parenting special needs.

19

MenayOLeave a comment

My son turned 19 today. I can’t believe 19 years have passed since I became a mother for the first time. My Thomas. The one who made me grow up and become an advocate. I wasn’t looking to be anything other than a mother in those days.  I certainly wasn’t looking to be the mother of a special needs child. That was not in the “plan”. As if it’s in anybody’s plan when you start your family . I once read on a special needs parenting message board, “when you agree to become a mother you essentially agree to become the mother of a special needs child…” Meaning you usually don’t know that that child will have issues, or something to that effect, the exact words escape me. I’m not sure I agree with that statement but I’ve never forgotten it.

Being Thomas’ mom changed me. To this day I’m still being changed and challenged and growing and grieving. I don’t think the grieving ever stops when your child is special needs. You never stop wondering the what ifs. We have the added bonus of having to trust virtual strangers to care for our child since he cannot live at home. We have been blessed with the residential facility that Thomas lives at. These “strangers” have earned our respect and many times when we are fortunate enough to see the staff that cares for our son, we are more than happy to be in their presence. More than happy to inquire about their well being. I’m happy to be on a first name basis with the social workers and charge nurse. I’m very happy to be on the receiving end of a hug or kiss hello from them. It’s been 3 years this June that Thomas entered the residential facility and I’m extremely happy to say for the most part it’s been an uneventful 3 years in that there hasn’t been any emergencies or drama or situations to make us unhappy.

This 19th birthday also marks three years that I’ve been treated for depression and anxiety. I first sought help before Thomas’ 16th birthday.  I’m thrilled to be feeling as well as I do. It’s been a long road and now that I am in the light I don’t mind talking about the dark times. I don’t want to dwell on those times but if my writing about my dark time can help someone else and know they’re not alone it’s worth it. 3 years ago I never thought I’d be where I am today.

Blessings

MenayOLeave a comment

I have this song running through my head this morning, Blessings by Laura Story. Yesterday my husband and I were talking to a neighbor who also has a special needs daughter. Many of you know about our Thomas who is also special needs. We’ve been through many, many trials with Thomas. And everytime I hear this song I think of him. What if our greatest trial is God’s blessing in disguise?

Anyway, when we were speaking with our neighbor she mentioned that she often wonders what her daughter would have been like had things been different. My husband replied that he often thinks the same thing about Thomas. I do think that also about Thomas. The big “what if?”  What if he’d been born “normal”?. What if? It almost makes you loathe the word, “if”. That word can hold so much. Thomas is one of the greatest achings of my life. It still pains me that he cannot live at home. I know my husband feels the same. I love Thomas for who he is now, not what he could have been. Thomas being the way he is changed me as a mother. And if I were to be able to change him to a “normal” person, would I then have to change myself to how I was before he was in my life?

I honestly don’t dwell on the what ifs because it is pointless. I tend to focus on the present and future which can hold enough worry all by themselves.  But this song speaks so perfectly to my heart. Especially when she sings, “This is not our home…”  No, this is not our home. I often wonder if when I do meet our Lord will I ask Him questions about my earthly life. Thomas being in the forefront of those queries. Why were we chosen to be his parents? Why did God make things so challenging? Why the heartache? Or will I even care at that point? What I do believe is that when Thomas meets the Lord and joins us, I believe he will tell us himself. It will be glorious to hear my son talk clearly and coherently. I was given a glimpse of this in a dream I had a couple of years ago. Thomas was just a typical teen and him, Alyssa and I were just sitting in our front sun porch talking to one another. I have no idea what we were talking about I just remember Thomas being “normal”. I know when we’re all in heaven together we’ll all talk again. God gave me a preview.

It’s been a while…

MenayO1 Comment

It’s been a while since I’ve written in this blog.  Nothing much has changed since my last entry. I’m still working the job, I still love the Lord, and the family is fine. I’m just quiet. I don’t particularly like being quiet. I need to be shaken up a bit, but in a good way. I’m searching and applying for other jobs but I’ve only been met with rejections. I keep reminding myself that where ever I am is exactly where God wants me to be. I have handed over my trust to the Lord that another job will come along when He feels the time is right and it’s where I’m meant to be. So right now midtown Manhattan twice a week is where I am meant to be and where the Lord wants me. I don’t dislike the job, I do wish I had more hours and more people interaction. I like chatting and interacting with the public. Speaking of the Lord, I’m enjoying church and bible study. I’ve been quiet at both venues though. I used to be very outgoing during bible study, sharing my thoughts and ideas. As of late I’ve been taking a back seat and let others be vocal and just take it all in. There we go with the quiet issue again. I haven’t had anything to share or felt the need to share. I so want to change that. Again I need a shake up. I’m still thrift shopping, finding treasures here and there.  Last week I found the cutest Chanel t shirt and the week before brand new Diesel denim that fit like a glove. Lucky for me both were in my size so I was happy with those scores. On the Thomas front, Tommy and I are officially his legal guardians. When Thomas turned 18 Tommy and I had to file for legal guardianship of Thomas so we will be able to continue to make decisions for him as he is incapable of making decisions for himself. We were fingerprinted and back ground checked.  I find that mildly amusing as no one said boo to me when I gave birth and we were sent home without any kind of instruction manual. But then Thomas turns 18 and we’re subject to whether or not we are capable of being his guardians. We seemed to do a fine enough job for the past 18 years…

The holidays are here!

MenayOLeave a comment

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.

The next step.

MenayOLeave a comment

With Thomas turning 18 this year, Tommy and I are going through the process of obtaining legal guardianship of him. This freaked me out. Not that I am to be my son’s legal guardian past the age of legal adulthood, just that we have to do this period. I had a difficult time filling out the large packet of papers the social worker from school sent us and I held back tears when I had to call the Surrogate court here where we live for further information. I still can’t get over that my first born is 18 years old. Freaks me out man. Every time I think about the next steps we have to take I get choked up and remember Thomas as a baby and I feel like I want to go back. Back to when he was so small and everything was alright. We had yet to begin our journey filled with frustration and doctors and specialists.

I don’t do this with my other kids. I mean Alyssa recently got her drivers permit and as much as that is such a huge milestone and we are so proud of her, it doesn’t freak me out. I’m excited for her to learn to drive (yes it does make me nervous as any parent would be). Daniella my “baby” before Samantha, will be attending high school next year, nope not freaked out.

Is it because Thomas is my first? Is it that he is special needs and this is once again a decision and action we *shouldn’t* have to be doing? One more thing on the list that we have to decide for him? Rhetorical questions mind you I don’t want or expect answers. I remember how simple things were in those few short months before the shit hit the fan and we were set off on a quest of “Tell us what’s wrong and how do we fix it?” For the first time ever I wanted to go back in time. I know I couldn’t change anything that is wrong with Thomas, but I could appreciate more the simplicity of that time in our life.

As of right now we are in a holding pattern. There are papers still to be signed and notarized, another appointment with the guide from Surrogate court to help us further and then the actual filing and appearing before a judge. I’m ok with the holding pattern it’s giving me more time to digest this all and it gives my brain a much needed break.

After Breakfast

MenayOLeave a comment

We took Thomas out for breakfast this morning. We hadn’t seen him since his 18th birthday earlier this month. It was so awesome to see him and spend a little time together. What’s even more awesome is how he’s adjusted to living away from us. Thomas honestly looks happy. Happy to be there with people who have more patience and structure than we’ll ever have. It stings though. Stings that we aren’t able to provide what he needs. I used to joke and say one day I would be an old lady living with Thomas…and 6 cats. These days I don’t joke like that anymore because my son will be living away from me. I’ll probably still have the 6 cats though.

I never thought I’d see my son so independent of us. I’m happy for him. He still needs us as his family but he doesn’t need us for his day to day living. The staff at his school now fills that need. I’m ok with that too. It occurred to me while driving home that there were so many times during Thomas’ childhood that I couldn’t wait for him to be older, mainly so we could obtain a proper diagnosis and treatment. We/I was jerked around so badly by so many professionals it made for Thomas’ childhood to be very trying to put it lightly. I’m stunned at how fast the past 18 years have gone by. Stunned. Yet like most mothers I can recall certain memories as if they were literally yesterday. I don’t want to go back in time, once a go ’round was quite enough for me thanks. I remember so many people telling me to enjoy my kids when they were much younger and me scoffing at them. What the hell did they know about my life? I did enjoy them the best I was able to. As a parent of older teens I see how fast time flies but I won’t tell other parents to “enjoy them while they’re little”. It’s not all fun and games, in my opinion anyway.

With my older kids I’ve enjoyed and are still enjoying every stage. Some more than others. These teen years can give anyone a run for their money. Then I have Samantha who’s almost 8 and she gives me a totally different perspective. I have the opportunity to do some things differently but not like night and day parenting. My core parenting style has not changed.

But getting back to Thomas and how things are so very different that I ever imagined they would be. I always saw myself as being his care giver. At least until he entered a group home and I never had an imagined time that would be. It was always “somewhere” in the future but don’t ask me when. I never imagined he would acclimate to this school like he has. There are no tears when we say good bye, no long torturous, please don’t leave goodbyes. There’s like today, “Thomas would you like to hang out a bit after breakfast?” The answer I received? “No…bye!” He had things to do, he spent time with us and breakfast was over. And that’s ok.

Birthdays

MenayOLeave a comment

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.

Identity

MenayO1 Comment

It’s here, summer vacation; the kids are off from school. Part of me really enjoys the lack of a schedule, not getting up early and encouraging certain children to get ready for school on time. There’s the other part of me that misses the routine. That predictable routine. The certain number of almost guaranteed kid free hours. I will admit though I do get bored when everyone is in school, I’m currently searching for a part time job (with no success) to get me out of this house when everyone is in school. I will also admit I’m not thrilled with my current station of stay at home mom. Honestly at this point in time it is not something I would recommend anyone to do. Stay home that is. The loss of identity is overwhelming. I think that is one of my issues right now. I know I’m a wife, a mom of 4 and a Christian; in no particular order. Those are the big 3 identities I can think of right now and all put together they just don’t seem “enough”. As I’ve written before I envy those moms who are at home like me who seem to have it all together.

With Thomas not living here my identity did a major shift. I’m still his mother but I’m also not “Thomas’ mother” the way I was when he lived home. When he entered residential school I gave him to them with a heavy heart. I still mourn that loss of identity. It was like the rug was taken from under me. I wouldn’t change our decision of residential school, it was absolutely the best for Thomas and our family. And two years later it still remains the best decision.

I want a magic ball, the one where you can look into the future and see what path God has put us on and how it all plays out. Which leads to the identity of being a Christian. I firmly believe He makes all things work together for our good. But where’s the script? I know I’m being silly in wanting these things but I know I can’t be alone in wanting to know am I on the road He wants me on? Have I strayed from His path and not known it? I want to please the Lord but have insecurities where there should be none. His grace is sufficient and there should be no “buts”. His way is perfect, I just need to remind myself of that. And if I have strayed He will find a way to lead me back on track. That’s where faith comes in. Faith that God will always be with us and believing and knowing with all your heart that His way is the best way.

Change of pace

MenayOLeave a comment

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’

Aside MenayOLeave a comment

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”.