (another story), so we stayed home from church today. Hope is coming with us- not because she needs the water, but because The Dad needed a break from Hope, who requires a lot of energy to keep her regulated through a church service. Church will be waiting for us next week.

GB’s Small World Grows a Little Bigger (For the Moment)

I complained to the shrink that Geodon was holding GB in during the day, but by 5 o’clock she was really struggling. He added another 20 mg of Geodon at four o’clock. Things are better. I still can’t wait for the new shrink in March so we can try the next generation of Risperdal.

A boy from GB’s class called yesterday and invited her over for a play date today. He lives one block from the school and his mother will meet them at school and walk them to his house. It has been months since I let her go on a play date and she is equally excited about having a friend and spending an hour and a half after school without Hope. Our world is pretty small at this point.

I am pleased she is so excited and proud of myself for agreeing to it. I tend to err to the side of keeping the world small for them, so they can manage, but sometimes you have to let them enlarge their world a little bit to see if they are ready for it. It is such a balancing act.

Parents Are on a Spectrum, Too

GB had a birthday party to go to this morning. One of her classmates, also ASD, had invited her. A friend had given me the book Shut-Up-About-Your-Perfect-Kid, by Gina Gallagher and Patricia Konjoian. She assured me it was humorous and laughter is always good in my life. Anyway, I brought the book with me to read while GB was at her party. Her anxiety gets to such high levels that I can never leave her at a party and it has only been the last couple of years that I can say she usually makes to the end of the party.

Today’s party was unusual not only for being on a Saturday morning, but was also held at a huge fitness gym. GB was apprehensive and we slowly walked through the parking lot, into the party entrance, talking about who would be there that she knew and what kinds of games they might play. The invitation had a picture of a football on it and that was it. GB was sure SHE was not playing football. I kept talking in my slow, soothing, we-can-do-this-voice and eventually took off her coat, put on her sneakers, and joined the party. I found the perfect mom spot- far away from the action but up high, so no matter where she went on the playing field, (yes, playing field) she could see me. She checked in her usual dozen times and waved and waited for me to wave back another gazillion times, but seemed to be OK with it. They did not play football, although they played dodge ball, kickball, and freeze tag. The only game GB was interested in was freeze tag. When they were playing the other games, she saw a soccer net and decided to play soccer.

I didn’t get to read my book much because most of the kids at the party were on the spectrum, hence most of the parents stayed. They were all talkative and a lot of them wanted me to talk about GB and after a while, I just put my book away. However, I am not a small talk person, and when there was a lull in the conversation, my eyes wandered. Eventually, they settled on a brochure and I started reading. The brochure told me we were not at actually at the huge fitness center, we were at the “Super*man” Speed School. The purpose of the “Super*man” Speed School was to give your child, from 7 through high school, the edge the needed to reach their potential as an athlete. They would cut seconds off their time! For only $299, they would train your kid 5 days a week, so that when spring tryouts came, your kid would make the cut.

For the 7-12 year old, the cut they were talking about was making a Little League team! I watched the kids at the party enjoying themselves; none of them could consistently catch the Four Square ball they were using for the games, but it didn’t seem to bother any of them. Some of them understood the rules (not GB) but they weren’t bothered by the kids who didn’t. They were all having fun.

After the party, one of the 7-12 speed drills were scheduled. As we were gathering her goody bag and snow boots, getting ready to leave, the was an influx of parents with their kids, coming for the next class. Without breaking their conversation, the parents put themselves between their kids and ours. I listened to them remind their kid why they were there, what was expected, and that they would be closely watched for attitude and effort. As GB and I got through and left, GB chattering excitedly about the party, I briefly felt gratitude. GB would never make me sit with the parents who had stop watches and dreamed of pro careers for their children.

The Dad took the girls swimming this afternoon, and I am going to lay down and read my book.

Success

Tonight, The Dad and I took the girls out to dinner. We met a friend, who is a preschool special ed teacher, and her family, including her 2 girls the same ages as mine. My friend had also arranged for another adoptive mother to join us. Her and her husband have adopted 10 children from foster care. The oldest is currently 25 and the youngest is 2. All of her kids have special needs, from mild to intense, and as she still does foster care, how many she will bring is always a guess.

Tonight, she had 5 with her, and another friend, with her 7 year old granddaughter, brought our group up to 16, 10 of them children, 3 of whom were NT.  GB was not the most involved child, which  was nice for a change.  I have a lot in common with these people and it is the first time since we started with family #2 that I have had this, at least IRL. Her 7 year old and GB took an instant dislike to one another, which was not a surprise, since GB does not take well to large groups of kids, or for that matter, new kids. She chose to sit next to her Dad and by the time dessert was served, GB was willing to sit with the other kids. It didn’t work out all that great, but it wasn’t just GB. There were five of them that were toast, and one was NT.

It may sound crazy, but we are planning on doing it again. The adults, including me, enjoyed the time with other adults who *got it*, and none of the kids, including Hope, had to be removed. In my world, this is success.

A Manic Weekend (the short version)

Start at the beginning. GB came home from school Friday completely manic- racing thoughts, pressured speech, no ability  to modulate her voice and greatly looking forward to the weekend. Hope came home very unhappy, having lost all of her recess and not gotten her prize at the end of the day. GB was oblivious and Hope was jealous- and we met friends for dinner. Long Evening.

Saturday  the girls woke up the same as they went to bed- GB manic, Hope jealous. We cleaned up the house in the morning, some of our friends and GB’s friends stopped by to decorate cookies and celebrate GB’s adoption in the afternoon. Both girls went to parents night out at the gym, and the Dad and I went out to dinner, childless, with friends.  We didn’t pick the girls up until 9:30, and by this point GB was manic and tired (although she didn’t know it) and Hope was tired and figured crying was easier than any thing else. Hope was up until after 10 and GB finally went off somewhere around 11pm.

Sunday the Dad insisted on church for him and the girls and wanted MK and I to come. We did and MK brought Mali. That meant waking the girls up early, after a bad night. The girls had Pop Tarts and cookies for breakfast, cupcakes for lunch (not my idea). We got home from church,  the girls were fed real food and then watched TV. The Dad rested a while, then took both girls to see his mother, driving over an hour each way. The four of them went out to dinner and it was well after bed time when my guys got home. GB was manic and couldn’t stop laughing. Hope decided that manic looked fun and joined in. The dad was spitting tacks and didn’t look like he was in much better shape then GB. I was soooo happy when every body was in bed.

This morning the Dad left early for work. I let the girls sleep in. When they finally woke up, both Hope and GB were better regulated. We went through our morning routine, then I drove them to school an hour late. Additional commentary can be found on the other blog if you are interested.