parenting special needs.

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This past year I had a difficult time no doubt.  Battling depression while accepting my son being at residential school and raising my girls.  In a way I thought the girls might be “easy” to deal with now that I wasn’t on guard all the time from Thomas. Ha!  A grade schooler, a pre-teen and a full fledged teen.  All girls.  It’s been interesting, sometimes amusing and sometimes I’m ready to pull my hair out. There have also been plenty of times my heart has swelled with pride and they make me laugh or cry with their greatness.  By the way, I’ve already apologized to my mother for my behavior as a teen.  Yes I did.

With Thomas away I had a chance to re-group as his mother. The school staff was now pretty much “in charge” of the majority of his needs and as much as I dislike to admit it, I welcomed the break. The staff is wonderful and kept me informed of when Thomas needed to see the doctor, medications given if he had a cold, etc… I can’t complain at all and I know we are fortunate. God placed him there as I’ve written before, I’m confident of that fact.

This break also gave me a chance to heal and take care of the bruises that you couldn’t see. As already mentioned I take medication and I’m in therapy. Both choices were difficult but absolutely necessary. Even though life wasn’t perfect and adjustments needed to be made I was able to parent my girls, be a wife to my husband, take a class at the local city college and start my own business (www.nayaudo.com ;)). Most importantly my relationship with my son was healed. I can’t imagine being on my guard with him all the time like I was. These days when we visit him at school or Thomas comes home for a visit I’m happy and realize how much I’ve missed him. My son. He’s mine.image

Medication roller coaster

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When I started taking antidepressant medication I was so hopeful we would find the right one on the first try.  Wishful thinking I realize now.  Actually the first med trialed did work for a while then petered out.  Dr. L upped the dose and as I stated in an earlier post I’d gain weight the med would kick in and I would be “ok”. Until the med petered out again, rinse and repeat. We spoke about adding another med as an adjunct, I agreed and that worked for awhile until the side effect of fatigue started really getting to me. I’m not a nap person and this medication was turning me into one.

We discussed this also and Dr. L lowered the adjunct dose which really made the roller coaster take a downward slope. Not cool. My depression was slowly creeping back in and I knew it wouldn’t be long before it was bad. Dr. L took me off the first antidepressant and put me on another but…this one did not work as fast as the first one. It took about 2-3 weeks before I noticed a difference and believe me it wasn’t anything to write home about. At one point while I was waiting for the new antidepressant to kick in, I called Dr. L. It was a Thursday evening. He asked me if I was alright and I told him, “No” I also asked him (almost demanded) if he had a plan, I needed to know his plan of what medication was next and I wanted to jump out of my skin. I did not want to be me anymore and feel this way, I couldn’t stand it. Dr. L was so, so patient and good. He assured me he did have a “plan” but it was 8:30 at night on a Thursday, he didn’t have my plan right in front of him. He calmly encouraged me to stick it out with this med and to call him if I needed him. The way he spoke to me with such compassion I’ll never forget.

I prayed to God to give Dr. L wisdom and direction in treating me to please guide Dr. L in his choice of medications and to give me strength.

After 4 weeks the new medication did take effect but it wasn’t as great as it could be. I made an appointment with Dr. L and we discussed different meds and their side effects. Which side effects were acceptable to me? I really appreciated that my input was important. In the end we decided on an antidepressant and an antidepressant/anti-anxiety medication. I had a written schedule to follow and I was cool with that.

At one point I did become angry with God. I couldn’t understand all the med changes and trials, the ups and the downs. It didn’t seem fair. I try to say that without whining. Being mad at God made me upset all over again. I was afraid that I was mad at Him. I spoke to one of the Pastors at church in tears about being angry at God. He looked at me so kindly and said, “It’s ok…He can take it”. After that my anger faded a bit and I prayed and asked for forgiveness.

As for the current combo I’m taking now, I’m so hopeful the feeling I have of being “me” lasts and lasts.

These days

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These days I’m feeling better and dare I say happy at times? I told Nancy this and she was thrilled for me which I thought was really sweet.

The picture I posted is me at a recent festival/fair I attended to promote my business. I am a personal shopper specializing…wait for it…specializing in the thrift! Yes I am :). I have a website http://www.nayaudo.com where I have some of my current inventory. I mainly take requests of a designer or style of clothing one is searching for. If I find it at the thrift my cost is low so your (the customer) price is low as well. I’m more than happy to look for just about anything for anyone. Clothes and shoes though let’s not get carried away.

So getting back to me being happy. I don’t feel odd or euphoric I just feel like “me” and it’s been so long since I’ve felt this way. I’m not 100% and still on the quiet side and I can get lost in my thoughts and insecurities. But I’ve learned to open up a bit especially to Tommy. I take medication too, something I neverever in a million years thought I would do. Part of me felt like a hypocrite as I was terrified of meds, meanwhile my son takes meds. I’m over that now and honestly if I need meds for years or however long my doctor feels necessary I’m ok with that. Depression is effin serious man.

I had thoughts and said things when I was depressed that I couldn’t imagine thinking or saying when I’m just “me”.
Depression is real, it’s more than feeling blue and you can do something or treat yourself to snap out of it. It’s dark and scary and can be dangerous and not a place I want to revisit.

As scary as depression is asking for help can be almost equally as scary. It was for me anyway. As I waited for the elevator to see my psychiatrist the first time I wanted to throw up. I was so, so nervous. But once I was in his office and completely honest about what I was thinking and how I felt, I wasn’t afraid anymore, actually it was good to get it out to someone I knew wouldn’t judge me and wasn’t afraid of what I was saying. I have a wonderful doctor and I’m sure I’m fortunate to have found him without much searching. He is in Manhattan so I have a small commute but it is so worth it, plus there’s a Goodwill across the street. ;).

What to do with myself?

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When September, 2012 came around I decided we/I needed a break from running around.  I didn’t encourage any extracurricular activities and thankfully it went unnoticed by the girls, until around November.  The thought of running here and there like I did last year was too much to even think about never mind actually do. The year before the girls had taken gymnastics and even Thomas has a class which was run by “On Your Mark” an agency that serves the developmentally disabled. I thought it was the coolest that he was in that class and so did the girls but after a few hospitalizations Thomas refused to go and no amount of pleading or cajoling would change his mind.

If Tommy was home I would take the girls and stay to watch them in the waiting room of the gym. Most times there was all this small talk and chit chat from the other parents waiting. I couldn’t talk much or participate my depression was that bad. I would look down or away at anyone who looked my way. To be honest I found most of them annoying. I mean how does one make small talk when the only thing rattling around in your brain is how useless you are? It’s a terrible state to be in. There were many times I sat there holding back tears due to the horrible things I thought about myself.

In the meantime when Alyssa and Daniella were asking me why wouldn’t I talk to anyone. I told them flat out I didn’t like the other parents and I was happy to be alone. Towards the end of the school year I did get friendly with another mother who happens to live around the corner. She is one of those people who I’d call “low maintenance”. She had no drama and pretty much kept to herself as well. Perfect.

I was seeing Dr. L and trialing different meds. Some would work for awhile and then stop working. He would up the dosage, I’d gain weight and get pissed but then the increase would kick in and I could deal with the weight gain. It was a roller coaster and not a fun one at that.

I couldn’t stay home because I would be alone with my thoughts and that wasn’t safe. I couldn’t go to the mall everyday and shop, my husband would’ve had a cow and rightfully so, getting a job was out of the question as I was barely holding it together as it was. This is where the thrift shopping comes in. I could shop or just go through racks on a mad hunt for designer items. I’m guessing I have a very serious face while thrifting. Alyssa came with me a few times and said, “oh my gosh Mom! You should see your face!” That made me laugh and it makes me smile to this day. Not many people talk to me when I’m at the thrift store.

I also became a snobby thrifter. I refused to buy anything I could “afford”. I only wanted things I would never pay retail for as the retail cost of those items are crazed. An example is denim. I would (and still do) only buy premium denim such as Citizens of Humanity, Seven For All Mankind, Madewell, etc… On my birthday I scored a Chanel top. The prices were so low it was awesome.

So there you have it my answer to getting out of the house when you are suffering from depression: Thrift store :).

After the Sail school

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So as you can imagine our house was fairly quiet after Thomas was admitted to the residential school.  Honestly I don’t remember much about the month of July with the exception of celebrating 3 birthdays.  Tommy, Thomas and Alyssa all have July birthdays.  For Thomas’ birthday we took him out to dinner at this Irish Pub down the road from his school. Daniella made him a cake and the waitress was so thoughtful, she put it in the kitchen for us until after dinner. When we were ready we sang “Happy Birthday” and the waitress brought out the cake with plates and a cake server. I thought that was really sweet. Leaving Thomas was really hard. He was only at the school for just over a week but there was no way we wouldn’t celebrate.

In the middle of July, Tommy wanted to get away so we stayed overnight in Wildwood, NJ. It was nice, we went to the beach and stayed at a motel right on the beach. We all had some sunburn so the next day we hit the outlets in NJ on the way home. Tommy and I were both not right but it was good to get away for a little bit.

In August we went to Myrtle Beach, SC. We stayed at a friend’s condo. We had gone there the year before after Thomas was discharged from the hospital. Going without Thomas was difficult, everything we did reminded us of the year before when he was with us. In a weird way I’m glad we went because it forced us to get over doing things as a family without Thomas.

After Myrtle Beach I don’t remember much of the summer. To this day I’m surprised at what I don’t remember. What I do remember is feeling like a failure as a mother. That after all the running around to see all these doctors and specialists, all the evaluations and medications, hospitalizations…residential school was the end result for this child I love so much. I felt like that for months. I addressed this mostly with my therapist, I mean how do you explain this to friends and family?

The Sail School

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So after finding out there was another boy vying for this one open space, Tommy and I were frustrated. We came home and I called Cheryl, the Pastors wife and she prayed for us. About a week or so later Admissions Woman called and made an appointment to bring Thomas up to the school. To say we were hopeful is an understatement.

We arrive and we were met by Admissions Woman and another staff member. For the life of me I can’t remember her name or title. They did a mini assessment of Thomas, asked a few questions and then they asked Tommy to take Thomas out of the room so they could talk to me. It was then I was informed that the other boy had filled the available opening. My face froze, I didn’t know what to say. All I thought of was now I have to explain this to my husband. That he took a day off work for nothing. I couldnt speak, couldn’t even ask them why they had us come there knowing there were no open spots? I thanked them for their time and headed to my husband and son, both waiting in the car. I told Tommy and he was angry. I didn’t blame him. This was in May, 2012.

Fast forward to June, 2012. Admissions woman calls me and says there will be an anticipated opening the end of June. Praise God and endless thanks to our church family for all their prayers. This is perfect timing because Thomas was just admitted to the hospital for aggression towards me. I was given an estimated date of admission to the school. Thomas was discharged from the hospital and we had 2 weeks to get through before the admission to the Sail school. We tried to prepare Thomas the best we could he already knew what is was like to live at a school away from home. My heart hurt even though I knew we couldn’t go on living like this. Thomas went to bed and I stayed with him until he went to sleep, staring at this young man, my child, my first. I cried.

Once again I had to mark my son’s clothes and socks with his initials. I don’t remember much except I did it. The day of admission arrived and I went alone with Thomas. Tommy had to work, he was the only person I would have wanted to go with. I didn’t want to make small talk with anyone or talk period. It was a Thursday. I left the house around 2 pm and there was decent traffic on the George Washington Bridge. It took us at least another hour to arrive. We were late.

When we entered the Sail school we were met by a staff manager, Admissions Woman, and the nurse. Everyone was wonderful. Thomas refused to leave my side for a look around or a tour. I had a ton of paperwork to read and sign, make sure they had his IEP for school, make sure they know due to his meds Thomas needs sunscreen, etc… After a while Thomas grew bored and agreed to go outside to the playground with a staff member. Before I could speak the word “sunscreen” the staff had already put it on Thomas.

One of the hardest things I had to do was give the Nurse Thomas’ meds. I handed over his clothes with no problem but to hand over the medications was really laying down and admitting I couldn’t have him at home anymore. To me handing over his meds was the equivalent of handing them my son and with him my complete trust. The nurse was wonderful and understood when I told her how difficult this was.

After a while there was nothing left to do but go home. All the papers were signed, they had his meds, I gave the school the history they wanted…it was time to leave. I said goodbye to Thomas. He became upset and started crying, I held back tears and after many hugs and goodbyes I left. I ran to my car crying. I sat there. I called Tommy but I don’t remember what we said to each other. After I calmed down I drove home, by myself and I listened to Christian contemporary music.

The next day my stomach became upset and I was sick for 3 days. I cried and cried those 3 days. The Lord was with me as he made sure the girls stayed occupied so I could be sick and cry in peace.

/p>

Residential school (again)

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As I was spiraling from depression, Thomas’ packet had been sent out to state approved residential schools, about 12-13 schools.  Weeks go by and we had heard nothing from any of the schools Tommy and I were like, WTH?  I called the contact person at the Board of Education multiple times and I did not receive a call back. Unbelievable IMO. Finally after speaking with a community board member who called on my behalf did I receive a return phone call. The woman said we had to wait for the schools to contact us. Fine.

I got tired of waiting and went down the list making phone calls to the admissions department of every school his packet was sent to. Sometimes I spoke to a live person and they would tell me why Thomas wasn’t appropriate for their school or the school didn’t have a peer group for him, meaning the population didn’t include 16 year old boys at the same cognitive level as him.

While I appreciated the honesty of the schools I did speak to, I was starting to get worried, so was Tommy. We really needed a school for him and soon. One morning I came home from my walk after bringing Daniella and Samantha to school. The phone rang and I contemplated not picking it up. I was hot and sweaty from my walk, my mood sucked, etc… For whatever reason (God’s hand) I did pick up the phone and it was the admissions person from the Sail school. She told me Thomas wouldn’t be appropriate for that school because his IQ was too high for their population. I almost laughed and said, “What kind of population do you serve, my son’s IQ is in the high 40’s”. Turns out she was reading an old IQ report from when Thomas was younger. She said she was going to review his packet again and call me back.

A couple of hours later she did call me back and she also spoke to Thomas’ current school who confirmed the last IQ test was as I said. Admissions Woman asked if Tommy and I would like to tour the school. Of course we said yes.

We went without Thomas. Turns out the Sail school was literally a five minute drive from Andrus, the residential school Thomas attended when he was 8 yrs old until he was 11 yrs old. During the ride up there Tommy and I discussed that this was the only school we heard from that was interested in our son. We didn’t want to make our decision based on that fact. We had to make our decision as unbiased as possible and also face the possibility that this school may not be “the one” and we would be back at square one.

We met with Admissions Woman who was wonderful and so very knowledgable. The building is older and not the most modern but we both didn’t care. She gave us a tour of the bedrooms, while we were there the cleaning people were busy changing sheets and blankets, some delivering clean laundry and others gathering dirty laundry. There were also people mopping the floors it was impressive IMO. We then toured the school where medically fragile students attended as well as special needs students who required a small student to teacher ratio and more attention.

To be honest after seeing that school I was a little freaked out as those students were lower functioning than Thomas. I was afraid of Thomas being placed where he did not belong. Maybe this wasn’t the place for Thomas. We were then given a tour of the other school which is off the residential campus. It’s down the road about a 5 minute drive and the students are bused from the residence building. We saw the first classroom, met the teacher and her students and the para professional and immediately felt at home. The environment and atmosphere was so similar to the school Thomas was currently attending. I couldn’t believe it! We met the teacher and students of the other two classrooms and the feeling of familiarity was the same. I was so relieved!

Admissions Woman stepped away to give Tommy and I a chance to talk things over. We both agreed right there and then that we loved the school and wanted Thomas to attend. We told Admissions Woman this. She informs us then that there was another boy being considered for the one space they had available.

Spiraling, spiraling

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After my weekend  “in bed”  I knew Monday morning I had to get up to get everyone ready for school.   Thomas was the toughest as he would be aggressive with me upon waking up.  The girls would stay in their rooms until he calmed down a bit.   My alarm would go off and I’d lay there in bed a few minutes petting my cat named Cash, psyching myself up for the task of waking up Thomas.  Cash is one beautiful cat.  Long, white and tan hair with the bluest eyes.  I swear The Lord sent her to me.  We found her as a stray.  

Anyway…mornings sucked. I’d somehow manage to get Thomas up, he dressed himself then give him his meds, breakfast, then wait for the bus. It was not easy or pleasant. Sometimes he calmed down when the bus came sometimes not. The school was aware of what was going on but they couldn’t help me other than assure me about the residential placement we were waiting on.

Living with me at this time was terrible. I was irritable, moody, I had no patience and would snap at anybody. Tommy and I argued quite a bit and I know I was the cause of most of them. I was miserable, I had no joy in my life and felt like a worthless human being with no purpose in life.

Tommy told me I had to find a therapist. I agreed even though I was terrified. We found a list online of psychologists and social workers/therapists that take our insurance and I started calling. I left message after message and NO ONE called me back. Oh wait, one did call me back…a week later. I was so pissed off I told her since she took a week to call me back I wasn’t interested anymore. Not to brag but my husband has excellent health benefits, I felt like I was waving around good insurance for therapy and no one wanted it. It was bizarre.

This went on for weeks. In the middle of it all our church was putting on it’s Easter production, the story of the Gospel of Jesus Christ. I’m in the choir and my two older girls were dancers. Any chance I had I went to church, it was my lifeline and escape. I felt safe in church. Performing in the Easter Production was a perfect distraction and gave me a purpose. I found the songs we sang to be so comforting, as well as singing for The Lord.

Singing with the choir wasn’t always so peaceful for me. There were many times I felt like a fraud singing up there. Fearing at any moment someone would point and yell from the congregation, “Fake! Loser! Fraud!” Because I thought so little of myself I figured I was transparent. There was also a time or two when I had to leave church when the choir was singing because Thomas was having a meltdown and Tommy wanted me home.

Finally, finally I started seeing Nancy who I’ve mentioned before. I know The Lord placed her in my life. She is wonderful and just what I need in a therapist. I even enjoy the traveling to her office in Manhattan. When I started seeing Nancy I was a mess and I cried through every one of our early sessions. After a month or so I decided to see the psychiatrist, Dr. L who was treating Thomas. He was fine with seeing both of us. I was scared to death of medication and I made sure Dr. L knew that. He started me off with an anti anxiety medication at a very low dose, after a couple of months I agreed to an antidepressant as well. I had to trust him, I desperately wanted to feel better. I also know Dr. L was placed in my life by The Lord. Things don’t work out in such a “coincidental” way, no they don’t. They are planned by God. The way I look at it, I’m trusting God who put Dr. L in my life so I must trust Dr. L as he was placed in my life by God.

I have to say for me to get to that point of trust was huge. I was so used to trying to control everything with my son. When I finally let go of that control and realized God has his own plan it was a relief

Depression and the spiraling…

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As I mentioned in previous posts living with an aggressive, teenage special needs son was taking it’s toll on me. I remember Thomas being aggressive to me in October 2012 and I felt a distinct “shift” of my mind.  I also had a flashback to when Thomas 4 yrs old and how he used to hit me then too.  It’s so hard to describe that “shift” but it was real.  I felt as if I was “off” but couldn’t put my finger on how I was “off” or describe it to anyone.  By November I remember my husband giving me a hug and me saying, “Nothing feels…right

By December Thomas was hospitalized again. I still had to do Christmas shopping and prepare for the upcoming holiday. I would have panic episodes in the mall while trying to think of gifts for family and friends. It all seemed impossible. The same Christmas shopping I had done by myself for the last 16 years felt like the most enormous, overwhelming task. I would call my husband on his cell to calm me down. He was wonderful and always knew what to say.

We also had to face the possibility that Thomas could be spending Christmas in the hospital, which meant we as his family would be spending it in the hospital with him. The beginning of December was also the time when our church performs a Live Nativity. I’m in the choir. I managed to perform with the choir, honestly I enjoyed it as singing about and celebrating our Lord’s birth was calming and I loved being around my choir friends to take my mind off my life.

For whatever reason our insurance company decided Thomas should be discharged it was at or around December 22. Tommy felt it was the work of God. That divine intervention had him discharged so he could spend Christmas with us and us with him, in our home. The social worker was definite that Thomas was spending the holiday in the hospital, so this news was a shock and surprise. I don’t like to admit this but I didn’t know how to feel. Like I said I was already “off”. To everyone I put on a happy face. But inside I felt nothing. At this time I hadz no idea what was going on with me. Christmas came and went I do remember it was nice, we spent Christmas Eve with Tommy’s family as usual and Christmas Day was spent with my family as usual.

By January I started feeling “less than”. Like I had wasted my life being a stay at home mom. I should have had a career, not spent my life staying home, I called myself every negative name in the book. It was horrible. One weekend I couldn’t contain it anymore and broke down. I went to bed. I never“go to bed” unless I’m physically ill, like the flu or something. But that one weekend I went to bed! And I cried and cried and thought the most negative things about myself. I felt like the most worthless, insignificant, unimportant person in this world. I have tears welling up remembering this. This is depression. This is what it does, it’s darkness that takes over and makes the light almost impossible to come through. I couldn’t stop crying and ranting, “THIS is what happens when you waste your life, THIS!!” I was referring to myself and how terrible I felt about myself. Tommy was so worried and had no idea what to do with me. I didn’t know what to do with me.

Revolving Door…

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As mentioned in my last post, Thomas was in and out of the hospital.   Admission, med change, discharge.  Rinse and repeat over and over.   We were lost Tommy and I, until the hospital psychiatrist and social worker recommended residential school. We weren’t surprised but it was still a shock. We knew it was our only option. Things could not continue this way, Thomas in and out of the hospital; then when he was home I was the target for his aggression.

There came another instance where I had to call an ambulance. That time they sent at least 4 police cars and then the EMT’S. This all took place one evening in my quiet neighborhood. I couldn’t stop crying and once again God stepped in. He is amazing. I needed someone to watch Samantha our youngest. My neighbor’s 18 yr old daughter was sitting on her front steps. I walked across the street and handed Samantha over to Meg and said, “Your Mom has my number tell her to call me.” Meg didn’t bat an eye, she nodded and walked to her house with my daughter. Alyssa was out with friends and Daniella was with another neighbor’s daughter and baby sitter. I saw the Dad and panicked saying, “Sean, Daniella is with your daughter and Marcy!” Sean replied, “I already called Marcy and told her to drive around a bit, to stay away right now.” I could not believe how wonderful my neighbors are. I truly believe The Lord intentionally placed us in this house in this neighborhood.

The result of that ambulance fiasco was the same as the first. I brought him home. Tommy picked us up as I had rode in the ambulance with Thomas. We drove home in silence. There was nothing to say.

Again, Thomas was hospitalized, 2 hours away. No other medication had the wonderful effect of stabilization as the one we had to discontinue. In the meantime I was writing letters and gathering documents and recommendations that Thomas attend residential school. I almost forgot, there were a couple of meetings thrown in there too.

We were prepared to hire a lawyer like the last time, but held off in the hope it wouldn’t be necessary. In the midst of this all I was fighting depression and struggling to find a therapist. I know in one of my former posts I mentioned Nancy and how she was in our lives. https://nayaudo.wordpress.com/2013/07/07/recent-thrift-finds-and-other-parts-of-my-life/

Again God placed someone exactely where I needed them. He knew I would need Nancy 9 years ago when I met her looking for help for Thomas. He knew years later I would need her for help for me.

After the meetings were attended and appropriate letters and letters of recommendation were mailed certified mail, Thomas was approved for residential school. It wasn’t necessary for us to hire a lawyer, thank God! What happens next is a central office sends out Thomas’ packet which is all his history and school information, IQ testing, IEP, etc…

I was told Thomas’ packet was sent to 12 schools.