Inspiration for Parents of Children with Special Needs

Providing Family Centered Services

'...If we're going to be successful with families, we're going to need to 

reorient as professionals. We're going to need to look to families as leaders, 

families as experts, families as bosses. We're going to need to ask them to 

join us cooperatively as equals in this partnership so that we create a reality 

there that matches what all of us want to see.' 

- Lisebeth Vincent

·         Recognize that family is constant in a person's life, while service systems fluctuate;

·         Facilitate family / professional collaboration at all levels of services;

·         Honor racial, ethnic, cultural and socioeconomic diversity of families;

·         Recognize individual family strengths and respect different methods of coping

·         Share complete and unbiased information with families on a continuing basis and in a supportive manner;

·         Encourage family-to-family support and networking;

·         Recognize and meet developmental needs of infants, children, adolescents and adults, and their families, into service systems;

·         Create policies and programs that offer families emotional and financial support;

·         Offer accessible, flexible, culturally competent and responsive services.

http://ddsn.sc.gov/providers/publications/Documents/WorkingWithFamilies.pdf

How Parents and Teachers Can Work Together

Within the first few months of school, I became anxious and frustrated. I watched as the classroom teacher taught my son in ways that were limited to the recommendations of his IEP (Individual Education Plan) I knew so much about him that could truly make more of a difference in his education. I had spent hours observing him, reading books, talking to professionals and attending workshops. I had insight into his special needs.

I realized that I could not expect the school to fulfill all of my son’s educational goals without my support. I needed to become involved in the process. I could share information with the teacher that I had gathered from research and reading. I could make suggestions for additional learning services and supplemental activities. Most importantly, I could provide proactive guidance and support.


Steps to success

1. Inform the School. When registering your child for school, indicate in writingthat he or she has special needs.
2. Meet with the Principal. You can ask questions related to school safety, routines, resources and steps that will be taken to address your child’s special needs.
3. Meet with the Teacher. Do this as soon as possible, and definitely before the first IEP meeting. Use this time to introduce yourself and share information about your child.
4. Develop a Communication Strategy. Set up the best method to communicate with the teacher to share brief updates and information about your child’s progress.
5. Demonstrate Capabilities. Bring in a portfolio of your child’s work from home to meetings with the school, to demonstrate your child’s overall strengths and weakness.
6. Provide the Teacher with Resources. Create a folder of handouts, articles, written strategies, or website addresses that you believe will be useful to the education of your child.
7. Help and Support the Teacher Lend a helping hand in the classroom!  Be prepared to support other children too, as this frees up more time for the teacher to work directly with your child.
8. Prepare for the IEP Meeting. Be prepared for the IEP meeting by making sure you arrive on time and know what the goals of the meeting. Write down questions and concerns you have, regardless of how certain you are that you will remember them.
9. Provide Information and Evidence. Notify the school of any outside evaluations, medical information or support services that can help school personnel continue to provide a strong educational program.
10. Offer Feedback. If needed, provide constructive feedback. Indicate what has worked best for your child and what hasn’t. Teachers reflect daily on their practice and make changes according to their students’ success.

http://nichcy.org/how-parents-teachers-can-work-together-in-the-inclusive-classroom

All About Will

Fourth Birthday

Fifth Birthday

Sixth Birthday

https://www.youtube.com/watch?v=kk1jgvS-x9Q

https://www.youtube.com/user/janamarie118/videos?view=0&shelf_id=1&sort=dd

9 Ways You Can Help a Special Needs Parent

1. Talk about your kids' personalities, not their accomplishments. I mentioned in the last post it can be hard to be around typical moms, especially when they're bragging about their kids' accomplishments. When I hear a mom tell me that her 3-year-old knows all the words to her favorite book by heart, it can hurt when my son can't speak. And it doesn't give me a lot of room to say anything in return. I'm not inclined to mention one of my son's accomplishments, like he made the "B" sound the other day, only to be met with compliments that can feel patronizing. But here's the thing: I'd love to tell you all about Jacob's personality. I want to share with you how funny and weird he is, how mischievous he is, like how he sticks his finger in his nose all the more when I say, "Ew!," just to get a reaction from me. How he is affectionate, silly, and determined to get his way. How he kisses fuzzies he finds on the ground, and is obsessed with elephants. I want to know about your kid's personality, too, which is probably more interesting than his or her achievements, anyway. No matter how impaired a child is, he or she has a personality and a spirit, and the parent knows it. Let's start talking about who our kids are rather than what they can do.

2. Insist on helping. No matter how "together" I appear on the outside, I can always use help. In fact, sometimes appearing "together" is the only way I can make it through the day myself. You'll notice I didn't write "offer to help." Offering to help is lovely, don't get me wrong. But from experience, I often have a hard time accepting help, even when I really need it. It's odd -- why am I trying to act like a superhero when I actually need help? Sometimes I doubt the offer, thinking they just feel bad for me or are just being polite. But if you insist on helping, it's fabulous because I feel like you will not take no for an answer -- it takes a weight off me. In terms of how to help, you can always ask, "How can I help?" and if a special needs parent gives you some suggestions, that's great. But if you find that this question is getting you no response, it's not because he or she doesn't need help. It's because she doesn't have the energy to figure out what to tell you. So if you love this person, be a detective and find out how you can help (and make sure it's actually helpful to the person). "I'm sending you a few cooked meals this week." "I found a few great neurologists in your area." "I'll drive your kids to practice this weekend." "I got you a housekeeper for a few hours." One way to help that will probably be universally accepted? Help watching the kid so the parent can have a break.

3. Stop with the maxims. I understand that people just want to offer hope and encouragement and don't know what to say sometimes. But I never knew a cliche or maxim that suddenly made everything better. Examples of things I've heard that are pretty frustrating: "He'll be fine." (How do you know this? And why are you diminishing what I'm going through?) "Everything happens for a reason." (A personal non-favorite of mine.) "He'll get there." (Again, how do you know this? What if there are some things he will never be able to do?) I sense sometimes that the maxims are really to make the speaker feel more comfortable with the situation -- but they don't help me. Please lose the maxims. Just be there for me. Tell me my son is adorable (it never gets old). Listen to me, cry with me, laugh with me. I don't need canned wisdom, I need friends, ears, and helping hands.

4. Extend me some grace. While in some ways my parenting experience is the same as a regular mom's, in many ways it's not. I can't begin to explain how hard it can be sometimes. Sometimes I'm exhausted from a rough week of doctors' appointments, or maybe you just caught me in a sad moment wondering if Jacob will ever live independently, or what will happen to him if I go first (sometimes this can be triggered by the smallest, most innocuous thing, like seeing a TV commercial or overhearing a conversation). If I am grumpy, snap, forget your birthday, cancel plans, or otherwise less than saintly, I hope you will just extend me some grace, and give me the benefit of the doubt.

5. Stop complaining about your kids. OK, we all get a license to complain about our kids sometimes (special needs parents included!). But please be sensitive to what you complain about to a special needs parent. One of my dearest friends with a typical and sensitive child would complain to me that her daughter had so many requests: she wanted her eggs cooked just this way, her pillow cold, her car window rolled down just this much. I told her that I would kill for Jacob to be able to tell me those things, so that I could do them for him. He's non-verbal at almost 4 years old and lacks the motor skills for enough sign language or the iPad (for communication apps), so it's painful when I see him so frustrated and unable to express himself. Don't complain to a mom of a non-ambulatory child that your kid ran around and knocked over your favorite vase. Save those complaints for your other friends, or don't make them at all. Because know that your complaint about your child might be our deepest wish for what our child could do.

6. Ask me how I'm doing. Often the focus is so much on our special needs kids, that the parents are overlooked. And guess what? We are driving the boat. Without us, our kids would be in trouble. The parents need tending to as much as the kids do. My friends often ask me about Jacob (see #7 here for a more helpful way to ask), which I love, but it would also be nice if occasionally they asked me about how I'm doing -- not in my career, or my hobbies or dating life, but how I'm doing in this role as a special needs parent. I don't often get to talk about how hard it can be, or how I'm tired, or how I had a good day or bad day. It might just be me, but a sincere "How are you doing handling everything?" once in a while, and readiness to hear an honest answer is all I need to feel like someone cares. Alternatively, sometimes it's just good to talk about other stuff ... so please go with it if I do.

7. Coercively pamper me. I don't know any mom, special needs or not, who will say no to a beautiful bouquet of flowers or a massage. I learned the hard way as a single parent that no one was going to pamper myself but me, so I got good at treating myself (if you're a single parent, read this to learn how to take care of yourself). And my son is much better for it -- he has a happy and energized mom who feels grateful that blue cheese tastes so good, or that her nails look nice (for some reason I always feel like a happier mom when I'm a little more put together!). Call this a shameless plug for more treats in life since the world's cards are stacked against us. A little treat with a note like "You do so much for Em, just wanted to make sure you're taken care of too" will probably do wonders for a parent's day, or week.

8. See my child. Don't stare. But also don't look away or avoid. My deepest wish is for you to see my child the way I see him. Look into his eyes. Observe him with love. See him. Get to know him. Include him, hang out with him, get your kids to do the same. Learn how to treat him with dignity and the profoundest respect, because a wise woman once told me that in some cultures, special needs children are seen as the human form closest to perfection and God, because they are no longer here on earth to learn, but to teach. In these cultures, the elders all bow down when a special needs child enters the room. Oh, but that we might become one of those cultures! One of the most hurtful things for me as a special needs parent has been seeing others, even my friends, uncomfortable or awkward around my son. Please find a way to start really seeing and loving my child. It might start with spending more time with him.

9. Support my cause. At the very least, you can support my cause. I might not be close enough to some people in my life for all of the above points to apply, but it's meant so much to me when colleagues donated or ran to support my fundraising efforts for my son's school. You can speak up when other people say things like "retarded," "short bus," or "as long as it's healthy" and explain why it's insensitive. You can stop bullying or teasing if you see it. You can stop being impatient with the checkout clerk who seems to be moving more slowly. You can stop gaping or making rude comments at kids who look or behave differently out in public. You can stop making fun of disabled people (it sounds horrible, but we do it much more frequently than we realize)--or pitying them. You can cast special needs kids in advertising campaigns, TV shows, movies (hint: Jacob loves the camera, he's a total ham!). You can make an active effort to have special needs kids be a part of your typical kids' lives. You can get to know us.

http://www.huffingtonpost.com/maria-lin/special-needs-parents_b_1338169.html

Family Voices

Take it one day at a time.
Fears of the future can immobilize one. Living with the reality of the day which is at hand is made more manageable if we throw out the “what if’s” and “what then’s” of the future. Even though it may not seem possible, good things will continue to happen each day. Worrying about the future will only deplete your limited resources. You have enough to focus on; get through each day, one step at a time.

Decide how to deal with others. 
Understand that many people don’t know how to behave when they see a child with differences, and
they may react inappropriately. Think about and decide how you want to deal with stares or questions. Try not to use too much energy being concerned about people who are not able to respond in ways you might prefer.

Remember that this is your child.
This person is your child, first and foremost. Granted, your child’s development may be different from that of other children, but this does not make your child less valuable, less human, less important, or in less need of your love and parenting. Love and enjoy your child. The child comes first; the disability comes second.

Talking with you mate, family, and significant other.
One spouse is often concerned about not being a source of strength for the other mate. The more couples can communicate at difficult times like these, the greater their collective strength.Understand that you each approach your roles as parents differently. How you will feel and respond to this new challenge may not the same. Try to explain to each other how you feel; try to understand when you don’t see things the same way. For many people, the temptation to close up emotion ally is great at this point, but it can be so beneficial to have reliable friends and relatives who can help to carry the emotional burden.

Do not be intimidated.
Many parents feel inadequate in the presence of people from the medical or educational professions because of their credentials and, sometimes, because of their professional manner. Do not be intimidated by the educational backgrounds of these and other personnel who may be involved in treating or helping your child. You do not have to apologize for wanting to know what is occurring. Do not be concerned that you are being a bother or are asking too many questions. Remember, this is your child, and the situation has a profound effect on your life and on your child’s future. Therefore, it is important that you learn as much as you can about your situation.


http://www.familyvoices.org/admin/work_caring/files/nd20.pdf

Interview

How did you feel when Will received his diagnosis? 

 By the time he received the official diagnosis, we were ready for it; we had to wait for that appointment for a few months so we had had time to process everything. How we felt when we first semi-diagnosed him ourselves is a different story; it was very, very hard. I cried and ate entire packages of Oreos by myself :). I have a cousin whose two sons are profoundly disabled (non-verbal) so I was very worried about how severe Will's autism would turn out to be. I was worried about how Chuck and I would handle this challenge. BUT I also felt a lot of peace, especially once the initial shock wore off. I blogged about it after the official diagnosis if you want to read it: http://oursideofthetracks.blogspot.com/2010/07/sweet-sweet-baby-will.html

What helped Will most with his autism? 

Early intervention!!! I think it was crucial that we recognized the signs and sought treatment, it's so tempting as a parent to dismiss any possible concerns or problems and kind of be in denial, but that just delays your child receiving help and being able to make progress sooner. 

Was there any one specific type of therapy that you thought helped with the most? 

Probably just the developmental preschool in general- I'm not sure exactly what methods/therapies they used the most with Will, but going there was so beneficial. I know they did a lot of sensory stuff, we were all thrilled when he finally got to the point where he was comfortable finger painting :).

Has he ever had therapists or teachers that you did not like? Or that you did feel were doing all that they could for Will?

Mmmmm, I think we've liked them all. His occupational therapist when he was 2 was kind of different, but very nice and wanted the best for him. One thing we tried at her recommendation was simulating the womb by me sitting in a completely dark and silent closet, holding Will (he was only wearing a diaper) for like thirty minutes at a time. That was weird :)

What do you feel has made the biggest difference in his life? 

Honestly, I think our approach as parents. Chuck and I both really hands on and interactive and we've tried to embrace this aspect of parenting and be really positive. And not to get too cheesy religious, but we are very mindful that Heavenly Father sent Will to us and therefore must trust us to set aside our own needs and what's convenient and easy and all of that and be the parents that Will needs. 

The other thing that I think is huge is his relationship with Clyde. They're only 19 months apart and Will has benefitted so much from having someone to mimic and imitate and play with and look up to. I think that's a big part of Will's friendly nature and social ease.

What has been the biggest struggle as his parent? 

Not knowing the future. When he was younger I used to just sit and cry not knowing if he would be baptized or ever be able to live alone. Now I worry about his high school experiences and possibilities of dating and marriage. On a more day-to-day note, the hardest thing is not being able to protect him all the time or be with him to make sure people can understand him or make sure he understands things. And honestly, as you'll soon find out (yay!) these are universally true parenting struggles with all of your children, but I feel like it's more acute with Will. 

How has schooling for him gone? Is it harder than with Clyde?  

School has actually gone really well so far. He had an incredibly sweet and patient kindergarten teacher which helped immensely. It's nice because students with learning disabilities or disorders are usually on the radar of the teachers and school staff, so they're checked on and looked after quite a bit. We actually took Will off his IEP this year based on his test scores and how well he's doing and the fact that the IEP couldn't really address the kind of goals we had for him. I feel good about that decision, but it does make me a little nervous to lose the protection that the IEP gives us if we have a problem with something. Luckily his school and principal are very supportive, so hopefully that continues!