parenting special needs.

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?

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.

 

 

The Typical Child.

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Our oldest daughter, Alyssa is graduating high school this June. I’m amazed at how fast time has flown. It literally seems like just yesterday I was seeing her off to pre-school and she was crying for me to not leave her. I can’t help but remember her as a baby and how pretty she was/is. When Alyssa was born we were living in the first house we bought and thought we would live there forever. Two houses and two more kids later…things change.

These days Alyssa is driving (which surprisingly does not freak me out), off working her part time job or babysitting *and* planning for the next phase of her life: College. She’s planning on attending college in Manhattan at a fashion business college right in the heart of midtown. Exactly where she wants to be. I’m excited for her and I know she’s going to do well in college. She did really well in high school keeping up with the demands of the International Baccalaureate program (which is pretty much a super high honors program with the added bonus of earning college credits while in high school). I know I sound like I’m bragging but I can’t help it, we are very proud of her. Especially since she is the first child following Thomas.

When Alyssa was born I was so, so happy to have a typical child. Thomas was only 2 years old when Alyssa was born and his behavior was already off the hook. While Thomas was busy being his special needs self and I was attending to those needs, Alyssa would quietly meet every developmental milestone. To the innocent bystander Alyssa wasn’t doing anything “great”, but in my eyes she was. I noted every single one of those milestones and reveled in them. My mother and I swore it was as if she read a growth and development book and knew what to do next. I thanked God everyday that she was so typical.

So here we are almost 18 years later. Alyssa is still meeting milestones and doing what she’s “supposed” to do. God is still working in her life in a mighty way. We’re still attending to Thomas’ special needs but life isn’t as hectic as it used to be. Alyssa has been able to shine in her own typical way and that to me is fabulous.

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.

I used to think…

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Before I had my son I used to think kids who weren’t talking were never read to or talked to by their care givers, I used to think people who yelled at their kids were monsters and didn’t deserve their kids. I used to think having a child in a special ed class was a terrible “label” and it would follow that child where ever he/she may go and not with good consequences.
I used to think having a son who was labeled mentally retarded was the worst thing ever. So much so that I badgered a developmental pediatrician who wrote that in an evaluation report to also add an addendum that I as the child’s mother vehemently disagreed with his findings.

I used to think a lot of things. Used to. Then life hit with an impact. I had a son who was speech impaired for seemingly no reason when he was a toddler. I tried to read to him as well as you could read to a busy and disinterested toddler. I am a “yeller” or I was anyway. And I know I’m in good company because a lot if not most of my mom friends were yellers too. My son started receiving special education services when he was 3 years old. I swallowed my pride and accepted their “label”, little did I know that such a label is not a bad thing but a ticket to other services he was entitled to such as Physical therapy and occupational therapy. Today I encourage any labels “they” want to put on my son as it doesn’t change who he is to me, because with those labels now comes placement beyond the board of education. My son’s time being educated and cared for by the board of ed is coming to an end as of next year when he turns 21. New labels may be more appropriate for him as an adult.

I used to think depression was a state of mind and that one should just snap out of it or look around at all they have that is good in their life. I now know depression is a real chemical imbalance in one’s brain and there is no “snapping out” of it. You simply can not. Depression clouds all your thinking and makes you feel worthless no matter what riches you possess whether it be a terrific family or terrific wealth.

I used to think God was a mystical father figure only interested in us on Sunday mornings. I used to think Jesus was the son of God who died upon a cross; period. I now know with all my being that God is real; period. He is with us all the time and not just on Sundays. And that Jesus died for my sins and yours. I know now that His grace is sufficient. Jesus’ life and death and resurrection is the best example of love that I know. And I humble myself to follow him the best that I can.

People watching and being in the city

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I’m on my way to Manhattan this morning. I’m on the ferry and I’m people watching. I love to people watch, usually the subway has more interesting people to watch mostly because it’s a more diverse population than the morning ferry. On the ferry are mainly people going to work with the occasional college student here and there. The afternoon ferry is interesting because of the number of tourists. I love to tourist watch too.

I was in the city yesterday for work and I still can’t believe the location I’m at. Literally right across from the Empire State Building. It’s amazing and you never grow tired of craning your neck to see the top. I love it. I’m in the city today for an appointment with my therapist. I’ve “graduated” to every two weeks as opposed to every week. I’m okay with the new arrangement. Honestly there are weeks that I go and I have literally nothing going on to talk about, I’m just not ready to let it go completely. We discuss my small group bible study and some challenges that have come up. It’s good to have Nancy’s perspective and insight. So I am glad that I still see her.

I received a phone call from Thomas’ social worker yesterday. It seems a couple of agencies are interested in Thomas for group home placement. When Thomas is 21 next year he’ll go to live in a group home, this is the plan. However these agencies represent group homes in the Bronx, Brooklyn and Queens. Umm….No. We want him here where we live. And thank God his social worker feels the same way. She’s in complete agreement with us and already told me she will also advocate for Thomas to be placed here where we live. So I’m praying for there to be a space available when the time comes.

Tommy and I will pick up Thomas on Friday morning so he can spend Easter with us. I’m looking forward to seeing him. We speak often on the phone but it’s not the same. He’s really looking forward to coming home so I’m hoping it all goes smooth and anxiety free for him and us.

Happy Easter!

Broken

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I was listening to the radio this morning (I listen to a local Christian station called THE STAR 99.1). One of the dj’s, a woman was talking about her husband watching a you-tube video of a dad with a son who has Down Syndrome. The dad was saying over and over how his son is not broken. The dj and her husband are parents of a young girl with Down Syndrome.

The statement of “He’s not broken” referring to that dad’s son really hit me hard and had me almost in tears. I thought of my Thomas and do I think he’s “broken”? It makes me pause here, writing this. My answer would be that right now knowing what we know about Thomas, that he does have brain damage caused either in-utero or during birth (we’ll never know); no he is not “broken”. I didn’t always think that though.

When he was younger I did think he was broken. I went from doctor to doctor, specialist to specialist, in search of someone who could “fix” him. Searching for the right person with the right combination of either therapy or medications or both to make Thomas “right”. Little did I know that there was no fixing him. He was never broken. Just different. But different in a way no doctor could put their finger on until Thomas was 12 years old. When this prestigious, very expensive neurologist at Cornell University interviewed me for Thomas’ history and then thoroughly examined him; told us what we never expected to hear; Thomas was brain damaged. He wouldn’t get any worse but he wouldn’t get any better either. Imagine being punched in the stomach. That’s what it felt like to hear that after all those years of searching and hoping.

I used to think I’d give anything for Thomas to be like a “typical” child. But who am I wanting that for? Me or him? He only knows what it’s like to be Thomas. And if I were able to change who he is, who’s to say he’d be as wonderful of a person as he is now?

That word,”broken” really challenged me today. Really

Seeing the Church Move

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Since I started co-leading this small group/bible study for Mom’s of special needs children, I’ve had the distinct pleasure and honor of watching the church move. Watching other members of the group support and help each other. It is truly the hands and feet of our Lord in motion. And I am blessed to be a witness to it. I didn’t know what to expect when we began meeting for this small group. I didn’t know if everyone would get along or if anyone would be judgmental. Thanks be to God we all do get along and empathize and pray for each other; and no judgement.

I worry I don’t have the “right” words to say, I’m pretty quiet and I’m an active listener during the meetings. I guess that is the role The Lord wants me in. But there are times where I want the Holy Spirit to come upon me and give me words that will make an impact. I’m thinking my presence is enough of an impact. At this time anyway. My co-leader is quite gifted in knowing what to say and how to say it. She was amazing last night and I’m so thankful the Lord put us together to lead this group.

I prayed this morning for God’s help and support and strength in being a part of this ministry. Apart from Him I am nothing and I need His strength to be able to minister to this group of wonderful women.