Day to Day Survival Tips in Special Needs Families

is the on-line newsletter of the excellent Association for Comprehensive NeuroTherapy, a non-profit American organisation which explores non-drug based, often nutritional, approaches to treating anxiety, autism, attention deficit/ hyperactivity disorder, depression, obsessive compulsive disorder, tics and Tourette syndrome, and learning disabilities.
The following article appeared in a recent newsletter.

These ideas were shared by a mom who hoped her family experience could be useful to others. She was dealing with children with immune problems, tics, anxiety, learning problems, and more. Her suggestions are posted on our Academic Challenges forum, and other parents have added their comments. Please see the link at the bottom of this article to find the topic online. Our forums are free and open to everyone to read. If you want to add your own comments or ask questions, just register – it's quick and easy!

For ADHD/School work

• Break homework up into very small chunks. As soon as focus becomes a battle, take a 5 to 10 minute break.
• Allow physical activity while doing homework. Stand instead of just sitting, use a squeeze ball while reading, allow chewing gum. Allowing the brain and body to multi-task makes homework easier.
• As soon as your child gets home, review assignments and anticipate how long it may take, given his/her current abilities. Work backward from bedtime to figure out when homework needs to get started, rather than starting at the traditional time and letting bedtime get pushed off.
• When homework slides into tears and tantrums, call it a day. Your relationship and having your child know you trust him when he says he just can't do anymore is more important than any assignment.

For dysgraphia (written language difficulties)

• Use your home printer to print paper with really dark, bolded lines on it: vertical lines for math, horizontal lines for writing. Place it underneath your child's work paper so (s)he has a guide, without the stigma of using lined paper when peers aren't.
• If you have a 504 plan (US only), include an accommodation that allows you or your child to type answers to homework. Focus on the process of learning rather than the execution of the writing.

For age-regressive behavior

• [Use of this tip on reducing inflammation that could be aggravating symptoms depends on the medical condition you are dealing with and specific child needs.] In our case, when impulse control seems non-existent, we use an NSAID (non-steroidal anti-inflammatory) on a regular schedule rather than waiting until symptoms have already escalated and it seems to help. During the school year, Aleve can be really helpful, as it lasts longer than Motrin and can stay effective during most of the school day. At 55 lbs, ½ Aleve is ok. Dosing and side effects of various NSAIDS can be found here: NSAID Dosing

For anxiety and OCD

• Cognitive Behavior Therapy is extremely helpful for anxiety. Finding a therapist for young children can be difficult, though younger kids actually seem to adopt the techniques much easier than older kids. Some books that really help are What to Do When You Worry Too Much (Heubner), Freeing Your Child From Anxiety (Chansky) and for younger ones, Tiger, Tiger, Is It True? (Byron)
• Exposure and Response Prevention (ERP) is, in my opinion, the best way to manage OCD over the long term. SSRI antidepressants in small doses may also be needed in individual cases, and medical treatment for the underlying trigger is of course needed. But for long term skills and for giving your child a sense of control and your whole family a mindset of not being a victim, I can't say enough in favor of ERP. It may not be particularly effective at the peak of an exacerbation, but over the long term, it instills a perspective to problem solving that can be applied to many aspects of life, even once the OCD is under control. Good books on the subject are What To Do When Your Brain Gets Stuck (Heubner), Freeing Your Child From Obsessive Compulsive Disorder (Chansky), and Talking Back to OCD (March) — which is very helpful explaining the parents; role, which is not to do the work for the child but to be the coach.
• Breathing exercises and bedtime massages help with relaxation and also give you a chance for "talk time". Having a designated time to connect with a parent every day can make it easier for a child to talk about fears and turn a bad situation into an opportunity to build a long term, trusting relationship.

For tics

• Some have found diet, electromagnetic frequencies (EMFs), toxins, TV and computer screens to be triggers. My son swears playing video games give him relief, as it distracts him. And even though he may have ticced more afterward, for him it was worth it to be able to block out the urges for a period of time.
• There are medications for tics but few on the ACN Latitudes Forums have reported much success. Although they are very heartbreaking to watch and a very public sign that something is wrong, it's often the parents who struggle most with tics. Having lived this, I can look back and say the best thing I could have done (but never managed to do) was to ignore the tics and remind myself that tics are better than many other things, like cancer, permanent disabilities and OCD-driven anorexia. Tics are tough, but survivable.
• There is a therapy called HRT — Habit Reversal Therapy — it's like ERP for tics. Some TS specialists say it works. My child was never in a place where he was willing to try it. Again, the tics bothered me far more than they bothered him.

For overall health

• Detox, detox, detox. It has been so important and reduced the severity and duration of symptoms in a way I never imagined.
• Type up a medication schedule and keep it with your child's medications. List the name of any medication, time to be given, dosage, and whether it should be taken with/without food, away from other meds, etc. Make sure the name of the medication matches what's on the bottle label. Should you ever not be available, the person dispensing meds could be looking for a different name of the same drug.

For siblings

• Dates out of the house with a parent, especially the parent who's giving the most attention to the sick child, are important.
• Therapy to help the siblings understand what's going on.
• When the sick child gets bedtime attention with massages or talk time, it's important that siblings get the same thing. We alternate nights with each kid. One night, mom reads and does the bedtime routine with the sick kid and dad does the routine with the other. The next night, we switch. If you have more than two kids or less than two parents, try staggering bedtimes, or maybe stay up late with one kid on weekends. Carve out time in one way or another. Above all else, special one-on-one time is the most valuable thing you can give to any child, but especially to those who live with a sick brother or sister.
• This presentation "Recognizing Glass Children" highlights the "good" child who doesn't have special needs yet grows up in a house of turmoil. It is worth watching. These children may be "looked thru" and not seen, as if they're made out of glass. The speaker doesn't blame her parents for not having time for her but instead speaks to the importance any adult can make in the trajectory of a glass child's life. See here.

For marriages

• Respect is probably the most important. You start out thinking you're both on the same page. Then one spouse takes the lead on health and the other focuses on career, the rest of the family, and all those other goals you had before the illness. It's easy to reach a point where you no longer share the same reality.
• It's important to realize that you're each doing your best (hopefully). But it's unfair to expect your spouse to react to things the way you do. Periodic therapy, dates, and frequent communication (about more than just illness) are essential. It's a constant — and sometimes difficult — investment.

For yourself
• A good cry is a good start.
• Best friends are essential.
• A journal helps (using the ACN Latitudes forums as a journal counts).
• You need to view yourself as an essential resource. You'd never whip and beat your farm horse and expect it to work tirelessly without time to rejuvenate. You'd feed it, take care of its health needs, show it affection and companionship, and give it well deserved rests. That's how you keep the farm running for the long run. Parents like to put their own needs aside, telling everyone they'll take time for themselves once this is all over. Truth is, for many of us this is a multi-year marathon. Self-care isn't optional. Waiting until a nervous breakdown or divorce doesn't do anyone any favors. Sometimes being selfish is the most selfless thing I can do.

See this article and reader comments on our forums here.
Please add your own suggestions!

Courtesy of Latitudes

First published in April 2013

Click here for more articles



Top of page