parenting special needs

Still waiting on the group home…

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I’m told things are “In the hands of the state ” which is mildly amusing. The same hands of the state who were pressuring me to take a placement in Brooklyn this past spring. The same hands told me “things could take a while” when I questioned them why they were moving so fast when Thomas was only 20 years old and still had a year to go of education from the New York State Bd of special education. I now know why they were pressuring me to take the placement at that time. It seems “The State” moves rather slowly.

Don’t get me wrong I’m not looking to move Thomas any quicker than he has to be moved. He’s in a great place getting great care and in a wonderful school with an awesome teacher. The staff all love him. I’m just curious as to when this transition will take place. Will it be a month from now? Two months? Six months?

The other thing that is almost amusing is that my contact from the state, the coordinator who pressured me to take the Brooklyn placement who called me on a regular basis has been silent. My phone has not rung from him in months since it’s been decided that Thomas would be placed here in our borough. I called him yesterday and left a voice mail asking him what if anything was going on. Since it was a Friday I didn’t expect a phone call back. We’ll see if I receive a return call come Monday. If not I’ll simply have to call again.

I’ve also come to the realization that even though I say Thomas’ future is in the hands of the “State”, it’s really in the hands of our Lord. God has the ultimate control over when and where Thomas goes. I’ve submitted my control of this to the Lord and it feels right to acknowledge that he’s had the reigns the whole time anyway. There have been no coincidences in the actions that have taken place to secure Thomas’ placement in this group home. Every action was planned by our God and carried out by Him. It all seems so perfect and as if the universe came together at just the right time… it did just as God planned it to be.

Thats merely a blessing that I can see and talk about now.  There are so many other blessings we know nothing about that are just as carefully planned and executed so perfectly with the perfect outcome. Praise God! His works aren’t always so obvious or in plain sight. Many times we see His works years after. His blessings in disguise.

Praise him.

 

By the Grace of God

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John 9: 2-7

And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him. We must work the works of him who sent me while it is day; night is coming, when no one can work. As long as I am in the world, I am the light of the world.” Having said these things, he spat on the ground and made mud with the saliva. Then he anointed the man’s eyes with the mud …

When my son was younger I often thought I was being punished by God because of the way Thomas was. The horrible tantrums, aggression towards me, the multiple doctors, MRI’s, not being believed by specialists, having a pediatrician who was less than helpful…it was not a good scene. However, I was blessed with a supportive husband, parents and friends. And I can’t forget my wonderfully typical Alyssa who was so young at the time. Nonetheless I though I did something  to anger God and that’s why Thomas was the way he was.

Since then I’ve definitely changed my mind, I was not punished by God. Thomas, we later learned was brain damaged and it wasn’t my fault. I’ve also seen God work to His glory through my son. I’ve seen a change in me, Thomas absolutely changed me and the way I see others parent their children. He’s made me less judgemental.

I’ve seen God’s glory and mercy when Thomas was placed in the top residential school why he was just 8 years old. He was under the care of wonderful professionals who were more than happy to communicate with us. That placement in that school was definitely orchestrated by The Lord.

Thomas’ placement in his current school has God’s fingerprints all over it. The school, the staff and their timing are a true example of professionalism and caring all rolled in one. I never had to worry about Thomas’ safety or whether they were following his IEP.

Now as we wait for Thomas to finalize being transferred to the group home I have no one by The Lord to thank. Again and again He’s showed how His timing is perfect. His way is right and just. His glory has shown so brightly through my son. There is no other way to describe the works I’ve seen. There are no coincidences that work out so perfectly and wonderfully. His will be done.

 

 

Thomas and the Beach

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I’ve been wanting to go to the beach but my child who’s with me most often, Samantha is saying no. I really do like the beach, watching the waves and even better riding the waves as they come in. The last time Samantha and I were at the beach and in the water I was literally tossed head over heels by a giant wave. After I was done regaining my balance I realized I was having fun. But Samantha feels because we’ll soon be on vacation at the beach in a different state we shouldn’t go now. Fine…

So instead of going to the beach I got to reminiscing about previous day trips we used to take. I remember the last time I took Thomas to the beach. It was my bff Jenn and her 2 girls and me and Thomas and my girls. We were having a good time the girls were in the water, Samantha was very young and content to play in the sand. Thomas wanted to look for sea shells but absolutely refused to go in the water. Not even a bribe would change his mind. He was adamant about not going in. Fine so him and I would comb the beach for sea shells while Jenn stayed with Samantha and the girls.

All was fine sitting at our blankets until I looked up and Thomas wasn’t there anymore. I looked left, looked right; up and down the beach. No Thomas. OMG. My only saving grace of not panicking too much was knowing he wouldn’t drown since he hated the water. Jenn stayed with Samantha and Jenn’s older daughter came with me to look. After what seemed like an eternity we still couldn’t find him. Then I started thinking of every horror story of developmentally disabled people being lured away and bad things happening to them. How would I explain this to Tommy? How do I even go home?  I pictured myself camping out at the beach until he was found.

At this point Jenn and I decided to alert the lifeguards maybe they could help find Thomas. I approached one life guard and described Thomas that he was delayed and speech impaired, what he was wearing and that he really didn’t like the water. He was on his radio immediately. Turns out a life guard from all the way down the other side of the beach found him. As I walked the long distance to get him I was so relieved and happy I wanted to skip. I couldn’t believe how far I walked or rather how far Thomas had walked by himself.

Finally we met up. Thomas and the prettiest female lifeguard. I was so happy to see him. Thomas of course blamed me for him getting lost, “Mom…you left me…”  I was like, “Ha!  I didn’t leave you…you were the one who walked away!” It didn’t matter though I was so happy to see him. I teased him that he wanted to hang out with the pretty lifeguard. We walked back to Jenn and the girls.

I can’t describe the terror I felt when Thomas was missing. It was awful. I also can’t describe the joy I felt when we found him. The other times we took him to the beach was during a medication change and he refused to even look for shells and stayed glued to his beach chair with umbrella he wouldn’t have any part of being at the beach. Then he went to live at the residential school. I miss looking for shells with him.

 

And Poof! She’s 10.

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It’s summer so it’s time for yet another one of my kids’ birthdays. The birthdays start in April with Lelly and peak in July (Thomas, Tommy and Alyssa) and end in August with  Samantha. Samantha’s due date was July 31st with her arrival being August 1st.  When I was pregnant with Samantha and she didn’t arrive on the 31st, my sister said she wanted her own birthday month.

I won’t say I can’t believe Samantha is 10. I do believe it. Being the youngest of all my children she’s probably the one I feel most present in her life. My first 3 children were closer in age to each other and with the added stress of undiagnosed Thomas some things are a blur with the older kids. Thankfully they have great memories and love to share things that happened when they were younger. Things that I seriously don’t remember. Not bad memories, just the opposite; happy times or silly things they did and my reaction. I do wonder if it’s the meds or the stress of the past that screws with my memory.

So she’s 10. Twelve  years ago I was getting over 2 miscarriages and wondering if I’d ever have another baby. God was so good.  The biblical meaning of the name Samuel is “God has heard” so it was only fitting that I named her Samantha. God did hear me and answered yes. When I learned we were having another girl I immediately thought, “no big deal we already have experience with Alyssa and Lelly”. Ha! Samantha is not like her sisters at all. She definitely walks to the beat of her own drummer preferring video games to dolls and challenging her teachers and authority figures. Things her sisters would have no part in when they were her age. Samantha was in the principals office when she was in pre-k!  Oh my gosh I wanted to die. What the heck?? Yes Samantha is definitely her own person.

I remember after I gave birth, Thomas was 10 years old. My bff said, “OMG when Samantha is 10, Thomas will be 20!”  That seemed like eons ago. And here we are. Thomas is 20. It’s amazing how fast and excruciatingly slow time can pass all at the same time. I hope to be present for the next 10 years not just for Samantha but for all my kids. They are all amazing people.

It’s a done deal…so far

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My boy is coming back here to live in the group home we’ve looked at that is 15 minutes from our house! Last week the agency sent two workers to Thomas’ school to screen him to make sure he is a good match with the other residents of the group home. I spoke to Thomas’ social worker and she raved about him and his fantastic manners. I was so proud; I then spoke with the owner of the agency (who owns the group home) and his exact words were, “They met Thomas, they fell in love…he’s in” I would love to say I wasn’t surprised but I was. Not surprised that they would fall in love with my son, he has a great personality and is in fact quite likable, but surprised that all in all this process went very smooth.

In fact this whole scenario has God’s fingerprints all over it. If I hadn’t started the bible study group for Mom’s of special needs children and hadn’t asked Trish to be my co-leader; if I hadn’t mentioned to Trish the pressure I was under to submit to Thomas living in a group home in Brooklyn; if Trish never gave me the phone number of the owner of the agency; if I never called the owner and found out he indeed had an opening at a group home here in this borough…Thomas wouldn’t be going where he’s going.

It all starts with the bible study. A way for mom’s of special needs children to get together and glorify God while having camaraderie with other women going through similar life circumstances.  It all starts with God. The way it should be. He is first. It didn’t hurt at all that I had people from my church family praying for us, praying for Thomas to be placed in that group home. Prayer is so powerful. Praying to the God that loves us.

I have to say that I’ve seen God move so plainly and openly when it came to Thomas. I do believe that every prayer I’ve had for Thomas has been answered, not always in the way I wanted but in the way that was best for him and best for my family. His ways are higher than ours and God’s timing is always perfect. This group home placement is an answer to prayer. The timing is perfect and I know God will make way for a place for Thomas in whatever program that will be great for him after he leaves the residential school.

You have to have faith.

Time flying

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I think about how fast time flew by while raising my children, well still raising 2 and will always be a guardian to one. My Lelly is 15 years old.  She was my “baby ” for the five years between her and Samantha. It’s funny because even after I had Lelly and things were so, so frantic with Thomas undiagnosed I didn’t feel “done”. If anyone asked I always answered that I’d have another. Then I would get the side eye glance but I didn’t care. Don’t ask if you don’t want an honest answer, not that it was anyone’s business anyway.

So anyway time flying by…I see and meet so many first time moms and young families at my work. Of course I remember myself in their shoes and I didn’t believe anyone who said “enjoy them… time goes by really fast”.  I distinctly remember when Thomas a baby and I wanted time to stop. I enjoyed him as a baby so much maybe because he was our first? Probably.  Before the crap hit the fan with neurologist visits, moulding helmet fittings, MRI’s, early intervention, physical therapy, etc… Our life with Thomas was incredibly sweet. He was a great baby, he smiled a lot, napped on schedule and was all around an easy, happy baby.  I knew I wanted more kids after him.

So here we are 20 years and 3 more kids later. The magic of being that young family long gone. And that’s ok. I do like our life now. My husband and I communicate better now than we did in our younger years, my kids are for the most part independent; Samantha being almost 10 is busting out to be as independent as we will let her. Now I feel totally “done” and I’m enjoying this stage of of life. I have no desire to go back to the days when my kids were young. Being on that roller coaster once was enough.  Being so “done” makes me enjoy my job all the more. I get to see these little babies, sometimes hold them, most times coo and talk to them and enjoy toothless smiles and then give them back to their parents or wave goodbye after we’re finished.

I like the young families I get to visit with. I do tell them to watch out because time does go so fast. They nod as I nodded way back then not fully understanding that time will fly and fly fast. That that baby they’re holding will grow up in what seems like it’s taking forever some days and other days your head is spinning with the quickness of it all. There have been a few times at work I’ll stumble upon a special needs mom and we immediately bond. That is by far the coolest I’ve ever experienced. I know for that moment I’m in the midst of the planning that God made possible.

 

 

 

 

 

My own little world

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We celebrated Alyssa’s birthday the other night by going out to dinner at a local family owned Italian restaurant. After dinner we walked the boardwalk of one of our local beaches. It was Tommy and I, the girls and Alyssa’s boyfriend, Sam. We had such a great time and it occurred to me that I always wanted our family to be almost it’s own entity. Our own little universe and world. The other night I realized I’ve got what I always wanted, or rather I’ve always had what I always wanted. My world begins and ends with my family. This is the way it should be.

I think back to when I was younger I didn’t recognize this wonderful group of people as being my whole world. I felt claustrophobic in dealing with Thomas’ issues and the way he was. I wished for a more “normal” family/world. I was envious of other families and wondered why was mine the way it was?  I never looked to change the girls, they were wonderfully typical (by girls I refer to Alyssa and Lelly, this was before Samantha was introduced to our world). I was fortunate that I found a wonderful online support system to help me with Thomas. And I’m even more fortunate that I’ve been able to meet just about every single person of that support system in person. Most recently, I had lunch in Manhattan with my dear friend Wendy who was in town from California.

I believe our “worlds” are fluid. People moving in and out. Even family members choose to drift out much to our disappointment. However, I don’t often believe the fluidity to be intentional. People move in to our lives/worlds for an amount of time and they move on. The only constant in our own universe consists of the core and we all know who our core are. The other night on the boardwalk I felt like we were our own bubble of family. Minus Thomas. The times I feel the most complete as a mini universe is when we’re all together. And I look forward to him moving to this group home so we can be complete more of the time.

 

It’s getting real…

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Yesterday I received a phone call from the agency that owns the group home that we are interested in for Thomas. They wanted to visit him at his school and also have Thomas visit the group home himself to ensure he is a good match. My heart stopped for a minute. Then I realized I’m nervous for him. This will be a big transition. And I have to say this is the first time I’ve been anxious for Thomas to make such a big change. All the other times he’s had to be living in residential we were in crisis mode. Thomas wasn’t safe to be around. Today he’s a different person, the residential school he’s been in has literally been a Godsend; an answer to prayer for him and us. The Lord made it happen for this school to be “the one” for our family.

I’ve written about this before but when we were waiting for Thomas to be admitted to residential 4 years ago, this school was the only one who called me back. I had been calling all the schools on the “list” where his packet was sent by the Board of Ed. and I was discouraged because either no one was calling me back or the ones that did call me back weren’t appropriate for my son. Things were not pleasant here at home, and Thomas was in and out of the psych hospital. Finally one morning after I dropped Samantha at school and went for a walk I came home to the phone ringing. I didn’t want to answer it but forced myself to. It was the school that was to become Thomas’ home for the next 4 years. Turns out they were looking at IQ scores from years ago and they thought Thomas was too high functioning for them. I quickly corrected their error and they were then reviewing the most current evaluations for Thomas. Long story short, Tommy and I visited the school and we loved it. After a couple of bumps in the road Thomas was admitted and we’ve all been happy with Thomas there for the past 4 years. The staff has been wonderful and attentive, his teacher (the same one since day one) has gone out of his way to encourage only the best from my son.

So now the transition begins. I’m still in awe at how the Lord works. He arranged for Thomas to be placed where he is now and His fingerprints are all over this group home placement. I just happened to mention to my bible study co leader that I was being pressured to accept group home placement in other boroughs. Trish then gave me the phone number of the group home agency, I explained to him our situation and the next thing I knew Tommy and I were visiting a group home 10 minutes from our house! When the Lord has a plan there is nothing that will stand in His way. And the way He orchestrates events is nothing short of mind blowing.

So now things are getting real. There are meetings to be had concerning Thomas’ school placement for his last year of being educated by the Board of Ed. I’m sure they’ll be more than happy to enroll and pay for him to attend public school as opposed to residential school. Things won’t happen overnight, but I’m sure I’ll be surprised at how fast and quick time will pass and I’ll pray for Thomas to make a smooth transition and be as resilient as ever when he moves from one residence to another.

And just like that…

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And just like that today my boy turns 20. What’s sweet is that I have friends who remember me pregnant and remember my son when he was born. My husband and I have a good friend who is a big guy, we’re talking 6’3″ approximately and he’s no skinny drink of water. When we brought Thomas home from the hospital and Thomas would sit in that bouncy chair, our friend would pick up the whole chair with Thomas in it to see him. I’m guessing he wasn’t comfortable holding a small baby. It was so funny and the memory still  makes me smile.

And just like that my son was this happy, smiley baby. I love to think back and remember what he was like before the proverbial crap hit the fan. Before all the doctors and specialists, trips to Manhattan, MRI, CAT scan…When Thomas  and Tommy and I were our own little family. Optimistic and happy and close and together. Because Thomas was such a good baby we took him everywhere. I remember my inlaws were dying to babysit but I wouldn’t leave him, I never felt I had to. Thomas made me grow up. He made me a mom and me made me an advocate. He made me who I am today.

And just like that my son grew up. He went from baby to toddler to little boy, and so on. He wasn’t an easy child to parent but we did the best we could with what we knew. Tommy and I weren’t perfect I’ll never say we were.

And just like that Thomas is 20. He’s still easy going in his own way and when he smiles he makes you feel like a million bucks. He’s still teaching me ways to grow and I’m still learning.

Graduation Today!

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My Alyssa is graduating high school today. Today. She’s thisclose to turning 18 years old. I don’t wonder where the time went I was there I know how fast it all flew by. It wasn’t always flying by so fast there were days of excruciating slowness but I don’t remember them in detail so much. Much like labor pains those memories fade.

Alyssa is much like an oldest child rather than 2nd born. She was our first girl and our first typical child. I remember her as an infant (such a pretty baby even as a newborn), then toddler. In Pre-K she was the pretty little girl with long curls who clung to her mother’s leg and cried and cried. Grammar school graduation was sweet, Junior high grad was even sweeter. High school years that went so fast I stand in amazement at the woman she’s become in the past 4 years.

I feel incredibly blessed this morning. Blessed that my God has given me the privilege to raise this baby He gifted me with. I sit here holding back proud tears and remember all the times she’s made me proud, all the times she gave me the honor of being her mother. Even the times she made me want to rip my hair out.  In gifting her to me, God gave me the opportunity to parent a very typical, very beautiful, very unique child.

While raising Thomas I often referred to the poem “Welcome to Holland” by Emily Pearl Kingsly:  (http://www.our-kids.org/archives/Holland.html). There were too many times to mention that I mourned the fact that I didn’t sign up to be a special needs mom. That no, I did NOT want to be in Holland. Alyssa gave me the opportunity to visit “Italy”; the typical world, the world I thought I signed up for when I first became a mother. And for that I can never thank her enough. I don’t even know if she’d understand why I would be thanking her.

So I wish my girl all the best this world has to offer. She loves God and she loves me. What more could I ask for?