where parents of kids with special needs connect
Another Introduction
My name is Meril and I am the parent to an adopted sibling group of 3 wonderful children.
Emma is my youngest. She came to me shortly after birth and is now 10. She was diagnosed with learning disabilities a few years ago and has been on an IEP for the last 3. Counseling and special ed services have made all the difference for her and she is doing well. She is also fairly certain that she is about the cutest thing to come down the pike. (She is kinda right about that)
Eliza was 14 this last weekend and is turning into a lovely young woman. She came to me at age 2.5 and I have spent the last 11 years fighting for our lives and relationship as she worked through some serious reactive attachment disorder stuff. It's been excruciating, and many are the paths I have worn into the floor from pacing at all hours - thinking, protecting, containing, soothing, strategizing, crying, hoping........ but it seems to have all finally come together, and the little girl that I have always seen has finally left the baggage behind and is shining brightly as truly my daughter. It's been a little over a year of peace in the house now and I find myself staring at her these days - noticing how beautiful and happy she has become. It's nothing less than a miracle. LOTS of hope here.......
Timothy, my eldest, came to me at age 4 and is now 15. He has quite the medical history. He has a chromosomal abnormality that has not been seen or recorded before (partial Y deletion, unbalanced translocation of partial X (duplication)), has experienced a stroke, seizures at 2 different parts of his life, spinal meningitis, sepsis, Chiari brain malformation, and chronic traumatic abuse in his foster home for the first 4 years of his life. He was born with a cleft palate, tethered frenulum, heart stuff, and all kinds of issues. He has been on daily injections of growth hormone, has sleep apnea, and, well, has been a frequent flyer at Seattle Children's Hospital.
As of late, I have been really struggling with hope for his future and mine - not entirely sure I have enough grace and hope to pull this off. I mean, the above list is only some of the highlights - there's plenty more. I just can't keep it all in my head all the time. He's a mess on paper. And I've been feeling like he's still a mess when I look at how fast he is growing up. But when I stop to consciously take stock and look over where he's been and how far he's come, I also have to ask myself: What else is also true about Timothy? Here is some of the answer to that question:
He is the sweetest, happiest, most gentle and compassionate soul you'd ever want to meet. EVERYONE loves him immediately and would move heaven and earth for him. He's a loving and devoted big brother to his sisters and a huge help to me and anyone else he can find to help. He's incredibly social and enjoys everyone. He can do dishes, laundry, vacuum, and sweep. He can weed-whack and mow the lawn. He loves to ride his bike, play with his cars, hang out with ANY guys he can find (poor thing is totally girl-trapped), shoot hoops, listen to music - especially kinds that make me crazy, and is currently eating me out of house and home. He reads, writes, spells, and has more recently discovered art. He just started high school this year and, for the first time, is in a self-contained classroom. He is in life skills and is taking the bus, going shopping, and doing jobs around the school.
Even though I am a special education teacher myself (early intervention), this life skills thing has been hard for me. His teacher is great and I would never tell her how hard it is for me to enter that classroom, but here's the greatest thing ever: Last week, Tim got a call from a FRIEND - as in was asked out on a PLAYDATE - for the very FIRST TIME!!!! I just might have to give up my grief over life skills......... He's way too happy.
So I have been challenging myself to carry around more of Tim's experiences (list) in my head these days because, as much as they are sad and awful and challenging and heart-breaking and limiting -- they are also incredibly hopeful. If he can come through all of what he has experienced and still have his heart open to the world and everyone in it......... Well, then there's hope for me - his tired, world-weary, laundry-laden Mama - and hope for the rest of the world.
So, while I have my times and stages of fear and sheer panic over what's to come and see only the pitfalls and opportunities for me to fail my children and lose us all down a bottomless pit of unhappiness, I have also come to see that these are only stages that I pass through. When I take stock of the past nearly 12 years of our familyhood, I am speechless with what we've handled and triumphed over. I am incredibly proud of my beautiful children. We have humor and joy and love and each other and friends and everything that we need in abundance. We've done good.
I come here in search of company along the way.
Replies to This Discussion
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Permalink Reply by Christina Shaver on -
Hi Meril,
Thanks for introducing yourself. I also have an adopted son who has special needs. My son as psychological needs that are pretty severe, so I know what you're talking about when you say that you have a hard time imagining the future. I hope you are able to find some parents to connect with here. We're just gaining momentum on this board, so hopefully as more people join, there will be more conversation.
Looking forward to getting to know you,
:)Christina
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