parenting special needs

Christmas

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My son is home for Christmas. Alyssa and I picked him up this morning and made great time coming home. In addition to the many toys he was given for Christmas from his school, Thomas also has new sneakers he managed to finagle his social worker into buying *right* after Tommy bought him brand new sneakers Thanksgiving weekend. He is charming. I’m so glad Thomas is home. Especially for Christmas. I can’t imagine him not being here. We’ve already set up the batteries in one of the remote controlled cars he received from school. I started thinking about the time we thought Thomas was going to spend Christmas in the psych hospital. That happened about 5 years ago I think.

Thomas had been very aggressive towards me and I finally couldn’t take it anymore and we had him hospitalized I think the beginning of December/end of November. They did some med changes and his behavior stabilized in the hospital like it always did. I was so fortunate to be singing in the choir that year and we were singing for the Live Nativity. Singing in the choir was a life saver for me. My choir family was praying for us.

We made the 2 hour car ride to visit Thomas and attend meetings with the social workers and psychiatrists. I blamed myself for him being hospitalized at this time so close to Christmas. I was thinking I should have initiated it sooner than I did then he would have been discharged earlier. What’s done was done though. The beginning of December melted into the middle of December, the Live Nativity came and went and we were wondering if Thomas was coming home before Christmas. Finally, about 5 days before Christmas we got the call from the social worker that Thomas was indeed spending Christmas in the psych hospital. We were devastated. How was this going to happen?? How were we to spend Christmas morning without one of our children opening gifts? As we were planning and talking about how we were going to make Christmas “happen”, another social worker called 3 days before Christmas to tell us the insurance company decided Thomas should be discharged. I couldn’t believe it. Simply could not. Tommy was beside himself with joy. He drove up as soon as he could to get him. We did have Christmas together and all was “normal”. Thank the Lord.

I’m grateful those days are behind us and we don’t have to worry about whether we’ll all be together for Christmas. I’m grateful for Thomas’ school and that Thomas is able to come home as often as he does, for as long as he does. His school has truly been a blessing.

The holidays are here!

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Well officially Thanksgiving in about 4 more days. I’m not sure how I feel about the upcoming holiday season. Am I dreading the actual Christmas shopping? I don’t know yet as I haven’t even started, no actually I have started, the gifts haven’t arrived yet via our wonderful postal system I almost forgot about them. One gift I did buy my husband I do actually have here in the house…hidden, haha!

Every year we jump through hoops trying to figure out what to buy our son Thomas. He loves opening gifts. However he isn’t the easiest person to buy gifts for. He’s not one to actually play with any toys, even when he was younger he didn’t really play with toys. Now that he’s 18 it’s more difficult since he isn’t a typical 18 year old young man. I also have family calling me for ideas of what to buy him and they usually are told “I don’t know” in response. Hopefully with Thomas home for Thanksgiving we can pry something out of him or maybe we’ll hit the jackpot and find out multiple “things” he’d like.

We put our tree up the day after thanksgiving. A Thomas tradition. He loves to watch me put the tree up and help. He is a great helper. He’ll carry boxes down from the attic and hang ornaments on the tree. But he won’t rest until all the decorations are up and/or out and in their respective places. I used to dread putting up the tree because Thomas will fixate on it, no one would rest until the darn tree was up. What? You want a “break”?? I don’t think so! But he’s mellowed a bit; either that or our patience has increased. It’s probably a combination of both. These days I don’t dread it, I actually look forward to putting up the tree. It wouldn’t be the same if Thomas wasn’t helping me.

I’ll never forget the one Christmas right after I had a miscarriage. I didn’t want to celebrate anything never mind put up the dang tree. Thomas and I brought the tree down from the attic and I started stringing the lights. I tested every strand of lights before putting them on the tree, then…Of course half the lights wouldn’t work once they were actually on the stupid tree and I literally had a half lit tree. It was horrible. I took all the lights off and threw them away and declared that unless we went out and bought a pre lit tree I wasn’t putting up a tree at all. Fast forward to all of us in Sears debating which pre lit tree was best for us. My husband is the best.

So this year we’ll buy a “real” tree and I’ll string the lights and Thomas will direct and supervise as usual. I’m looking forward to it.

Birthdays

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thomas and me birthday

My Thomas celebrated his 18th birthday this past week. It kind of blew me away that my first baby is now 18 years old. 18 years. It truly seems like yesterday I gave birth. I guess it will always seem that way no matter how old my children get. But 18…man! That’s a milestone. And what an 18 years it has been. How different things would have been if Thomas were an average “typical” child. But that’s not how God wanted it, planned it. It’s taken me a long time to accept that fact. That no matter what I did or didn’t do during my pregnancy and what the midwife did or didn’t do during Thomas’ delivery, The Father was/is in charge and was overseeing everything so that His plan was the one that played out.

It’s hard not to imagine what life could have been like had Thomas not been born the way he was. I like to tell myself there are no guarantees that he would have been a walk in the park. There’s no way of knowing if drugs would have been an issue. Would he have been extremely rebellious? Cutting school? I don’t know. I had a dream not to long ago that Thomas was completely typical. We were sitting together with Alyssa and talking. I don’t remember what we talked about but it was amazing and took me all day to get over that dream. My husband has had a similar dream as well. Was that a gift from The Lord to show us what to expect when we are no longer a part of this world? That there is a part of Thomas He has yet to reveal to us?

18 years old. 18 years of loving this child, fighting for him, changing who I am at my very core, my soul. Being who Thomas is changed me for who I am. I know that was part of The Lord’s plan as well. Amazing isn’t it? The domino effect.

We had an awesome family celebration for Thomas at a local restaurant by his school. Practically the whole staff came out to sing him Happy Birthday. Thomas was overwhelmed and almost hid behind Tommy. I stared at this child of mine. He’s still and always will be my “child” but now he’s a young man. The Lord will continue to work in us and He will continue to give us “gifts” that will glorify Him.

Change of pace

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Now that our youngest child is approaching 8yrs of age, I find myself wondering where do I fit in now?  When everybody was younger and Thomas was living home it was easy to define my role.  I was/am The Mom.  The Stay at Home Mom.  Overseer of all my children. Taking care of everything for everybody.  Now that the girls are older and Thomas isn’t living at home anymore  I find myself  in a state of not knowing what to do with myself.  I’m tired of cleaning ~ I used to clean like nobody’s business trying to keep up with these stupid standards I had in my head, but now I don’t have those standards anymore and I just keep everything nice.  However these days we’re in the middle of a kitchen ceiling renovation so things aren’t as “nice” as I’d like them to be.  So getting back to fitting in, I feel like an anomaly of sorts.  I do know other SAHM’s who are at or around my age and I have this thought in my head that I’m the only one having a hard time that I’m still home, wondering where I fit in.  I should ask them how they feel, but I think there’s a part of me that’s afraid they are going to say how happy and fulfilled they are staying home and meanwhile I am not.  

Then I tell myself that I’m exactly where God wants me right now and I just need to let go of my anxieties concerning this and know that He has a plan.  I’ve been applying to jobs for months now and I haven’t heard boo from any of them.  Right there that should tell me I’m supposed to be home right now.   I just don’t want to be.  I wonder how women did this stay at home thing many years ago, it wasn’t expected that they return to work after the kids went to school.  They just stayed home.  I guess they had many hobbies or something.

With everyone getting older I’m not needed as much.  I know they still need me, heck I still need my mother at times.  But there are more times that they are so independent of me I’m left wondering what to do?  And as whiney as I may sound don’t be mistaken I don’t even miss the days that everyone was small and totally needed me.  No, I don’t miss that at all.  In fact I cringe when I see some mother at the mall or grocery store and she’s trying to shop with all these small kids around, or the mom in the school yard trying to keep an eye on everyone after school.  No thank you. 

Maybe I need a happy medium?  I just need to find that.  Or a job.

 

Diagnosis’

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It’s funny when there’s no one specific diagnosis for your child.  There’s no banner to wave or cause to support. No dinners or fundraisers or awareness day.  Specifically my son.  Thomas was first diagnosed with bipolar disorder shortly before his 6th birthday.  This was the first diagnosis to try and explain the behaviors we were dealing with.  And it made sense at the time (still does for some behaviors).  About 5 years ago we saw a well respected neurologist who in combination with Thomas’ history and test results (MRI, IQ tests, etc…) declared our son as one with “static encephalopathy” which is short for brain damage that won’t get worse nor will it get better. 

I covered these diagnosis in the very early entries of this blog but I don’t expect anyone to remember, if you do I’m impressed :).  Anyway I find myself sometimes envious of those parents with specific diagnosis.  Not envious of the specific diagnosis believe me I don’t think any special needs parent has it easier than any other special needs parent. 

I think I know what I sometimes miss as Thomas’ mother. When he was first diagnosed bipolar I dove into an online support group and found the most wonderful people there. The support I received was second to none and the people were so full of compassion. They had knowledge either learned first hand or they were very well read keeping up on all the latest literature. I even attended a fund raiser with one of my friends (Diane) and we had a ball. These days with Thomas not living home and not being “exactly” bipolar I don’t feel identified with any such group. I still adore and keep in touch with the people I met but we don’t just see our “kids” as just with bipolar, we support each other as parents on a similar journey. As parents period. Parents who have a child with special needs. Overall I think that’s what it should be about. We’re all parents dealing with situations outside the “norm” when raising our children. We all have similar feelings about certain situations. There are many universal emotions we all go through. Although, to play devil’s advocate to myself I do understand certain disorders/diagnosis do have specific issues only another parent or care giver would understand. On the other hand, one of the best conversations I ever had was with a woman I had never met. I was given Jeanette’s phone number so I could speak to another parent who’s child was aggressive to her and they had to place their son in residential care. Jeanette’s son is autistic, but diagnosis didn’t matter one bit. We met and bonded over similar behavior, similar emotions, similar fears. We spent over an hour on the phone talking and even laughing.

These days with Thomas away at school I don’t get many opportunities to talk with other parents like I used to. His school holds events here and there but we’re not always able to go due to the distance and the girls’ schedules. Some days I miss being a part of that “group”.

Discouraged and disconnected.

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I haven’t blogged in a while mainly because I haven’t had much to say.  I’ve been discouraged and disconnected.  Discouraged because my job hunting (along with many others) has been fruitless.  Disconnected and not feeling a part of my life, like it’s just going on without me.

Today I’m relieved to admit I no longer feel discouraged or disconnected.  No, I haven’t found a job but it’s ok.  I’ve stopped measuring my worth as “less than” because I’m still at home.  I’m where God wants me to be right now and no amount of temper tantrums will change that unless it’s what He wants.  I’m still actively job searching but no longer discouraged. When the right job comes along and I know it will, everything will fall into place. It’s just taking a lot longer than I had hoped. But it’s not my plan anyway.

As for feeling disconnected, I didn’t even realize I was disconnected until Tommy pointed it out to me.  I thought I was “ok” not realizing I am missing out on my little world. I wasn’t really enjoying anything either, even thrift shopping believe it or not was not working it’s usual magic.  When you do get disconnected it’s not pleasant and you distance yourself from everything and anything. Hence me not blogging. (This isn’t to say any time I don’t blog I’m feeling that way, sometimes I really don’t have much to say)  I realize (now) this is part of a defense mechanism I have from dealing with the trauma of Thomas being aggressive with me.  I feel like “still??”  This is still freaking affecting me?  My gosh seriously?  But yes it is.  I guess there is no expiration date in dealing with things that are traumatic in your life.

Speaking of Thomas, he will be home this weekend for Mother’s Day.  I’m glad he’ll be here and he’s really looking forward to coming home. 

Guardianship

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Check off one more thing I never thought I’d be doing, filling out paperwork to become our son’s legal guardian. Thomas turns 18 this year.  I dislike dealing with this stuff even though I know it has to be done to protect him.  The fact that he is going to be 18 years old is enough to blow my mind all by itself. 

This isn’t a poor me/pity post.  I’m in awe of where the years went. When I was in the thick of fits and tantrums and running from doctor to specialist trying to get help time seemed so slow…it dragged to be honest.  I remember the first time we had an “official” diagnosis, Thomas was just about 6 years old.  How the heck did I get through 6 years of no answers?   Somehow I did it.

Now today I look at the papers for legal guardianship and I’m amazed that we all made it through the past 18 years.  I know I couldn’t have made it through the past 5 years or so without God in my life.  His hand is on our lives and for that I’m so very grateful.  Without The Lord I know Thomas wouldn’t have been admitted to the school he attends now. The fit is so right. Things don’t just “work out” that way without His control being asserted.   His path and way cannot be denied. 

I know when I stop procrastinating and really sit down with my husband and fill out the guardianship papers we will need help and guidance and I know we’ll get what we need.  

Wandering

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My thoughts that is, they’re wandering as most of us would probably admit to.  I wander mostly to what life would be like if I worked a full time job outside the house.  Would things be that hectic?  Would it alleviate my boredom?  Hard to say and/or predict.  Don’t get me wrong I’m thankful my husband has been able to provide for us that I have been able to stay home but dang man, this staying at home mom thing seems to get more difficult as the kids get older.  In my personal experience, I find that I’m taken for granted.  My girls *know* when I’m home and that they can call to come home from school (this past time my daughter was NOT all that ill that she had to come home, I only discovered this only after I picked her up).  Another daughter asked to be picked up because she was not feeling well but well enough to attend some classes but not well enough to take the bus home~again information I discovered after I did the driving and  picking up of said daughter. 

I know my husband appreciates me as I appreciate him.  I don’t want either one of us to take each other for granted and so far we’ve been “ok” in that category.  My kids on the other hand…after last weeks picking up – a- pa-looza.  I made the decision that just because I am “home” doesn’t mean I have to pick everyone up just because they want me to.  I think when you stay at home long enough you start to feel “well that’s what I’m here for”, but honestly no it’s not.  I’m here at this time in everyone’s life to ensure the house runs smoothly, not to pick up kids that aren’t even sick (like really sick you all know what I mean). 

So as a result of being taken for granted my thoughts wander. Wander about working full time, part time, any time that wouldn’t take away from when I have to be here. Not an easy schedule to work around but those are my requirements. I won’t make excuses for why I’m still home. Things with Thomas kept me here at this station longer than I thought I would be.

So now my thoughts wander and I wonder what’s next?

Acclimated

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Acclimated that is what my son has become to his school.  Or should I say his “home” now.  It’s odd to think of your child calling somewhere other than your home *their* home.  I’m not complaining and surprisingly not upset about it.  But my son is most likely more comfortable at his school/home than here where his family lives.  I noticed this past week that when Thomas is asking to come here, he doesn’t ask to “come home” he asks for “a visit”.  I respond in the way he asks, that yes he can have a visit.  I notice I don’t say he’s “coming home” either. 

So this is probably item number 856 of things you should know as a parent of a special needs child who needs residential placement.  Some days I wish I journaled the first time Thomas was in residential.  There are many instances that stand out bright and unmistakable but I wonder what didn’t make it in the memory banks.  I know we felt very empty when he went the first time.  This time it wasn’t emptiness.  Relief was there as well as disbelief and I know I was glad to be able to feel safe in my own home and know Thomas was in a safe place as well.  The first time he was so young but back then I wasn’t worried about his age as much as his behavior.  We just wanted him “fixed”, make him well that he can come home again.  And they did. 

This time, residential is not to fix Thomas it’s permanent, we cannot provide for him in our home.  He isn’t safe to live here anymore.  Heavy huh?  Again, I’m ok with this.  I don’t like it, not one bit.  I’m still his mother.  But things are what they are. 

So I guess one could say we are acclimated to Thomas in residential too.  We’ve made our home very comfortable for “us” who live here at this home. We’ve shifted and adjusted and have become acclimated to one of our family living elsewhere.  Almost dare I say “normal”?  Or whatever normal is.  One of my favorite people used to say, “Normal is just a setting on a dryer” and I would laugh.  But it’s true. 

 

People watching and a visit.

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This past Friday morning I drove to Thomas’ school to pick him up for a visit . While I was waiting for him in this area that resembles a living room, there was a group of people visiting the school.  4 people.  Of course the people watcher in me was intrigued.  There were a mom and a dad, a social worker (she mentioned she was an MSW) and another male figure who gave no inclination as to who he was in relation to the parents.  I get so nosey when I see parents doing what Tommy and I did but these people have “back up”.  You see every time we had to hospitalize Thomas or visit residential schools we did it alone.  Just Tommy and I.  No social workers, no case managers visiting to give their input or questions that may have been helpful.  Actually just to have another shoulder to lean on may have been nice.  But then again I say this now.  In retrospect.  Honestly its funny because Tommy and I never felt “alone” during those times, we were fortunate enough to have each other.  I guess I wonder if the grass is greener having other people involved with you making these decisions.  Or is it more confusing because unless you are that child’s parent you are not as invested as to where that child is placed. 

I shouldn’t say Tommy and I were “alone” as we certainly had The Lord with us, leading us and making His way for the school Thomas were to attend. 

So after my people watching incident, Thomas was brought to me and we were on our merry way home.  The visit went well in the beginning but by the end of Saturday things were starting to crumble.  Not in a horrific way Thank God but in a way that only solidifies our decision for Thomas to attend residential school.  Tommy drove him back Sunday morning.  Later that day, Tommy and I discussed together how do you parent a kid like him?  Since Thomas was a toddler you could give him what ever he wanted and he would still throw something at you or have a fit.  These days you give him what he wants and he almost dismisses it once he obtains whatever it was he wanted and he’s on to the next “thing”.  It’s exhausting.  Not only that but we still realize we cannot leave him alone with me.  There was a part of me that was hoping that would change but it has not.  There was no aggression at this visit but the signs are still there that he will target me for no particular reason. Thomas will also be somewhat defiant and its not easy to reason with a 17 year old “kid” you don’t have the control over you did at say age 10 (not that we had much control over Thomas at that age either).  It’s a bitter pill to swallow about your own child.  This isn’t a pity post.  Its the truth and it’s our life. 

 

This makes me realize how huge God is and how He has given us so much direction and so much wisdom in dealing with our son. I always pray for a hedge of protection for Thomas. Although one could say I could easily pray for protection for me when it comes to Thomas. But I don’t. I pray for protection for him so that whoever is teaching, guiding or working with my son will do so with the wisdom and maturity my son needs. If I can’t be there Dear Lord let there be people who are there that know how to handle him. I know the Holy Spirit is well at work ensuring those things happen.