This Little Miggy Stayed Home: Special Needs Spotlight || W

Friday, April 20, 2018

Special Needs Spotlight || W



Miggy: Tia welcome. So glad to have you talking about your family and especially your son W. Can you take me back to the day W was diagnosed? Was it before birth, shortly after birth, or sometime after that? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Tia: Diagnosing W was a long process. When he went in for his 6 month well check his pediatrician told me that as soon as we got to our new home (we were about to move from Kentucky to Nevada) I should make an appointment right away so they could check his core strength. He was still having a hard time supporting himself. Being as I already had two other kids I noticed he was weaker, but I just assumed it was because he was the third child and always in his car seat or swing or bouncer. But I took her advice and when we finally got settled in and I found a doctor I made an appointment, he was around 9 months. By this point I was worried too because he still wasn't rolling over. My first appointment was scary. I told the doctor what his former pediatrician had said about his weak core and then I added my own concerns that he didn't seem to be using his legs much. You know how most babies bounce up and down when you stand them up on your lap. He never did. And they had very low tone (at the time I didn't really know what that meant) He looked him over, asked lots of questions and then ordered some further testing. I asked him to be honest with me, if he thought it was something serious. He was a little too honest too quick and threw out some pretty big things like, Muscular Dystrophy or Cerebral Palsy.

The next doctors appointment he had lost weight so they did a bunch more testing and I received a phone call telling me they found what looked like Pelger Huet Cells and that may baby might have cancer. Long story short, he did not have cancer, we did every test known to man and found nothing. He started speech therapy, physical therapy 3 times a week and occupational therapy to try to catch him up to where he should be for his age. At 14 months he could not roll over, come to sitting on his own, crawl, walk, nothing. He could sit up slouched over and that's about it. He continued on those and by 19 months because of the most amazing angel of a physical therapist he started walking. His neurologist at that point said he was making enough progress that he thought we could continue on with the therapies and stop testing. Hallelujah, he had been to orthopedic doctors, neurologists, a developmental pediatrician. His own pediatrician pre diagnosed him with 50 billion things that scared me to death. In the end he told me he suspected autism. I was just like, Oh OK. Not believing anything he said anymore, but having to go to him because we are air force. I was so done putting him through the ringer sitting at doctor after doctor just to find that everything looked good on paper. The neurologist did however say at 3 years if he still was not caught up he would recommend genetic testing. So we continued all his therapies until he was 3 and although with speech and a lot of movements he had caught up I still felt in my gut there was something.

Socially he was off. The day I took him to my older daughters field trip and he had many of the same reactions that a little girl with down syndrome in my daughters class had. It was then that I knew I needed to do the genetic testing. At his 3 year well check he ordered the genetic testing. At this point we were in a new state with a new doctor, much more laid back, so when he said it wouldn't be a bad idea, I agreed. On September 11th I got a phone call from the nurse at the geneticist's office. She asked me if it was a good time to talk. All my kids were home, 4 now, W isn't the baby anymore. But I knew that question meant I have bad news. So I sat down at the kitchen table and said yes. She told me W's testing came back and that he had 47XXY. My heart sunk, my very first thought in complete honesty was, "Is he a girl? Part girl? What does this mean?" All I said was OK. She told me not to look it up online and scheduled an appointment the following Monday to talk with the doctor. I hung up the phone and all my kids were looking at me. My oldest two knew something was wrong. But I honestly didn't know what to do or what to say. W had been asking me all day to use the side walk chalk I had bought him earlier, and I kept putting him off. We live in Arizona and it was 100 degrees outside. I sat there wanting to cry but not wanting my kids to see me so I said "Come on guys, we're going outside to use the chalk."

The following months were hard, it was all I could think about. I cried all the time. I felt myself falling into a depression. I would drop the kids off at school and preschool. Put the baby down for a nap and read stuff about it and cry. The geneticist advised me not to tell anyone about it, because it isn't well understood and people might treat W differently. But that was horrible for me, because I needed to talk about it. I needed to work through my emotions and I needed support from friends. So I did tell a few people I felt safe with. It got easier to talk about it without crying. I finally had to snap out of it when I was tucking W in one night and I laughed at something and he said, “Mommy today you are happy, yesterday you were sad.” I knew I needed to find a way to be happy for him. And not worry so much about the future and the unknown.

Now I am much better, he is still W and I wouldn’t change a thing about him. As I said my first thought was if he is part girl, but the geneticists reassured me, “If he has a Y he is boy, boy, boy.” And recently W likes to tell me “Mama I’m a boy” so he is indeed a boy. I just have to not think too much about the future and know that people will come into his life that will see him as I do. Teenage years are hard for everyone but now that we know we can try to make them a little more “normal” for him.
Miggy: I have never heard of 47XXY, could you please educate us about W’s diagnosis and explain how his needs affect your day-to-day life?

Tia:  The syndrome is called Klinefelter Syndrome aka 47XXY. It is possible to have 47XYY or even 49XXXXY and so on, but the more sex chromosomes your born with the more complicated it gets and you are more likely to not be able to learn how to walk and talk and function normally, is my understanding. Mothers have been told in the past from their OB’s to abort their baby because they will be born a monster. W is living proof that that is ridiculously not true! Right now W is pretty “normal” and he is a great kid! Plays by himself, is super sweet to his baby sister. He has a hard time in social situations and large crowds, but we are working on that. His development was delayed and we’ve worked hard with physical therapists and he has learned to use his body like other kids. He had to be taught to do what most kids just learn on their own. Socially he is very introverted. I get strangers telling me a lot that he doesn’t look very happy. He is though, he just lets certain people in and he doesn’t always have a smile on his face but he also rarely throws tantrums or cries. Our battles will come as he gets older and doesn’t go through puberty like other boys. He will most likely develop breast tissue and have wider hips. He won’t produce testosterone and will have to have injections. We have yet to educate ourselves much on that since he is only 4. He will not be able to have biological children. He also will most likely have a lower IQ and possibly struggle with emotional/mental health. Potty training was hard because he had an actual fear of the toilet and the bathroom and would not go into a bathroom. But we overcame that, I just had to try to understand his fear and then help him overcome it.

Miggy: What are the biggest worries you face for W? On the flip side, what are your hopes and dreams for him?

Tia: I worry that other people won’t see what I see when I look at W, especially as he gets older and possibly develops feminine features. I worry what kids will say to him and how that will affect the way he feels about himself. I worry that he will develop mental and emotional issues that I won’t be able to help him overcome. I worry how not being able to have babies will affect him and the woman he falls in love with and wants to marry.

But I also see just how amazing he is and I hope the world gets to experience that. He really is the best, sweetest, most considerate 4 year old ever. And I know he will do great things. I know great people will come into his life that will love him.


Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Tia: Recently we started giving our kids X’s when they talked back or kept asking for the same thing over and over again. At dinner one day we were talking about how many X’s everyone had and it dawned on me that maybe I should have used check marks. I didn’t want X’s to be viewed as a bad thing. So I said guys X’s aren’t always bad. Remember how W was born with an extra X that I think gave him extra special powers. W said, “Mommy, I don’t have powers.” My husband said, “Are you sure? Can you shoot lasers from your eyes?” W, with a super serious face, said, “No.” But then he shut his eyes and opened them really fast just to make sure. We all busted up laughing. I told him that’s your super power--you make me laugh and smile like no one else can.


Miggy: How can people best approach or respond to your son? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Tia: Sometimes he will throw himself down on the floor and hide when he is in public and uncomfortable for some reason. When I have my 1 year old with me or all 4 kids with me it is hard sometimes to pick him up and figure out what’s wrong. I wish sometimes there were more people that weren’t afraid to help out in a situation like that and didn’t just look at him as a kid having a fit and me being a bad mom or having my hands too full. We all want to hide from things sometimes. W just actually does it and I would love to see more kind people who aren’t in a rush who would be willing to help instead of awkwardly walking by saying, “Oh, it looks like you have your hands full,” or judging me with their eyes, as if to say people with kids shouldn’t be at a store, and if they are they should all behave perfectly.


Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your other children and their relationship to W?

Tia: I remember my oldest son feeling like W didn’t like him because he never hugged him or gave him much physical touch. He didn’t really react much to him coming home from school. I talked with him and told him that he might have to try harder to have that relationship with W and if it didn’t come not to take it personally that W just has a different way of showing his love. Fast forward 3 years and they are good buddies now. He still tends to show more love and attention to his sister Mia and sometimes Everett gets his feelings hurt but he understands. Mia my 7 year old and W have a very special relationship and he has always been close to her. She used to lay on my belly and sing to him and he would move to her. They play so good together and he adores her. When his baby sister Eloise was born I knew right away that she was going to be his biggest cheerleader and I know that she will stand up for her big brother and love him fiercely through his harder teenage years. I can’t wait to see their relationship continue to develop.


Miggy: Are there some ideas you had about having a child with special needs that have since changed?

Tia: Yes I don’t really see him as a child with special needs I just see him as W and the hard part comes when you know the world might not see him as you do. Also doctors appointments and therapy is A LOT of extra work and my hat goes off to all parents who have to do those things on top of all the other parent things.
Miggy: If you could say something to the mom who just starting on this journey of special needs, what would you say? What would you say to yourself if you could go back in time?

Tia: First of all I would say keep him!!! (50% of moms abort their fetus when they find out they have 47XXY or a form of it.) He will be your greatest blessing and one of the easiest babies you will ever raise. I used to say before his diagnosis that if I knew all my babies would be like W I’d have 10. I would still say that knowing he really is the best. The week that I found out what he had I probably told him a million times that I loved him. Even though he didn’t know what was going on I needed him to know I loved him no matter what and he was still my sweet boy.


Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?

Tia: I’ve learned that he was exactly what I needed as a mom. We’ve had challenges and worries and heartbreak, but ever since he was a baby he has calmed me. Being by him, just me and him calms me and centers me in a way that nothing or nobody else can. He is special and it is a privilege to be his mommy.

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Tia, first you have a beautiful family. Second, this was so wonderful, educational and lovely to read. The love you have for W is clear and you advocate for him fiercely. I think it's important for people to know that getting a diagnosis and then the help (therapy, the right doctors, etc) can take years. It is not always, or even usually, an instant thing. Even with Lamp, whose differences were clear and obvious, we didn't find a doctor who really understood limb differences until she was almost 3. So if you think it's frustrating to go the mechanic and not have them be able to figure out what's wrong with your car, imagine how difficult it can be to have doctor after doctor not know what is "wrong" with your child. I also love when you said the week you received his official diagnosis you told him a million times that you loved him because you wanted him to always know that, no matter what. Thanks again for sharing your story and please give your sweet W a hug from me. 

If you or someone you know would like to participate in the Special Needs Spotlight please email me, or have them email me, at thislittlemiggy at gmail dot com. 

I think we might finally have a few warm days in a row here! Have a great weekend!
XO, 
Miggy

6 comments:

  1. What a little sweetheart and all four kids are just adorable. Her comment about welcoming help from others when her hands are full resonated with me because I always stick my nose in to do just that when a Mommy is struggling. I think a lot of people are afraid that they will be intruding, but it definitely works most of the time. My "technique" is to just talk with the children, be goofy, and once everyone is smiling, things seem to calm down. I've never had a Mom tell me to mind my own business!

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  2. Lovely profile! Just one thing: In a few places, you have W's full first name instead of just W. Since I'm assuming that you used W at parental request, you might want to re-edit. Just sayin'.

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    1. Yes! I took care of that. Thx.

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  3. What a beautiful family! The photo
    Is beyond adorable. You must be so proud of all of them!!

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