The depth

Before you became a parent do you really think you could have imagined how much you would love your child? If that love could somehow be measured and tangible would you have believed? I don't know if I would way back when, in the days before I was a parent and knew everything.

A new frontier...for me at least

I made an appointment with my doctor to discuss medication options for my depression. I was getting angry at the depression. This was NOT normal and I'd had enough. Enough of the crying, the mental games and torture I was doing to myself, putting myself down as if I were the most worthless piece of crap in the universe.

I really like this psychiatrist. He listened to me. That in of itself is priceless. Oddly (or not so oddly) enough he is also my son's current psychiatrist. Our first visit consisted of him asking me a million and one questions and I was fine with that. After that visit I agreed to an anti anxiety medicine but after using that a couple of weeks I realized the depression was not "going away" and I realized I am not helpless, I can ask for help, ask a respected, trusted professional for help. That realization was empowering, I started to get a little bit of that feeling of "me" back, it felt good.

Typos

I am apologizing for my typographical and grammatical errors. I try to proofread but many errors seem to get past and then published. I have attempted to edit my posts but...whenever I've tried that, the whole post disappears! No, I'm not kidding. Words fail to describe the frustration of that scenario.

Writing

I wasn't going to write today, I really wasn't I was afraid to. Afraid of what I have no idea. My anxiety and depression have been kicking my ass ( as well as those who live with me and love me). But, I refuse to let "it" win at least about writing. Depression really does hurt, just like the commercials say.

I never continued on with our journey in getting Thomas diagnosed.

By the time Thomas was 5 yrs old we had moved back to New York (after a 15 month venture in living in the Great Garden State of New Jersey). He would continue to have terrible tantrums, terrible. Mostly directed at me, hitting me, throwing things at me. Our second child, our daughter A was 3 yrs old and they had kind of usual sibling spats/fighting. I have to say A held her own, she still does. Even at that age Thomas and A were loyal to each others.

I found a mental health center for children, pretty much the only game in town, when Thomas was 5 yrs old. We started with a wonderful therapist/social worker named Darlene. She was wonderful in that she listened to me. I feel like the worst part of those years with Thomas was that NO ONE would listen to me. Darlene believed me, and even when Thomas actually did act out and show his behaviors; yes she had this shocked look on her face but she would always say, "I know I look surprised and I do believe you, but to actually see him do x, y or z...wow...". Thomas had this rediculously frustrating manner of showing himself to be wonderfully behaved in front of just about everybody outside our family. Behind closed doors was a completely different story. And if we had people over, in the house he would look around and ensure they weren't looking when he hit me.

In conjunction with Darlene we saw a psychiatrist at this center. She was nice enough and saw some of the behaviors my husband and I described. She wanted to rule in ADHD/add. Fine. We trialed a stimulant drug, very low dose. At one small dose Thomas cried all day. Yes ALL DAY. Even after the drug supposeldly wore off he cried and cried. It was horrible. I felt terrible for him. It was a Saturday. I figured it would be more telling to try medication on the weekend rather than give it to him and send him off to school and reley on the teacher who wasn't seeing what he was doing at home anyway.

I called the dr on call after Thomas wouldnt stop crying and we agreed to not give him more. Some professionals told e in years past that we should have continued the medication trial. That it was normal I guess for him to cry like that. I don't know. I'll never know. All I do know is that in my "mother opinion" it was not normal and no I wasn't giving my child something that made him react in that way.

Constant state of motion

I'm diagnosed with having an anxiety issue. I'm thinking the majority of us have issues with anxiety at some time or another, I know I have. I also know for me, this time its different. In my experience, when the anxiety comes over, it pretty much takes over. It's horrible and sometimes paralyzing and/or panic causing. I want to get out of my own skin if I could.

After starting therapy (loooooong overdue, very long) I also made an appointment with a psychiatrist to discuss medication options. I did not want to go on this way without at least learning what options would be suggested. I reluctantly agreed to begin taking an anti anxiety medication. This was a HUGE step for me. I barely take Tylenol or Benadryl unless absolutely necessary.

I'm not ashamed or proud of deciding to take medication. It is what is it at this time in my life. We are in the process of chosing a residential school for our son. That in of itself is enough to produce anxiety, I'm also processing the past 15 yrs of my life as Thomas' mother. My emotions that haven't been faced but swept under or emotions I was so, so certain I had well under control. I was wrong. They are all in my face, now.

One of my coping mechanisms aside from thrift shopping has been maintaining a constant state of motion. Nope, sittings not a good thing. Sitting allows for my mind to go places I'd rather it not go. My self worth is examined, this worth that is not measured by a paycheck or anything "tangible" since I am a SAHM. The whole SAHM issue is something else my mind likes to berate as well.

With 4 kids there is always something to do. Always laundry, cleaning, sweeping, folding, you name it. One would think my house would be spotless due to my constant state of motion. Hardly. As soon as something is cleaned or vacuumed there is someone right there to undo what I did. It's an interesting situation I assure you.

Prayer

While I was thinking of writing this entry, I was thinking I should cover the "Jersey year" of our life and talk about the fifteen months we spent as residents of the Great Garden State (aka: New Jersey). But instead I feel compelled to write about God.

I know I've been and probably still am to some extent, angry at God. I used to feel justified, that I "should" be angry at him. I also feel many times terribly guilty about my anger. However most recently I feel the way a child is angry at her parent for not getting her way. I mean seriously isn't that what I'm really all up in arms pissy about? I didn't get "my" way. My perfect little picture of raising children and keeping a clean house all while returning to work when everyone became old enough to go to school. No, instead I was handed a beautiful boy who has challenged me more than I ever thought a mother should be challenged. Add also the challenges of 3 wonderfully typical young ladies. Do I get angry because I was gifted these 3 lovely, lovely girls? No, of course not why should I be? They are what everyone expects when you become a parent. Aren't they what we feel God should be giving you?

I praise God, I accept his son Jesus as my Savior. I am a sinner and so very far from perfect. I praise Him, worship Him and pray. I pray for just about everything and give thanks for the many blessings I know I do not "deserve". Yet I feel/felt at some point in my life that I "deserved" to have a non special needs son. That I didn't deserve to walk this path.

In the past when I was feeling anger at God because of the path my life has taken. This journey I've not chosen and probably never would have chosen if given the choice. When the anger set in I would show my anger to God. I would refuse to pray and like a child, ignore Him or ignore the gratefulness I was feeling towards my many blessings and gifts that are indeed handed to me from Him. I would not acknowledge Him.

These days I notice when the anger comes around, I will not ignore Him. I cannot. I praise Him. I pray and give thanks. I am blessed and not in the, "oh I wouldn't change a thing about my special needs child!" I have been blessed many times over. Yes I was handed this gift of boy, yes he has made me learn things about myself I would NEVER have learned if he were not the way he is. If I were given the miraculous opportunity to change him, to make him "normal" would I have to change myself as well? These days I firmly believe God has a plan. Do I have to like his plan? No I don't believe I do at first impression. But like a child I must follow what the Father already has determined. I can either kick and tantrum or look for the provisions he has set out as blessings to guide and lead and trust that He is not going to do anything to disgrace His name. That He will provide as He has from the beginning when I was too busy knowing better than Him.

Backing up a bit

I haven't given a proper introduction post. In the "about me" section of my blog I mention I am a married SAHM (stay at home mom) for those unfamiliar with abbreviations. I'm soon to be 42 years old and married to Tommy my high school sweetheart. Yes we did meet in high school. Actually Tommy was sitting on the stoop/stairs/entrance of this little corner store. My best friend and I went to this corner store so she could meet up with her boyfriend. The boyfriend and Tommy played in a band together. Tommy was the drummer. Best friend and the boyfriend were talking and I noticed Tommy burning off his shoelaces from his sneakers. They were all tied together in knots and he wanted to change them but couldn't get them off because of all the knots. I asked him, "Do you always burn off your shoelaces?". I remember Tommy looking up at me and our eyes met. Oh my gosh he had the nicest eyes. Green. I don't remember what he said exactly in reply I couldn't get past his eyes. We were 15 years old. Turns out Tommy was starting the same high school I was already attending. We became fast friends and of course that turned into one of those, "Yes I do LIKE him but what if it doesn't work out?? Then we won't even be friends anymore!!". By age 17 we were an official couple and went through the rediculous teenage angst drama. Breakups, tears, making up, more dramatic fights and arguments, etc... I mean what teenage life would be complete without it? I am thankful we came out the other side together. While I was in nursing school Tommy proposed. At Rockerfellar Center in front of "The Tree”. We planned to marry after I finished college and we did just that. We were 25 years old, educated, employed well, owned new vehicles and had a lovely 2 bedroom apartment in a nice neighborhood. One of Tommy's best friends, Steve lived in apartment upstairs. It was an incredible time in our lives. The week before our wedding I found out I was pregnant. We told only my sister and Tommy's oldest brother. I didn't want anyone to know and be looking at me all odd or be asked, " Are you ok??" a bazillion times at my wedding that I had planned for 2 years. We were newlyweds in November 1995, by July 1996 we were parents.

The thrill of the Thrift

So today Thomas had an appointment in Manhattan. A psychiatrist appointment. I didn't mention in my first post that these days Thomas also carries the diagnosis of bipolar disorder. He received that diagnosis shortly before his 6th birthday. His current psychiatrist's office is right across the street from a Goodwill store. It's amusing actually, about half a city block down from the Goodwill store is a very high end resale shop. Thomas and I have visited that shop a few times. I love to just look and feel the clothes, look at and touch the expensive handbags. I don't even necessarily want to buy anything there, I truly get a kick out of looking. When Thomas is having a good day he loves to go along and he is the worst enabler out there. "Mom! You gonna buy that?? Ooh Mom, that's NICE!" I'll explain, "No Tom, I'm just looking, I don't HAVE to buy something, I just want to look". He's really a sweet companion to have along, when he's having a good day. So anyway, today we hit the Goodwill. The expensive resale shop was closed but that's ok I really didnt want to go there anyway. These days my thrift shopping is true therapy. I can't explain that my mind clears when I enter the store. I focus whatever clothing I'm on the hunt for that day. The people working there are usually not interested in small talk (except lately at my local Salvation Army, one employee is quite chatty and I am not in a chatty mood I'm polite but don't encourage conversation). Most times the other customers aren't interested in chatting either. So...this is the perfect mini/two hour "vacation" or stress diversion. Yesterday I visited the local Salvation Army but didn't find anything that *had* to come home with me. Today however at this lovely Goodwill store I scored a pair of Hudson jeans that were new with tags! Score! I did an online search and they were on "sale" at one site for $112.00. I paid $12.99. Sweet. And they fit awesome.

What to write/how to write?

I've been struggling lately reading blogs of parents with special needs children. I've found I'm frustrated too many times. Parents can be very focused on the specific diagnosis. I don't know maybe because we struggled for years (literally) to have Thomas properly diagnosed, I'm not all that focused on the "what" at this point in our lives. Thomas has many diagnosis'. Many. As a result he does not "fit" in any one of his diagnosis. So as his mother I do not "fit" in any one parent support group.

When Thomas was born I decided on a pediatrician that was part of this huge practice here. I figured "large" practice with many physicians and staff, how could we go wrong? Ha! Large practice with many physicians equaled in our case impersonal care. I could have walked in to our appointments with any baby of any race/color/background and they all could have asked, "...so how is {ruffling through chart} Thomas today?" When Thomas was 3 months old I noticed he would favor laying on one side of his head. Since I was instructed to only lay him on his back to sleep, he would only sleep with his head favoring the right side. The pediatrician told me that babies were used to being squished in the womb and this was "normal". I seriously did not know any better, none of my friends had babies so I was like "Ok" and went on my merry way. My mom tried to make like a donut for Thomas to sleep on as his head was beginning to get flat on one side. But as a new mother I was terrified for him to sleep on it for fear he would suffocate.

When Thomas was about 5 months old his head was very flattened on the right side and I brought him in for a well visit. This time the pediatrician just about flipped out over the shape of his head. I didn't know what to think. I really didn't. The other guys in the practice we saw didn't seem to bat an eye and we all know how often you're at the pediatrician's office with a young baby. This doctor immediately ordered a CAT scan. My husband and I were terrified. It was also recommended we see a neurologist. The CAT scan was done as well as a skull series/x-rays. Except for his head being terribly misshaped Thomas was "fine". We found a neurologist we didn't have to wait 3 months for an appointment and she diagnosed torticollis, which is the reason Thomas would only lay on one side of his head (for more info: http://www.torticolliskids.org/ ) She led us to a wonderful neurosurgeon in Manhattan at NYU who prescribed a moulding helmet to reshape his head and told us to apply for Early Intervention for physical therapy. Through Early Intervention we had Thomas also screened for speech impairment as he was not talking or babbling appropriately by 18 months. Needless to say we left that pediatrician group and we were referred by a very trusted friend to a doctor who had an established practice on her own. No other partners. It seemed perfect.

By the time Thomas was 3 yrs old he was having horrible tantrums and fits. He would hit me often. By often I mean daily and usually without any warning or provocation. When Thomas was 2yrs old I gave birth to our first daughter, A. I'll never forget having A in her car seat/carrier and Thomas grabbed the cordless phone and threw it at her. I literally dove in front of the phone to protect her. My eyebrow was split and Thomas was beside himself with how much the cut bled. I probably needed a stitch or 2 but there was no way I was taking 2 small children to the ER. He would have these lengthy tantrums where he would grab things and throw them. Wooden blocks were not allowed in our house. Neither were any type of small plastic balls (He threw one of those type toys at me and I had a black eye that was so purple my husband refused to be out in public with me). To make matters worse Thomas had multiple ear infections. Thomas' pediatrician at the time prescribed some sort of decongestant that only made the tantrums worse (if possible). The pediatrician didn't believe me that this could happen as it wasn't a side effect she was familiar with. (ummmm, ok...I'll talk more about this pediatrician~believe me). I insisted we try something else after Thomas broke a window in one of our french doors. It was his in home speech therapist who insisted to me that this medication was causing the tantrums to worsen.

I tried to get help, I told the pediatrician about the tantrums and hitting. In a nutshell I was patted on the head and told he was frustrated due to being so speech delayed. Or that the ear infections were causing the speech issues which was causing the behavior issues and after he had tubes put in his ears things would improve. Uh, huh.

When Thomas was 3 I was told, after lengthy testing that he was "mentally retarded" or MR as the psychologist liked to shorten it to. I was appalled. No he was NOT! Nope. How could he be?? My son was a wanted pregnancy, I did everything "right" when I was pregnant with him, he was breastfed, etc...We were married, high school sweethearts, I worked as an RN~I was educated for crying out loud. How could our child be retarded??

I was so angry I insisted the physician write an addendum to his written report that I vehemently disagree with his findings. Yes I did.

So there you go, major diagnosis number 1: Mental retardation and we can't forget Speech Impaired.