Friday, September 25, 2009

A day in the life of bein g a mother to a sn child

Taylor yesterday

In June i stopped working at my job and found a new journey in being a stay-at-home-mom. With having 4 kids has already been quite the journey but 4 with their own unique special needs definitely adds to the pot or list of things that go on in an average day.

Reagan has Cleft Lip & Palate (CLP) and we usually have weekly speech therapy classes. Last year and until May we were doing 2 sessions a week - one through the Renton School district as part of his IEP and then one a Children's Hospital on the other side of town and Scott and i would share in this - Scott would take Reagan and I would pick him up and bring him back to school. Then there are the various doctor sessions depending on the stage you are at with his treatments. We are currently in limbo with since they are not sure what to do with his palate not fully closing but also having mild sleep apnea they fear making this worse. So we just do more speech and Scott and i struggle with is it really working? Then there is the differences in the school system and working with someone who actually deals with speech & CLP. So i usually video tape the sessions and give this to the school to make sure they know what they are doing!! Then 2 wks ago we finally addressed Reagan's allergies since this summer they got really bad - after finally having a formal scratch test done 2 wks ago our son is allergic to most things.... esp Trees, Grass, Weeds... Cats, Rats,..... all of which we have -- ugh! So now it is evaluating if the meds will work or do we go to wkly shots and a treatment pattern that covers 4 years?

Kaitlyn has/had a VSD (hole in her heart) which we are thankful that healed on its own naturally which about 30% of these do. So in many ways she is our non-sn kid. Yet when we got her we always had this nagging doubt of attachment issues. Of course, we wanted to play it safe and waited, moved and waited more. Finally a year ago we decided to address this and wow a box opened full of surprises! Kaitlyn has many deep issues here including sensory issues which were getting better until our trip to China (mom hoped that this would not happen) So we now deal with weekly sessions to help her deal with her abandonment and grieve the loss of her mother. She we feel was very attached to her birth mother and this was a very traumatic thing for her. She still hopes to find her someday. We have learned she was more like 4m old when she was left at the Chicken Market and this would make a lot of sense to her feelings of loss. Lately we have daily battles and many things are triggers for her outbursts - i think starting Kindergarten has been one - but she is an angel at school - excelling in many area's already - including reading at a 2-3rd grade level. Tuesday i am having her tested for food allergies to see if this also could be a trigger since these and sensory issues to cross paths a lot. I have looked at Sensory therapy which is $$ and have been reading up on the many books available to me.

Taylor - well this is my loooonng story.... my poor girl has had a rough start in life - yet she has been making huge progress. She has kept me the most busiest the past 2 years and many times it has been very draining. When we got our Taylor she was so neglected, malnourished and deprived we have learned she was more like a 10m old than a 3-1/2 year old child. I had her immed tested at school and started an IEP for her in speech since she could not speak. She passed in May to be on track on the lower spectrum for her age, but failed in grammar and understanding - so we will continue her in speech. She had the worst melt downs you could even imagine - Scott and first did not believe me and kept saying Kaitlyn was far worse - but soon he learned and we spent many times together holding her down to calm her in the midst of what could be an hour long session, to stop her from hurting herself...........which leads to the ** PHOTO ** above which is hard to tell but on the left side you can see scratches from her eyebrow down to her chin.

Taylor has it all but we are just learning about it and working through things. We had her IEP redone in May/June - the school was not thrilled in doing this but are now working with me once they saw i was right. We had her tested in all area's and had both her doctor, therapist (also attachment issues), her school teacher and I all give impute into her behavior's and issues. We'll 2 wks ago they finally came back with she failed all area's but the speech (except grammar) and has 4 or the 5 sensory issues, behavior and social.... Her therapist has her listed as SPD, PTDS, ADHD, Failure to Thrive when we got her and Institutional Autism - which is NOT Autism (more in the area of failure to Thrive and regression). So when facing a list like this you at times want to run and wonder what did i sign up for when i adopted this child? Yet God has a plan and at times it does not come easy. Many want to baby Taylor or give into her because they feel sorry for her, but God knew she needed tough parents who could be firm and give her a chance at a life of more than just existing in a crib with no interaction other than forced feedings..... We are now working with a host of people trying to put a program together for her daily needs in school and at home. It can be a daunting task and endless calls to people trying to find the right program and finding many programs that are new that do not fall under current insurance guidelines and cost in the thousands - more frustration. So i have her also being tested for food allergies - doing this is much easier than me trying to do food logs for months with both girls trying to eliminate various foods in their diets - i am so thankful for one of the best International Adoption Ped's in the US and always willing to work with me to get my kids what they need.

So we are in the midst of all this and daily stuff - we are also so thankful for a great Christian School that the kids go to. The Staff from the principal right down to the Teachers are open and understanding and go the extra mile with our kids. Taylor has been known to trash a whole classroom in an hour on her own! but thankfully this is not common. She has made HUGE strides in her daily outbursts and her last major one was the day after i came home from China in August - until yesterday......... we were cleaning up some toys and were going to take them to school and i misjudged Taylor's understanding on this. We had talked, but i clearly did not see how deep the possession thing was with her still. So when we gave her teacher one of the doll bed we were not using anymore, she started to cry, i said goodbye after telling her it was ok, so i could take the other 2 older kids to their classroom. Well i could hear wailing moment later about 1/2 block away, so told the kids to go on their own and returned to Taylor's room and took her outside to calm her down and reason with her. Well it just was not going to happen, so we then proceeded to my van, by this time she was thrashing about and kicking and hitting me, while screaming and crying - i sure got the smiles and sympathy looks from the other parents. I then put Taylor in her seat and got into the other seat next to her. At this point she was totally out of control and was kicking the seats, and trying to scratch her face and legs. I grabbed her arm to stop this and in the midst she hit her nose and blood was gushing out - all over her clothes and as she blew out it sprayed all over the van - (windows, doors, seats...) and then me, my dress pants, top and arms, glasses had splatters of blood all over!!! what a mess, so here i am trying to calm her, stop the blood and clean up.... after what seemed like ages, she finally did calm, i had her head back to stop the bleeding and was trying to clean up the rest of the mess. I told her we were going home to talk and clean up. We got home stripped down, redressed and talked through this episode, she finally became happy and chirpy and we then proceeded to find more toys to bring to school (she had to learn to give freely without ties), we went back to school and she gave the teacher the bag of toys which she praised Taylor for and all was done - i left exhausted and getting home again after 10 am - morning already 1/2 gone. Taylor had Winston in her class since his teacher was sick and the rest of the day she picked on him - but at least we had no other melt downs. Last night when we picked her up the scratches started to show, I had hoped she had not hurt herself, at least now she is not biting herself - but still occasionally will bang her head against a wall.

I know we have made amazing progress with this little girl - sometimes it does not feel that way - but then when in almost a month we have not had a huge meltdown - this is reason to cheer. We see light and hope that this girl will one day be rid of this dark side and we will only know the happy overly extroverted Taylor that God made her to be. God does give me rest and thankful for getting away at the end of Oct with Scott, we come home days before her surgery which she will be out of school for the month of Nov, so we will have lots of time to bond.... and hopefully heal more.

Winston, my last little cherub. He in many ways has been my easiest one - yet we have one thing we are dealing with. He had TOF of the heart, but thankfully in China he had his surgery and it was such a success he is doing well. He did have some other stuff and we have been able to manage it as well. He had another surgery about 4 m after coming home to remove his adenoids and tonsils since he was not growing, but since he has been growing steadily. But for Winston, he was in split pants until we got him at 4 and had spent his whole life in an orphanage. Oh, he would go twice a day to the potty inside to do #2, but the convience of the split pants has become my daily battle at home. Scott shared stories while in China of Winston standing in his seat at a restaurant and suddenly just peeing in the chair??? Well since home we have been up and down, but mostly down with him purposely peeing in his pants once a day. The teachers and everyone have done everything we can think of to retrain, and help him - but he still has this urge to not be bothered to get up or ask the teacher to go to the potty??? ugh.... we even at one point this month had him going to school without underwear. He hates running around without pants at home because it forces him to have to go and not pee on the floor and be caught. Even one day i had him playing in the yard and Kaitlyn (our spy) caught him about to pee in our garden instead of going in the house? We have now taken him to therapy, and he did excellent for a wk and then we regressed. So we continue to work on this little guy's issue..........any suggestions would be helpful. The urologist says it is not a medical thing, so we just try and figure the emotional reasons.

So in my 40's i wondered what was i thinking when i signed up for this life of a crazy women and 4 kids??? but when all is running like clockwork - we are so blessed with these kids. I at many times thought i could do it all, and many times i could, but it does take its toll on you. I am grateful for this break, where is God leading me? who knows, but i know my kids are getting healing and love and that is the most important thing. I look forward to my break for our 10th wedding anniversary - yes! 10 years. Funny as i look back when i met Scott and we talked about family, kids and our future - this life was not even in our remote dreams, but God had a plan for us to find our family in a different way, a more challenging way and one that most people we meet can't even relate too. But this is who we are and the journey we are on. One day at a time with God!

Lavonne 9-25-09

1 comment:

Beth said...

Thank you for being honest. It helps me to understand your days and know what you are facing. You are doing a great job. Do you grow weary in well doing for in due season . . . Praying for you.