Thursday, September 27, 2007
Well, my sister and her daughters have left the building...so to speak. They actually moved out last Thursday evening, but have officially moved their residence to my parents house in Maine. We have spent the last 7 or so days trying to reclaim our house. Mind you, my children can and do make quite a mess of things all by themselves...however, when you add two more children and one more adult to the mix...disastrous.
Besides cleaning, and rearranging furniture...we are also trying to reclaim the little progress we had made with Ethan's behavioural issues. He learned a few new things that we have to help him unlearn, and we have to reteach him some of the tactics he had learned to deal with over stimulation. So, it's been an interesting week.
Due to the amount of children I did have here, the TV was on... A LOT! So, we are trying to "wean" him off of that. I tried cold turkey...not good. The tantrums and meltdowns that resulted were unmanageable. So, we are back to trying to work with his schedule, unfortunately with setbacks as well. We are working with a new OT and she's had some awesome suggestions, so we will try that.
The big thing that I really want to work on however, is potty training. For those of you who've been gracious enough to change Ethan's diapers...know exactly why this is a priority for me. Besides the fact that all of my children are in diapers...due to the laxative that Ethan is still on he will have a bowel movement 3-6 times a day...sometimes more! YUCK! The problem is that it bothers me more than him. He doesn't smell it. He doesn't seem uncomfortable with that in his diaper. In fact he would go all day in one diaper if I didn't drag him down to get it changed...simply because I can't stand the odor anymore.
In talking with several of his docs., his OT, and in some reading and research I've done...we've all come to the conclusion that it must be a sensory thing. He never comments on scent...good or bad. He never complains about his clothes...in other words...they could be on backwards, inside out, or two legs in one hole kind of thing...he doesn't notice. (Yes, all of these have happened!) He confuses the senses of hunger, tired, thirsty and temperature all of the time. So, why would he be able to tell me he has to go to the bathroom?
He can't. In reading one of the many toilet training books for autistic and spectrum children...it suggests the possibility of habit training. Yikes! Whose habit...his or mine?? What it comes down to is bringing him to the toilet every 20-30 min. every day, no matter where we are, no matter whether he's gone in his diaper, or actually went on the toilet. It's a matter of me setting my schedule (ha-ha-ha...schedule) around this habit of training him to sit on the toilet regardless of his need to urinate/defecate. We can put pictures of toilets on his schedule as every other activity for him to do, and I've even created a Toilet Rules poster to place in the bathroom so that he knows exactly every step that goes into using the bathroom.
STEP 1 Pull DOWN pants
STEP 2 Pull DOWN underwear
STEP 3 Sit on toilet
STEP 4 Use the toilet paper
STEP 5 Pull UP underwear
STEP 6 Pull UP pants
STEP 7 Flush the toilet
STEP 8 Wash hands
STEP 9 GO PLAY!!
We even have pictures that go along with each direction. The hardest thing for me to deal with is...he as absolutely NO INTEREST whatsoever. How do you teach/train that? I can't show him what it feels like to need to urinate. It's a sensation that most children learn over time and eventually becomes part of daily life.
Of course I worry that my child will be in diapers for even longer than he already has been...let's face it, he will be 5 in December. I know I just have to shake off the looks, the stares, the comments that get (intentionally and unintentionally) thrown my way, for having a "normal" preschooler still in diapers. It's at those times I wish I had a card that I could just hand out to those people that said "I have Asperger Syndrome and Sensory Integration Dysfunction...if you'd like to learn more feel free to ask my Mom!" But then I feel like I'm just being as judgemental as they are.
Only time will tell...and since we've made the decision to home school him...(a whole other topic for another post!) we have all the time in the world.
Thursday, September 06, 2007
It is the month that follows July and precedes September. It is the month where families try to squeeze in one or two more vacations before school starts. It is the month where the weather can range from hot and humid to cool and cloudy...usually in the same day...resulting in packing a diaper bag with an article of clothing for any weather combination. It is the month that my wonderful husband was born a mere 39 years ago! It is the month where you really can tell autumn (our favorite time of year) is on it's way, as darkness comes earlier at night and stays longer into the wee hours of the morning. (Well, at least it's still dark at 5am when our darling cherubs decide it's time to get up!) It also seems to be the month we missed out on this year!
I know that we had an August as we had an awesome vacation in the beginning of the month!! However, from around the 6th through...well...now....we've kind of lost track of time. So, here are the many reasons why we missed out on all that August brings, all the while remaining thankful for the many blessings we gathered along the way.
1. My youngest sister Nicole moved in with us the night we came back from our vacation, (the 6th) and is still residing in our lovely home. Along with her, our two nieces Arianna who is 5 (going on 12), and Lilly who is 3 yrs. old. It hasn't been easy to be honest...for any of us. But under the circumstances it has been the best solution out of the few she had. We don't know when they will be able to move out to begin the difficult journey of starting over, but for all of our sakes we pray it is soon. It has made everything topsy turvy...especially when dealing with the MANY issues that Ethan has dealing with Asperger and SI. My sanity is pretty much gone...and if anyone asks me how I am doing...I can't even lie and say the usual response of "I'm doing fine thank you!" (WARNING: if you do ask me that question be prepared...I may fall apart on you! :) I have become extremely sensitive to constant noise, and motion and find myself wanting to be cloned into about 3 more of any human other than me, in order to deal with the demand of taking care my three chitlins and my nieces. (FYI: 4 of them are in diapers!!)
2. My lovely yet "old" husband severely wrenched his back while putting our 22 pound 2 year old in his car seat after church. It wasn't pretty...and needless to say rendered him useless...er...in a whole lot of pain and unable to move...(love ya!) for not only that day but the next several. He now has PT twice a week to help realign his spine and try to fix the problem.
3.My grandmother passed away on Friday the 17th after battling many health issues. The worst of those being dementia. It was so sad to this women who had taught and touched so many of her grand children's lives, not able to remember who we were or why she couldn't go home. As sad as it is to lose her, we know that she is now free of those earthly chains that tied back all of her memories, and is in a better place with our heavenly father. We thank you all for the many prayers we asked of you as we struggled through these last few months with her.
4.Later that same day (the 17th) we received an update on Sherry's ongoing headaches and dizzy spells. I went to her appointment with her so she could receive the results of her MRI. The news was the worst...she had a brain tumor and we needed to bring her, immediately, to Mass General in Boston. She needed to be admitted ASAP so she could have surgery to remove it. Stunned, but already in crisis mode, Sherry and I prepared everything, (packing bags, child care, directions, food, husbands, etc.) and made our way down to Massachusetts for the unknown. Long story short, she had the surgery on Monday the 20th and they determined it was benign. She had an almond-sized nodule removed from her cerebellum. Surrounding this nodule was an orange sized fluid filled cyst that had to be drained. All of that was causing pressure (as you can imagine) resulting in the headaches and dizziness, etc. and had she not had it removed, it could have shifted or continued to grow and cause permanent damage. It was the scariest weekend of our lives. It was the worst phone call to my parents I've ever had to make. It was the best show of kindness, love, caring, giving, sharing, offering...I've ever been so blessed to be a part of. To all of our family and friends who helped us out in a very scary time of need...words can never express how thankful and blessed we truly are to have all of you in our lives.
5. My grandmother's funeral was on Wednesday the 22nd. Because my grandmother lived in Maine but was to be buried next to her husband in Massachusetts, the arrangements were a little different than usual. We had a short viewing time, followed by a small Catholic ceremony. We weren't able to see her buried though because of inter-state paperwork that still needed to be done. However, I brought Sherry down that Saturday as they do a mass for all of the deceased that were buried that week. So, we were able to attend her graveside afterwards and read some scripture verses from my grandmother's bible and just be there with her. It was wonderful for me to have the quiet time there with Sherry and Rebekah (my sidekick), but it was even better for Sherry since she was unable to attend the funeral.
6. This past week, Rebekah broke one of Ethan's records...albeit a fever record...but a record none the less. She's had a fever since Monday morning...thank you Dan for noticing that she was a little "warmer" than should be normal! Other than the fever though, she didn't have another symptom...so we chalked it up to either teething or the cold her cousin Jack had just had. Well she spiked a fever of 104.9 F yesterday afternoon! (Ethan had been 104.7 F and unlike Rebekah who was beside herself in discomfort and tears had been running around and playing with said temperature!) According to the docs. it's all from a very red, pus filled sore throat...yikes...very scary. Yes, I said doctors...one adult...five children...small room...one needing a bathroom...one needing to nurse...one having a tantrum...one banging on the chair...one pushing the stroller around the room...and one crying...(okay that last one was me) but you get the picture...not pretty.
So, where are the blessings you say?? Well, despite the unbelievable amount of %$ we had unloaded on us...God has been very good!
Sherry is on the mend...though slow...I mean come on it IS brain surgery folks!! :) I affectionately refer to her as "Head Wound Harry" and we constantly find ourselves referring to "it's not a tumor", and "it's all in her head" jokes all the time. She is still with us, and we pray that soon she will be rid of the headaches and dizzy spells that have plagued her for the past several months. God is truly good.
The entire family, on my mom's side, were actually in one spot together after not seeing each other for more than a decade. It was nice to catch up with everyone and share pictures and stories.
We have had this opportunity to be a light in the lives of our nieces. Although at times it is hard to remember, we have to keep in mind that this truly is just a season in our lives. We hope and pray that the time they've spent here will be a guiding force to lead them on the difficult journey they still have ahead of them. I don't envy where my sister is right now...nor do I pretend to understand it. I can only give what I've got to give and pray that it is enough.
So, now here we are...it's September. We've so many other things happen to us like...Rebekah is sitting up now on her own and weighs 15 lbs. 5 ounces...Ethan has actually grown a half inch and is finally stable at the 30 lb. mark...Joshua is only 7 lbs heavier than his sister at 22 lbs., but he grew 3/4 of an inch. They are happy, and as of today since her fever broke, healthy, growing children and for that we are truly blessed. Thank you God!!