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.

 

Thomas and the Group Home and God.

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Thomas called last night. He’s super excited and nervous about moving to the group home. The progress of which is at a stand still while we wait for the State to make its next move. I’m ok with the wait. Thomas is in a great place with people who genuinely care for him. It’s not like we have to move him now or else…

While on the phone with him I couldn’t help but feel guilty. It’s the same guilt that has plagued me since he went to live at the residential school he’s at now. That I couldn’t serve all Thomas’ needs. I actually though this morning as I reminisced about his life, “Why did God give him to me knowing I couldn’t provide everything he needs?” As usual God’s ways are higher than ours and one day I’ll know His way regarding my son. Until then I wonder. I wonder if He gave me Thomas because He knew I’d try so hard to help him? Did He know I would go beyond our scope as a family to get Thomas what he needed even if it disrupted Tommy and my vision of what an intact family looked like? That we would allow Thomas to learn from people while living somewhere else?  These are questions I ask rhetorically. I know with all my being that The Lord knows everything. As difficult as it was raising Thomas, God was there every step of the way. Orchestrating and overseeing it all. Nothing was a surprise to Him as it was to us.

I wish I didn’t feel the guilt. I supposed I’ll always feel some measure of guilt that Thomas’ needs go beyond what I can reasonably provide. I think back to all the doctors and specialists. Those who helped and those who were less than helpful (understatement). The Lord orchestrated every move; every appointment. He was faithful. And He’ll orchestrate my son’s future of this I am certain.

Earlier I said we are waiting for the State to make its next move but in reality God is in charge and it is His love and mercy that will decide what the next move is for Thomas. It always has been God.

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.

 

 

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.

Church and a Bible Study

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I haven’t been to church in about 4 weeks. And I won’t be able to attend my church this Sunday due to a family obligation. I miss my church. I miss hearing the preaching of the Gospel. It’s funny because years ago I never gave it a second thought that I didn’t go to church. I used to look at people sideways who made church a priority in their lives. Now I am one of “those” people.

I’ve been enjoying the small group I’m co-leading. Although I have to admit the way the bible study book we’ve been using  “Unlocking the Treasure: A Bible Study for Moms Entrusted With Special Needs Children” by Bev Rooseboom, sometimes brings me back to a time in my life with Thomas that wasn’t all that rosy. When I was looked at like there was something wrong with me and not him. Not that I wanted anything wrong with Thomas I just wanted someone to see what I saw and get him and us the help we so desperately needed.  The book also makes me realize just how loved I am by God and how awesome that love is.

The women in the group have truly blessed me with their presence and experiences. We have one woman who attends accompanied by her neighbor. The neighbor is an active member of my church. She doesn’t have a special needs child but her perspective of the Lord and surrendering to Him and trusting Him is something that I thoroughly enjoy.  We are blessed to have her attend the study even though she doesn’t have experience with special needs children, she has valuable experience walking with the Lord and we’re fortunate that she loves to share that part of her life with us and she does so with such joy that it’s infectious. Everyone should have a “Jan” in their life or at least in their bible study group.

Missing church makes me realize how grounded I feel when I’m there. How I’m reminded of what my Savior has done for me and every sinner in the world. How good our God is, how perfect and just He is. How He is a part of every single moment in our lives. And there isn’t anything that happens, “good” or “bad” without His finger prints all over it. I remember when I was going though a bad time depression wise and a woman I consider my Mentor put her hand on my shoulder and said she sees God’s fingerprints all over me. I can’t tell you the comfort that statement gave me.  I wasn’t in control at that time but God was. He was there every step of the way even when I convinced myself he wasn’t. God is so good.

 

 

 

Graduation and other movings on

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So my Alyssa will be graduating high school next week. Incredible… because as most parents we still remember her when she was a much younger child and the silly, funny things she would do. I’m amazed at how fast time flies by and even more amazed at how not so fast the minutes and hours and days go when waiting for things to happen. Like waiting on the IRS to send us information pertinent to Alyssa receiving her financial aid packet. The time has flown now that we are a week from graduation but time seems to have stood still in regard to the IRS getting our information to us.

The milestones for Alyssa have been nothing less than remarkable. She was stunning at her prom, as were her friends. All the makeup and hair up do’s were simply gorgeous on all of them. Although at that age all the girls could have worn a paper sack dress and still have been beyond beautiful. They went to the beach for the weekend after the prom and from what I can tell it was pretty uneventful. For that I’m so, so thankful.

This past Friday at our church high school youth group meeting they had a special event honoring the graduating seniors. It was great, the youth leader set things up as if he were interviewing each senior on the Tonight Show. Asking them what impacted them the most about youth group, what had their parents taught them that stood out the most, etc… It was really nice and some of them were so funny telling stories that made us all laugh out loud. Afterwards all the seniors were prayed over, it was so moving.

As for the group home placement and Thomas, I guess no news is good news. Tommy and I met with the agency’s nurse and psychologist last week and we liked them both. I’m thinking the last thing for the agency to do is screen Thomas to ensure he is appropriate for their group home. Its the hurry up and wait issue that bugs me. I’m not a good “waiter” for lack of a better word. At the meeting we discussed Thomas returning to the former school he attended before he went to residential. He would stay there a year until he turned 21 and then attend a day/vocational program. I’m thrilled with that plan as Thomas could then “graduate” from that school. Of course a CSE (committee on special education) meeting would have to be held to change Thomas’ placement and I doubt the board of ed will deny moving my son from expensive residential school to less expensive public day school. I just want all the pieces to fall into place…now. But I know things will happen in God’s time and his time is always perfect.

 

Waiting on the group home part 3 (I think)

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Things are moving along albeit slowly but that’s okay. Slow and steady is fine for both Tommy and me. I’ve learned that an agency here had requested Thomas’ “packet” from his current school and it was quickly emailed off. I still have phone calls to make, Thomas is in need of a “Medicaid service coordinator” or MSC for short. This person will help greatly in setting up services for him when he comes to live in a group home. Thomas has  had MSC’s in the past when he lived at home. So we’re familiar with their role. Tommy and I are also meeting with the group home’s nurse and psychologist this week.  I’m looking forward to this meeting.

I have something amusing to write about. The person from the state who was previously pressuring me to accept group home placement in other boroughs *except* for the one we live on is now totally on board for Thomas to live here. On this borough. Really? The other day this person said to me, “You’ve been away from your son long enough, you need him to live near you now…” It was all I could do to not reply in a sarcastic manner but I knew I just couldn’t. Instead I exclaimed my agreement with them, “Oh yes, exactly!”

I’m so grateful to my church family for praying with us for the group home placement to happen. People I didn’t even realize were praying for us are doing so. The power of prayer is real and I’m honored with this wonderful group of people. It’s amazing how the Lord works, He is worthy to be praised!  When I look back at my  journey with Thomas it’s the times I know that God was with me that mean the most. He is always with me but the distinct times I know God was blatantly, no argument, hands down, definitely answering my prayers mean so much; how do you put it into words or explain it to someone? You can’t. You have to believe.

“Be still, and know that I am God. I will be exalted among the nations, I will be exalted in the earth!” (Psalm 46:10) is one of my favorite Bible verses. In looking up this verse I learned that “Be still” is to stop frantic activity, to cease and to look to the Lord for help.In this life I lead now,  I can see no other way to face a problem. Acknowledging that God is all knowing, everywhere and all powerful; trusting Him and His plan; that we understand who He is. When I am still and surrender to God I know I can find peace.

 

 

Hurry up and wait…

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I’ve spoken to the director of the agency who owns the group home we want Thomas to live at. In turn he, the director; spoke to the person from the state who is in charge of finding a group home for Thomas. The director informed state guy that we want Thomas in his group home, I called state guy and told him Tommy and I want Thomas in that particular group home. Sounds simple right? No. Now state guy needs to see if the state and the powers that be, will approve Thomas leaving his current school before he turns 21. I’m not good at waiting. Not good at all.

We need prayers guys! Prayers that this is God’s will that Thomas is to live in this group home. I told state guy that we are totally okay with Thomas leaving his school before he turns 21. I get almost giddy to think he could be living so close to us. I imagine simply having him over for dinner, going to the mall just “because” on a Wednesday night, walking down to the “famous” Italian ice place down the street on a summer night… Not having to schedule and plan every single visit. Don’t get me wrong I adore the staff where Thomas is now and they have been completely accommodating to us and it will be difficult to leave them, but it’s time for a move and I pray this is God’s plan for us. But for now we wait. I don’t like waiting and not knowing. This is so out of our hands: But I know it is in God’s hands.

And so I pray. And I ask my prayer warriors to join me.