parenting special needs

A New Small Group in town…

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So the Christmas tree is up and shopping is underway.  I’ve gotten more shopping done than I usually do at this time of year and I’m glad to be a little ahead of schedule. I’m due to start a bible study/small group for mothers of children with special needs with another mom in January. I’ve already identified a book; a bible study for Mom’s of special needs children; I think would be a good fit. I still have to finish it myself so I’m not entirely sure yet. Plus I don’t have input from my co-leader yet. In due time I’m sure it will all fall into place. Or rather in the Lord’s time it will fall into place.

I’m excited to about to be a small group co-leader. To be able to share my experience of raising Thomas and how God has been there through the good the bad and the ugly. Yes God was there when times were horrible as well as when times were good. And it was only through His strength did I gain strength. I was even angry at God on more than one occasion.  I know He was still there and never left us. I know that’s why I was so angry. To know God was there and things were still so crappy. I only got over the anger when I actually met the Lord. And it was then that I really knew in my soul that He was there did my anger dissipate.

I’m excited to have fellowship with other Moms and talk about the Gospel. And how Jesus is still working miracles in our lives and will continue to always be there working and interceding for us. I know I sound optimistic. I am optimistic. We have a wonderful mentor in place who will be there for us in person and in prayer. That makes me feel more secure and confidant in this new role.  I have this month to prepare and pray and prepare some more and then of course pray even more. I’m honored to be used by God in this way. To God be the glory.

 

 

 

Holidays

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They are upon us…Thanksgiving in a couple of days and then we blink and it’s Christmas. Tommy will be picking up Thomas tomorrow to have him home for Thanksgiving. He’s totally excited to come home and it’s really sweet. He called me this past Sunday morning~early, to confirm the day and time of pick up and that it would be Tommy doing the picking up. Thomas also called Tommy the night before to confirm the same. The boy is consistent.

The day after Thanksgiving “we” (meaning Thomas and I) put up the Christmas tree. Rather I put it up and he supervises. Friday morning Thomas, Tommy and I will go out to get a live tree and when we bring it home, Thomas knows exactly what to do, what goes first, that I need to test the lights, and hey where’s the stand, the star for the top and the skirt for around the tree on the bottom?? The girls will get all into the ornament decorating after a while and the whole thing usually goes very smooth. The only thing that gets exhausting is going up to the attic a million times that day. And Thomas will usually be on to the next phase of decorating after the tree is finished.

This year I’ve  managed to get out of Thomas what he wants for Christmas. I consider that a personal victory because every year it’s a struggle to buy him gifts and we usually don’t have a clue  to tell family what to get for him. Aside from all Thomas’ issues he’s really an easy going guy and really  doesn’t want for much so when he does mention something, anything that he would like I make sure I’m paying attention. For Thomas’ birthday he received a television for his room at school. The TV has a DVD player, Thomas asked for the Spiderman movie on DVD and a new Nintendo DS with a couple of games. No problem!  After I finagled that list from him, he then says, “That’s enough Mom, no more…I don’t want anything else” How do you spoil someone who won’t let you? You gotta love him and that way about him.

So here’s to a Happy Thanksgiving and a smooth Christmas tree decorating!

 

 

Special Needs and Grace

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I reread a book recently that I had read a few years ago. The name of the book is “Wrestling With an Angel” by Greg Lucas. It’s written by a father who’s son is special needs/disabled and how God’s grace is shown to him through his son, Jake. The book touched me in a profound way. And through it I’ve recognized God’s grace in my own special needs child.

Greg Lucas’ examples taught me to see God’s grace where you least expect it. There is one instance where Greg is giving his son a bath and for a few minutes his son completely relaxes in the water with his eyes closed, no anxiety or stress and he’s given a glimpse of what his son would look like if he were a typical young man. That is grace, a gift from God. I’ve had a similar experience with Thomas. I had a dream that Alyssa and Thomas and I were talking together in the front sun porch of our house. Thomas was a completely “normal” or typical teenager. I woke up from that dream feeling odd and I wasn’t sure how to process it. I remembered what I had read in “Wrestling With an Angel” and  I realized the dream was a gift. That one day when we’re all in heaven together Thomas will speak to me as a typical child, one with no disabilities such as speech impairment or mental retardation.  He’ll be able to tell me everything he isn’t able to tell me on a regular day.

Greg Lucas also tells of his testimony of being led to the Lord by his son. Jake was 2 years old and suffered from terrible, constant seizures. One evening Greg completely surrenders to the Lord. He cried out to God and begged Him to take over, not just Jake’s illness but his entire life. That touched me because my son led me to the Lord.

When I returned to church and was saved, when I gave my life to Jesus; my life was “fine”. Thomas was living home and doing well. We had many supports in place and Thomas had recreation programs that he thoroughly enjoyed. The girls were also doing well. I met the Lord however because of my son. Thomas was in and out of the psychiatric hospital. I was so angry with God. Why? Why? I would ask and I didn’t receive an answer that was suitable. It was only when a friend (thank you Toni!) suggested I listen to “Praise You In This Storm” by Casting Crowns did I finally break down and realize Jesus was for me not against me. That He did indeed hold every tear I cried. It was at that moment God showed me His grace and my anger dissipated.

There are many more ways that God has shown Himself to me through my son. People who have come into my life who otherwise would not. Situations that would never have come about if not for the Lord. And I owe Greg Lucas’ book for showing me how God’s grace is manifested in my son.

 

 

Stitches and Moving

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A week from today Tommy and I will have been married 20 years. No matter how many times I think about it, it still blows my mind. I think about our beginning years and having Thomas so early in our marriage. Then Alyssa exactly 2 years later. All in all it’s been 20 years, 4 kids and 3 houses. Amazing if you ask me. There were many arguments and tears along the way as well as much happiness and blind loving trust. Plenty of prayer.  A friend recently told me that Tommy and I are an anomaly. I laughed at that statement. Maybe we are. Especially with all we’ve been through with Thomas. I was thinking this morning about Thomas and the rough times. I was also thinking about the times of God shining through those rough times. There was one instance that Thomas fell flat on his face literally. (His reflexes are slow so if he falls forward his arms don’t shoot out as fast as yours or mine do.) Thomas broke his braces, his front teeth and required stitches on his upper lip and chin. When I saw him right after he fell I had to hold on to the bathroom sink to keep me from falling due to my knees going week. It was bad.

So off to the ER we went. And the staff there was wonderful to him and me. I managed to get a hold of our dentist and orthodontist who gave me instructions and were also wonderfully supportive giving me their personal cell phone numbers in case I needed them again. We decided not to wait for a plastic surgeon and the ER doc stitched Thomas up after numbing the area. I remember I was crying on and off for Thomas. I felt so bad for him. At one point I was holding Thomas’ hand and he was looking up towards the ceiling. He had a peaceful smile on his face and when I looked into his eyes I swear I saw the peace of the Lord. Thomas’ face was shining. I’ve never seen that peace in someone’s eyes before and I haven’t seen it again since. It was as if he just knew everything was going to be ok and everything was ok. The ER doc did a great job in stitching him up and the next day we saw the dentist and thankfully Thomas didn’t break his teeth far enough to require root canals. Our dentist was able to repair his teeth with bonding.

It’s time like these I know the Lord was with us. I wouldn’t be surprised if someday Thomas told me he saw an angel watching over him while in the ER. I know we’ve had many times in these past 20 years where the Lord certainly had his hand in watching over our marriage. When we moved back here from New Jersey I swear there was “something” working against us. There was roadblock against roadblock placed in our path during the sale of that house. Earlier that summer we had bought a storage shed for the backyard. According to the NJ inspector the shed was too close to the property line. So Tommy had to get all these guys from work to come over and move the dang shed. The inspector didn’t even want to measure the distance afterwards, just a glance and said, “Its fine”. I was so irritated I insisted he measure. The buyers pretty much demanded our refrigerator. It was not in the listing at all. They started threatening to cancel the sale if we didn’t include it. Somehow our agent smoothed it out that we were able to keep the fridge. And we didn’t even have a traditional closing. We did it separately where the buyers met with their attorney and signed the papers then Tommy and I met with our attorney to sign.It all culminated to an end where we had no house to go to for 4 days after the closing of the New Jersey house. Somebody dropped the ball and we to this day don’t know who. Luckily we had multiple family members who let us stay with them until we closed on the new house. But the Lord was watching us and got us out of the great Garden State. I know that.

So being married for almost 20 years I can say I’m definitely not an expert on relationships. And I wish I had pearls of wisdom to depart. I only know what I’ve lived and what our family has experienced and born witness to. 19 years and 51 weeks of marriage. Pretty cool.

Signing papers

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I received a packet of papers from Thomas’ school via the US mail today. There were various consents forms I have to sign every year giving my permission for Thomas to receive various medications and treatments as needed. It struck me today that I’ll always have to sign for him. Tommy and I are his official legal guardians. (Side note: no one bat an eye when we took that baby home from the hospital without any sort of training or guidebook, but good gravy we were finger printed and background checked to be his guardians after the age of 18…) Tommy or I will always have to give consent for Thomas for one thing or another, or…will have to advocate against a situation or two hopefully not in the near future.

Alyssa is looking at colleges. She’s 17 years old and by the time she goes away to the college of her choice she’ll be a legal adult. The cord will be cut and it will be final. I’ll have no legal leg to stand on if I disagree with her decisions. It’s such an odd comparison between Thomas and Alyssa. When they were small the chasm between them was not that wide. I mean we knew Thomas had issues and that there was something wrong with him we just didn’t know what and had little to no help in finding out what that was at that time in our life.  To go from remembering them both as young preschooler and toddler to now acknowledging the adulthood of both of them. One on one end of adulthood and the other on another end of adulthood is a little hard to digest some days.

It started this afternoon when the mail arrived and I realized what Thomas’ school had sent me. I filled out the blanks and signed where I was supposed to sign. I called the nurses to question a medication change but all in all it was pretty uneventful except for the tug on my emotions that this is something Tommy or I will always have to do. Approve or disapprove decisions for Thomas.

Not soon after dinner Alyssa was talking to me about colleges and dorming (she is determined to dorm and that’s ok). I enjoyed our conversation. She’s worried about the financial aspects of certain colleges and we discussed that and other fears she has surrounding getting accepted to certain schools. I wanted to tell her to keep praying on it but I was interrupted by Samantha.  I will tell her tonight to keep praying to God about the colleges. To give it to Him. He will make a way when there is no other.

I have an interesting spectrum and definitions of adulthood here in my little family.

Testimonies and The Gospel

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I love hearing other people’s testimonies, hearing how the Lord led them here or there, how He has worked and continues to work in people’s lives. I’ve shared my testimony here on my blog about how I met the Lord while crying and listening to “Praise You in this Storm” by Casting Crowns. Lately I’ve been thinking of how God works in my life every single day. How He orchestrates literally everything and every circumstance. How He hand picked and chose every one of my children for me. He knew He was going to give me Thomas and how difficult it was going to be to raise him. He also gave me my girls; Alyssa, Daniella and Samantha knowing how “typical” they would be. Don’t get me wrong the girls been challenging in their own ways but they are nothing like the challenges we’ve faced with Thomas.

I love how God made Thomas so resilient, that when he was 8 years old we had no other choice but to enroll him in residential school for the first time. Thomas did not want to leave us but he did it. He said goodbye to us after every visit,  many times in tears but he would bounce back and adjust to his new “home”. He’s adapted even more wonderfully to the school he attends now. I credit God with gifting him the ability to adapt to new surroundings so well. No one else could have known Thomas would need such a gift and there is no way his resilience could be learned.

I’ve been thinking about the Gospel a lot lately too. No matter how many times I think of or hear the Gospel I am so humbled to know that Christ died for us. And the way He died; brutal. I am struck at how much God loved us that He gave up his son for us. Sometimes it’s more than I can think about and wrap my brain around it. I not only believe this, I know this to be truth. It is absolute and it saddens me when people don’t get it or stay away from the church. I don’t know how to spread the Gospel outside of this blog. I’m not one to loudly proclaim it even though I know the truth in my head and my heart. I wish I were more bold in person but maybe this blog is how God wants me to be bold.

My son and the Beach

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Thomas has been in the residential school now for just over 3 years. I was thinking back to when he was living at home. He was only able to live at home for about 3 and a half years between the first residential school (from ages 8-12) and the second (ages 12-16). It was nice having him home for that time. His meds were stable, Thomas himself was stable. We were able to do things like a “normal’ family. Even go on vacation and/or to the beach.

At the beach Thomas loved to look for shells, he did not like the water at all. In fact at one outing to a beach in NJ with my best friend and her daughters I actually lost Thomas. He took off without me looking for sea shells and when I looked around for him he was no where to be found. I felt the panic rising up. My best friend helped me look but all we saw was a sea of beach goers and not a sign of Thomas. I knew he didn’t go in the water but where the hell was he?  Every story I ever heard of people hurting those with special needs ran through my head. And I felt sick. I wanted to throw up. I couldn’t imagine how I was going to tell my husband that I lost our son. I figured I couldn’t go home and I would camp out at the beach until I found him. Eventually I grabbed hold of a life guard and explained the situation. They radioed down the beach and it just so happened another lifeguard had happened upon Thomas thinking he was lost. The lifeguards radioed to each other I was told to walk down the beach to a certain station and they had Thomas. As I was walking/running down the beach I saw Thomas walking with a very attractive and fit female lifeguard. His face lit up when he saw me, it was all I could do not to cry. I took custody of him and as we started waking back to where our things were, I teased him saying he wanted to hang out with the “pretty lifeguard” he smiled and then said, “Mooooom! You left me!” I laughed and told him I didn’t leave him; he left us by looking for shells. It really didn’t matter at that point, I was just glad to have him back.

With Thomas the way he is now I don’t see us going to the beach without extra help meaning one person just for him to watch him and keep him occupied. That is if we could even get him to the beach. Towards the end of Thomas living at home vacations with him were not fun. After changing meds because of a sharp decrease in his white blood cells, Thomas was not as stable as he was in the past. His behavior had changed and he became very stubborn. Even refusing to get out of the car when we arrived at the beach. When we did manage to get him out of the car he refused to even look for sea shells and he refused to leave the beach chair with umbrella bought especially for him.

I miss walking on the beach with Thomas. Trying to bribe him with a dollar or two or five to get his feet wet. The answer was always, “No” but with a smile. He has a great smile.

19

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My son turned 19 today. I can’t believe 19 years have passed since I became a mother for the first time. My Thomas. The one who made me grow up and become an advocate. I wasn’t looking to be anything other than a mother in those days.  I certainly wasn’t looking to be the mother of a special needs child. That was not in the “plan”. As if it’s in anybody’s plan when you start your family . I once read on a special needs parenting message board, “when you agree to become a mother you essentially agree to become the mother of a special needs child…” Meaning you usually don’t know that that child will have issues, or something to that effect, the exact words escape me. I’m not sure I agree with that statement but I’ve never forgotten it.

Being Thomas’ mom changed me. To this day I’m still being changed and challenged and growing and grieving. I don’t think the grieving ever stops when your child is special needs. You never stop wondering the what ifs. We have the added bonus of having to trust virtual strangers to care for our child since he cannot live at home. We have been blessed with the residential facility that Thomas lives at. These “strangers” have earned our respect and many times when we are fortunate enough to see the staff that cares for our son, we are more than happy to be in their presence. More than happy to inquire about their well being. I’m happy to be on a first name basis with the social workers and charge nurse. I’m very happy to be on the receiving end of a hug or kiss hello from them. It’s been 3 years this June that Thomas entered the residential facility and I’m extremely happy to say for the most part it’s been an uneventful 3 years in that there hasn’t been any emergencies or drama or situations to make us unhappy.

This 19th birthday also marks three years that I’ve been treated for depression and anxiety. I first sought help before Thomas’ 16th birthday.  I’m thrilled to be feeling as well as I do. It’s been a long road and now that I am in the light I don’t mind talking about the dark times. I don’t want to dwell on those times but if my writing about my dark time can help someone else and know they’re not alone it’s worth it. 3 years ago I never thought I’d be where I am today.

Blessings

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I have this song running through my head this morning, Blessings by Laura Story. Yesterday my husband and I were talking to a neighbor who also has a special needs daughter. Many of you know about our Thomas who is also special needs. We’ve been through many, many trials with Thomas. And everytime I hear this song I think of him. What if our greatest trial is God’s blessing in disguise?

Anyway, when we were speaking with our neighbor she mentioned that she often wonders what her daughter would have been like had things been different. My husband replied that he often thinks the same thing about Thomas. I do think that also about Thomas. The big “what if?”  What if he’d been born “normal”?. What if? It almost makes you loathe the word, “if”. That word can hold so much. Thomas is one of the greatest achings of my life. It still pains me that he cannot live at home. I know my husband feels the same. I love Thomas for who he is now, not what he could have been. Thomas being the way he is changed me as a mother. And if I were to be able to change him to a “normal” person, would I then have to change myself to how I was before he was in my life?

I honestly don’t dwell on the what ifs because it is pointless. I tend to focus on the present and future which can hold enough worry all by themselves.  But this song speaks so perfectly to my heart. Especially when she sings, “This is not our home…”  No, this is not our home. I often wonder if when I do meet our Lord will I ask Him questions about my earthly life. Thomas being in the forefront of those queries. Why were we chosen to be his parents? Why did God make things so challenging? Why the heartache? Or will I even care at that point? What I do believe is that when Thomas meets the Lord and joins us, I believe he will tell us himself. It will be glorious to hear my son talk clearly and coherently. I was given a glimpse of this in a dream I had a couple of years ago. Thomas was just a typical teen and him, Alyssa and I were just sitting in our front sun porch talking to one another. I have no idea what we were talking about I just remember Thomas being “normal”. I know when we’re all in heaven together we’ll all talk again. God gave me a preview.

It’s been a while…

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It’s been a while since I’ve written in this blog.  Nothing much has changed since my last entry. I’m still working the job, I still love the Lord, and the family is fine. I’m just quiet. I don’t particularly like being quiet. I need to be shaken up a bit, but in a good way. I’m searching and applying for other jobs but I’ve only been met with rejections. I keep reminding myself that where ever I am is exactly where God wants me to be. I have handed over my trust to the Lord that another job will come along when He feels the time is right and it’s where I’m meant to be. So right now midtown Manhattan twice a week is where I am meant to be and where the Lord wants me. I don’t dislike the job, I do wish I had more hours and more people interaction. I like chatting and interacting with the public. Speaking of the Lord, I’m enjoying church and bible study. I’ve been quiet at both venues though. I used to be very outgoing during bible study, sharing my thoughts and ideas. As of late I’ve been taking a back seat and let others be vocal and just take it all in. There we go with the quiet issue again. I haven’t had anything to share or felt the need to share. I so want to change that. Again I need a shake up. I’m still thrift shopping, finding treasures here and there.  Last week I found the cutest Chanel t shirt and the week before brand new Diesel denim that fit like a glove. Lucky for me both were in my size so I was happy with those scores. On the Thomas front, Tommy and I are officially his legal guardians. When Thomas turned 18 Tommy and I had to file for legal guardianship of Thomas so we will be able to continue to make decisions for him as he is incapable of making decisions for himself. We were fingerprinted and back ground checked.  I find that mildly amusing as no one said boo to me when I gave birth and we were sent home without any kind of instruction manual. But then Thomas turns 18 and we’re subject to whether or not we are capable of being his guardians. We seemed to do a fine enough job for the past 18 years…