the other evening at the park, david kept walking (or running rather) away from the play area and matthias would go over to him and lead him back. although he would fight it a bit, david let matthias hold his hand and guide him back to us. if david doesn’t want to walk, he’ll just drop to his knees and sit down–so that fact that he cooperated was huge! i am so glad i was able to capture the moment.
matthias is entering into a new stage of wanting to be helpful with david. it’s so exciting (and sweet) to watch. we are working hard on ‘being gentle’ when he helps. david is more and more interested in what matthias is doing and playing. i love seeing their friendship grow, but i also want to make sure matthias has time to be himself and flourish.
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if you are raising kids where one has a disability, i’d love to hear about how you encourage the siblings to love each other/but also have independence.
if you were raised with a sibling who had a disability, i’d love to hear how your parents encouraged each child to be unique. how much should siblings be expected to help with their disabled brother or sister?
As I can see from what you were able to capture, you are doing a great job! I teach my boys to take baby steps (just as I teach my most severe son: mental retardation and autism). That is teaching and learning what true unconditional love is… to give without getting back. Danny is the most challenging and Billy/Denis grew up (all same age siblings) going through stages… hating the disabilities most time and sometimes confusing the disability with their brother.. I gently reaffirmed that it was no fault of Danny’s but what the disabilities did to him (the actions from the disability). I always preach the golden rule and it seems that as they mature, they not ony have accepted Danny but help others in the community and at school when all others have shunned b/c one is “different”. I have taught them about “inclusion” which is the feeling of belonging…. that is important. If Danny could… he would… and teaching how to make him feel “included” in many things. That is important. I’ve also seen things from Denis’ perspective (Billy has a form of autism but not the mental retardation). Denis sometimes gets overwhelmed b/c his brother is not socially “cool” and quite a “geek” or a “dorkk” with regard to the social piece. Through many talks we’ve had privately, I’ve seen Denis grown to a new level this year, helping Denis to have his friends “be nice” to Billy and not “bully” him as this was a horrid thing to go through… the bullying has turned into Denis’ friends reaching out to Bily this year in high school helping him when he gets lost “yet again” in the new high school. As my kids mature, they have aspired to new levels of understanding and have risen to the test. No doubt, this will continue…. What does the future bring? Only time will tell. For now, we live the golden rule, we are kind to others, we offer assistance to people in stores that may have a tantruming son and people are staring rather than helping unload the cart, making faces at the boy in trouble to redirect his attention to help a mom get through a food line,,, or just helping a broken down mom with yet another tantrum from a child b/c he may want a balloon…. my boys will get the balloon (knowing all too week to get permisision from the mom all in the same breath, b/c the mom isn’t observing the child, she is dealing with the people behind her with “inappropriate judgements”, the “register cashier” who is rolling her eyes, every eyeball staring holes through the mom’s forehead…. the mom quickly is saying yes to my boys… while they are placing the balloon in the childs hand while securing it to the wrist so that it doesn’t blow away (they all know too well the 2nd tantrum that can ignite while still having the first tantrum from overstimulation at the grocery store); the child suddenly calms… breathing with the heavy cry breaths in between which still pains my heart to hear… the mom is able to complete her transaction and walk out of that store with a little dignity…. after the mom leaves, I normally kick in and try to use it as an educable moment engaging everyone that doesn’t have a clue as to first what the child was feeling and then the mother…. My boys make me proud today…. They went through the horrid stages of “I hate Danny” to the “I hate autism” to the “I have retardation” to the “I hate people who use that retard word” to “I love Danny and I wouldn’t want to have what he has” “Why is Danny so sad today” the changes in my boys are through God… nothing I did… Your sons alread have God by that picture that you took…. Take is slow… enjoy your baby steps… enjoy things that other parents take for granted or may never be able to share…it is they who lose out in the end. Someone once told me that it is from the deepest wells of trauma and grief that we will find the streams of great love and glory … I never understood that… I do now. All my love to you and your family. Sue
I don’t normally pop in with comments but couldn’t resist. You’ve got two very sweet boys! You’ve also had some wonderful comments left.
I’m the mother of a 24 yr. old DD with complicated CP and a 21 year old “typical” DS. Raising our children together was quite the challenge. I didn’t have much help in the way of examples from other parents in the beginning so had to rely on faith and instinct ( thank goodness God is patient!). It took us a while but we discovered that by treating both children equal we were allowing them their own freedoms. DD had his scout troops and baseball. We all would go cheer for games and at scout meetings. DD had her school programs and activities and we would all attend. We encouraged DS to help with DD whenever he volunteered and safely could. If it was changing the movie, tying her feet into her foot plates or helping with a drink, we let him do it.
We also encouraged DD to help her brother within HER limitations. Carry her brother’s baseball mitt in HER backpack on her power-chair, giving him a “lift” when his legs got tired (he would stand on the rear anti-tippers and hold on until he got too big), coloring pictures for his wall etc. I tried hard to arrange play dates for DS at times when I had to be with DD at rehab (OT, PT speech) or couldn’t get Dr’s appointments during the school day. DS did attend rehab with his sister every so often and got quite good at “playing”. We made sure that both kids had one-on-one time with Mom and Dad, quiet time on their own and allowed them to vent and “be normal”. It wasn’t perfect but it worked for us. Both children remain very close.
DS is now living out on his own but DD still chases her brother across the yard when he “gets on her nerves”.
I watched my two out in our yard playing tag today I realised that while it was tough ( and still is), it’s worth it. I wouldn’t trade either one for anything. Follow your gut, be patient and listen to both your boys. You’ll do fine.
The hand of God led me to your site today! I had a rough day yesterday as Charlie, 2, was dragged to yet another Emma appointment. Emma is almost 10 months old and also has CdLS. Thank you for that picture!!
Aside from yesterday, which was rough, I have been inspired by Charlie so many times in this journey. We’re clearly just at the beginning, but I’m trying SO hard to lean on the fact that this is God’s design for my family.
I guess since he’s two, I never MAKE Charlie help with Emma, but he LOVES to do it! And I guess when I see attention-seeking behaviors I try to include him with Emma stuff as much as possible. He LOVES learning sign language to use with her.
I have no advice, though, because I know we’re so early in the journey.
Thanks for the inspiration, though!
Becky
Love the picture…… so sweet !
I have four children, one of whom has Type 1 diabetes and a Thyroid disorder. He’s my second oldest, a son, who is almost 10 years old now. The other children know that he needs sugar when he’s hypoglycemic, and they also know that he can be a pest when his sugars are high.
They understand (as does Alec) that the disease is not WHO he is, but what he has to deal with in this life. I compare Alec’s struggles with another’s struggle with selfishness….or greed….or anger. They aren’t the best sides of us, but we all have a choice: to let these aspects define us or to rise above them with God’s help.
I’m so grateful that, knowing I will not do things perfectly, God always makes up for my short-comings.
Hugs,
Sarah (I found your blog through Angie’s)
WOW…
what an AMAZING capture!! ♥
Thankful you were able to save this moment…
As you already know that my younger son has autism spectrum (to be exact, PDD-NOS), I, as a deaf mom, once in a while have my older son: guide him to wash his hair such as don’t forget to wash your side hair and scratch like a cat. If I am too busy cooking a dinner, Dylan his older brother would sit next to him to help him with his homework: concentrating and guiding him to complete his homework task; otherwise, he would space it out.
Not only helping his younger brother sometimes, Dylan sometimes acts like if he is a speech therapist. There are times I pronounce the words wrong. He would teach me now to pronounce the word correctly. I thought it was funny but he sure is a sweet heart. Just like both of your kids, Matthew and David.
But I’d like to mention one of the comments from Kim about wishing his brother is normal. I have listened that my older son, Dylan had mentioned that he had wished none of us are disability. He has a deaf parent and an autistic brother. But knowing that we all communicate each other throughout by signing and speaking at the same time. We wanted to make sure that the “normal” is not being left out. I am sure your parents did make sure you are into the family, too. Still I am glad you mentioned that you are happy the way he is. That’s one of my destinations to have my older son feels that way when he gets older. Thanks for sharing your point of views with us.
My younger brother, Jonathan, was severely physically disabled by cerebral palsy, so there were some natural boundaries as far as each of us having our own areas in which to shine. We also had different circles of friends and different interests, but I think that had a lot to do with being a girl and a boy.
As far as what my responsibilities were, I think I simply did what was needed and didn’t think too much about it. I can remember one summer when I was 12 or 13, I took care of him for two weeks while my mother was at work–lifting him out of bed and into his wheelchair, feeding him meals and helping him with drinks, helping with his toileting, etc. Now that I have children of my own, I can’t imagine asking a 12-year-old to tackle that kind of responsibility, but it didn’t seem overwhelming or scary at all. It was just Jonathan, and it was just as much of a challenge for him to bear with me through my imperfect execution of his daily routine as it was for me to remember to secure all the arm straps on his wheelchair.
I loved my brother with an intensity that words fail to capture and growing up with him made me infinitely more sensitive to the needs of others, more patient and willing to listen, and more capable of understanding that life does not revolve around me. Being his sister probably prepared me better for life than any other single aspect of my childhood.
Oh those sweet boys! I have one boy with autism and one little girl with mama-is-over- worried- about- her development – syndrome. I love the idea of taking the kids on individual dates (heck I love the idea of dates period). I think you are probably already doing a fantastic job of celebrating the unique heart of each of your boys.
My aunt and uncle raised 6 children-4 girls and 2 boys. Both of the boys have down syndrome. They are all adults now, but to this day if one of the girls rings my doorbell she has usually brought one of her brothers with her. My girl cousins all grew up, some moved away, and yet they still take care of their brothers when they can, making sure the boys live a full, happy life. I know that if something happens to my aunt and uncle any of the girls would take them home without reservations. Your loving home means that both of your boys will grow up with a friendship that will defy all disabilities.
Hi Lisa! I come at this issue from both sides…I was raised with a sister who had special needs and I have a son with disabilities. I was the oldest sibling of 4 and expected to help my middle sister a lot. I love Megan dearly to this day and although we had our moments of sibling rivalry…the Lord taught me a whole lot about compassion for others in being raised along side a child who had to try 10 times harder than the rest of us to do the things kids do. She is an example of strength and perseverance to me to this day. My parents were very great about making sure that I had my own activities and that I was given the opportunity to pursue my own interests. Now I am 30 and is the midst of raising my adorable 5 year old son Asher who has a rare undiagnosed muscular disorder and severe cognitive delays. Asher is 5 and is able to walk short distances with the help of a walker. My younger daughter, Eden, who is just 2 1/2 helps push Asher’s walker from behind every morning into kindergarten. I just can’t help but think about all that God’s teaching her with each effort she makes to help her brother. We are desperately trying to balance our lives so that Eden is given every opportunity to fulfill her dreams and passions and so that she gets the attention she needs as well. We have been doing individual weekends and outings with our kids this summer and it has been wonderful for both of them. Even a simple trip to Costco or the pet store can be a time that we can use to give Eden time and space to be her 2 1/2 year old self. We do not ever require that Eden helps with her brothers many needs, but we give her opportunities to help and she insists on helping often. I think that siblings of children with special needs can grow up with more compassionate hearts for the many people in society that are not the “norm”. I loved seeing the picture of your boys hand in hand! I think your doing a great job! You are an amazing mom!
-Kristin Smith
Lisa: I don’t know how much… I ask myself that same question alot. my son has down syndrome, he is older (5). My daughter is 2.5 and she ‘s already an amazing caregiver to him. It seems to come so natural to her…. we’ll see how things continue as they grow older.
Lisa,
You are an amazing mother! I don’t have any advice for you since I am a 20 year old college student but your wisdom in desiring independence for Mattie is so encouraging. I love that he is entering a stage of helping David out, I can’t wait to see it at church, but I appreciate the godly wisdom you have in realizing Mattie needs time to be the superhero we know and love too. Thank you for your honesty and humility in asking for suggestions. Thank you for being a role model to us girls at Grace!
Love much,
Stephanie
We are learning the balance slowly over time. My 6yo daughter has reactive attachment disorder and congenital heart disease. She just had open heart surgery to do a valve replacement 3 weeks ago. It has been tough for my 4 yo son and we have seen a lot attention seeking behaviors from him. We are slowly getting back to normal. He has been very sweet and careful with his sis most of the time since the surgery. My husband and I have been trying to spend special time with him with focused attention even if it’s just for a few minutes.
Love your blog, your photography and jewelry! I get so many compliments on the necklace I ordered from you!
What a sweet moment between your boys!
Hi Lisa,
I have two daughters, Sabrina will be ten this month, and Chloe, who just turned six.
Chloe was born with many medical issues, and has a form of muscular dystrophy. Sabrina is the kindest, gentlest little soul, and is very helpful with her sister. I really enjoy seeing them together, and interestingly enough they still get on each other’s nerves, as siblings often will!
Little by little Sabrina has taken on, a “mother hen” type of role with Chloe, and she is very protective of her. Overall, things can be difficult at times, as Chloe does require a great deal of our attention, but I really try to make sure that Sabrina is not left out, and we try our best to keep things balanced. I think there’s a bit of a learning curve, in this type of situation, and we all just have to do the best we can. Your boys are beautiful and inspiring. I loved reading your post!
Lisa –
Although I am not in the same position, I do have older children and feel like I have learned something along the way. I truly believe that every family is on it’s own journey and each and every child has a different challenge to deal with. Disability is one thing, alcoholism is another, divorce may be another, depression as well. The most important thing to concentrate on when raising a family, is compassion, love, confidence and all of those important things. Guilt is only going to transfer in negative ways.
I have grown to realize that , from an outsider’s perspective, there is an unusual amount of love in a family that has a person with a disability. The other children seem to learn coping skills that enhance them as a person.
I don’t pretend to know what you go through. This is just my insight.
Your picture is beautiful.
i just LOVE this picture (as i have been reading for a while and watching via blogville the progression).
i do not have disabled children, but i see the fruit of requiring my children to care for each other. i see the fruit of my children needing to care for me when i have been disabled (either emotionally or physically). i wanted to protect them from the burden, but God said “I am shaping them into who I want them to be for My glory because of this.” AND I SEE IT! it grows compassion, tenderness, kindness, mindfulness in them. i already see it in the way they treat each other, and in the way they treat others.
you’ll continue to see it and be BLESSED!
Hi Lisa,
I just wrote a story for a special needs magazine (it’s brand new) and the first of its kind in Sacramento, where I live. I was wondering if you had anything like that near you? I think it is such a great idea for families with special needs.
Your blog is so inspring!
Smiles,
Lisa in Sac
Hey Lisa,
We are still young in this journey, so I don’t have any answers really. I know that my typical child is not going to have the same life that he would have had with a typical little brother, however it does come with some advantages (learning empathy, etc.) I also have been told by other CdLS parents that the typical child kindof gets the advantages that an only child gets, too (in terms of attention and getting to decide where they want to go, etc) and I see this as being true already!
I agree with your other reader who makes sure to tell her other children that it isn’t their fault they have a disability and need more help. And it is an opportunity to teach and act out parts of the Bible.
I guess I just feel like so many people’s lives are unequal in a lot of ways and I haven’t worried about it yet. It’s not fair, but it’s not all that different either. I know that I wish there was more fairness in my childhood so far as my siblings go, even though they are all typical. I guess we’ll all just learn what works for our particular kids as we go along.
The picture and story are REALLY cute! !!!!!! Blessings to you and your family!
What a beautiful picture! Melts my heart…
I just try to teach my children to have patients with their siblings. I reminder them that it’s not their siblings fault, they can’t help it and to try and place themselves in their siblings shoes. But when push comes to shove, I allow the older sibling freedom to play with their friends, without the younger sibling around. It’s all about balance and it’s a consistent struggle. I just pray in the end it will all work itself out with their friendship as adults.
My daughter is 3 & is deaf, we also have a one year boy Im hoping that all the love comes naturally & they will be there for each other, I do worry that my wee man will feel a little left out as he gets older as Keeley will need more of our time, but Im sure things will work out just fine & they will be best of friends, my daughters already teaching him sign language!! I also try to get time alone with each of them even if its just an odd hour at the weekend just so they get mummys full attention.
x
My younger brother is special needs. I admit it was hard growing up; I would get good grades and it wouldn’t get much attention. If my brother did something good, he would get rewarded. That was very difficult for me to understand as a child. I wished I had a “normal” brother. Of course, now I would never change a thing. My brother was a blessing that took the whole family many years to understand. He has turned into a very nice young man, sincere and helpful to all. My mother said to me that she believes God gave her my brother so she wouldn’t be alone when she was older. What a great way to think! God has plans and although we might not understand them now, He seems to always know what He is doing. I’m attaching a link to my favorite story on having a special needs child…
http://www.our-kids.org/Archives/Holland.html
My oldest son (10) is on the autism spectrum while my other two (8 and 6) are not. We have always encouraged them to be loving and kind (being like Jesus) to one another and others. We homeschool so they are always together and are best friends. However, we encouraged my middle son to pursue other activities where his different needs could be met (Cub Scouts) and the youngest is joining him this year. We also do “dates” with each of our boys doing something they love or just an errand where we get one on one time. We also stick up for each of them to have time alone and not be bothered by the other if they need it.
I’m not sure we have any magic formula. We just try to respect their different personalities and treat each other how they want to be treated. What a privilege to be a mom and to share this training with them. Blessings in your journey.
I have tears in my eyes and a heart full of emotion when I see this beautiful picture. Yes, you certainly did capture the moment. I’m gripped by how Matty looks so grown up, even compared to your last picture of him. This is huge, isn’t it? Matty’s eyes seem to reflect the importance of the moment – they have a very deep, thoughtful quality in them.
I think this is the sweetest picture ever.
I’m not in either of those cases and can’t help but just wanted to tell you that this photo is so sweet and that you have two wonderful kids.
A bueatiful family!
Its a hard question and I know what you are asking. In our house we tend to allow asha to decide when she wants to offer finn assistance. Its strange but when we are at home she lets finn do what he wants and the nurturing gene it doesn’t really kick in, but when we are out it seams that her radar is naturally turned up a bit and she will assist him a little more. She does it without even thinking, its totally natural to her. I have found she now even helps other kids in trouble automatically. To be honest I think its up to them to decide. Matthias will tell you or you will read it in him when he has had enough. I wonder if this is one of those issues that is more of a concern to us parents than it ever is to the kids. If you find the secret answer let me know!! Good Luck x
It’s so fun to see them growing up and changing – in ways I never imagined. Those two melt me. Absolutely.
I have two beautiful boys, a nine year old and a 3 year old. My 3 year old has severe epilepsy and is autistic. I watch my 9 year old with him and he’ so kind and gentle, always wanting to help. I feel a sense of guilt because the 9 year old seems to have taken a fast track to growing up–constantly worrying about his brother and wanting to protect him. He also watches us dealing with so much stress and anxiety that It makes me feel sad that he’s being forced to grow up too fast and I always worry about him losing his identity since there is so much focus and attention on the little guy. It’s a learning curve for me and we take it day by day. I do my best to try and do special things with just my 9 year old so that I can focus 100% on him and make him feel special too.